Tag Archive | #practicingpositivity

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.

The Joy of Gratitude

Being grateful is my new go-to emotion.

If I’m feeling numb or distant or like I want to spiral down and down, I pick out one thing I can still do, one personality trait I am grateful for, and one thing that happened that day to be thankful for. Sometimes I just write the answers over and over again until they carry the meaning they need.

Of all the surprising benefits of being grateful, the one that strikes me right now is that it actually makes it easier to feel like I have all the reassurances I need, so I do not need to seek them from other people.

I only figured out in the last year what it means to truly find good in everything, and to make that spirit of thankfulness a priority. I was so ready for a change internally that when the gratitude that people had been telling me about for so long finally sank in, it became a part of my daily life almost immediately and with not nearly as much effort as I thought. Looking back, I started small and worked my way up to being able to write a list of positive affirmations almost every day. Writing those lists has been an incredible experience in the last three months. Now when I feel lost, I can look at the page after page of lined notebook paper and find myself again.

If you are fighting a battle with a chronic condition or chronic pain I especially hope you have the power of gratitude on your side, maybe not right now, but in the future at least. It doesn’t take my pain away, but it is almost like a blanket that keeps me warm no matter how cold the winds in my life are blowing (it’s freezing here, lol).

Easy is absolutely nowhere to be found in my new post-illness life, although people on the outside looking in must think I am lazy and everything is handed to me while I sit back in comfort and make demands on everyone around me, that simply is not the truth. In all this craziness, gratitude helps, that’s for sure. My life isn’t easy, I just make the best of it. Hard to prove, though!

Fortunately, all that matter is that I know how much grueling, non-stop work is going on even on those all-important rest days when I seem my laziest to the casual observer. Among the changes fostered in me when I adopted gratitude into my outlook, it’s finally getting easier not to care what people think. I have always been so self-conscious that by age 10, even sitting with my family in a restaurant, I was sure I was so hideous that everyone must be laughing at me, and every “her” I heard, I was sure it was me being discussed in all my disgusting glory (my self esteem was not the greatest, as a kid), so gaining some ground there is awesome, to say the least.

Join the #CapturingGratitude Revolution!


Apparently when everything else falls apart, we get time to explore ourselves, and pull all the good things we have buried back up to the surface again.

It honestly feels like all this soul-searching could be the most important thing I do for myself in my entire life. I am grateful for the chance to pursue it.

Pick One Thing

Even in between flare ups I can only do one thing. One thing before I have to lay down. Sometime just one thing the entire day. I cannot shower AND leave the house on the same day. I cannot do light work in the vegetable garden AND make dinner in the same day.

In fact, any one thing I do choose to focus on could be the last all week, if I hurt myself!

So how do you pick which task gets your attention?

Before chronic illness I would make a list, and I did all the hardest chores as fast as I could. No matter how awful I felt. Powering through and forcing myself to do everything that everyone around me “needed” was my way of life. I swore by that.

As I developed more and more symptoms, inevitably that behavior translated into trying to ignore my pain and push on. I was in much more pain, cognitive issues were becoming a daily and noticeable problem, I was having much more severe flare ups, I was always anxious and I was even having suicidal thoughts for the first time since high school.

Now, three years in, I finally understand that overdoing it is a ticket to my own personal hell, and I don’t have to buy that ticket.

Only I can know what overdoing it means, and I am the only one who can give myself permission to take a break, change tasks, or stop altogether. Of course, real life gets overwhelming and self care can fall to the wayside during a crisis, but the important part is that this is a habit that is sticking. And I am learning gratitude as a result. In between flare ups, I am capable of doing one thing. That is something to be be grateful for.

I am learning that it doesn’t have to be frustrating picking where my energy goes. It can be freeing, too. I am acknowledging my limits and despite the chaos that causes and the emotions it brings up, I have faith that my life will ultimately be better as a result. I can focus on the good that is left, rather than what I miss. It’s a process, I still have days of utter and complete depression in the midst of a long flare up, and I don’t feel like there’s anything wrong with that. Thanks to chronic illness my life will be full of ups and downs that are much more dramatic than before I got sick.

