I’m getting a lot of questions recently about my health and disability – a lot has changed in the past year, and I haven’t really talked about it online apart from posts on Facebook and Twitter, so I’d like to address some of people’s concerns and curiosities here. I’d also like to perhaps start writing a bit more again, so this is a useful way back into writing blog posts for me.
So, I’m chronically ill. What that means for me is that over the past few years, my health has been poor, and getting worse, due to an illness that I’ve had for a long time. In my own case, I’m still being formally diagnosed (read as: am on seemingly endless waiting lists), but my mobility, energy levels, and pain levels are all majorly affected by my condition. I’ve many friends with similar symptoms, who have diagnoses of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), EDS (Ehlers-Danlos Syndrome) and Fibromyalgia, to give a clue as to what diagnoses I’m potentially getting in the hopefully-near future. I’ve had regular pain since I was about 8 years old, which has steadily got worse to the point that it’s now regularly disabling, and I’ve had chronic fatigue since I was around 16 years old, which, again, has gotten much worse recently.
What does that mean for you?
My condition affects my joints mostly, and pretty much all of them hurt from time to time. The ones that are the most troublesome are my shoulders (which crunch with every movement and regularly partially dislocate), my knees (which can often not take my weight), my wrists (which get stuck and pop painfully), and my hips (which just refuse to work sometimes). My lower back has the most intense pain – indeed, when I’m in agony, it’s usually that f—-er that’s to blame.
On good days, I’m in constant moderate pain, and I’m able to walk slowly with crutches, for a hundred metres or so. If I exert myself too much, I cause pretty abominable fatigue the following two or three days, though, so I need to be careful with how much I do on any given day. I can’t really stand for more than a few minutes, and standing up for longer on most days can cause severe pain, dizziness and subsequent fatigue. My joints subluxate (partially-dislocate) frequently, especially my shoulders, ankles, wrists and knees. Cycling on my electric bike isn’t usually a problem, though if I ran out of power, I’d be completely stuck.
On average days, I’m in constant pain and have significant fatigue, and my joints are really unstable. I can’t walk much at all, and my knees feel like they’re going to collapse backwards with every step. Concentrating is hard, and even basic housework is out of the question. I can still cycle on my electric bike, but have to keep distances short.
On bad days, I’m stuck in bed in severe pain and debilitating fatigue. These days are usually triggered by doing too much the previous few days, and they’re extremely hard to predict. When they happen, that’s the plans for the day out the window. I’ve missed many days at work, festivals, lunches with friends, and time with family due to days like these, and it sucks so much. I’m learning slowly how to reduce days like these, but triggers can be small and seemingly insignificant at the time. Doing too much laundry, or standing in the shower for too long, or walking round to the corner shop instead of using my chair are all things which have triggered bad days.
I’m on an increasingly-hardcore painkiller regimen, which is slowly getting closer to managing my pain and making it bearable on bad days. I’m not exaggerating when I say my pain is close to unimaginably sore on the worst days. But, you kind of get used to it!
That sounds terrible!
Well, it’s not the best fun ever, I have to admit. However, I’m pretty used to it, and although my mobility continuing to decline is scary, I’ve largely found ways to accommodate my disability into my life. I’m trying to get a good painkiller regimen from my GP, so I’m able to function enough to work every week, as well as enjoy an improved quality of life and sleep schedule. I have a great support network around me of other patients and friends, who have helped me so much already. If you are one of those people, thank you – you’ve been amazing.
So, the wheelchair
I’m using a wheelchair most of the time outside of the house, to reduce my pain and fatigue, and to protect my leg joints from getting further damage. My chair is a Quickie Helium, which I got second hand from a lovely guy in Holywood and with some much-appreciated financial help from friends and family. These things are expensive – I’m learning that everything’s dear when you’re disabled!
It’s a great chair, and although it has some problems (I need the front castors repaired as they’re shaking too much), it has given me an enormous amount of freedom and energy to live my life. I’m able to go to more places, do more work, and enjoy more social activities with this chair than in any time in the past year – it really has impacted my life in a very positive way.
In future, I’d like to get a custom-fitted chair (this one is slightly too wide and I need a different geometry), and potentially a powerchair in future for my really bad fatigue days. Inaccessible housing is scuppering any ability to get powered mobility aids, though.
How can I help?
You can help by treating me the same as you did before I got ill, in most regards. Be aware that I may need to cancel plans at short notice, may not be able to do strenuous activity (even if you think it’s light activity), and may need to take a lot more breaks than usual. Please don’t try to help me without asking first as you’ll probably do one of us an injury (probably me). And feel free to ask questions if you’re a friend; I’m very happy to answer things.
What’s your health gonna be like in future?
My condition is chronic, so I’ll have it for the rest of my life. It’s also likely to be progressive, so I’m likely to see my mobility degrade further, and I’m starting to get additional gastrointestinal symptoms which could be Fun with a Capital F in years to come. However, with protective measures like not walking, doing careful exercise and managing my pain properly, I should be able to largely protect my mobility and quality of life from degrading too quickly.
I have some of those symptoms too!
If you’d like to talk about this because you think you may have something similar and would like a listening ear or some signposting to information, please get in touch!
And yes, I can do a wheelie.