Tag Archive | chronic illness win

Staying Present During A Flare Up

It’s a major challenge to remain present despite the feelings of despair about all my worsening symptoms and lack of options that I am staring down. At the same time I’m always trying to figure out more and more about living inside my energy envelope and enduring the chronic pain, the lack of predictability, the severity and suddenness that my symptoms frequently come on.
Fortunately, a louder part of me than the despair knows that it’s important to grow and learn from this never-ending flareup, otherwise I am just surviving hour to hour, living in fear, and that isn’t enough for me. I’m greedy.
I want to get to a better place so I can really live again, within my limitations. So I can make my mark, however that is possible. It has to be possible. Everything is so hard now, but I know who I am, and I know who my friends are. I’m stronger than ever in some ways, and I am learning to forgive myself for the weaker parts.
Even when all I can do is breathe, it helps to remember that just being alive is amazing and improbable. I am so grateful for days when I am capable of seeing past the storms overhead. It’s okay that I can’t do that every day, because I’m doing my best.
from Instagram: http://ift.tt/1ENzmMI

You Don’t Always Have to Feel Grateful That it Isn’t Worse

So, I’m going to just say that things have been pretty bad for me right now. I have so damn many health care, financial, and emotional needs that are not being met, and after three and a half years of waiting my turn, I need something better than this, I need more, I need to live and have hope and at least try to get treatment for some of these problems. But just because I need something doesn’t mean it is possible. Money is an asshole that way. All ways, really.

I am still grieving the loss of a dear friend, and I talk to her at night when it’s quiet like this, and I think she hears me, but I don’t even know how to put into words how much it hurts to obliviously type her name on facebook like I’m going to see her there posting updates, and then to realize that no one gets to hear her sunny voice again. Who knows why it takes so long for the shock to wear off and the sadness that won’t lift to settle in. It’s like my bones are crying now, and I feel her absence physically.

All these things coupled with isolation and excessive pain levels with secondary depression, plus a nasty chest cold have made me a slightly more bitter girl, and I apologize for that, but then again, I kind of don’t want to apologize. Though it’s embarrassing to go off on an angry rant and publish it and re-read it the next day and not recognize who wrote the words, I did write it, and I did mean every word when I was writing and that tells me that someone else out there can maybe feel less alone if I continue to allow myself to occasionally write the lows, the times I don’t cope well, that my chronic illness brings.

The reason I’m suffering this week is simple. I went out, I lived a life for a week with two social calls an hour away from my house, and the consequence for my actions are a dire flare up and infections, even though I practiced preemptive rest, stayed hydrated, slept beforehand and loaded up on vitamins. That’s what the fuss is about, for any non-spoonies reading this. That’s why I’m “obsessed” with my illness and I never seem to win. You can do everything right and chronic illness is still a merciless, evil, cold hearted f*ck who will laugh at your plans, your support network, your therapy progress, your talents, and even your basic needs, and which will deny you access to them all from time to time.

I’m not trying to paint a grim picture, or a “poor me” kind of portrait, I’m trying to say that all spoonies, no matter how small you may see your contributions to be, all spoonies are important. You are important and you matter.                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                                          atleastitisntworse

I guess I’m leaning towards the idea that if I don’t censor myself, I will probably help more people feel accepted and welcomed into the chronic illness community. We don’t have to have rainbows shooting out of our asses all the time to be valued and welcome members of the online spoonie community. I like encouraging people with stories about good days and things I am thankful for, and I won’t give that up, but I also don’t want to be missing a whole group of spoonies who feel pretty worthless and unaccepted by the rest of the chronic world.

Everyone needs a place to belong, even the undiagnosed, the doesn’t-quite-fit-the-diagnosis patients who are still in limbo, they need our support more than anyone. That is a stage in my journey where I was bitter every single day for at least a year.

So I’m going to perhaps post more vehement pieces than usual and not hold myself back. I will stop telling myself I can’t write on my worst days unless I have a good attitude while I do it,because that’s not therapeutic for me, for one thing. I do factor in here too, somewhere, I think.

The reality of being ill is that you will have some good days, some of us get more or less of those depending on our situation, some of us don’t have good days physically, but almost all spoonies eventually get to the point where you can have a series of bad days that you can handle emotionally, and those bad days will make you proud of yourself later on without too much soul searching involved. You endured and even conquered your illness for a while. You got through it without snapping and that’s to be commended. But it’s not to be expected from you. Positivity during hardship is not the only “right way” to cope. Because look what happens next; you overdo it or the weather changes or you cough funny, you have a medication reaction, or you develop a new symptom or allergy and things get complicated.

“Didn’t I just get through another hard week like this?” you think to yourself. It drags on, but you get through it, kind of numb and just making it day by day. And then not-so-wonderfully, another health setback; you have to take care of someone else who is ill, you get asked to another social function you can’t get out of, you have to attend three doctor’s appointments in one week, or whatever else it is, but it adds onto the pile you had not quite dug your way out of from last week yet. But you get through that week, and the next one too, though on the bad days you’re just counting the hours, you can’t even take it day by day things get so overwhelming. Months go by like this, a cycle of debilitation and not-quite-recovery only to be met with more medical problems, more stress, more debt, more isolation and eventually the bitterness that you thought maybe you had “gotten past” can sneak back up on you.

