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.

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.

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.

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.

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Had an article about disability shelved by the paper. That's bad. I'm getting a piece on politicians entitlements published elsewhere. That's good! (Dress is Simplicity 1419 in Alexander Henry Back in the Saddle)

A post shared by Siobhan Simper (@siobhansimper) on Jan 11, 2017 at 9:21pm PST

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).

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.

 

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.

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.

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.

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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 (@siobhansimper) on Sep 27, 2016 at 4:43pm PDT

 

 

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.