Post-chronic-illness, I am sorting through the wreckage for the potential in me, the things that I value about myself even when my body is not as strong as it was. Being able to do one thing, even if it is sleep and recover all day, is a gift that I am finally willing to accept.

A Letter To Patients With Chronic Disease from An Experienced MD

#HonestCommunication

About three months ago, I stumbled across a really interesting essay written by Rob Lamberts, MD on his blog at Musings of a Distractible Mind. The essay discusses in-depth and honestly how chronically ill patients remind doctors of their own humanity, fallibility and failure. This is something I have understood for a while but not been able to put into words.

Now that I have finally found a primary care provider who respects me and who I respect in return, I am a lot more hopeful about my future. All as a result of my ability to put trust in her. I do not, however, expect her to fix me or even necessarily tell me what is wrong with me. I do believe she is doing her best to figure it out, and she seems to believe my pain. Ahhhhh, miracle of miracles, I found a healthcare professional who actually cares! Novel, exciting, and entirely needed. 🙂

It seems the missing part of my previous relationships with doctors (not all of them, some of them are just plain jerks): I needed to show them the compassion I wanted to receive in return. This is just an excerpt from the wonderful words of Rob Lambert in A Letter To Patients With Chronic Disease:

(http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease)

…We are normal, fallible people who happen to doctor for a job.  We are not special.  In fact, many of us are very insecure, wanting to feel the affirmation of people who get better, hearing the praise of those we help.  We want to cure disease, to save lives, to be the helping hand, the right person in the right place at the right time.

But chronic unsolvable disease stands square in our way.  You don’t get better, and it makes many of us frustrated, and it makes some of us mad at you.  We don’t want to face things we can’t fix because it shows our limits.  We want the miraculous, and you deny us that chance.

And since this is the perspective you have when you see doctors, your view of them is quite different.  You see us getting frustrated.  You see us when we feel like giving up.  When we take care of you, we have to leave behind the illusion of control, of power over disease.  We get angry, feel insecure, and want to move on to a patient who we can fix, save, or impress.  You are the rock that proves how easily the ship can be sunk.  So your view of doctors is quite different.

Then there is the fact that you also possess something that is usually our domain: knowledge.  You know more about your disease than many of us do – most of us do.  Your MS, rheumatoid arthritis, end-stage kidney disease, Cushing’s disease, bipolar disorder, chronic pain disorder, brittle diabetes, or disabling psychiatric disorder – your defining pain –  is something most of us don’t regularly encounter.  It’s something most of us try to avoid.  So you possess deep understanding of something that many doctors don’t possess.  Even doctors who specialize in your disorder don’t share the kind of knowledge you can only get through living with a disease.  It’s like a parent’s knowledge of their child versus that of a pediatrician.  They may have breadth of knowledge, but you have depth of knowledge that no doctor can possess.

-Rob Lamberts, MD

Written July 14th, 2010

(Read the essay in it’s entirety at http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease.)

So there you have it; part of the reason why you scare your doctor/nurse practitioner, the reason why you make them uneasy, agitated, and defensive. The author of this letter isn’t blaming his patients for making him feel like a failure, but he does go on to give us some tips for creatively gaining some ground with our doctors and reducing the tension in the exam room so everyone can behave like adults and no harsh “I don’t know what to do, your situation is just too complicated” gets thrown out there. Phrases like that effectively shut down communication and trust between you and your doctor. It’s as if they just slammed a door in your face. Of course, when we collapse into hysteria and start screaming for someone to fix us (um…. yeah, that might have happened, maybe…), that sort of thing can also shut down communication pretty quickly, just for example.

