Making Some Kind of Peace With My Pain
During my descent into illness, all I could see was what was being taken from me. When chronic illness kept routinely shaking up my life in new and horrible ways, I started to believe that there was nothing to look forward to, and the injustice of going from perfectly fine to not fine at all was unforgivable. It’s natural to feel that way, everyone grieves uniquely, and we lose a lot in the transition from well to sick. Grieving is permitted, encouraged, and part of the process of regaining strength. It’s not pleasant to be in that place, where all roads lead away from your dreams, all days blend together because of the pain, and because of all the sadness, fogginess, stress, and panic of becoming suddenly or gradually disabled. You may in that time lose track of who you are for a second, or maybe for a lot longer, because it seems like it is all going to be taken and not one scrap of the person you were before will be left.
Surely, in this storm I will blow away, and all that will be left is the space I take up and the burden I place on others.
That is one stage, and it is not possible to skip steps in the recovery process without being forced to revisit them later.
Take a minute with me to envision what you have lost. For instance, as my illnesses multiplied and progressed, I lost my ability to work, drive, plan a schedule and stick to it, work out consistently, go where I want when I want, grocery shop on my own, pay bills, feel accomplished, cook, clean, and there is the scary possibility that I may not ever be able to have children with my specific problems. I have lost confidence, I have lost my sense of place and I have lost my mission in life. Or have I?
Okay, upon second look, yes, I have lost the ability to drive, but not my ability to travel with others and see through other’s eyes. I have lost my ability to work a traditional job, but not my ability to create a new legacy through artistic endeavors. I have lost many friends and relationships, but those were not the people I wanted and truly needed to find. I have lost the ability to plan ahead, but found the freedom to enjoy the spontaneous little joys my body does allow. There is a good chance I may not be able to give birth, but I can still have a family built on love, and maybe some day I can even adopt. I have lost confidence but then found it again in the oddest of places, like this blog and in my artwork and jewelry making. I lost a lot, yes, but the gifts that took residence in those spaces and voids in me where I felt loss and grief are astronomically more important to me now than what I lost ever was. What I have now cannot be taken away. It cannot be undone or shattered by someone or something external. I can and do still have dreams and goals, and they are not all tinged with the bitterness of “but only if I could just ____. It would be so much easier.”
Easier is not always better. It might feel better for a while, but I’m the kind of person who has always needed a challenge to rise to, a place to test my strengths and get to know my weaknesses so that they can never destroy me. Illness and hitting rock bottom emotionally, physically, and mentally was that place. With the door to my previous lifestyle, abilities, and routines firmly shut behind me, and no idea where I was or where I could go from there, I somehow found the strength to lift my head and take that first stumbling steps towards the only tiny pinpricks of light I could make out in the inky void in front of me. In the beginning they seemed either so small or so far away that the journey was certainly pointless, but still, I missed daylight and fresh air too much, so I put one shaky foot in front of the other and moved, as slowly as I needed to, as fast as I could. Sometimes I crawled with my head down through narrow passages, in the direction I thought I had seen the light, and sometimes I got lost and had to double back. Sometimes the light flickered and I felt a cold rush of terror and emptiness.
At those times, I feared I would be stuck forever in this place, and there were points where I was more certain of that than anything else, but still I wanted more, and still I crawled toward the promise of less stale air, away from the rotting dampness, and towards the possibilities that those lights represented. I imagined that when I found them they could be so many different things, maybe just a forgotten candle abandoned along the path by someone else who had gone before, or maybe it would be the full daylight streaming in through a tiny crack in the darkness. Maybe I could find that crack and widen it, pry it apart with my bare, bleeding hands, sucking gulps of fresh air into my screaming lungs.
Of course I stumbled and fell, sometimes a great distance. I fell all the time. Falling became a part of the journey, and one I became increasingly comfortable with. Go ahead, knock me over again, throw me off a cliff. I taunted the empty darkness, not out of bravery but out of stubbornness. Clinging to any surface that seemed stable, my feet learned to anticipate the road ahead a little better with each steep, scrabbling climb and desperate push to make it just one more tiny, trembling inch towards the light.
As I pulled and climbed my way through the darkness, I began to see a glow ahead, not the bright streaming light of day, but I large mass of light ahead, hazy and difficult to make out, but there, somewhere ahead of me, above me. My hands clawed at the side of the cliff face I was travelling up, searching for the edge, finding it and then pulling for what seemed like forever, my arms burning and shaking, my fingers slipping on the stone. And then I was on top of the cliff, looking back at the dizzying heights I had climbed to, so far that I couldn’t even see where I had come from. There was just the black abyss in the direction I had previously travelled in. I turned my back to the deep darkness, prepared to continue my escape, not sure how I had made it so far or how far I still had to go.
As I faced my new direction suddenly there were hundreds of lights, some tiny, some larger. I was overwhelmed by how many of them I could see, in every direction. The darkness behind me gaped open, reached out its fingers for me, but I knew the darkness was a lie now. Just like going outside of a large city to watch the stars wheeling in the sky in some dark corner of the wilderness, I was seeing what had lain ahead all along for the very first time. It had all been there already, but like the starry skies, hidden by nasty pollution, obscured by the much dimmer lights seeping out from under the doors that had long ago slammed shut behind me, and blocked by rainclouds I could not control. Every period of pitch darkness that I learned to live through, every cliff face scaled, every strange twisting path taking me farther and farther from the roads I had already traveled, had been leading me here, to the warm mass of lights joining together.
Then without knowing where it had begun, I was on a road again, a completely different road. It was a clear, brightly lid road, with others traveling along side me. I did not know how long they had been beside me, but I saw these souls carrying each other even when they themselves were weary and their feet dragged. They pushed each other forward with encouraging words, with outstretched hands, and the path became more and more filled with light. I began to follow their example, finding people who had fallen down and supporting their weight until they could support themselves again. Ahead of me I could feel the first rays of sunlight as the night began to dissolve into the distance behind me.
I kept moving, my arms linked with hundreds of other men and women who were determined that we would make it, all of us. As the sun rose higher, thawing the frozen fingers of my traveling companions, turning our lips from blue back to pink, I could see that it was not merely hundreds I travelled with, but millions. As far as the eye could see, the crowd extended, all joined together, all making sure no one fell behind. Suddenly I remembered that in the beginning, when I fell, I didn’t always fall that far, and it had been those outstretched hands pulling me back to safety when I teetered on the edge. I may not have realized it at the time, but the small candles littering my path, the tiny flickers of warmth and truth, each beating heart that extended me love, had been with me in the cold, lonely night, too. We had not seen each other yet, but we were all heading in the same direction, some crawling, some sprinting. Fear evaporated, all memories of bleeding alone in the dark overtaken by the friendly faces all around me, the warm and calloused, well-traveled hands holding mine.
From the blackness where I had first found myself, alone and terrified, to the uncertainty of the tiny branching paths leading away from everything I knew, to the first time a hand touched mine in the darkness, and finally to the moment that the sun began to rise and I knew things would be better soon, this had been a four year journey of climbing out, scraping knees and shoulders, muscles burning, hands shakily feeling out the rough outline of objects blocking my path, while my feet unconsciously learned to avoid the dangerous patches of shifting ground that appeared frequently. The many falls, the hands who helped me stand up again, the unconditionally loving community of fellow travelers who had all stumbled their way, thinking themselves alone, through the darkness. Each person beside me now was as insistent and stubborn as I was. We had not been willing to die in the valleys and ravines that life had flung us down. Working together, even when we didn’t realize it, we had found allies in those who also fled the same nightmares. The bright of the sun rising ahead of us made the long, harsh journey fall away. I could see people hugging, celebrating, and smiling, soaking in the widening rays of light as they congratulated each other. There would be other dark nights to travel through, but now we were not alone, we were moving steadily away from the vast emptiness behind us, with millions more beginning the final stages of their climb towards the daylight, and millions more up ahead.
The climb out is shorter in the end if you pace yourself, if you do not fall as often, if you survey your surroundings with purpose, resourcefulness, and an eye for opportunity, but also for danger. Making the journey meant frequently taking a moment to scan the horizon for trouble looming and for the possibility of new paths appearing in front of me at any time, in any place. It meant that I could pause, but I could never stop. Even suddenly in the middle of the darkness, there can be a new object in your line of sight that wasn’t visible just a few steps back. You don’t know what’s out there until you start moving away from the doors that are already closed and seek out the road(s) leading to what is still possible.
Up until this past year, there would have been no way to know what was up ahead, or even what direction I was travelling in. I was doing my best, but my best didn’t seem nearly good enough. All that surrounded me was loss and grief, and though I tried to focus on other things, my mind was always drawn back to the negatives. Trapped in the cage of chronic illness and chronic pain, I saw myself as useless, I imagined my future was full of only mounting grief, I felt horribly selfish for getting sick, I could find nothing to love about myself and could not see how anyone else could love me either. Things were bleak and dark, unfair, stacked against me, and I didn’t want to have to be the one who was stronger than I felt. I wanted to scream, I didn’t want to be inspirational, I didn’t want to be friendly, I didn’t want to learn mindfulness or try to be more optimistic, I didn’t want to try to build a new, healthy life within my limits because the limits seemed ridiculous and, well, limiting. I just wanted a cure, and anything less was inexcusably, woefully inadequate. And that’s okay. That’s a part of the process. Some of us stay there for longer than others. There is no right and no wrong here, and no shame, only the eventuality of picking yourself up, or taking the hands that are offered, and trying again no matter what. There’s no denying that when you feel like you’ve lost your purpose in life, it’s tough to see the point in putting one foot in front of the other.
Who knows what drove me forward out of that place, who knows what strength I dug deep to find in myself, or if it even was my strength. Who knows where I found the courage to ask for help, or to take the hands outstretched to me, when I didn’t know what I had to offer in return.
All that matters is that I made it, and that others have made it, and that you will too, one day. In the future, there will be a time when you look back, and you will see how far you’ve come and how many people have helped you along the way, and you will marvel, because wasn’t life supposed to be over? Wasn’t everything supposed to be spiraling further and further into the realm of tragedy? But it isn’t either of those things.
There are awful parts, there are many of them, and there are times when I pray for death because I hurt so much and I have nothing that helps, but from here on out, I can remember that I am always arm in arm with millions upon millions of other pain warriors. Even through the darkest night, the men and women I march with are always right beside me. They make sure I get up when I fall, they pull me along when I cannot walk, they lend me light when my own candle burns out.
There will be other doors in my life that slam shut on dreams I have held dear. Chronic illness is not the only fight I will have to survive, nor is my struggle with illness and pain over. It continues, and I continue to move towards hope and light all the same. There is no going back, there is nothing there for me. Only sealed doors. If you are in that same murky darkness, you are not alone. The paths away from the places you have been shut out from, take them, take any path, because I promise that where you are heading is better than where you have been. Maybe not tomorrow, or the next day, but eventually. Daylight is coming.
The biggest, shiniest piece of advice I have to offer on living well with chronic illness is that the company here does not suck. In fact, that person whose writing, photography, art, or youtube channel makes you feel like they truly understand you, go talk to that person! I can’t promise something magical will happen, but you never know. Magical things have definitely happened for me in the friends and community I have made online, and every time a new and beautiful friendship arises, it has started with an honest expression of admiration that turned out to be very, very mutual.
Distraction Therapy, A Guest Post For AXIS Dance Company’s Awesome Blog, And Exciting New Business Ventures
I know it’s been a while, I’m sorry to leave anyone hanging, I did not intend to abandon my blog for so long. I have been very busy while I was away from writing, I promise! One of the last things I wrote before I went on hiatus this past summer has just been published, thanks to my brilliant friend Rebecca, as a Guest Post on AXIS Dance Company’s blog. The article I wrote covers the topic of distraction therapy in relation to managing chronic pain, something I am incredibly grateful for. This isn’t the reason I have been gone, but it is something I have been wanting to write about my experience with for a long time. Though it was written months ago, when I came back to read it yesterday, I discovered that it applies even more now.
