A health update, and happy miserable New Year

Warning: contains GIFs

A beach scene.
Stingray Bay from Pickering Point, taken by my father on one of our now-rare afternoon drives.

Something that never fails to surprise me about living with chronic illness is just how precarious your existence is. One day, you can be feeling as though you are making progress with your health, or have at least stabilised, and the next, you find you’ve slid back into a particularly nasty and unique form of incapacitation.

That’s what happened to me at the end of 2017. I finally felt like I was in a position to address my POTS: I had consulted with my exercise physiologist and adopted lifestyle measures to alleviate its grip on my health (or, more precisely, my ability to maintain an upright position). I’d incorporated some prone exercises into my very gentle occasional morning yoga routine, and had managed to increase my afternoon walk to four whole houses – nearly half a block.

Suddenly, summer hit (or what felt like summer!) – and with it came a virus. No biggie, you may think, but viruses that may seem like a head cold to a Muggle* can be life-altering for someone with a chronic illness. As the early half of the year had been wiped out by a few colds that left me shivering and shaking in bed, unable to even sit up in a car, I knew I was in for a shitful time.

Hans Moleman wipes sweat from his brow and has his shirt burnt by the sun.
A virus in summer, what fun.

Unfortunately for me, this virus blew the others out of the water. Last summer, it took a few weeks for me to be up and out of the house again**. This time, I was housebound for about 2 months to begin with. And when I say housebound, I mean it! Barely able to step a foot out the door most days, difficulty walking, speaking, breathing and performing basic self-care.

When I finally managed to get out of the house for a short drive with dad, I found myself so affected I was walking into walls with my body rolling around as I tried in vain to make it go where I wanted to. Tears of frustration constantly welled in my eyes as I attempted to force speech out through unwilling facial muscles.

Above: I know I keep banging on about Unrest but it has very accurate representations of the symptoms I describe – you can see some of the slurred speech in the trailer.

 

It took a long time and a lot of hard work to be able to just sit in the car (passably) comfortably, let alone get out and go somewhere else. At one point I was so determined to get out, I grabbed my dad’s cane and had mum take me to a little shop in town. I must have looked a spectacle literally dragging myself around this shop with a wooden, gold-duck-topped cane, panting and on the verge of collapse. But I did it.

My next step was to send a friend to Chemist Warehouse to buy a hot pink aluminium cane for myself. Having never considered a cane for myself in the past, I was astounded by the difference it made to my quality of life. This wasn’t some weird, ableist hang up about using mobility devices (and if you’re here to comment how shameful using wheelchairs or canes are, GTFO), but a practical line of reasoning.

If you follow my stories you'll know I've been extremely unwell the past few months, set off by a virus. For 2 months straight I was completely housebound and unable to even step a foot out the door most days. I briefly recovered to the point where I could walk to the letterbox and go for a short outing but was hit again and sent back to square one. . It's been terrifying wondering where this will lead as it seems to be the "new normal". I forced myself up and out today with the help of my new friend the hot pink cane. I somehow survived but greatly fear the repurcussions, and that this will become a less and less frequent event. . . . #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #pots #dysautonomia #butyoudontlooksick #spoonfighter #sensoryprocessingdisorder #spd #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ruraldisability #anxiety #MEaction #millionsmissing #thisiscfs

A post shared by Siobhan Simper (@siobhansimper) on

Above: me and my new BFF.

I don’t have EDS, arthritis, chronic pain, or any similar condition which I assumed canes were best suited for. How could one help me? Ummmmm, in almost every way possible. My cane is like a lifeline for when my body gives up the ghost. It’s something to lean on, helps with balance (which I lose far more frequently than I realised) and acts as a tool for getting up/down steps and seats. I honestly couldn’t walk further than a few metres now without it. (And fully intend to use it to prod the next person who says some ableist shit to me.)

 

Of course, this wouldn’t be my blog if there wasn’t some horrible caveat to positive news. After a brief moment of confidence, including a lovely Christmas lunch at a friend’s house, my body pulled the rug from under me again and dragged me back to where I began, barely able to leave the front door or sit up in a car. As of writing, I do have slightly more mobility, but as the general rule of thumb of chronic illness is don’t ever think you’re doing well or feel happy about any aspect of your life because I will fuck it up for you, I’m not optimistic.

Ha-ha!
Chronic illness to me.

It must seem like every health update I share is news of another depressing relapse, but that’s just the reality of my life now. Although I do tend to make slight improvements and stabilise from each relapse, the general trajectory is down – 10 steps back, 1 step forward. And once new symptoms have reared their head, they never disappear, only lay dormant until the next time ME/CFS decides to fuck me up.***

So it’s been a depressing end/start to the year. I still lay in bed at night, feeling as though I’m going to throw up or pass out from not knowing what my body will be capable of the next day. Each trip out of the house seems like the last, and I am incapable of making plans as my abilities are so variable. I’m sure other spoonies will relate to the turbulence of the readjustment period after a relapse. It’s exhausting.

Oh! I just realised! I hate you.
Also: life, to me.

 

Thanks for staying with me to this point – it’s been a wild few months so I felt an update was well justified. I’ll try to post some pattern reviews soon. If there’s one silver lining from this experience, it’s made me realise that any sense of control over my illness is an illusion, and the best I can do when things get awful is buckle up and go along for the ride.

Above: I made some tees on RedBubble, too. Check them out at The Salty Spoonie.

 

 

*Or healthy person, whatever.

**At the Priceline 40% off sale. I checked my Instagram.

***Case in point: you may remember this time last year I had trouble finding clothing that didn’t restrict my movement. I made some progress on this through the year, now I’m back to spending half an hour in front of my chest of drawers each morning trying to find something I can move my weak body against.

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.

24 thoughts on “A health update, and happy miserable New Year”

  1. I know I walked in the middle, but would you please summarize (briefly/tersely/at length) what the medical world (Eastern or Western) has said about your condition. Thanks.

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    1. Hi Frances, I’ve written a five-part introduction series to ME/CFS which you can read here: https://chronicallysiobhan.com/a-dummies-guide-to-mecfs/

      And you can read about the controversies of research here: https://chronicallysiobhan.com/2017/04/29/betrayed-a-brief-summary-of-the-pace-trial/

      With some more updated research here (though the Rituximab trials were recently declared to have produced null results): https://chronicallysiobhan.com/2017/06/17/mecfs-research-matters/

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  2. I hate that this is happening to you. I’m walking a similar path recently, since the mid to end of December. I somehow managed to totally and completely kick my own A$$. It’s been miserable. This morning around 4am I experienced something I can only describe as a brain zap (maybe a seizure?), and I’m not on anything but B12 due to extreme chemical sensitivities, so it’s not that I’m coming off something. My brain is just freaking the F out and I don’t know why. Doctor Monday. Honestly, Siobhan, hoping this turns around for you quickly, hoping your upswing starts today. Thank you for sharing what’s been up with you. It helps to know we aren’t alone. Sending hugs n spoons

    Liked by 1 person

    1. I’m so sorry this is happening to you too. I hope you get some reprieve. I’m glad my post helped somewhat. I think it’s important to talk about the ups and downs because sometimes it can all seem fine through the lens of social media which is just not the reality of chronic illness. Best wishes and lots of hugs x

      Liked by 1 person

  3. Like not like. Beaming virtual spoons to you from cold dismal Birmingham. Jeez woman I love your blog but it wrenches my guts that there’s so little anyone can do for you [and several of my other pals, off- and on-line with similar issues.]
    Love the salty T shirt- my missus always says I should come with a warning label, maybe I should get one too? You could add a tagline- ‘Salty- and full of vinegar!’

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    1. Mmmmm……vinegar on hot chips. Wait, what were we talking about?

      I’d love some dismal cold weather sent direct from Birmingham! I’m shuddering with horror every time I look at the weather forecast now. Thank you xx

      Liked by 1 person

  4. Damn. How I wish there was some kind of fairness in life, like “ok, you’ve had your dose of batshit crazy debilitating illness, you are in line for complete healing. It will occur within the next month and you will stay healthy the rest of your long life.” That would be neat. Unfortunately life is horribly unfair, so I’ll just cling to the hope that some researchers with able bodies and minds are able to wade through the treacle and find a solution. In the mean time have some virtual hugs and spoons.
    Oh, and yes – an extra leg helps, doesn’t it? I love mine (two Nordic walking poles – I can’t drop them, and they’re easier on the shoulders than crutches).

    Liked by 1 person

    1. You made me think of that quote from Terry Pratchett’s Hogfather!

      Susan: “All right,” said Susan. “I’m not stupid. You’re saying humans need… fantasies to make life bearable.”
      Death: REALLY? AS IF IT WAS SOME KIND OF PINK PILL? NO. HUMANS NEED FANTASY TO BE HUMAN. TO BE THE PLACE WHERE THE FALLING ANGEL MEETS THE RISING APE.
      Susan: “Tooth fairies? Hogfathers? Little—”
      Death: YES. AS PRACTICE. YOU HAVE TO START OUT LEARNING TO BELIEVE THE LITTLE LIES.
      Susan: “So we can believe the big ones?”
      Death: YES. JUSTICE. MERCY. DUTY. THAT SORT OF THING.
      Susan: “They’re not the same at all!”
      Death: YOU THINK SO? THEN TAKE THE UNIVERSE AND GRIND IT DOWN TO THE FINEST POWDER AND SIEVE IT THROUGH THE FINEST SIEVE AND THEN SHOW ME ONE ATOM OF JUSTICE, ONE MOLECULE OF MERCY. AND YET — Death waved a hand. AND YET YOU ACT AS IF THERE IS SOME IDEAL ORDER IN THE WORLD, AS IF THERE IS SOME…SOME RIGHTNESS IN THE UNIVERSE BY WHICH IT MAY BE JUDGED.
      Susan: “Yes, but people have got to believe that, or what’s the point—”
      Death: MY POINT EXACTLY.

      OK that was a bit lengthy but it didn’t make sense unless in context. Nordic walking poles sound like an excellent idea! I never fail to be amazed by the ingenuity of spoonies. Hugs and spoons to you too x

      Liked by 1 person

  5. I wish I could wrap you up in a big hug right now – actually, I wish I lived nearby instead of on the other end of the globe, so I could keep you company during really shitty housebound times. I’m so glad that the cane is helping! I say if something helps, use it! Who cares what other people think? We have to use whatever tools we have at our disposal to get through this life and I’m glad you found something that is helping.

    It can be so lonely, and so depressing having a chronic illness. And when doctors can’t figure out what’s wrong with you, they inevitably end up trying to imply (or come right out and say) that it’s all in your head. The trailer for Unrest was so touching and it seriously almost made me cry. I’m going to check it out immediately! I don’t have ME/CFS, but I could relate all too well to even just the small snippets in the trailer.

    I really hope that your health starts picking up soon, that you start having more good days than bad. And I hope that one day the medical profession gets it’s collective shit together and starts treating people with chronic illnesses with respect and care, and works toward actually finding methods that will help with said illnesses. Quality of life is important, and everyone deserves to have a good quality of life.

    Sending you so much love, Siobhan.

    Liked by 1 person

    1. Thank you so much ❤️ I wish quality of life was considered more for people with chronic illlnesses. By everyone, not just the medical profession.

      It is lonely, and depressing, and frustrating. But kind comments like yours really help me though the tough times. Much love x

      Liked by 1 person

  6. Holy crap, you just described my life right now! I’m laying here debating whether there’s an alien trying to claw its way out of my body or some soul-sucking vampire trying to get in. I am sending you warm gentle hugs because, dammit, we need them!

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  7. Awwww! Just read this! Hugs and love, obviously! I’m so sorry you’re dealing with this. It sounds like it was such a tough year.

    Geeeeeez, BODIES. I want a cure, for all of us, and I want it now. Until then, I’m glad we’re writing about it.

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  8. (((HUGS))) So sad to hear this. With MS my immune system is very weak. I have been fighting a virus for a month now. I’m afraid of going out in case I get the flu too. The virus does not want to leave. :o( Which always starts the ball rolling, so I am on the edge, looking down into the abyss praying pleeeeease don’t let it get worse and cycle into something I too fear will be the next new normal.
    I’ve had enough.
    And it sounds like you have too. (((HUG)))
    Yes a cure for all!- my hope.
    I have used a cane for 10 years. I truly need a forearm crutch now if insurance would pay.
    I watched Unrest on our public TV channel this month. It was similar to MS in some ways and very eye opening and teaching about MECFS in other ways. One similarity is how other people want to ask you “Isn’t there something you can do?” OY! Slapping my forehead!

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    1. I’m sorry to hear you’ve been unwell too. Those viruses take a massive toll on an already unwell body. I’m so afraid of getting sick again, I might try to learn hygiene procedure from my GP!

      It is so terrifying, you’re right. I have those terrible fears every day, sometimes those fears come true which is the worst thing. They’re not unfounded all the time.

      I’m happy you watched Unrest, I bet you related to a lot of it. Here’s hoping for a cure, or at least some better times for us both xxx

      Like

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