Health update: relapse upon relapse

Warning: contains GIFs

Hi folks! A while back, I wrote about the relapse I had encountered (in October!). I figured it was time for another health update.

At the time, I had gone from being able to drive, take myself out, go for walks, and potter around shops by myself, to not being able to walk the length of my driveway. Driving is out of the question, my body lost a huge amount of strength (which frankly, I couldn’t afford to lose) and all my activities became closely supervised.

The Grinch. Text: hate, hate, hate....double hate! LOATHE ENTIRELY!

When a relapse like this occurs, there is a pacing strategy which I implement to manage its effects. First, I must maintain a baseline of activity which I can perform even on my worst days. This time, it was sitting upright, having meals at the table with my family, showering, leaving the house once a day (even if just taken for a drive), and one social event a week (eg a chat with a friend – not social functions!). Once the baseline has been established, I wait for the relapse to plateau, and build myself up again, step by excruciating step.

Except, this relapse has not plateaued. It is gathering speed. Whenever I think I have finally reached some level of stasis, I have another setback. I am continually being surprised by the devastating intensity with which this disease strips away my abilities.

Nelson from The Simpsons. Text: ha-ha!
Illness to me.

One such setback occurred a week or two ago, when I awoke feeling dramatically weaker than I had been the day before. I put on my favourite skinny jeans – only to find I could not move in them. I may as well have been wearing a straightjacket. I frantically tried on other items of clothing, only to find that which had been entirely wearable a week ago was now too constrictive to move in.

This is a difficult concept to explain. All clothing provides some kind of resistance to the wearer – resistance which is so immeasurably small that unless you are wearing the tightest of woven outfits, you would not notice it. But for my now-weakened body, the minute amount of resistance that clothing provides is too great, and I cannot function in anything but the loosest or stretchiest of garments. My limbs are not strong enough to move against fabric, and I literally cannot breathe in anything that skims my chest.

Woven shirts, jeans, and skirts are out. So are fitted dresses, all but one comfy bra (ugh), and tees that are not oversized. In other words, my entire wardrobe, carefully sewn and op-shopped, has become unwearable to me.

A woman models a hot pink Juicy Couture velour tracksuit.
I really hope Juicy Couture tracksuits don’t feature heavily in my future. Let’s face it, they’re probably too tight-fitting anyway.

This is a terrifying development, and one that seems to increase in severity every day. I once had to change from my loose-fitting, lightweight denim crops to viscose pants in the middle of St Vinnies because I found I could no longer move while carrying their weight. My sewing no longer consists of planning exciting garments, and is instead just me frantically altering store-bought clothing in the hope that it will not make me sick. I live in fear of what new demands this disease will place on my body.

Above: no more fit and flare dresses for me

 

We live in a world of signals, and our clothing can signify messages about ourselves. To me, the routine of selecting a fun, colourful outfit was the best panacea against the soul-destroying monotony of life with a chronic illness. Even when housebound, I derived enjoyment from wearing carefully curated outfits, complete with jewellery and my hair done. It was one of my only pleasures, and made me feel that I was still Siobhan, despite all the horrors of my illness (and they were horrible times).

A woman stands in a garden. She wears a fit and flare dress made from a botanical print.
I made this dress while housebound, though obviously have worn it out and about since then.

Being restricted to functional clothing reminds me of being bedbound, and losing all control over my appearance as I lost control of my life. All I could wear were loose-fitting, men’s tees, and track pant shorts from Target (shudder). I was stripped of my identity, and was just a shell. Being bedbound and completely incapacitated is a place to which I do not wish to return, yet I cannot seem to halt the inexorable slide backwards.

The symptoms I am now experiencing are like none I have felt before, except perhaps when in bed. When my symptoms are so far out of alignment with my current abilities, as they are now, the symptoms inevitably drag my body down to a state of abilities that match, rather than the converse. In other words, I relapse.

Hans Moleman from The Simpsons falls to the ground under the weight of the oversize knife he wields. Text: -whimpering- down I go.

 

So, although this post may seem to be just about clothes, it is not. It is about living with an illness which strips me of all bodily autonomy, about having yet another pleasure lost to ME/CFS. It is about me losing the fight to illness, day by day. Clothing – and by extension sewing – was one of the few tools I had left for self-expression. Now it is gone.

I can no longer remember what it feels like to enjoy choosing outfits in the morning, to plan exciting sewing projects, or to look at clothing without feeling like I am going to throw up from anxiety. I feel like I have lost another of my very few pleasures in life, and part of myself.

Scene from cartoon Daria. Daria's mother: do you have to put everything in such a negative light? Daria: Could you possibly be referring to the harsh light of reality?

I am not sure where this relapse will end, though signs are troubling. Other symptoms from worse times are cropping up again: the lights are too bright, and there is no room dark enough to escape; the air burns my skin to the point where I sometimes claw at it in an attempt to relieve the pain; and every time I go to bed I need more and more rest, yet arise feeling worse than before.