Here is the link to the post I am so excited for the opportunity to have written:
Blog Editor: Rebecca Fortelka
In the guest post, I make sure to include steps I have taken to prevent losing my creative force. There is a portion dealing with guilt that was especially appropriate for me to remind myself of this week. I also describe my top ten distractions and some of the ways I have modified those activities so that they are still possible to enjoy, maybe not every day, but regularly. I am seeing first hand that with practice, pacing, and modifications to favorite activities, you can still lead a fulfilling, richly creative life in the face of chronic pain or illness (or both).
One activity swap I have done is due to not having the energy or physical stamina to paint any more, at least for now. I was devastated at first. Losing painting hurt so much and left such a void, and my grief over not being physically capable of painting seems to come in waves. Knowing how far away from myself I feel when I can’t garden, paint, or cook, three of my more physical hobbies that used to dominate my free time, I took the opportunity to rekindle an old hobby; beadworking and jewelry making! I am loving every second of it, even with the arthritis in my hands, this is something I can do in bed or sitting up.
The reason I have been gone for so long is that I opened an Etsy shop to sell my jewelry and artwork. The shop is called The Hopeful Spoon, where I design, make, and sell Awareness Jewelry for spoonies, as well as Boho beaded creations for the free-spirited style-hunter. Some select pieces of artwork are slowly being added to the store as well. In one month of being open for business so far, I haven’t done half bad! Currently, I am averaging a sale every other day, which is about a quarter of where I need to be, but definitely gives me hope that I can meet my goal in the not too distant future.
Many people have helped me get started, and if I could continue sitting up today, I would give them each the credit they deserve, but that will have to be my next post!
For my readers, I have special spoonie discount codes, as well as two public coupons that are displayed in my shop announcement. The first code is 10SSPOONIE for 10% off of any price order, and the second is 20SPOONIE for 20% off of $50 or more! Happy holiday shopping, and thank you for checking out my newest artistic endeavors. I am loving having my passion for art back in my daily life. I hope you love the designs I have been working with as much as I love creating them. Here is a peak at just a couple of the goodies up on my new shop, with more being added almost every day:
Glad to be back here again, and I can’t wait to see what new achievements 2016 will bring.
Thank you so much for reading my guest post at AXIS Dance Company, checking out my jewelry shop, or sharing either project. I have had a happy, silly grin on my face for days despite it being a really symptomatic week.
I appreciate all the help I have been so fortunate to receive from my spoonie friends, because it is your help that my relatively good first month of business is built on.
Don’t forget the coupon codes if you head over to my shop! They do not expire until January 31st.
Hope everyone had a very tranquil Thanksgiving full of all your happiest holiday traditions.
Like any fourteen-year-old preparing for high school, Emily Lemiska felt self-conscious about her appearance. She wasn’t worried about her weight, hair or skin. Emily was self-conscious about her abnormally short neck. She asked her parents to make an appointment with her pediatrician to take a look. Emily, her parents and her doctor alike were shocked when an X-ray showed she had Klippel-Feil syndrome (KFS).
by Fibro Daze:
What Are Trigger Points
Trigger Points In Neck That Cause Dizziness
The trigger points in the neck that can cause dizziness form in the sternocleidomastoid (SCM) muscles. The SCM is a large muscle along the front on both sides to the neck. It is made up of two interconnected muscle bands. These muscle bands start out from the mastoid bone behind the ear. One band connects to the breastbone (sternum) and the other connects to the collarbone (clavicle). The sternal band lies on top of the clavicle band.
The primary functions of the SCM muscles are to turn the head from side to side and flex the head downward. The sternocleidomastoids also help maintain a stable position of the head during other body movements. Any position where the neck is held in an awkward position can create trigger points.
Another function of the SCM muscle is to raise the breastbone when you inhale. The muscle can become overworked if you breathe with the chest, rather than with the diaphragm. The SCM also assists with chewing and swallowing.
Symptoms Of Sternocleidomastoid Trigger Points
The effects of sternocleidomastoid trigger points can be amazingly widespread. Symptoms created by SCM trigger points include:
dizziness, vertigo and imbalance
blurred vision, double vision, excessive tearing, reddening of the eyes, drooping eyelid and twitching of the eye
hearing loss, tinnitus (ringing, roaring or buzzing in the ears)
migraine headache, sinus headache
sinus congestion or sinus drainage
chronic cough, sore throat
cold sweat on the forehead
continual hay fever or cold symptoms
What Causes Sternocleidomastoid Trigger Points?
Trigger points can be created by postures that keep the SCM contracted to hold the head in position -for example, looking at a computer screen or driving. Keeping your head turned to one side or holding your head back to look up for extended periods of time, are sure to cause problems. Breathing from the chest instead of the belly can also overwork the SCM muscle.
Here is a list of activities that might create SCM trigger points:
- Overhead activities
- Keeping your head turned to one side
- Forward head posture
- Holding phone with shoulder
- Stomach sleeping
- Heavy lifting
- Falls and whiplash
- A short leg or scoliosis or awkward posture
- Stress and muscle tension
- Chronic cough or asthma
- Chest breathing
Sternocleidomastoid Trigger Point Release
SCM trigger points are easily self-treated. The SCM muscle group can contain seven trigger points. The sternal division typically has 3-4 trigger points spaced out along its length, while the clavicle division has 2-3 trigger points.
NEVER massage a pulse. If you pinch the sternocleidomastoid, rather than press it against the side of the neck, you will stay off the arteries.
Follow these steps to release the SCM trigger points:
- While looking in a mirror turn your head to one side. You will see the sternal branch.
- Grasp the muscle with your thumb and fingers curled into a C shape and turn your head back to face the mirror.
- Keeping your face looking forward, tilt your head slightly down and to the same side you are massaging.
- Press only hard enough that it feel comfortable and try to discriminate between the two branches. Each branch is about as big as your index finger. If you pay close attention, you should be able to feel them separately.
- Milk the muscle with short repeated up and down strokes, start in the middle and work your way up to behind your ear and then all the way down to the collarbone.
- If you find a spot that hurts, gently pinch the trigger point. Reduce the pressure until you don’t feel any pain. Once you’re below the pain threshold, slowly increase the pressure over 60-90 seconds.
Do this on both sides, a couple of times a day. Just go easy at first, and work at a pressure level that feels good for you. For a visual demonstration, you can watch the video and learn more at the original post, linked below.
“Disability doesn’t make you exceptional, but questioning what you think you know about it does.” – Stella Young
The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.
If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy to be helpful whenever possible, but I don’t want ableist individuals thinking that my refusal to cry in a corner every day makes me somehow better at being sick than someone who can’t stop sobbing and wishing for death. I am not any better.
I am not “trying harder” than anyone else and I will not be used to shame someone who feels like they can’t handle their condition. I still feel like I can’t handle being chronically ill on a regular basis.
I am not your feel-good story. I am a deeply flawed human being with constant, unrelenting chronic pain and many other debilitating conditions and symptoms, too. My choices are give up and die, or keep trying to find a reason to wake up and to put food in my mouth once a day. Sometimes that is a genuine struggle. Sometimes I do not get out of bed, and I do not put food in my body, and that does not make me pathetic or weak, it makes me sick. I have good days and bad days and I have given myself permission to have both.
I am so very tired of inspiration porn, aimed at the general public and unapologetically using those who are physically disabled, suffer chronic pain, or live with mental illness and/or neurodivergence. Inspiration porn wants you to say “well, it could be worse, I could be that poor person in a wheelchair or that teenager with a cane, therefore I’m not allowed to feel shitty, ever.”
I am happy to answer any and all genuine questions about my life, my coping strategy, my illnesses, or anything else that someone is interested in, provided that the person asking is not just going to use my answers against me later. I am not interested in answering questions that are actually just thinly-veiled judgemental commentary on how I deal with my pain and other symptoms. I wish that my abled friends could just acknowledge that my reality is not something you can comprehend if you don’t live every second of every day in pain, knowing that the pain is life-long or progressive.
If you are not sick in a long-term sense, please try to understand why you cannot compare my life-altering, completely debilitating daily pain to the last time you had the flu, or the time you broke your arm, or even the car accident you were in, unless one of those things resulted in a long-term illness, disability, or chronic pain disorder. Flus, broken bones, and car accidents may be unpleasant, but after some healing your life resumed as planned, so you have no idea what it is like to live in my body, the body that has caused me to slowly, against my will, forget all my dreams and plans for the future. Please realize that every pain is experienced differently and is unique to each individual who is suffering. Comparison of one disabled person to another person, disabled or not, is never okay. We are not brave for the things healthy people think we are brave for. We are not brave for simply existing, we are not brave for going about our day as normally as we possibly can. Attitude does not differentiate a “good” cripple from a “bad” cripple. Inspiration porn is pure victim blaming, and society has unfortunately picked up this nasty habit.
Ableist propaganda would have us think that if we are not using our illness to transform ourselves into an inspiration, we are just wasting space and burdening those around us. Do not buy into that trash! I am sorry for each and every person who has ever felt like their pain or illness is the punchline to an ableist joke. Those of us who are ill are allowed to make jokes, we are allowed to seek out the humor in our situation, and it is despicable that people would use that coping mechanism against us. Yes, I use sarcasm to cope. Yes, I use humor to cope. No, that does not mean I’m cured or experiencing less pain or “getting better at dealing with it” as so many have said to me. It means that if I don’t laugh about this, it will crush me.
My medical decisions are not up for discussion unless you are another spoonie, and even then, I retain the freedom to completely ignore any and all medical advice that doesn’t come from my doctors. I even retain the right to ignore medical advice from doctors that does not make sense or goes against my beliefs.
I certainly won’t be basing my medical decisions off of an abled friend’s (ex-friend’s) suggestion because they feel like they have “observed my pain” (read: been annoyed by how much I talk about it) for long enough that they are unreasonably comfortable making sweeping declarations about my use of medication, or with stating that I “pity myself” (read: retreat from overwhelming and triggering situations so I can take care of myself appropriately) sometimes. Fuck yeah, I do pity myself sometimes. I refuse to apologize for that.
The abled seem to possess an unlimited capacity to confuse my online and in-person honesty and unwillingness to sugar-coat reality with what they view as pity-seeking behavior and weakness. Saying I have an incurable illness is not pitying myself, it is the truth. I am allowed to speak the truth, my truth, and I am allowed to remark at the depressing reality of chronic pain. Ableism makes accepting the reality of our illness that much more difficult. If I said I never have moments of self-pity I would be lying, and that helps no one. I have every right to be upset about my conditions and to grieve over the losses in my life as a result. And so do other spoonies at any point in their journey.
It is just grotesque that there are people self-righteously using those of us struggling with mental illness, cancer, or chronic invisible illness (to name a few) as their motivation, or to shame others with similar struggles. I don’t want my accomplishments to ever be used to make someone feel inadequate.
The myths that are perpetuated by inspiration porn make it harder to be honest about what we as spoonies experience, which is why it’s time to start calling ableism out wherever and whenever we see it. Just because one person with MS can work a full time job does not mean that another MS patient is faking their inability to work. It’s such a simple thing, to validate someone, yet we don’t do it enough.
You wouldn’t worry about being polite when calling out racism or homophobia, so why would you worry about offending people when you call out their discriminatory attitudes towards chronic illness, disability, neurodivergence, mental illness, and chronic pain?
But I have (mostly) managed to keep up, which is no small thing to me at all! With all the pushing myself I’ve been doing, I’m ready for the much needed rest I will be taking starting today.
This week has been action-packed for me, although for a healthy person it certainly doesn’t sound like much. I got to spend a whole day out of the house at my mom’s wedding reception, and then made it all the way to the teaching hospital and back two days later with her help, and then on a very short grocery shopping trip later that night with my boyfriend (where I was so out of it that I bought pretty much only chocolate, hahahaha). Two days later we made smoked pulled pork, homemade macaroni salad, and dinner rolls from scratch (all incredibly cheap but incredibly perfect for sharing with a crowd, which we have gotten smarter about now that we are super broke!). We took the food all the way from our house to the part of Oregon I grew up in, which is about an hour drive, and I did not collapse or fall asleep somewhere during that trip last night, but I had to sit out the games because of how unstable my joints are and how bad my head and neck are already hurting. I have been using the preemptive rest method to gain some strength ahead of events I know are going to sap me of energy or take a great deal of time and probably a bout of extra pain to recover from. It’s difficult to recover from that much activity while I am still steadily decreasing my dosage of Lyrica (down to 1x 75mg pill per 36 hours!!!), but I will recover. It will take a while, but I had fun this week and saw my mom and even my extended family, so it’s worth it!
Resting consciously, including not overdoing it mentally and avoiding sensory overload, has really helped me this month, but it has meant that I cannot do nearly as many things as I would usually force my body to do, especially when it comes to gardening and housework.
The next step which I will start along with the rest is adding more stretching and walking for five to ten minutes at a time back into my schedule, but seriously every part of my legs hurt right now, my feet feel bruised from standing yesterday, and my knees are throbbing, none of my joints want to stay in their sockets and none of my muscles want to help them out.
I had a pretty extreme limb tremor last night in my right leg that lasted for almost twenty minutes, and that twenty minutes of having a rapidly spasming/twitching/bouncing leg has left even my fingers exhausted and all my joints stiff from trying to force my muscles to relax and stop freaking out, which ironically made me tighten up even more throughout my entire body. The tremors aren’t really painful or a problem in and of themselves, they are just not my favorite to deal with in public, and it does make my leg prone to giving out on me if I have to walk while it’s happening.
My real problem is my mouth, I have severely swollen gums and an impacted molar on my right side as well. I have an unusually small mouth and have no idea how I never needed braces growing up, but my teeth have always been very straight with no gaps and only some flouride damage to deal with. In the last several years, things are different, and the overcrowding is causing problems left and right, and could even be contributing to my TMJ disorder, migraines, and neck pain. I don’t even have enough room for all my normal molars to come in, so I have been dealing with the pain of teething for as long as I can remember. I not only need my wisdom teeth removed (holy hell, I need them gone so badly), but I also need some of my molars to be taken too, especially this very swollen and impacted one that has finally poked most of the way through my gum but is now pushing the molars in front of it sideways. Getting all those teeth out may even help with the severity of my jaw clenching issues, which when tested at PT have ranged between 7x and 30x more tense than an average person’s jaw, and that was while using every last relaxation technique and cognitive behavioral therapy.
The challenge will be finding someone who is skilled at dealing with patients with severe TMJ, and then I magically have to be able to afford it. The jaw pain has been getting worse and worse, and to have an impacted or worse molar is excruciating, especially that close to all those sensitive nerves in the back of my jaw. I’m used to my face hurting pretty awfully because of Trigeminal Neuralgia, so I am able to tough it out most of the time but sometimes I just want to rip my teeth out myself they hurt so badly. Now is one of those times. It’s even affecting my ear on that side.
To make my time eating even more fun, because TMJ disorder and dislocations and messed up teeth weren’t enough, in the last month or so I have developed some awful and nearly constant food allergy reactions. I have sores on my tongue and a sore throat that never fully goes away, and my lymph nodes are angry at me after every meal. I only eat once a day, and I have cut out a bunch of foods including all acidic fruits (goodbye homemade marinara sauce, goodbye morning smoothie, you were nice while you lasted) and anything with vinegar (goodbye kombucha and all my favorite homemade salad dressings), beer/cider, yogurt and sour cream; seriously so many things are gone from my diet, that’s not even close to the list!!! And even cutting all this stuff out, I’m still having issues every day with these horrible sores on my tongue and throat. I obviously need an allergist as well as a dentist at this point, but I can’t afford it with my insurance deductible not being met yet.
Basically my mouth is full of fire and I have no appetite and I am having trouble eating even when I want to, so maybe I will finally be losing some weight until I can see a few doctors? That’s the most optimistic thing I can think of right now, because seriously, this sucks. I need medical help. I have needed it several times in the last month and not been able to go because I simply owe too much money to everyone after three years of not being able to pay my bills. There is no hope for money coming in, and I am just in too much pain to brainstorm ideas or set up a kickstarter or re-apply for disability again. Blegh, so instead of thinking about any of it, I’m gonna go back to resting and reading. I am way too overwhelmed, and I know part of that is just sheer exhaustion and needing to recover from the constant setbacks of over-activity every few days for the last week and a half. I will regroup and hopefully have a plan of attack… although right now I’m very much stumped.
Days have been slipping past at alarming speed, and I’m constantly confused about what day/time it is and even where I am, but I’m learning to let go, or at least I’m trying to learn. Right now all my body needs is for me to respect it, listen to it, and try to figure out what the hell I’m allergic to on my own. Worrying about my memory is just going to stress me out even more.
On a lighter note, my psychiatrist says I am making progress lately, and that fills me with hope and even a little pride and self-love. She also complimented me on my skin and hair, which I really have been taking much better care of now that I’m using a homemade grape seed oil, baking soda, dead sea salt and epsom salt scrub with calendula petals from my garden. Grape seed oil is the queen of all lightweight skin moisturizers for sensitive and/or oily skin, and no weird reaction after I put it on like when I use any store bought lotion, no matter how “organic” or skin-friendly. I get a 16 oz bottle for $7 using the Amazon subscribe and save program, I really like this one from NOW Foods:
For my hair I made up a dry shampoo in about 30 seconds from equal parts bentonite green clay, indian red clay, and arrowroot powder, and it helps keep my ridiculously long locks from tangling, or looking limp and lifeless between showers. My scalp seems to really appreciate it, too. I love having both recipes on hand, but it would still be nice if I could shower more than once every three or four days. Working on that, though. I think if I just get a big fluffy bathrobe and put it on as soon as I get out of the tub and go lie down for fifteen minutes, I would probably be dry by then, and maybe saving the energy on drying off would allow me to get clean more often. Oh, spoonie problems. I’m past the point of pretending now. I’ve realized it’s entirely necessary that I make some changes to my lifestyle in order to retain what independance I have. Ignoring things that would make my life easier is no longer an option. Now it’s just a matter of finding enough money to make the modifications I need, and figuring out what actually helps me live a better life.
All I have kept down today is coffee, water, and crystallized ginger, and barely on all three. Even the ginger can’t save me from this nausea, pain, and extreme fatigue, coupled with dizziness and eye issues. See, I tried to be positive and distract myself from the reality of chronic illness, but then I took it right back to how bad I feel because it’s literally all I can focus on right now. I’m just getting through one hour at a time right now until my body catches up. I know others can sympathize with that sentiment, but I would never wish it on anyone. Nobody should have to understand, because no one should have to deal with this all the time.
When I first came down with an invisible illness shortly after being in a car struck by a semi-truck, things looked pretty bleak.
My thought process after six months of dealing with the constant doctor visits and physical therapy, with the pain, fatigue, and fevers, was that either me or my illness was gonna go. Both of us were not gonna share this body.
Fix it or kill me. That was my motto. I could not conceive of a world in which I could not work, but in which I still had value. Value despite a dollar amount I was bringing in. No part of me wanted to accept that I would have to learn to live with this, or that my life not only had to be paused, but also that I may never be able to participate in the same ways as before no matter what I tried to cure myself. We hadn’t even started talking about disease processes or autoimmune or anything at all other than injury from the car accident, but I was frustrated that I just kept getting worse the more work I did to heal.
On the days in between flare ups, before I knew what a flare up even was, I insisted to myself that I was cured, and I was horribly let down and unprepared for every single episode or new symptom that manifested.
When people told me it would be easier and better to approach my illness from a place of positivity, I was furious, because they were making the assumption that I wanted to live with pain in every part of my body, and I really did not, at least not at that point. I had just recently been perfectly healthy, my body and brain up to any challenge set in front of me. How could I adjust to being so drastically limited and in so much pain I couldn’t even drive or work a full shift? It truly seemed impossible.
It also felt like when people tried to encourage me to make peace with all the unknowns and all the debilitating symptoms they were implying that mind over matter would cure me, or at least allow me to live a ‘normal’ or fulfilling life. Again, a life without a job and my recently hard-won independence seemed so completely unfulfilling. I went straight into defensive language, outbursts, and isolation at the first suggestion that somehow I was expected to be strong enough to cope with physical weakness, fatigue, pain, sensitivities to sound, light, chemicals, smells, and touch, energy crashes, cognitive dysfunction, lack of ability to work or drive, and the accompanying guilt and grief that go with losing your place in life right after you gain autonomy over it for the first time. I could find so many more reasons to be upset than to be optimistic. It felt like everything I loved had been ripped away, like all my choices had been taken from me. Of course that isn’t true, but for newly diagnosed or undiagnosed pain patients, especially at a young age, it’s entirely common to feel like it is the end of your life and nothing good will ever be possible again unless it comes packaged as a complete and total cure. The temptation is to retreat and hope that you can pick back up again where you left off when you feel better, and that’s acceptable with temporary injuries and illnesses, but with chronic illness there are often no “feel better” days, and there is only so much hiding from life you can do before it becomes apparent that life is going to continue, albeit differently.
I still have moments where I think I can’t handle it, and weeks where everything spins around me and I hope hope hope I will still be okay when it all lands again. I still fear for my future, I fear for my relationships, and feel insecure about my lowered libido, frequent whining, fitness level, and inability to contribute financially. Those things are part of being human though, if I didn’t experience some guilt and upset over them, I wouldn’t be me.
Amazingly, I have learned a lot through illness. I have learned to be patient no matter how uncomfortable or unhappy I am. I have learned to take care of and prioritize myself even when it feels selfish and lazy. I have learned that internalized ableism is what makes me feel that way, and that ableism does not do me any good, especially not when it has become a part of my own thought process. I have learned the importance of asking for help, though I haven’t quite mastered actually asking for it. So much has sunk in; things that I was resistant to when fibromyalgia and chronic fatigue syndrome first reared their heads. I wonder if I am even the same person anymore, but not in a totally negative way.
I have learned above all that there is not as much wrong with me as there is with a society that teaches people to base worth off of income earned, sexual intensity, physical ability, and even intelligence. There is nothing wrong with having an excess of one or even all of those things. But there is nothing inherently better about possessing those things, either. Except that it certainly makes your way in life a lot easier to have money, health, sex appeal, and unlimited brainpower. Maybe that’s what I like more about myself now; it’s not that easy anymore, I can’t just draw on one of those things and call myself a better person for having it. I can’t reassure myself with meaningless attributes, and that is its own kind of blessing. I have to concern myself instead with things like courage, persistence, kindness, and even that elusive thing we call happiness. Amidst all the pain, being ill has given me something wonderful; it has allowed me to seek out those true, meaningful, beautiful traits in others, regardless of what value society has assigned to someone.
I’m actually surprised that the person I was ten years ago has grown up into a person who does not hate herself and who rarely wastes energy on disliking others. It’s a pleasant realization. I really believe I must have hated myself to treat my abled and active body with such disdain, and to have thought I was so boring when my life was always so full of unique friendships and passions, and to have constantly been comparing myself to others and feeling so shortchanged. Not to say I don’t have moments where my body is a source of insecurity, and I certainly get frustrated with the slow, meandering pace that my brain operates at now. Somehow though, over the years, the negativity has become tempered with “but tomorrow I will be grateful for what I do have”.
A lot of my current (relative) level of peace has to do with getting almost all the way off of Lyrica and starting to paint again (more about that soon!). A lot of it has to do with this blog and the wonderful people who have introduced themselves and the strong sense of community that lives here. Also through the groups I have been invited into because of my writing here. A lot has to do with therapy, some of it with self-therapy techniques, and some with the actual, lasting progress I have made along the way. It’s easy to look back at three and a half years of illness and feel overwhelmed with all the life I have not lived in that time. I had planned to have a career and a child by now, and perhaps to have bought my house.
Ten years ago, I would have only seen that big dark cloud of not measuring up materially to the person I had set out to become, and I never would have noticed all the glints of silver lining to be found from where I’m standing in the rain. Three years ago, I feared there was no happiness or peace to be found amongst the terror and the overwhelming nature of being sick in my early twenties. Two years ago, I knew that others lived with diseases and still had fulfilling lives, but the knowledge just made me angry. A year ago, the knowledge that others out there were dealing with similar things and did not want to die every single day started to give me hope, and this blog helped me find those people and learn the self-acceptance that I needed so badly.
Now, I want to start to figure out what I can do to give back, but I have taken a pretty big set back this week by conscious overexertion so I could spend time with my family and my mom while she was visiting Oregon for ten days. During my recovery from this, I will be writing more and pondering what I have to contribute, and where the chronic pain community would be best served by what I do have to offer.
Thank you for reading my blog, thank you for reaching out to me, thank you for being so understanding and gentle, and so patient. I couldn’t have done it without you.
Moongazer commented recently that it doesn’t matter where we are geographically, we spoonies can still find and comfort each other no matter where in the world we are, and I couldn’t agree with her more.
In fact, getting to network with people who live with and work around other health systems is beneficial to all of us. We all need to know what specific problems our spoonie friends in other countries have to face. None of us should have to fight the system alone. Ever. Together we can solve complex problems within our healthcare systems, but it takes a lot of networking and a willingness to learn what others are up against, especially in countries where it is very hard to have an invisible illness. I know it’s hard everywhere, but I also realize that I am extremely lucky to live in the US, even if it means I have to wait five years for disability to be approved, and my healthcare kinda sucks, and my pills are extremely expensive and the treatments that will most benefit me are either non-FDA approved (read: EXPENSIVE and hard to find and makes you look suspicious on your medical record), or they are off limits because of this crazed witch hunt involving chronic pain patients and opiate use. A topic for many more blog posts, for sure, but not the topic of this post.
Bottom line, others have it harder than I do by far. I don’t just mean that others are in more pain or have more broken bodies than mine, although that is also very true. I do mean that many fellow spoonies have no roof over their head, no access to the internet, no support networks, no disability to even try filing for, no access to any treatment or meds, and often no access to diagnostics either. The minor annoyances in my life, like not being taken seriously, is a major roadblock for someone who still needs a diagnosis, still needs at least one doctor to take them seriously and at least try to help them. What about places where new chronic pain research has not been circulated? So much of our knowledge of where the pain comes from and how real it is have changed, but without the benefit of that knowledge, many suffer inhumane hospitalizations for psychiatric disorders they do not have.
Moongazer’s sweet comment also reminded me of how my psychiatrist asked me if I knew where my blogging family lived and I looked at her like she was the crazy one, but the question also caught me off guard; I felt suddenly so defensive of all of you. We are not some mass hysteria, thinking everything is a conspiracy and no one in real life understands us. Instead it is more like huddling together for warmth with people I am actually proud to call my family, only on the internet. It is a chance to read about others who handle pain differently, to get to know them through their clever words and their important stories. It is a chance to comfort those who are newer to the chronic pain community, and reach out to people who I have admired as writers for years. Who could pass that up? Not I!
Why does it even matter? I have friends that live right down the block that I talk to way less than you guys! I also talk to my family less than I talk to fellow spoonies. I don’t mean for that to sound sad or complainer-y, but just that it is so amazing to have contact with a vast array of talented, witty, and inspirational individuals who do not force me to justify myself and who accept me as I hope to learn to accept myself.
I was very lonely, I won’t debate that, but I didn’t come here specifically to meet new friends. In fact, I thought I would be the worst whiner, off in the corner, unable to meet anyone because I was too bitter and angry. Being around people who understand has washed away the empty, bitter angriness, and replaced it with joy and determination. That is what my blogging family means to me, and so much more. I am beyond grateful for your support, patience, and kindness as I work through things that many of you have figured out long ago. It is such an honor to be allowed to learn from and reach out to others who live with chronic illness or chronic pain, and to see firsthand how strong we truly are together. ❤ ❤ ❤
Though I have to admit, now that I’ve been asked, I am curious as to how far apart we are spread. I would love to know what state or country everyone is from! I’m a proud resident of Oregon. The Pacific Northwest is beautiful and won’t let me leave for too long, though I’ve lived in Massachusetts and Indiana as well. I was born here and I love this state!
Drop me a quick comment and let me know where you live, I can’t wait to see where we all are from.
I guess having Chronic Fatigue Syndrome renamed to Systemic Exertion Intolerance Disease has made me think a lot. Things like the fact that heart rate monitoring to stay within my energy envelope may not be a bad idea after all. Things like naps are okay, acceptable, even encouraged. I won’t miss out on anything while I sleep; it is okay to sleep enough. Preemptive rest is a strategy that seems to work for things like stressful days, birthdays, vacations, holidays, house-guests, and other events for certain SEID/ME patients. I don’t have a chance in participating in most of that stuff right now, but I’m trying. I’m saying yes more often, and really pushing myself to work as hard as I can to get this skincare business started.
On another note entirely, my business partner and dear friend, we will call her Kayla and her boyfriend Jeff, asked me to be the next in line to take care of their little man and raise him in case the unthinkable happens and they are not around. He’s my favorite little kid, I didn’t realize how hard I would fight for kids of my own until I met him. Kids of my own, by the way, is fully open to the notion that adopting counts. I just want to be a mom.
I ask Kayla all the time what each thing she does is, why she does it, learning, trying to osmos all the wonderful mom-intuition she has and the beautiful bond her child and she have, even at 7 months. I’m so beyond flattered that despite my being not well, and her fully knowing the details of that, she trusts my dedication to being a good mom. She and I both grew up with less than ideal adult support, to put it mildly. It is important to both of us that her son have a community to grow up in, who love him and are invested in his thriving. Being around him makes me feel alive, makes my pain decrease, so even though I can’t safely get pregnant for a long time, I am planning, learning, and readying myself mentally for what I consider the most important job of my life. I know it might not be the journey I expect and that is okay. At the moment, any plans for pregnancy are on hold; I have to keep in mind the drugs I am trying to get off which are severely damaging to fetal development. I have to consider danger to the fetus and myself if I have EDS type III, and I have to consider my own genes, how bad they might actually be, and whether I can let another human suffer like I do on purpose. That question is a heartbreaker for me. I carry things that only an insane person would try to have a kid knowing. On the other hand, I also know that with my spina bifida there wasn’t much chance that I would be a merit scholar, have perfect SAT’s and extremely good ACT scores, or be in the %99.9th nationally on standardized testing, but yet, that happened. I can’t rule out the possibility for a miraculous exception to the doom and gloom statistics that have been thrown at me.
Today, I am excited that now I get to be Aunty Jessi, and that just makes me heart siiiiiing. I never in my wildest dreams imagined I would go to sleep today feeling so loved and included by my friends, and feeling such a swell of love back in return. Talking to other bloggers always gives me that sense of wellbeing as well, but being asked such a huge question by someone I admire so much left me bawling happy tears for hours, waiting for my boyfriend to get home so I could tell him.
Oh! I folded towels without getting so dizzy I thought I was going to pass out. Super exciting, I know, but that’s a step up from the last few weeks, for sure. But I did wake up this morning and immediately start throwing up as soon as I took my pills, for at least the first half hour I was awake I couldn’t stop, or stand up. Not sure what’s up with that. Not too worried, either.
My body does weird stuff!
Expect the unexpected!
Something like that.
So much happiness gifted to me by my friend Kayla’s trust and confidence. So much work to go, yet, before I feel worthy of that.
I guess they can change the names all they want, but in the end, I’m not ready to give up or accept my limitations.
Blog For Mental Health http://blogformentalhealth.com/ is an official project set up to help raise awareness for Mental Health education through the stories we share on our blogs. The aim is to educate and eradicate stigma. To become a part of the project, all you need to do is write a post and take the BFMH pledge.
“I pledge my commitment to the Blog for Mental Health 2015 Project. I will blog about mental health topics not only for myself, but for others. By displaying this badge, I show my pride, dedication, and acceptance for mental health. I use this to promote mental health education in the struggle to erase stigma.”
I found this little encouraging poster for those of us with chronic pain or chronic illness experiencing some of that unpleasant guilt factor:
This pledge to Blog for Mental Health is perfect for me, as I am always attempting to combat the stigma that chronic illness carries, especially that which is lobbied against chronic pain patients. Much of what is thrown at me by way of an excuse for a doctor or nurse to not treat my pain is that my anguish is “all in my head” and therefore they have no responsibility to help me. I think that’s bullcrap, even if it were “just in my head”, where does a doctor who is not a psychiatrist or psychologist or any mental health professional at all, get off deciding that arbitrarily? It seems like having a psychiatric disorder severe enough to cause me to feel severe pain for no reason whatsoever, pain coming purely from my thought process; that wouldn’t be the kind of issue a doctor should just brush off so arrogantly, so hurtfully. What those doctors, one after another, were really saying was “you just need to toughen up and get over it, or you must be faking your problems or exaggerating a lot.” How much trust do you have in the healthcare professional who has sympathy for neither physical nor mental pain? Zero, the answer is most definitely ZERO.
Mental health and chronic illness go hand in hand, especially when pain is involved. It automatically becomes more important and more difficult to maintain our self-worth and sense of value. There is inevitable guilt, grief, and even moments of complete terror and helplessness to be worked through when living a life with chronic illness that sets limitations on us and impacts our daily life. It changes everything to be sick. In light of all that upheaval, it seems pretty clear that we cannot fully achieve the kind of healing we are looking for, whether that is complete recovery or simple acceptance, if we don’t address our conditions from every possible angle, with a major focus on supporting mental well-being for those managing chronic conditions.
I do try to be as emotionally honest as possible in this blog, but from now on I will be paying extra attention to making sure I fully and accurately convey the feelings that I am truly dealing with, rather than the feelings I wish I was having. That will force me to start identifying my own emotions more, which can only be a good thing as it will help me discover patterns and triggers, which is a major goal of mine this year.
In addition to taking the pledge to Blog for Mental Health, I promise to spend more time reading and commenting on fellow mental health bloggers’ work, and will seek out new research and interesting coping techniques, while striving to be more open about my own mental health journey in the process.
To kick this off, it seems logical that I state clearly that in addition to my many other invisible illnesses, my diagnoses include several anxiety disorders (well, more like all of them…), PTSD, depression, and ADHD. There’s more, I feel like, but I’m distracted by the fact that I usually don’t like to write down that I have depression or PTSD. I have always believed that they are my fault, some massively shameful character flaw that I could (and should) just ignore until they go away. That view has changed, but it still doesn’t sink in that I do not need to feel guilty or ashamed of those parts of myself. Slowly, ever so slowly, I’m relearning everything I thought I knew about mental health and I am getting used to taking it easier on myself in the process. I didn’t choose mental illness, or chronic pain, but I am doing the best with what I have been given.
To celebrate being involved with this wonderful project, I will be updating my Resources page with several mental health subsections with support groups, research websites, and anything else useful that I can dig up around the web.
Hope this finds you in a low pain day, beautiful spoonies. ❤
Wow, I sure feel like an idiot. Also I’m miserable, so whatever lesson I was supposed to learn, I think I got it now, universe! Seriously, you can stop!
Until last night around midnight, I had not slept for 68 hours. At all. I don’t usually end up forfeiting more than one night at a time to Chronic Pain, but this time she went ahead and took two full nights from me, and then some. Bitch. Anyway, I was hurting from trying to have one of those as-enthusiastic-as-before-I-got-sick nights of fun with my boyfriend, but ended up accidentally injuring myself absolutely everywhere while we were at it. Waking up a couple hours later on Sunday, I realized there was no way I was going to be able to get out of bed at all unless I got up right then and there, so at 5 am on Sunday, Chronic Pain began her longest winning streak against my sleep since the car accident.
I don’t remember everything from this entire time period, and you can kinda see why in the picture!
I know I laid down to go to sleep both nights, but that both nights, nothing happened, so rather than stress and get frustrated in bed, I got up and paced around the house, smoked a cigarette, drank a glass of water, wrote in the hard copy journal I sometimes keep, did light stretching, self massage with the DaVinci tool and the back buddy, and ten minutes of breathing. Still awake. Okay. Rinse. Repeat. Rinse. Repeat. Damn it, sun is shining, guess I am up for the day. Same thing the next night, only I was in even more pain and way more loopy, and my limbs were shaking and sore and muscles all over felt torn and limp.
I was wall-walking, which is how I navigate my house when my balance and motor skills start to go, or when my vision is not what it should be. Unfortunately I had just moved a bunch of furniture earlier in the week to create more open space in the living room for my business partner and I to actually get some work done and set up the play pen for her little boy. Instead of guiding myself to the couch with familiar furniture, I ended up with one leg collapsing out from under me just as I took a step, then realized I didn’t have anything to grab onto. So my nose grabbed onto the side of a table or just the floor, I’m not quite sure, and I blacked out for a second (actually have no idea how long I was out…), came to on the hardwood floor in my living room, close to the couch, but not close enough, and realized that my hand which was cradling my throbbing nose was full of hot liquid. Shit. Shitshitshit. “Chris! Hey… honey, can you help me?” I remember calling loud enough to wake him up as I made my way towards the bathroom. The bleeding took kind of a while to stop, and for obvious reasons after knocking myself out like that, I couldn’t go to sleep that night either. Yesterday crawled, I kept nodding off until my cortisol levels caught up with the day again around one or two pm. Coffee couldn’t help me, but I kept trying. I was so excited to sleep last night, finally, that pain be damned, I had already done an hour of relaxation including meditation, visualization, gentle yoga, and working on my breathing, so I was out cold in under 5 minutes after crawling beneath my pile of blankets. I woke up at 5 am to my right leg screaming painfully at me because all the blood had for some reason stopped moving around in it, and it was throbbing and immobile, and hurt like I always forget is even possible, all my toes twisted and curled up in unnatural positions. I had to stretch the toes out by hand after I dragged my dead leg over the side of the bed and mostly succeeded in not screaming when it hit the floor. Excruciating is the only word for trying to get blood pumping in a limb again once it has pooled there. So even last night, though I slept, I was up and down again.
And that’s what my black eyes and nose looked like when I woke up this morning, so I won’t be leaving the house for a bit unless it’s an emergency. Haha, embarrassing!
If this cycle is going to keep repeating as it has been for the last year or so, I am going to need some kind of pain relief, obviously, to make it possible to sleep during flare ups at the very least, so I can break the cycle. Being able to sleep is the only way to begin to crawl my way out of a severe long-term flare up. Haven’t I shown that I’m willing to try anything and everything, haven’t I given it all a real try? What works best should be available to me, but it is not. This whole demonization of opiates has hurt so many innocent bystanders, and it has hit the chronic pain community so hard that many of my friends who were on pain contracts and have been dropped recently have reverted back to unhealthy coping mechanisms and self-medication. After years of success working with their doctors they are being treated like junkies, and I think being treated like that actually produces more addicts than anything. Anyway, tangent over, back on subject: I usually (since the car accident anyway) cannot sleep at least four nights a month because of pain, and I have accepted and adjusted to that. Unfortunately it’s been more like six or seven nights just in January so far, and that is starting to increase my pain even more. This is one giant vicious cycle that I want out of so badly. I don’t sleep or nap during the day, it’s part of the mystery with my case, and it confuses my doctors a lot, but to me it’s just my personality. I also can’t “catch up” on sleep from one night to the next because sleeping extra hours equals severe pain that I have learned the hard way to avoid by setting an 8 am alarm, just in case I manage to sleep in that late. My schedule is as consistent as my pain allows and I thought I was improving, but this latest increase in pain and accompanying strange ramping up of other symptoms has left me concluding that was just hopeful optimism.
This week in particular the meds that are supposed to make me fall asleep and stay asleep are making me feel wired and wide awake, and the meds that are supposed to help me focus and get through the day are making me want to curl up in a ball somewhere dark and sleep it off. That makes it hard to want to take anything at all, the only thing that keeps me on my regular maintenance doses of everything and keeps me slowly decreasing the Lyrica is knowing how awful the withdrawal effects are on top of an already painful day (previous experiences where I thought I had taken my pills, only to figure out the next day, in extreme pain, that I had actually missed one or two doses, or accidentally falling asleep with nothing on board, or thinking that I was magically cured for a day and not taking my meds. Oh, how I have learned).
Lately my whole-body pain has increased, as have my migraines, and though I have met this change by continuing my small exercise regiment and getting up at the same time, eating healthier and limiting my caffeine and sugar intakes, it has just continued to roar brighter and higher, an ever-increasing, agonizing bonfire blazing across my brain.
I have found that beyond a doubt, not a one of my current meds helps with breakthrough pain or flare ups. and I have to wonder how I am supposed to be increasing my activity levels and taking on more and more responsibilities while I am just getting worse and there is absolutely zero relief from the resulting negative impact on my health. Being in so much pain that I can’t even catch an hour or two of sleep is just unacceptable. I’m not headed for better health by pushing myself like this, I’m headed for new scary/weird symptoms, extra agony, and perhaps even total physical collapse.
I have been saturating myself in a mixture of all of my topical treatments combined into one super-pain-gel, with extra crushed up arnica tablets, drops of essential oils, high CBD/CBG hemp oil, castor oil, and everything under the sun that is considered a pain-killer or anti-inflammatory. I whip this concoction up often when I am in more pain that usual, but this time it is not working as previously, so I called up my compounding pharmacy to find out how much ketamine they can cram into one of these creams for me. Turns out, three times more than is in there right now! I am so relieved, that might actually help me! They also add something called LDNs to topical treatments, and if anyone has any experience with LDN’s either topically or orally, for chronic fatigue or fibro, please, please, PLEASE leave me a comment with your take on it! I am fascinated.
My boyfriend actually found the article about them as relating to fibro pain, so thanks to him at least I have something new to try that doesn’t necessarily have to be ingested (my kidneys need a break!). I am really encouraged that he researched my situation enough to find that potential solution! On the other hand, there is still no verbal reassurance from him, no open communication, no emotional honesty from him, and no two way conversations. Just…. Trying not to be so upset about how I think he feels towards me and focus more on how I feel towards myself. In the end, in order to be in a true relationship I must have the strength within me to keep trying to thrive, all on my own. My strength doesn’t come from him. Even if it would be so nice to have his verbal support, not having it won’t kill me. So progress has been made on my side in the relationship, and some progress and gestures have been made on his part. I have been kind of cool and reserved towards him, and that’s because in between my own bouts of emotional honesty, I have noticed how there is never a reply from him, never any comfort besides physical, and unfortunately I can’t always tolerate back rubs, hugs, and tilting my neck or moving my jaw for kisses. Plus, with all my abandonment issues and PTSD, I have to be careful to disengage from my most co-dependent behaviors, such as changing my emotions to suit his mood. The goal is to do this without hurting his feelings, but it’s rough. It’s hard to explain to him why our relationship is less healthy than is ideal, and it’s hard to keep pushing for what is better for both of us. I got us into this mess by dragging so much baggage, trauma and emotional damage from my childhood unknowingly into our relationship. He did not choose to be in the role that he is in now in our relationship. I just keep talking and hoping some of what I say is making it through and hitting its mark, because I have no way of knowing for sure. Sometimes my own fears cause me to act out, and that seems to be the case here. The reality is that he does many small sweet things, he tries, he wants me to be happier, he wants us to keep working towards a better tomorrow. Even if he doesn’t know how to communicate it at all, and he doesn’t know how to say the words I need to hear from him, he loves me. There is so much room within that love that together I know we can shape our relationship into one that is truly honest, content, respectful and forgiving. We will get there, that goal is a lofty one even for a couple not dealing with Chronic Pain. On this issue, Pain can kiss my ass, that jealous creature is not taking any more people out of my life than she already has.
Right now I am at a cross roads with my life in so many ways. I find out in the next three days, hopefully, if I am qualified to stay on my mother’s health insurance. Super Stress! If not, I lose everything concerned with my health which I have so delicately balanced in my life right now; all my access to medications, doctors that I need to continue seeing, the teaching hospital, my psychiatrist and mental health care in general, and to top it all off, Fibromyalgia is not a covered condition under the state-run health insurance. Great. Fucking great. So there’s the cause of much of my anxiety lately. As usual I procrastinated, and as usual I didn’t have most of the information I needed when it would have been ideal to have it, but unlike usual, I didn’t let my ADHD and brain fog stop me from getting everything in on time, early even, and following up with them. I have sticky notes, alarms on my phone, tasks on ToDoist, etc, anywhere I can slap reminders to stay on top of this stressful issue. The idea of losing access to any quality healthcare is terrifying beyond words, I do not even feel capable of contemplating how that will go if I am denied.
Most days it is a major struggle to get anything done at all, and even though I have only been able to shower once every four or five days, I just keep doing the one or two tasks a day that I am capable of, and that has so far in the last month added up to a rudimentary business plan, a super organized list of links to wholesalers, ingredients, prices, as well as display and packaging ideas, and recipes for many of the products we will be attempting to make. Only the best and most useful will actually end up on our first line at the end of spring. So again, progress is happening, but it feels unfairly limited because of how little I can do at one time. The old me would have products done by now and ready to be packaged, she would have designed the logo, created a website, written ten blog posts and scheduled them out in advance, and started working on the final draft of the business plan. Unfortunately I am not the old me, and my current level of ability will just have to suffice. I know i can make it work, I just need to stay consistent. Having this driving focus on an overall goal for the future is helping me stay sane during this gnarly week of flare up, but it’s also making me a little crazy. If that makes sense.
I am aware that I cannot continue pushing this hard indefinitely, and yet I’m not ready to decrease activity. I have finally found a few passions left in my life, like painting, writing, helping friends during difficult times so I can be around when they are thriving again, advocacy, staying educated about clean eating and chronic disease research, designing, and starting our small business. I finally looked Chronic Pain in the eyes and told her off by doing things that are incredibly painful, and which take weeks to recover fully from, and enjoying them, instead of worrying about the inevitable fiery backlash from fibro and chronic fatigue and hypermobility. So even though the pain is seriously awful, I’m not finding myself ready to stop.
Maybe I’m just crazy. Maybe I’m being unrealistic and stubborn. Maybe this is false bravado. No matter the reason, I have tasks piling up that need tackling, and this business is no longer just an idea, it is happening, and so I have to keep pressing forward, pushing through the brain fog, this newest stupid injury, and the severe fatigue and pain, all in order to keep seeing the incredibly slow, but present, progress towards a higher goal.
I am slightly dismayed that throughout my life I have always wanted better and been willing to work on myself, but somehow measurable progress has still been so incredibly slow as to seem non-existent or even backwards at times. Even getting close to figuring out what is going on underneath the obvious is a long up-and-down journey that I am still on.
My one truth, and a major consolation lately, is that I have never passively allowed myself to suffer, even when I whine like it. I am always seeking some kind of alternative to my present situation, and I have nearly always achieved those goals. Often the changes were not positive like I intended, but instead were more closely recognizable as manifestations of the trauma sustained throughout my childhood. Basically, my reactions to the perceived ever-present dangers and perceived constant rejection from those around me are what have been reinforcing unhealthy coping, despite my best efforts. Knowing that puts some of the power back in my hands.
I am not a small child anymore. I can handle almost anything that is thrown at me. I am not helpless. I am not unlovable, my emotions are not disgusting, and I do not have to accept unfair criticism from anyone.
Phew, I guess I had a lot to get off my chest after not really blogging for so long. Sorry for the length of this mess of a post! Thank you for reading if you made it this far!!! ❤
Even with two black eyes and a very swollen and throbbing nose, I refuse to quit. Bring it on, Pain. Let’s see what I can get done today, despite your ugly presence. Keep trying to stop me. I’m not scared of you. Eventually I will be able to put you in your place, but until then, let’s be very clear about something: I own my body, and you, Chronic Pain, are just along for the ride.
Having this blog and meeting so many strong and wonderful individuals who are not defined by their illnesses has changed me in ways I would not trade for anything.
How’s that for an obvious title? Okay, I mean, seriously, you all know that chronic illness affects us mentally as well as physically, and it isn’t about being a “strong” or “tough” or “capable” person. It isn’t about being good or bad. It is just logic that feeling crappy physically will bleed over into every other area of your life, too. Sometimes we need help getting the thoughts and memories swirling around our brains out in a productive, constructive way. When I’m alone, the chances of finding productive solutions to my problems are much lower than when I work them through with a therapist, but until recently, I had never met a mental health professional who knew how to talk to me. My current provider is a completely different story. I am overjoyed that I took that first step and called her office back to set up an appointment. It is like everything in my life was on hold until I met her, and then suddenly I started to see options everywhere, where before I felt helpless to change my situation.
I have been in and out of therapy throughout my life, but only ever with psychologists and therapists, never have I had the opportunity to see a psychiatrist, though I have wanted to for a long, long, long time. There is a massive difference between open therapy with my past counselors and going to see my psychiatrist. First of all, she’s kinder than anyone else I’ve ever talked to. I am usually so self-conscious that therapy is useless for me, I can’t wind down enough to think clearly or say what I mean. Not so this time around! It’s not fun, and it is work, and I do struggle with being open with anyone about my past or my innermost thoughts and worries, but it is worth it, and she makes it so much easier than my last few tries with therapy.
Many of us already know that trauma in childhood and chronic illness later in life are connected, especially for women because the mistreatment actually leaves scars on two areas of the brain for girls, versus just one area of a boy’s brain that is most affected by trauma. Perhaps this helps to explain, in addition to other factors, why chronic illness is often seen as a “women’s issue” and Fibro is diagnosed in women four to five times more often than in men. Either way, childhood trauma, abuse, neglect, and rejection are all linked to physical pain, and that is not insignificant for many of us. What I did not understand was how it was affecting me as an individual chronic pain patient, or how to do anything about it.
The hardest part was deciding to go back for my second appointment. I instantly felt comfortable with her but I was still judging the entire situation the first time I saw her, and weighing the pros and cons of emotional vulnerability. I was having a relatively lucid day and I think I came across as a lot more put together than I actually am, but I’m sure she could tell that I wasn’t really. Deciding to continue with the second appointment was so difficult because I started remembering things I did not want to remember, and it would have been really easy to blame the fact that I was seeing a psychiatrist instead of the people who caused the trauma in the first place. I wanted to get out of having to work on myself, and when the flashbacks started a week or two after my first appointment, I thought I had a good reason to not see her again.
However, some small part of me was ready to face everything this time, and the rest of me followed reluctantly. I went to the second appointment, I was honest about the flashbacks, and I was honest about fears and issues I have had for so long that I was beginning to think they were normal. It felt terrifying, I walked out of my second appointment numb and shaky, but reassured that I had a partner to help me work through things I wasn’t ready to deal with all by myself. Though I was still not sure how I was going to cope, I felt lighter having let it all out of me and having someone actually hear me.
Fast-forward three months later and I am pleased to report that the flashbacks don’t happen nearly as much. I have woken up mentally in ways beyond just feeling better emotionally: I am more confident in my needs and my value as a human being as well as in my abilities, I am looking forward to the future by making plans that reach out years ahead, and I have more coping tools than ever in my arsenal against chronic pain.
I am not saying with absolute certainty that I could not have gotten this far on my own, but I know that if I did progress this far alone, it would have taken so much longer, and been very difficult, and who knows what the end result would have been, really, except that I am so, so, so glad that I’m not doing this by myself.
I would urge anyone who is on the fence about pursuing therapy to start with a knowledgeable, extremely compatible psychiatrist that they trust from the start, and to be as honest as possible no matter how terrifying. From there you can figure out the appropriate kind of therapy for you. Therapy isn’t a one-size-fits-all approach, in the slightest. Another major benefit for me was that seeing my psychiatrist helped to solve long-standing questions I had regarding the nature of my anxiety and inattentiveness, for starters. Getting the appropriate diagnosis can help so much fall into place that you weren’t even expecting, especially if you’re like me and you feel a need to try to fit the puzzle pieces together as much as possible.
The work is certainly not done (and it will never be), but it is started, and that is pretty awesome considering how stuck I had been feeling the past two years. Just by getting a little bit unstuck, I no longer just survive my days, hoping for each one to end as quickly as possible. Wanting to change and not knowing how is both frustrating and overwhelming. I’m much less frustrated and overwhelmed now that I have an ally in my mental health and am learning the tools to carve out a life for myself despite severe and yes, depressing, amounts of pain that I deal with every day. I’m learning to stigmatize my own mental health less, to avoid behaving like a victim in areas of my life that I am not helpless in, and to look for positives in places I would not have bothered before.
Just writing that I was gaining ground six months ago would not have been possible and here I am, trying to write about it as often as I can.
If you’re feeling stuck, just keep looking for your opportunity, and know that it will come.
Until then, you’re doing your best. You are good enough. You have value and choices. People care about and love you, even if you don’t know it yet.
Wishing everyone extra spoons and days with less pain than usual. ❤
I just can’t get over how talking to a friend from the same small town I am from reminded me of being a child and hearing all the times someone told me to eat right and exercise. And all the times I blew that off and ate a cookie or smoked a cigarette or decided not to work out. What made me react to perfectly good advice like a dumb-ass? Who knows! Who cares, kids don’t do everything with the same logic that adults do (not to say that their logic is less! It can certainly be more astute sometimes) and that is behind me now.
As an adult who suffers from chronic pain and has been through almost every treatment and test and minor procedure to attempt to lessen that pain somewhat, and who has taken every pill and every supplement and every “miracle cure” and hoped so badly that something would work, I am finding that all I am left with are lifestyle changes. Fortunately, they are lifestyle changes I have wanted to make for a long time, but have not had the courage to pursue. That’s changing now, I’m starting to realize that yes, my body does hurt every second of every day, and yes, I can still be happy for hours at a time despite that.
Being ill has taught me that all those things we shrugged off as kids, all the health-class reading and the boring PE classes; that stuff actually mattered. What the hell, right?! In all seriousness though, that is really the end-all-be-all of managing my chronic illnesses and pain. I’m not great at always eating the right thing, and I sometimes skip sleeping, eating, and working out, because of illness, but in between not getting it right, I have to keep trying. I’m finding as time goes on I get better at certain things, but my progress is almost so gradual that I miss it if I am only looking at the ground gained from one day to the next, instead of the big picture. Looking back I can tell that certain things have shifted, for good. For the first time since I was 13, I am avoiding frou-frou coffee drinks, and there is usually NOT ice cream in the freezer these days! I have been craving things like salmon, cabbage, tart cherries, and homemade low-sodium pickles. Weird, and no, I am not pregnant. 😦
Some of the other changes I have made are slowly incorporating a regular amount of movement into my days. I now know that I feel worse, not better, if I sit around all day long. Even if I’m not up to working out or exercising, I have to keep moving throughout the day to avoid making my symptoms even worse. When I am up to it, I split my work out time into two or three 10-15 minute sessions of stretching, very gentle yoga, and super light arm and ankle weights. I focus more on my breathing than anything, and at least six times a day, no matter how awful I feel, take a few moments to regulate my body by breathing deep and slowly into my lungs, focusing on my belly rising and falling instead of my chest. It helps with pain to breathe like that, but it also helps long-term too, by forcing more oxygen into my tissues, which is a major problem for people with fibro.
My morning coffee drink is no longer overrun with fake, bad-for-me ingredients and now I add organic milk and coconut sugar (try it!!! it is the only low-glycemic sugar that I have actually enjoyed more than raw can sugar because it isn’t quite as sweet but is full of flavor and essential nutrients like zinc, potassium and magnesium!). I do not bake as often which cuts out most of our sweets around the house, and I try to buy only whole foods. Recently I have begun to include a 100% fruit smoothie in my day as often as possible, instead of the dairy based smoothies I used to make. I take probiotics every night with dinner, and I will never stop taking them.
Most exciting of all, I have begun to get off of Lyrica. This means so much to me, I can’t even put it in words. I wish someone had warned me that women of a child-bearing age have no business being on Lyrica if they actually do want children. Which I do, and have for quite some time, and would have caused me to find something different to take instead of the Lyrica, had I been warned. Lyrica causes some severe neural tube defects, often leading to miscarriage or at the very least developmental delays. I am not dooming my future child because of my inability to deal with the severe pain I am in, it just is not how this is gonna go. So starting December 26th, I have gone from taking 3-4 of the 150 mg pills every day to only taking 3 of the 75mg! Down more than half from my old dosage, and ready to start taking just 75mg every twelve hours and seeing how that goes! I kept a diary for the first week as I started to get off of it and then trashed it because every day sucked, for the first two weeks. I allowed myself to level out to a place where I wasn’t throwing up every day again and didn’t have the pounding, blinding migraines and gnarly headaches, skin crawling and lots of increase in my neuropathy and radiating nerve pain from pinched and torn discs in my spine, but I’m gonna see this through this year. I do not want to live with the loss of short term memory and feeling of complete apathy that washed over me while I was on Lyrica. And yes, that means those things, my emotions and feelings and everything I had been shoving down successfully have bubbled to the surface, and I have been forced to actually deal with my emotions instead of pretending they don’t exist. This is all good, I believe, but it hurts, and it’s been rocky for both me and my partner. Poor guy has seen me go through every shade of depressed, hopeless, negative, manic, hyperactive, over-sharing, impulsive, and mostly whiny that I am capable of. He loves me still, so I think he’s a keeper! 🙂
Other weapons in my arsenal right now include affirmations, journaling with an actual pen and paper, being honest with myself and the people around me about what I’m going through and what helps vs hurts, and remembering that the way I feel detoxing is not the way I will feel forever. I just have to keep looking forward, and keep making these plans and dreaming again for the first time in ages.
