Warning: contains GIFs
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.
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
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.
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.
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.
Look what arrived today!! 😱 My salty tee! Now everyone will know how salty I am before I say a word ¯\_(ツ)_/¯ . . . @redbubble Salty Unisex Tee in grey heather – http://rdbl.co/2Ba6iZr . . #salty #redbubble #redbubbleartist #redbubblecreate #mecfs #me #cfs #cfsme #spoonie #spoonielife #chronicillness #chronicallyfabulous #dysautonomia #butyoudontlooksick #spoonfighter #sensoryprocessingdisorder #spd #disability #criplife #crip #cripplepunk #cpunk #invisibleillness #ruraldisability #anxiety #MEaction #millionsmissing #thisiscfs
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.