I’m not saying you are required by spoonie law or something ridiculous to feel all of these things in these specific ways for these reasons. I’m just setting the stage for those who are being hard on themselves for not coping as well as they’d like, and for people who may not understand what suffering from an invisible illness can be like when you aren’t improving.

No matter how you cope, or how well you “keep calm and carry on”, you still deserve to be commended. You’ve gone through a lot, and you should feel safe and understood when you are being honest about your pain. Honesty is not negativity.

Wishing everyone extra spoons, low pain days, and super soft fuzzy blankets that don’t hurt you while you’re sleeping. ❤

Things Have Been Moving Really Fast Around Me

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.

Stock-Image-Separator-GraphicsFairy11

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:

grape seed oil love

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.

#spooniestrong

Chronic Lessons: Then and Now

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.

Gotta Laugh

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.

Trying to Wear all the Hats While Chronically Ill

This is a post about me, but I hope it touches someone else as well.

I realized today that for the last three years I haven’t had a day off, because although I’m not able to work, I also am not able to relax. This upset me. I haven’t had fun in so long I don’t know what it is anymore.

I used to be a fun person, didn’t I?

It wasn’t even that long ago.

Why can’t I relax? I do all these relaxation rituals every day like they’re going to save me, and I even get some benefit out of them. How come I can’t get where I need to be? I’m usually good at doing anything I really set my mind to, even with all the glitches my mind has nowadays. I have dedicated the last three years to healing myself, so why is relaxing so unbelievably hard? I’m sure most of the people around me think that’s all I do in a day; relax. It must look like it from the outside in, when I’m mostly in one place all day long, and I don’t work, and I don’t contribute to our bottom line. I’m sure there are a couple people out there who think I’m doing it for attention or for some other sneaky reason. Let me assure everyone, the only reason it looks like I’m okay is because I worked really hard to not spend the entire day crying, freaking out, and catastrophizing my painful and scary symptoms. Believe me, faking chronic pain isn’t easy or common, in fact, only about 1% of chronic pain patients have been found to be malingering or milking the system. That’s a stereotype for a differing blog post, though!

Then it hit me: I’ve been a patient for the last three years, but that’s not the only role I have been filling by any means. I have also had to be my own researcher and doctor for most of that time. When I stopped working a little over a year ago, I filled those hours immediately with my other duties (which were being completely neglected at that time because I was too sick to do both). I never really slowed down, because I felt so much guilt over not continuing the agony of trying to work a few hours here and there, when I could even get out of bed / stop vomiting / not have fiery and ugly hotflashes all day long. My first unemployed days overflowed with housekeeping, baking, doctor appointments, tests and imaging, canning produce, tending the garden that we depend on for subsistence each season, helping my boyfriend with his massive amounts of homework, keeping my houseplants alive, writing budgets and grocery lists, self-care routines, research my illnesses and symptoms, teaching myself ACT (Acceptance and Commitment Therapy), keeping track of my friends who are struggling with life-altering or life-ending illnesses while trying to help them emotionally whenever the opportunity arises, and acting as a caretaker for my boyfriend after his three hip surgeries.

None of these things are things I dislike or don’t want to do. In fact, I can’t imagine giving up any of these things any more than I imagined I would ever be forced to give up my job and driving. Giving tasks up means that someone else has to do them or they will go undone (like my make up and hair, for instance!). All the responsibilities that I am no longer administering to, such as driving, they mostly fall on my poor boyfriend, who is himself a chronic pain warrior.

I’m not happy with this situation. But I am learning to accept that I am not a burden simply because I can’t do all of the things I used to be able to do. The next step, the step I haven’t quite been able to take yet, but my toes are over the edge at least! I’m getting closer to being able to make this leap: at some point in the future I have to start doing the things I want in spite of not having enough energy to do the things I need to do afterwards, I have to start wearing less hats. It will mean downsizing my life again, which is yes, totally terrifying.

Most importantly, I am in control of what goes and what stays, this time. I know that getting any of my conditions into remission will be a process that requires me to reclaim my emotional well-being as much as my physical, if not more.

I have been afraid to step into the roles I really want to take on because I’m not doing a great job right now, trying to wear all these different hats for different people.

From now on, I’m making a pledge to myself, but also for all the other over-worked & underpaid spoonies out there, that I will not beat myself up for what I cannot do. I will be more gentle with myself when deciding whether to push through a painful task or take a short break. I promise to feel less like a burden and more like myself. No more guilt for trying to be a happier person, whatever it takes!

It’s a whole shift of mind, but I’m finally getting there. Closer, but the damn guilt still won’t let me paint like I used to, even on a better day.

I will get there soon, though. I can feel it.

🙂

If anyone has any advice on how to accomplish this new quest for self-love and self-worth, I would love to hear your input!

To all spoonies: You are good enough. You are not a burden. Be gentle with yourself when things are too overwhelming or too difficult to accomplish alone. You are worth loving and lending a hand to, no matter what. ❤

Music to my Ears

Today I listened to music. My music. In my house.

That sounds like not much to most everyone, but it is huge to me. I haven’t put my studio music on for ages. It’s all the stuff I listen to when I’m deep in an art trance for hours at a time. I haven’t painted like I used to since I was diagnosed, and a part of me has felt like it is wilting as a result. Having five or six creative outlets at one time has always been a part of my madness!

Lately it’s a daily struggle not to wear my chronic fatigue, fibromyalgia, potential MS, and that pesky anxiety, and wrap myself up in them like a big ugly blanket. Some days are definitely better than others, but as anyone with a chronic illness understands, “better” does not mean that my pain is actually gone or that I should push myself to my limits and beyond just because my body will allow it temporarily.

So there’s obviously a balance to be struck here, and I have to confess that I haven’t completely found it yet.

I have a feeling I will always be looking for balance in my post-chronic-illness-life. That’s okay, because so is anyone out there who is paying attention! That’s what chronic pain does, it’s like an alarm system where the sensitivity is set way, way too high inside your body, but it makes you notice things other people forget to take into account.

This morning a nurse compared my chronic pain to high blood pressure. I was annoyed at first, but then I heard her reasoning and I melted. She said that just like in high blood pressure, where one system in the body is set on high alert, so too is chronic pain a system that is over-active inside our bodies. Suddenly it felt like all the weight lifted off of my shoulders: all the stigma I had directed at myself for not being able to beat chronic pain with willpower alone was gone. It takes years and years of effort to completely cure oneself of high blood pressure. I know because I have spent the last ten years doing just that, and succeeded, in the midst of chronic illness, even. I had a bad reaction to taking birth control, and seemingly permanent hypertension was the repercussion. It is not a clean & clear cut path to beating hypertension, it takes a multi-disciplinary approach to actually get rid of it, and then it takes maintenance to keep everything running smoothly even after managing to get it into remission. I still have to take it into account all the time. Comparing the two actually made so much sense to me that I was in tears, thanking the nurse for her perspective and the weight that had lifted off of me after years.

In celebration I am listening to music I haven’t listened to in almost as long, music that has always gotten my creative side to come out and play. I am hoping that at some point tonight I will finish my boyfriend’s homework (busywork about grammar, which I asked to be able to do so I could re-learn all the rules I have forgotten) and then I can pick up a paintbrush or a sponge and get myself covered in paint, gesso, and paper scraps. Here’s hoping! 🙂

Little Big Moments

It’s pretty wonderful to make it through an episode you previously didn’t know you could make it through without help. Although the crippling level of pain I have endured the past two days has been completely unbearable by my standards, I did bear it. I don’t know how, I don’t know if my grandma was watching over me, but it felt that way.

This was my gift yesterday from my garden. I’m not religious, but things like this used to happen to my grandma all the time, so if she is by my side, this is definitely her way of saying I did a good job. Thank you, Grandma B. It’s difficult to grow melons in Oregon, even with a good season like we had this year. It’s difficult for me to have a garden at all with how ill I have been, but it would be harder still to not having one, to not see the growth and surprising tenacity of my plants as they make it through another summer of spotty watering and weird Oregon weather.

Ha Ogen Melon

This is my first Ha Ogen melon of the season. It may just be the best melon I have ever eaten. Melons are tricky in Oregon, so I’m proud of myself!

This beautiful melon managed to make my day yesterday. I cut it up and saved the seeds that had not already germinated. Delicious, sweet & flavorful liquor ran all over the cutting board as soon as I opened it. It may not have reached it’s full yellow potential, but it was definitely ripe!

Little big moments, like finding a perfectly ripe melon in the middle of a rain burst, are the things that keep us going when we are in pain all the time, when we are scared, when we are uncertain about the future or about the people around us. They are the things I hope to remember about each day, instead of the searing hot pokers in my legs and low back, or the steady drilling sensation in the back of my skull. Rather than focus on today being the day I got my brain scans back, I would rather remember that my garden did well this year even though I could not tend it like I usually do. Rather than focus on my lack of ability to clean the house, I would rather remember that I did somehow manage to get the dishes done and make something approximating a homemade dinner yesterday.

There are big victories to be found while living with a chronic illness, certainly, but they do not happen every single day. These little moments of strength, however, they actually do happen daily. The catch is that they only exist in reality if we know how to see them clearly through the emotional and physical chaos of chronic conditions, and that is a journey that doesn’t happen overnight. You don’t have to notice them every day for them to strengthen your soul, even once a week saying to yourself, “I did that, and I am proud of myself,” can make a huge difference over time. Sometimes you need help, and sometimes you need to do something difficult on your own.

I am proud of myself for getting through a serious attack without the panic and the momentary loss of self that sometimes accompanies a flare up. I am proud of my boyfriend for letting me wail and cry and scream my way through the episode without getting frustrated at me. And I am proud of my garden for producing such a beautiful melon even though it has been raining all week.

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chiaricontinues

chiariwife. chronic pain. awarness.

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