The longer I have this much pain and sickness every day of my life, the better I learn to work around it and deal with it naturally or at least work with my body instead of just suppressing its natural instincts. I have realized that big pharma has only so much to offer me, and in many cases it isn’t worth the cost, both literally and figuratively, of taking a drug that only masks symptoms instead of treating the root cause. I know I’m not the only one who has really struggled going full circle from all-natural, all-homeopathic remedies as a young adult, to taking handfuls of pills every day a few years later, and back again to attempting to distance myself from harsh medications with a meditating, herbal-remedy-taking, eating-right-and-exercising lifestyle. Not that my doctors ever told me not to eat healthy or not to exercise, I’m just saying that offering a pill was usually their first line of defense. Then, when that didn’t work they would tell me to walk it off or to learn “self care” which I did not even understand a little bit at the time. It made me angry (to put it mildly) for over a year. Now I just gotta laugh, because I literally say to my friends and my boyfriend at least once a day “oops, I’ve been sitting for too long, I have to go walk around the yard or stretch now so I don’t get worse,” and I have noticed so many good changes in both my mood and my body as a result. Not that my symptoms are diminishing noticeably or that I believe I can be “cured” by my renewed interest in healthy living, but it is honestly the best and most hopeful treatment I have tried since receiving my first diagnosis over a year ago. Hope is everything when living in such overwhelming pain and with so many other debilitating symptoms running the show most days.
I benefit greatly from living in a city where a girl with a motorcycle jacket and teal hair is approached by old ladies in the pharmacy waiting line so they can tell her how much they like the color. Those frequent encounters reinforce that I’m absolutely not weird compared to my city. I’m also not weird compared to any younger version of myself, each version I can think of readily would shake their head in disbelief that I am looking forward to someday having a child with a guy who *gasp* used to play football in high school and *gasp* still watches said games. She would be utterly disgusted that my favorite things are all so different (so borrrrrring) compared to what used to make the list. I think maybe that younger version of me was just trying too hard to be a stereotype I don’t actually fulfill, if I’m being honest to my own soul. So much has changed in me since I was a teen and I don’t want to be that cardboard cut out of a person, so easy to guess, so easy to figure out. Especially with chronic pain, I cannot afford to have such a flat personality.
So as I started thinking about it today, I went from bothered by my kinda strange hobbies to realizing something. In truth, all the things I worry will make me seem boring and “domesticated” are all the things that set me apart and keep people guessing. Lately I spend more time worrying about what will make me happy than what will make the people around me comfortable, which is a totally new thing for someone who used to be afraid to ask for a glass of water as a house guest. What makes me happy might not be exactly what is expected from my appearance, and I enjoy being a little odd like that, now more than ever.
With me, what you see is in no way what you get, but then again, it very rarely is. This is a reminder and a wake up call to myself, that my life is not entirely about my disease. My illnesses are not how I introduce myself. Yes, being sick has caused me to no longer be able to work a steady job or drive unless it’s an emergency, and yes, it inconveniences and pains me every single day, and yes, there is no cure and the pills do not help much. It has made socializing terribly difficult, indeed. But after all of that, I still have to live whenever possible, and even some times when it does not seem possible in the slightest. The things I have managed to do while in pain in order to pursue my inner goddess of domesticity, they are not small things, even to most healthy people. People who know my limitations physically often consider my refusal to give up these last hobbies and passions as crazy. My family and close friends think I am nuts for baking my own bread, or lugging out the massive pressure canner for that bumper crop of tomatoes from my garden. The truth is that while these tasks hurt to accomplish, they also sustain me.
The most important difference between working a few years ago and my much lesser version of “work” now: I don’t have to (and cannot) do it at a particular time. I don’t have to injure myself at someone else’s request over and over again all day long, I pick and choose what and when I do each thing. To say that my illness dictates my day is somewhat untrue. If it were true I would probably do a lot less than I end up managing some days. It would be easy to sit around all day and feel sorry for myself, and I’m not saying I don’t still do that some days. Sometimes I hurt so badly I would rather cut off several fingers than deal with another hour, and sometimes I cannot envision a life that adds up to anything while I’m burdened by these illnesses. It kills me to feel all my pre-illness plans for the future slipping through my fingers, and to have a lack of ability to contribute from both a financial and a physical standpoint.
Sometimes I feel like a monkey shot into space, left to slowly run out of oxygen, unable to control where I am headed or how long my ship holds up. Not a great feeling… but then I have to remind myself as gently as possible that my brain is a cruel liar in this area. I am not alone in space, spinning out of control, I am right where I need to be, taking it one day at a time. It helps to keep in mind that I am new to this and every single day and challenge I face is a learning opportunity. I don’t have to get it all right the first time, and I won’t. And that’s okay. Feeling hopeless and isolated is part of the process, as much as it hurts.
It was hard from the start for me to understand why I wasn’t supposed to tell people the name of this disease I had worked so hard to figure out, and which had such a profound impact on me in every area of my life. Why should I not be able to talk about my diagnosis? Had I not been diagnosed by a real doctor? I pushed back by declaring openly that I have fibromyalgia and chronic fatigue, to pretty much anyone who would listen to me, even for a little while. Explaining over and over and over again how certain symptoms felt, how I felt in the moment, how I had felt in the past, being as thorough and patient as possible while I was asked the same baffling array of stupid questions. Trying to be as insightful as possible, even though at the time I did not myself understand just how badly these two illnesses were embedded in people’s minds as joke illnesses, lazy housewife syndrome, etc. and how much I was being judged for telling my whole story. I didn’t care that I was oversharing, or bringing people down, or being a negative person, because to me I was just speaking the truth.
At first it was just a handful of symptoms, but then it became so overwhelming that I couldn’t keep track of them all and neither could my healthcare team. For the most part we do not know which symptom is caused by which illness, and which illness brought about the rest, or if they would have all manifested eventually no matter which conditions came first. Not knowing is okay too. Accepting that I may never know is finally a part of my story. It does not feel like giving up anymore. It feels like progress.
Getting to this point has meant a lot of sacrifice, I lot of crying and soul-searching and days of feeling listless, numb, and in serious danger of losing it at any second. I still visit those feelings often, and I know I will throughout my life, but they aren’t the end all be all of who I am. I am a painter, a gardener, an advocate for others, a seed saver, a baker, a friend, a lover, a person completely separate from the pain that I feel all of my waking and many of my sleeping hours. I will continue to have hobbies and passions and love in my life, no matter the effects that my illnesses cast across everything.
Appearances are so often deceiving, and whether that means that the crusty punk rock kid down the street will offer to help you change your tire in the rain even though he doesn’t own a car, or it means that I “don’t look sick” when I very much am, I think that’s just a part of life. We aren’t the neat little package we present ourselves in, and we never will be. I think we’re much better off avoiding labels anyway. Maybe that’s why I’m not so frustrated by that phrase as I know others with chronic illnesses are. It’s okay that I don’t look sick, because I also don’t look like I like to give frilly presents of jars of homemade blueberry jam and peach butter nestled in tissue paper, . But I am sick, and I do like to shower my friends and neighbors with art, homemade bread, pickles, jam, herbal remedies and laundry detergent, as well as homegrown produce. So obviously looks can’t tell you much!
We never know what we will find just below the surface. Sometimes we just need to look more with our hearts and less with our eyes. Healthy or sick, we are all so much more than our outer shells. I strive to be more than my illness as well.
I just posted a new page listing all of the successful earn-money-at-home websites I am a member of so far! Here’s the first portion, but head over to the actual page for the list of websites with links taking you to the sign up page for each.
click here to skip to the new page: My Recommendations for Make-Money-At-Home Websites
I’m relatively new to this whole making money at home with my computer thing, I remember trying to do it when I was younger and failing miserably at it, and thinking that the whole thing was a scam. 18-year-old me was just going about it all wrong, and I didn’t do my homework before I joined websites. There are a surprising array of no-credit-card-required product evaluations, surveys, small tasks answering questions or matching things online, games, videos, emails, paid-to-click sites and search engines that earn you points while you use them. The trouble is weeding through the crappy sites to the ones where you get lots of opportunities, a good sign-on bonus, and which have many different options for making money. There are two kinds of these websites, my personal favorite being the ones that pay out in cash. Beware of sites that only pay in points and auctions. I do have a couple accounts where my balance is shown in points rather than cash, but the ones which have made the cut actually pay out in equivalent cash rewards to paypal or amazon at the very least, no points-for-auction-entries sites will ever be listed here, I do not want anyone wasting their time.
This is a new adventure for me, but as soon as I started making money at it, I couldn’t stop thinking of all the people I know who are stuck with part time or no work at all, and I wanted to share this thing I’m doing with all of you who would benefit from it most.
Taking surveys and doing small tasks online distracts me from pain, but above all it is something that I can put away whenever my pain is too overwhelming to read or focus.
I also made a separate page that collects all of my current posts and the many, many future posts I have planned for my Chronic Pain Toolkit series. I want to work on the Toolkit as often as possible in the coming year and am excited to commit to writing more empowering posts.
2104 has passed me in a total haze, or I have passed it, either way. I will not be sad to see it go it because I honestly don’t remember most of it. Funny how our brains protect us from remembering the very worst pains.
The next year will not be merely survived. In 2015 I am determined to get back to the business of thriving again. Yet, I know that even if I find myself only barely hanging on again, I will try to stay happy with myself no matter what. Even just surviving with a major chronic illness or a handful of them, is a victory, and a big one. Some days it might be hard to remember why we are here, especially in the depths of pain, exhaustion and illness. We can lose sight of the next day and the day after that, and the simple promises held therein. It’s not hard to do. Hanging on through the worst times, this is no small achievement! Let’s take a second to congratulate ourselves on that! In the end, no matter what attitude we have about leaving 2014 behind, we are all wiser for having gotten through it. Some of us are also stronger. Some of us are feeling defeated, guilty, or shattered. But we are all still here.
I for one am actually (dare I say it) hopeful for the first time in years about my future. Nervous, nails bitten down all the way, unable to imagine what the future will hold, but excited and hopeful too. I’m not used to having anything that is actually important to me to show for myself at the end of each year, but this year my mental health is very important to me, and I have seen some small but important changes taking place there which I cannot help but be overjoyed by.
I hope 2015 brings you all much to be joyful about, and I cannot thank my friends and readers enough for your support, kindness, and the warmth you have infused into my world! ❤
Let’s get this started, 2015.
I have been through some extremely tough things in my life. Up until this time last year, I refused to say that any particular day or week or month was the worst of my life. It wasn’t worth thinking about, really, lots of it had been bad, but lots of it had been life-shaping, wondrous, or a learning experience, and it all balanced out in my mind.
Last year, this same week, I was sitting in a hospital sobbing, begging the universe to give us back my boyfriend’s father, who was in a coma after having a stroke. He had been rushed to the hospital within minutes of my boyfriend’s mom, Pat, noticing that his speech was odd, and that in the bathroom there was shaving cream everywhere on the walls and the floor. She was so on the ball, and we are so lucky that she was, because he had been about to get in the car to drive them both to our house. Who knows what would have happened, but it would have been so much worse and more traumatic for my boyfriend if they had both been in the car when he lost control of his body. We rushed to the first hospital he was taken to. He couldn’t speak, but he kept smiling, which was weird and scared me, he rarely smiled unless it was for a very important reason. I told him with the least tears in my voice that I could manage, that he was the best dad a girl could ask for, and he smiled at me and nodded a little, and I do not know if he understood me or not, but I am glad that the next and last thing I said to him was “I love you dad.”
He was not the normal stroke case, they were limited in that they could not administer the regular drugs because he had platinum in his head from a surgery to correct an aneurysm a decade prior. But the fact that he could indeed wiggle his toes and fingers these first few hours, and move his face and nod at us, even stand and follow some basic commands, it all seemed so promising. We were sent home by Pat to get rest, and within hours I came down with a violent case of the swine flu. That was Sunday, and it was the last day Dave knew who we were. We had no idea what was happening or what was going to happen, what it all meant. There was only shock.
That week, every morning we would go to the hospital as the sun was coming up, there were no visiting hours so we just got up and went there straight out of bed. I didn’t shower, I was in a horrible pain flare up and my body was playing host to a gnarly bug and just couldn’t manage through the whole routine, but I did pull on a dress every single day for some reason, and I do not know why. Every day I was not allowed to go back and see him at all, because of the swine flu. I sat outside the ICU on a bench with a bucket and a box of tissues and cried my heart out for hours at a time. No one looked at me or paid any attention to the girl directly in front of the ICU doors, crying and taking rounds of pills every two hours.
That Friday my boyfriend was scheduled to have his third major hip surgery in as many years. We obviously did not think it was a good idea to put him under while his father was in a coma. He cancelled the surgery he had waited almost a full year for and arranged his school schedule around, because there was just no way. And I am so glad that he didn’t go through with it.
Sometime towards the end of that week of fear, shock, and grief, I had an appointment up at OHSU, the teaching hospital in Portland, at the Frida Fibro Clinic. I was so delirious and sick. The pain from days of sitting on benches in front of the ICU in odd positions had overwhelmed me, and then the sadness for my boyfriend, his mother, and the father I had for five years all crashed around me louder than anything else. My aunt and uncle drove me to the appointment so my boyfriend could be with his mom. I was already not driving because my arms were not strong enough and did not always respond to my commands, and the side effects from the meds plus brain fog were so great that I often did really stupid things even if my body was working. I felt crazy and I was baffled at that time, because I had been the first girl able to bench 160 in my middle school. I had been effortlessly stronger than most people my entire life, and now… nothing in my body seemed to be obeying me.
Up until that point I had already been dealing with chronic pain for two years and one month, but I knew nothing about living well with a chronic illness yet. To my sorrow and guilt, it was difficult for me to even snap through the pain and be there for my boyfriend emotionally. That was so unlike me. I have always been there for those I love in their times of need, not just when it was convenient, but always. For some reason I couldn’t understand at the time, it was like my brain was wrapped in layer after layer of cotton and nothing could get in or out. Mainly out of fear and desperation, I kept my appointment. I wanted to find an instant fix that meant I could go home and help my boyfriend, support him in every way possible. I knew I was doing a terrible job and it was breaking my heart.
At this appointment I was kind of expecting to find out if I had fibromyalgia or not. It had been discussed briefly as a possibility in my previous appointment at OHSU’s Pain Center. I didn’t understand that there was no further test than the quick poke test I had done a month prior at the pain clinic, which I had heard her and her PA mention I “failed” but that was all. They had sent me to get a bunch of blood testing after that appointment, testing that got seriously screwed up by their clinic. After telling me the blood draw had not been done correctly, there had been no further news from anyone in between appointments. So I was completely horrified when the nurse practitioner that I was seeing glanced at a chart and said bluntly, “I see you have fibromyalgia, I’m sure you have prepared a bunch of questions to ask me. We also need to find out if there seems to be anything going on in addition to the fibro that needs to be handled by a rheumatologist.”
My brain kind of exploded. I saw rust colored shadows closing in around me, started sweating profusely, felt dizzy and my stomach went sour instantly. I didn’t connect any of that to the fibromyalgia she had just discussed, but rather I was still trying really hard to believe all the doctors prior who had told me it was all in my head. If it was all in my head, I could just… snap out of it, right? To have a name for it though, and one whose meaning I understood only a fraction of (but which seemed ominous even then), and to experience that in the middle of the grief I was already feeling hollowed out by… I was in no way prepared to hear my diagnosis that way. There’s no good way to receive life-altering medical news, but there are some really terrible ways, and my pain doctor somehow forgetting a whole month earlier to tell me she had diagnosed me then and there with fibromyalgia was one. If I had known I could have researched, I could have digested the news far better in a time when overwhelming sadness for my family was not my constant concern.
All I remember from the rest of the appointment is being sick. Nothing she said made it into my distracted, shocked, grieving brain.
A year later, a lot has changed, but grief for my boyfriend’s father’s passing is not any less present, any less sad. We miss Dave terribly, but we have done so much to make him proud this year. My boyfriend has since made it through two semesters of full time course loads, passing everything, getting some solid A’s on half his classes! I am so proud of his strength. At the same time, we finished up the basement to our house, and by “we” I mean all the pressure and responsibility that Dave was taking on with our house remodel fell on my boyfriend, who did not have the depth of knowledge on engineering, or building experience, that his father had. All the plans for the remodel were up in Dave’s engineer brain. We knew nothing about permits and where everything was and who to call, so it is entirely a testament to my boyfriend’s strength of character that it got done by October so we could rent it out.
When Dave passed, even the concrete was partially ripped out, every wall was gone, the plumbing wasn’t done, the electric was started but not finished, there was literally nothing down there. Now it is a fully functioning separate apartment, complete with electric fireplace, beautiful 6×4 ft shower tiled in stone, and an updated kitchen. We finished it while our roommates were moving in, so I do not have any pictures of the final project, but it’s a lovely two bedroom home. My partner also had to replace our vanity and sink upstairs in our bathroom in that time, plus fix up the other apartment that is attached to the back of the garage, a one bedroom cottage -style house with it’s own fenced part of the yard.
It has been a tsunami of change. The poor guy also rescheduled that major hip surgery in March, which took a brutal four months of recovery. I slept on the couch for all of that, so I could be near his recovery bed which was set up in the living room. Some of the things that have been accomplished in 2014 seem impossible. That one week exactly a year ago brought about so much change, so much grief, so much pain, personal strength and family closeness.
Though this week is the anniversary of the worst one I have ever been through, the week we lost a father, and the week I learned of my diagnosis of fibromyalgia, among other events, to my surprise we are still standing a full year later, and thriving even, though the grief is real and ever-present. Every day this year has been a struggle. Yet, there is still so much left to be thankful for, and we have done such a good job of finding those things. I feel blessed to be able to look back on a deeply sad year and still see the good, the progress, and the positive changes within both myself and my partner.
This holiday season, I hope everyone is willing to look back on a year that might not be perfect, and still see how it fostered (or forced) growth, resilience, and self-respect to blossom inside each of us. This was not an easy post to write. The changes this year brought about were not ones I would have chosen for myself, or my partner, but I am proud that we have done our best and we have always kept going, just like Dave would have wanted.
In loving memory of a devoted father, the man who built the foundation the rest of our lives are supported by.
Nothing will ever be the same without you, Dave. We miss you terribly. Most of all, we celebrate all of the wonderful things you did for your family. We are learning to talk openly about your accomplishments, the amount of time you got to spend with your son working on this house, and all the times you made us laugh; the things we miss the most about you. I hope that you are as proud of us as a family as I am of your son.
Gaining Ground Despite Chronic Illness
Since I first started going down the rabbit hole into the land of stranger and stranger medical mysteries, I have been losing things.
For three years, all I could see were the things that were slipping through my fingers, and I grieved considerably for each loss. I lost my job, my ability to drive, my self-respect, my future, and even at one point I let myself believe that I had lost the ability to be a good mother when the time comes. My grief was so strong that it blinded me to the possibilities that were opening up in front of me even as other doors closed.
Change is scary, from going to a new school, being diagnosed with a chronic illness, or starting a new business, newness is challenging. For myself, I had to learn to accept that I cannot change the stigma against Fibro alone, and I cannot make my doctors or my boyfriend or my mom understand it, but I can and have found others out there who feel what I feel and struggle with burdensome illnesses.Through reaching out to people in similar situations, I am hoping we can bring out the best in each other, and that is exactly what I have found here. Within the chronic illness blogging community there is so much support and enthusiasm that I can’t help but get swept up in it all. My healing process didn’t really begin until this blog got up and running. Yet, I have to remember that even once started, healing does not look like a straight line, especially with illnesses and conditions I will have for the rest of my life. I will always have very, very, very bad days and then there will always be awesome days to balance them out.
There is considerable strength to be found in just living to the best of my ability. Easier said than done, but a goal for me to aim towards!
There is no simple way to make the illnesses we face easier to confront, or even to take away the pain for a single day, as much as I wish otherwise. We spend our days fighting an invisible monster called Pain, and every day he is there when we wake up. We do the best we can, whether we are battling our illness from bed, from crutches, a wheelchair, a scooter, or our feet, every day is a marathon for us.
When we start to feel like we’re losing control of everything around us because of chronic illness and pain, the place where we have most control is in our self-care and self-love, which I couldn’t even fathom until I began to write a page of weekly affirmations. In the midst of the fear and chaos is acceptance. If you are in the grieving stage, I promise, acceptance is the best thing since sliced bread. It doesn’t happen overnight and it doesn’t happen easily all the time, but when you look back, you’ll see how far you’ve come. And it is worth it. We all deserve to accept ourselves, illnesses and all. If acceptance is an area you struggle in, why not try jotting down self-compliments or reassurances. They can be all the things you wish people told you, it can be all the things you believe about yourself, it can be as simple as saying “I am passionate about writing and I have a lot to say”, “I deserve to be loved”, or “last night I got enough sleep” or as complex as you need them to be. I feel like I’m not even writing when I do this exercise, the words just spill onto the paper from somewhere deep inside of me. I guess I must have been not allowing myself to think positive, comforting, reassuring things for a long time. I don’t know why, but I do know I have an awful lot of affirmations to get off my chest. Certain ones I find myself writing over and over again each week and sometimes on other days as well. These seem to be things I have a hard time believing, but which are important to me none the less. Someday, hopefully even these hard-to-digest messages of self-love will begin to sink in, and gradually, as many of the other affirmations have, they will become a part of every day outlook. Affirmations have helped me gain so much that I didn’t even know I was missing. So instead of losing things, now I can focus on what is still there, what is inside me that I can love and share with the world.
If you’re looking for a good way to start 2015 off, writing down a list of positive things about yourself can change your perspective on life. It can give you that boost of self-esteem and motivation you were looking for. It’s easy, painless, and you don’t have anything to lose! I bet you will be amazed by what you find out when you start writing. ❤
I hope that everyone had a wonderful weekend!
I cannot “fix” fibromyalgia, JHS/EDS, CFS/ME, Spina Bifida, or Occipital & Trigeminal Neuralgia. They are simply things I have to make room for in my life, understanding that I actually have a longer list of medical conditions than that by far, that are not going away on their own, and that have no cures. Say you found yourself in this position of going from healthy to completely unwell in less than three months. After a year or so, it becomes unbearable to the point of not being able to work a 9-5 job anymore, then not even a very part-time (12-18 hours a week) job, despite your very best efforts. No one understands what’s happening to you, including yourself. But it’s always something, it seems, every day. From crippling pain to autonomic dysfunction to dislocations to migraines to allodynia to candida overgrowth to skin lesions; name a symptom and it’s probably happened many times.
So this sucks, you think to yourself. I mean, sucks doesn’t even begin to cover it, but you grieve, you mourn, you see red, you get hysterical, you completely melt down. Allow that. It’s making room for the illness in your life. This part just hurts, on every level. But it’s worth it. There is so much happiness in life left, even with the things that have been taken away by illness.
I implore you not to not feel guilty for going after those things which please you, and which are still very much possible. Maybe this wasn’t the plan all along, but life is not over. It is being rearranged. You still have control, even when it doesn’t seem like it.
The guilt is the tricky part. Illness and pain can make you extremely bitter and withdrawn, and they can also make you extremely fierce, creative, and compassionate. Let’s be fierce, together!
I can’t cure myself, but I can and will continue to gain strength and happiness. In that spirit, I have been exploring new avenues that I couldn’t see myself taking before I was ill. The options to write, to be an artist, to be a graphic designer, to start a small business, to create and teach and advocate, all these things were possible before, but I had no idea. Now I know that I can do things in my life that will make me happier than any path I was on before. I have been through hell, and will continue to visit that territory throughout life. But I am not unhappy. There is plenty of beauty, life, love, and creativity left in me still. As there is so much beauty and love in you as well! ❤
Spoonies travel a lesser-taken road, but we do so in style, I believe! Especially when we band together for awareness and advocacy.
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