Besides, the inability to wear clothing is just an indicator of a greater weakness. It is as if I am trying to move through molasses – my limbs will not function properly, and every movement requires more energy than I can amass. My breathing is heavy and laboured. I can feel the immense force of the illness crushing me, and I fear one day I will no longer be able to resist.

Everything is fucked.

Perhaps the worst part is knowing that I have expended so much energy pursuing medical treatment, yet am near always rebuffed – or worse – by those I beg for help. I am just so weary of working alone against this devastating illness.

 

As for the blog: I hope to keep writing, but it is becoming more and more difficult. I have a ridiculous backlog of projects to post, so fingers crossed there will be plenty of FO’s to come! After that, I aim to continue to sew things that I really like, even if I cannot wear them. Perhaps it will give me hope that things may turn around one day, and I will be able to dress like myself again.

My name is Siobhan, I'm 26, and for all of my adult life I've been one of the #millionsmissing to ME/CFS. I've missed graduating from uni, having a job, living out of home, and independence. I'm missing weddings, birthdays, Christmases and funerals. I'm missing my family, and the chance to leave this small town in which I am now trapped. I've seen my elderly grandfather once in 6 years. My life is, for the most part, confined to the house, bed or wheelchair. I've been so sick I couldn't talk or understand speech, sit up or feed myself. My mother has had to wipe my ass. I nearly died from starvation because no one was interested in my suffering. What I am missing most is respect and dignity; from society and the medical profession. I am missing seeing this disease which has ravaged my life actually be treated seriously and have research funding dedicated to it. I often say I died to my old life 6 years ago. It needn't be this way: if we had fair funding and proper research there were not be so many suffering. I call on our leaders to treat this disease as they would any other and fund research + treatment. #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #pots #dysautonomia #butyoudontlooksick #spoonfighter #sensoryprocessingdisorder #sensoryprocessing #spd #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ptsd #trauma #ocd #anxiety #mentalillness #MEaction

A post shared by Siobhan Simper (@chronicallysiobhan) on

 

 

Note: I debated about whether to post this, as my personal struggles seem immaterial in the face of the crises the world is currently facing. But I figured this is a chronic illness blog, so I wrote about chronic illness. One of the cruddiest things about being ill is that it doesn’t give you a break, even when the world is breaking up around you.

Author: Siobhan S

20 something, living in country Australia. Spoonie profile: ME/CFS, dysautonomia, anxiety. All about sewing, knitting and food. Unapologetic feminist and disability advocate.

26 thoughts on “Health update: relapse upon relapse”

  1. Hi Siobhan! I’ve enjoyed your blog as much or more than any that I read, since I discovered it a few months ago. I’m so sorry to read about your relapse, and I suspect like many people who read your humorous and poignant writing, I find myself wanting to help you. I really hope you don’t mind if I include a link that I hope you will find interesting. I have had my own struggles with autoimmune difficulties over the past 12 years, although never to the devastating extent you are dealing with. I have lost all faith in traditional or allopathic medicine and turned to alternative cures which has made a huge difference for me. I am a huge convert to orthomolecular medicine and every time I read about your struggle I wonder if you’ve heard about it or tried it. Here is a link to my favorite website about it, in case you are interested or haven’t explored it before. The nice thing is that vitamins, at least in the US, are a treatment you can try on your own, without needing to convince a narrow minded doctor about your needs. Be your own guinea pig! I hope you are not offended by me reaching out to you with this advice, I just couldn’t not tell you, and I absolutely realize that I’m speaking without full knowledge of all your pain and all you’ve tried. Just in case this is a new idea to try, here’s the link (he doesn’t sell anything but books) http://www.doctoryourself.com/fatigue.html. Best of luck to you and I really hope you feel better soon!

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    1. Hi Kate, I’m glad to hear you enjoy my writing, and appreciate the kind thoughts. Autoimmune diseases can be horrific and I’m sorry you’ve had experience with them. I’ve tried plenty of vitamin therapies without much luck, and in some cases they caused active harm! (Bloody vitamin C IVs, though I think I had an unscrupulous GP thrown in the mix too.) But I’m glad you have found something that works for you – we are all different, and sometimes when there isn’t much research we have to be our own guinea pigs as you say. Don’t worry, I’ll keep looking for something that works for me! Cheers.

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      1. Siobhan, I am so sorry to hear of your worsening situation. I know dealing with the limitations of disability are soul draining, especially when you keep having to adjust once
        again. I pray this relapse corrects itself soon so you can get back to the things you enjoy.

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  2. Hi Siobhan, I love reading your blog. It usually brings a smile to my face, and makes me think of 1001 things I could use that sheet in the back up for the cupboard (gotta finish a whole heap of other project first though). Today though I cried. I am so sorry you have to go through this, I can’t even begin to imagine the loss you are feeling at the moment. I wish you well for the future and I am sending a big warm hug Sue x

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  3. Hi Siobhan I do hope you keep writing when you’re able. I’m so sorry to hear of your relapse and so wish I could give you words of encouragement or news of a miracle cure. I’d found supplements that I’d hoped would help me on my ME journey (to use the politest term I could think of to describe this experience) and they really helped with pain and sleep but buggered up my liver. Back to pain killers and sleepless nights for me 😬 Anyway I really appreciate you sharing your story, you write so beautifully and honestly, when I’m foggy I can’t string a sentence together but your words get through to me. One thing I have found that keeps me relatively sane when I can’t sew or read or do anything really is ‘virtual sewing’ – better than meditation 😉 I close my eyes and go through the whole process of my next imaginary project. And I never have to rip stitches out and it always go beautifully. Imaginary hand sewing really seems to soothe me too, go figure. The last few things I’ve actually made IRL have been kind of wrap around dresses based off a 1930s pattern out of a really soft cotton voile and lawn. They don’t have ties but wrap and button like a house coat. Not very glamorous but soft on the skin and loose without anything cutting into me. I don’t know if something like that would help you but thought I’d mention it. Take care of your beautiful self xx

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    1. “Virtual sewing” sounds like a great idea! I do enjoy planning projects in my head, sometimes you need the distraction to soothe yourself. Wrap dresses might be worth investigating, especially if they are made from a forgiving knit. Thanks for your thoughts!

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  4. Sorry to hear things are on a downward trajectory at the moment and I hear how awful it is to have a central joy in your life and an important aspect of self expression denied you by your illness. I wanted to offer some encouragement in trying to claim what you can out of a horrible situation. Who’s to say you can’t look fabulous in your day pyjamas. Tent dresses or sewing with knits may not be your thing but you can still get some colour therapy and joy out of clothes. I get quite incensed about the need for women’s clothes in particular to be verging on painful before they are considered beautiful or even acceptable for various public dress codes. Your clothes need to be as comfortable as they can be for you at the moment but that doesn’t mean you should also be constrained by the idea that adornment or embellishment are not permitted alongside comfort and practicality. I hope that there are some beautiful lightweight viscose jersey prints or arty double gauze fabrics out there with your name on them

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    1. Oh I do like the idea of looking super glam in some day pyjamas, like 30s style. It’s just been a horrible shock to not be able to wear any of my clothes which were never actually constrictive to begin with – my body’s just become so picky. I absolutely agree that fashion should not have to be painful or a punishment for women. So I’ve always gone in for comfort! (Eg yoked skirts, loose shirts.) It’s just that a lot of formerly comfortable clothes are now a no-go!

      Liked by 1 person

      1. Hope that didn’t come across like I was saying it was your negative evaluation of the non-constraining clothing. I mean other people ‘at large’ as it were or like ready to wear choices. Like the options out there might constrain you even more when it’s hard enough already. Anyway I just wanted to send some positive vibes your way. You write really well on chronic illness where the institutional failures are complex and demoralising and it is such a gift to share that truth with the world. And you deserve to be swathed in beautiful handpainted silk scarves (or, I don’t know, epic batik trackie-Bs!) while the wellbeing pixies serve you smoothies in champagne flutes. Take care.

        Liked by 1 person

  5. Thank you for sharing, it was an excellent read and I hope you can continue to blog as I love reading them, especially the well placed pic, GIFs and memes! Wishing you strength

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  6. I read your blog silently for a while, and I like your sewing.
    I don’t know you, and I can not even imagine what you’re dealing with, but this is so unfair (to be polite).
    So today I comment because I want to send you a lot of positive thought, a lot of love, and let you know that I really hope that you’ll be better very very soon

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  7. Hi Siobhan! I’ve been reading your blog for a while now and I really enjoy it. Your writing style is so engaging and I love your sense of humour 🙂
    I don’t know what I could possibly say to make you feel better, so I’ll just say chronic illness sucks, but you rock! Hugs, take care

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  8. I have absolutely no idea what to say to you that would be of any use to you at all. I cried while reading this post, my heart literally hurts. I so wish there was something I could do to help you, so I am going to do the only thing I can. I am going to pray for you. This is not something I write easily, as I am not a born again anything, especially christian. I am going to pray to the/my/your higher power.

    I keep trying to rewrite this so it sounds better, apparently it isn’t going to happen. I don’t write as well as you 😎

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    1. Haha, you should read the comments I leave on other blog posts and Instagram – they usually come out a jumbled mess! It takes a long time and a lot of work to polish my blog posts to a readable quality.

      Thank you, thank you, thank you from the bottom of my heart for your kind comment. Your prayers and thoughts are so appreciated – the kindness of online friends are truly what keeps me going through the dark times. x

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