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. ❤

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About Jessi Finds Out Fibro

Hi, and thank you for finding your way to my corner of the web! I'm on a journey to empower myself and hopefully others through shared courage and compassion. I write Finding Out Fibro, a chronic illness and chronic pain awareness blog that is not just about fibromyalgia, as well as a new project making jewelry under the Etsy name Hopeful Spoon. Please check out the shop and share if you can! Thank you for your support! My other hobbies include defeating ableism anywhere I find it, upcycling old junk into funky awesomeness, raising my voice to erase stigma against invisible illness and mental illness, baking, collecting vintage kitchen ware, sharing body-positive messages, playing around in photoshop, abstract painting (especially in neons and metallics!), advocating for those living with chronic illnesses and mental health challenges, seeking safety and upholding visibility for LGBTQIA individuals living with physical and mental disabilities, researching and testing plant-based remedies for chronic pain, and spending all my spare spoons in my veggie garden. This is my opportunity to do more than just survive with chronic illness. This is me learning how to live well, even though there is no cure for the war my body is waging on me.

5 responses to “Trying to Wear all the Hats While Chronically Ill”

  1. waxingturtle says :

    Jessi,
    I don’t have fibro, I do have chronic pain and you were saying the words right out of my heart: ” 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 stopped wearing so many hats but damn it, I’m so mad that the little energy I do have goes into basic daily maintenance! I try not to complain but I’m tired and I want to have fun, I want to LIVE! Cleaning, cooking and bookkeeping is not LIVING, it is barely surviving.
    I’ve been thinking to start a second blog in regards to chronic pain, I couldn’t believe there wasn’t more on here…
    I have a tumor in my spine and occasionally I get to forget it is there, I don’t get to work or anything like that, but I do get to go on about my daily needs and occasional event with out wanting to die or eat narcotics like candy. However, when it rears its ugly head, it’s bad, and it’s appointment after appointment that there’s no energy left for anything…
    The acceptance is the part I am having the biggest issue with. I was born this way. It has been a battle my entire life, I am tired, exhausted. I have lost nerve functions and other things. I know I need to accept that there is no “getting better” just better manageability for me. I’ve been actively trying to “get better” for over 10 years, and I’ve actually gotten worse! I’ve done my research talked to doctors, etc etc. And now I’m back to finding new doctors (because I’ve moved). It’s all so exhausting physically, and psychologically.
    Thank you, Thank you for singing to my heart and helping me to understand, and one day hopefully accept that, “I am not a burden.”
    Sincerely,
    Audrey

    Liked by 2 people

    • Jessi Finds Out Fibro says :

      Thanks for sharing your history and your story. I’m glad to meet you! And I’m so sorry you’re in so much pain all of the time. It gets overwhelming and there’s not a lot we can do except ride it out.
      I was born with Spina Bifida Occulta, and c2-c3 are fused together from birth. I’ve got cysts wrapped around nerve roots, a mystery tumor that keeps growing on my spine, a lesion on my thoracic spine and significant disc dessication and Schmorl’s Nodes, as well as herniated discs and some permanent nerve damage too, but my doctors much prefer to fixate on the fibro (the thing that came last in line, as a result of all the other traumas my body has experienced, is the thing they all want to pretend is my only issue, of course! Silly doctors!)
      Finding a new doctor…. just reading those words made my face involuntarily twist into this weird “I just smelled something bad” expression. I have so much sympathy for this particular battle. Don’t settle until you find the one who holds your hand and cries with you. Jaded doctors are the absolute worst, and there are way too many of them out there. You deserve an ally and a partner while you face chronic pain like you are.
      This might help on your quest for a new doctor, it’s a letter from a chronic pain doctor to his patients over the years. It gave me so much insight, I was able to re-frame what I wanted from my doctors and communicate so much more confidently after I read this: http://more-distractible.org/musings/2010/07/14/a-letter-to-patients-with-chronic-disease I was going to write a post about this article but haven’t had time yet. Now I tell my doctors first off that I don’t expect them to fix me, and it seems to help us all communicate more like equals and less like defensive idiots!

      I agree, it’s the daily maintenance that kills us. I can’t keep up with anything, therefore I can’t relax. The things I need to be doing are all around me, but the thought of doing them only to be left in crippling pain afterwards is often too much to handle. And yes, yes, yes, doing those things that need to be done is not living… it’s just existing, and barely hanging on at that. I totally understand. I’m having trouble with the acceptance part too, I keep thinking that in order for me to accept all these limitations, I need the people around me to accept those limitations too, but that is so not true.
      I make the rules. I just have to keep reminding myself that. It’s still my life, even if I can’t do all the same things as before. I am still the captain of this ship. As are you!
      We are gonna remember what it’s like to have fun again, I swear! Even if the definition of fun has to be slightly altered in the process. 🙂

      Thank you for all your kind words and I hope against hope that the doctor-finding process goes as painlessly as possible. I will keep my fingers crossed for you, my dear!

      Love,
      Jessi

      Liked by 1 person

  2. abodyofhope says :

    Oh man, trying to hold back my chuckle through my chronic migraine. Uggh… You are so right on. I think even my sweet angel of an understanding husband probably thinks I’m enjoying myself and doing my relaxation exercises, just hanging out…chillin’. When many days (I’m so glad it’s not every second any more) I’m just trying to breathe.
    Another nail on the head entry that makes us feel less alone.
    Keep having faith in something better coming for you.

    Liked by 1 person

    • Jessi Finds Out Fibro says :

      I’m so glad it’s not every second now for you as well! Wish your migraine could tone itself down right now, I’m sending you all my spoons, I probably don’t need them today anyway. Hopefully they get to you in time 🙂
      I’m also glad I’m not the only one who has a totally sweet partner who just kinda…. doesn’t get it sometimes. And how could they! Also, I wouldn’t want him to go through this kind of pain every day, all day. He is in enough chronic pain from his hips… I’m wondering if it hasn’t progressed to CRPS. He’s had surgery after surgery that never fixed his hip/back pain. And I can see it in his doctors’ faces, they just don’t want to tell this 6.4″ guy that his pain might be permanent, but they’re thinking it. Bahhh… I really, really hope not! He’s a trooper, but his pain can be just as overwhelming as mine, only minus all the other symptoms like hotflashes, dizziness, pains all over the body, feeling like I can’t breathe or swallow, crushing chest pain, numbness, tingling, nausea, etc etc etc. Fortunately he doesn’t have to deal with all that, but what he deals with is enough. I think he just assumes that his experience with chronic pain is as bad as pain can get, and I want to widen his perspective so he understands the worst thing he can imagine is not necessarily the same as the worst things that I go through. Our communication is just generally poor this year, but it will get back to normal as long we both keep trying, which we are. Lots of hard times in our lives recently, lots of grief, and so I keep my requests to a minimum and my ranting about pain to the internets, where lovely people like yourself actually do get it. Thank you for all your kindness, you’ve made two mornings in a row now! 😀 To the point where I haven’t even taken any pain pills today, and yesterday I was scarfing down the Lyrica, Tizanidine and Tramadol like pez, so I thought today was a lost cause as well.
      All them feels from you nominating me! I’m glad I didn’t take any of the meds yet, so I can still grin like an idiot and feel real happiness, even as the pain is slowly crawling across my head to cover my right eye like a big clamp. Worth it.

      Liked by 1 person

  3. abodyofhope says :

    Yay! Thank you for those spoons.
    You just don’t even know how much we have in common now after reading your above comment about your husband. I UNDERSTAND! I give up and just play the: “You win” game when we both know it’s a complete game, but for him, the loading on of compassion seems to work out. He and I are a HOT MESS!
    Yay for no big pain meds. Congrats on your award!!! I shared your post today with my RSD support group. Big Spoonie Hugs xoxoxoxoxoxo

    Liked by 1 person

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