The step by step tips the author gives for cultivating a good relationship with healthcare team members should help to get things off on the right foot with a new doctor, or even mend a relationship with one of your current doctors. The latest poll of MD’s from 2013 Pain Report found that 1/4 of primary care doctors believe that all their fibromyalgia patients are exaggerating or even faking illness altogether (yikes!), so there is always that chance that you could be stuck with one of those jerks. In which case, don’t mend anything, just BAIL. Get out!!! Find someone else. Search the chronic illness support groups in your area for suggestions of primary care options who take your health insurance. (Hint, those support group websites often have lists of local lawyers for helping you file for disability and even local charities that can help with food, electrical, and mortgage/rent costs.) Then, once you’ve found a new doctor, use the author’s suggestions to build a rapport with him or her..

I know how frustrating the search can be, but I can promise you there is a huge, staggering, massive difference between a doctor who is a bad fit and the right doctor. Even with the right doctor, part of being chronically ill is understanding that no one understands us. We are always, to some extent, alone in our illness. Each of our pain is unique, it is not like anyone else’s pain. No two match up exactly. Therefore, no doctor will have the same take on it as the next. This is one reason why the author advises that chronic pain patients keep their eggs in just a few baskets; only seeing the same few doctors who are all in connection with each other and can actively manage your illness instead of bouncing from specialist to specialist to specialist.

Part of the shift towards receiving better care requires that we as patients always remember that the person we’re dealing with, underneath the title that shows us they attended a lot of school, is a human being who is capable of making mistakes and feeling guilty, defensive, or embarrassed by those mistakes. It is not our job to puff up our doctor’s ego by saying they did a good job treating us if they did not, However, it is also not our job to tear them apart when they are trying to do their best, even when we are just desperate for them to pay attention to our agony. Trust me, I get that, I have been there for more than a year straight not that long ago; just a total mess in every doctor office I went to, and every visit was a bad one that year. I left in furious tears far more often than I left composed.

Instead of going in dreading and fully expecting a fight, now I strive to help my doctors, nurses, and specialists more easily understand me by following some basic etiquette and planning for my time with providers more carefully. Thanks to the author of this article I am lucky to have found a great doctor-patient relationship with my new primary care who is a joy to see. She holds my hand when she has bad news, she is warm, compassionate, smart, and determined. I finally have an ally in my primary care! Finding such a gem of a nurse practitioner does not end my struggles with chronic illness, but it is a huge relief. Now when I encounter a doctor I cannot see eye to eye with, despite practicing compassion towards them, I am much more confident in identifying who will work with me and who is too jaded or disrespectful to be a good fit. I’m still learning how to implement all the advice the author laid forth so clearly, but after years of bad doctors and me being a bad patient in response, I think the cycle is broken.

A Letter to Patients with Chronic Disease is one of those essays I would recommend to all patients with chronic conditions, and it is one I wish I had read earlier in the onset of my illness. It found me at the right time, though, and I am so grateful.

In case you need to copy and paste the address of the original letter, here’s the url: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease

my dear friend, A Body of Hope, wrote a companion piece explaining with a touch of humor just how frustrating it is to depend on doctors, and a clip from Twin Peaks (eep!) making it all clear as day.

Here is the her post: Warm Milk: Physician Frustration. Head on over and check out all of her insightful and inspiring posts. Her sense of humor is flawless, and I am always and forever in debt to her for helping me get started here.

Enough

So many people I love and care about deeply are going through the toughest (I hope) times of their lives right now. To all you warriors out there who aren’t sure what the future holds, try to take it easy on yourself. You haven’t given up. You are trying your hardest. You are surviving. That’s enough, no matter what anyone else says. ❤

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. ❤

Undiagnosed Warrior

Be brave, little fighter. There's a warrior within you.

moderndaywarriorprincess

Because All Women are Princesses & are Stronger Than We Ever Knew

Quinn's Cauldron

Handmade Jewellery and Wiccan Crafts

iamchronic

Writing Through The Tragedy And Terrible Beauty Of A Life In Chronic Pain

No More Silence. Speak Out Against Domestic Violence.

Silence Enables Violence. Find Your Voice.

Hannah's Battle to Breathe

Living with a chronic illness: the ins and outs

highwaytohealingblog.wordpress.com/

"Life shrinks or expands in proportion to one's courage."- Anais Nin

chiaricontinues

chiariwife. chronic pain. awarness.

%d bloggers like this: