Recently, I did something which I thought impossible. I went away for four nights, for the first time since becoming chronically ill 8 years ago. It was to the closest city: Geelong, 2 hours away, with my mother/carer/also chronically ill buddy. You might be wondering, how the fuck did you do that, Siobhan? I’m as shocked as anyone else! One night I just felt, for the first time well, ever, that I could do it. And by that I mean, do something, get sick, but not get permanently worse (which has been the norm these past 8 years).
A quick day trip to Port Fairy (25 mins away!) was my test run, then I threw caution to the wind and booked an airbnb in Geelong! I did, in a way, have the time of my life. I went to Westfield (and more importantly, MYER), got foundation matched and a full face done at MAC, caught up with Jen for some op shopping, and saw my grandfather for the first time in years.
But, in another sense, it was a horrific week. I felt more sick than I have in a long time, and now that I am home, know that the recovery period will be prolonged and brutal. I have done a lot of thinking since on the nature of living with chronic illness, and the impossibility of reconciling feeling so terrible all the time with having any semblance of a good life.
It is hard to say whether I enjoyed myself while away or not. I had fun, I suppose, but not without feeling the excruciating weight of my illness the whole time. When I was not doing an activity I was in bed or the (more comfy) recliner, struggling to breathe, and acutely conscious that I was using up weeks’ worth of energy just existing in this novel environment.
I wrote a post on Instagram recently pondering these sentiments. As Jessica pointed out in her post, as spoonies we just wish to participate in life. But can you participate fully if your illness levels are, “if I was able-bodied, I’d be in an ambulance by now”?*
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Hi, Insta pals. As you may or may not know, last week I went to Geelong for my first holiday in the 8 years since I’ve been sick. Though I had a great time in many ways, I’ve since been wondering about the whys and wherefores of living with chronic illness. . I am acutely aware of the privilege of even being able leave the house and sit upright in a car two hours, let alone spend four nights away from home, so here’s a shoutout to my spoonie brothers and sisters who are confined to their own bed right now. But this privilege came with a cost – one I anticipated, but could not fully appreciate until I was in the throes of my illness, lying in our hired unit, struggling to breathe and wondering if this was The End. . Just the very act of being away took such a toll that I almost felt, despite having the most fun I had in years, that I could not then or ever enjoy myself due to the crushing pain, fatigue and pure sickness weighing so heavily on my body. It lingers on now, and shall for many weeks I suspect. . As @jessicahollyabdo wrote, I just want to participate. And I did – but not without the hidden cage that separates me from others, that prevents me from doing even the most basic of tasks without suffering. I’m both happy and sad about my trip, and I’m sure will continue to reflect on it in the weeks to come. But right now, guess I'm just gonna stare pensively into the distance and bitch about being so damn sick. . . #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
I see a lot of self-criticism in the chronic illness community about an inability to fully adapt to life with chronic illness, in particular, the pacing required and self-blame to follow if an activity takes more energy than anticipated. This seems unfair. There really is no way to adapt to this life, as it is one without rules or logic.
Perhaps this is why able-bodied people struggle to understand our lives so much. Theirs is not a tank that can run out unexpectedly, be full one day and depleted the next 10, they do not suffer extreme and unexpected consequences for being fool hardy enough to get out of bed and do the grocery shopping.
That is why I was so reluctant to share my plans until they were in action: I dreaded the inevitable remarks about how well I must be. The assumptions that I could do this all along, if I’d just put my mind to it. I have still not told those who I know would use my attempts at normality as evidence that I was Really Faking It All Along.
Perhaps I expected too much from myself: it seemed logical to me that if I could travel 2 hours down the road, then I could surely travel to Melbourne, go to an actual event, or visit a city specialist. I now know the cost was so great that going to Geelong once a year seems like a lofty goal, and that is not a quality of life I’m willing to accept.
It was also quite a shock to discover that, for the most part, my 93-year-old grandfather has a better quality of life and yet better access to care than either I or my mother do; a matter on which I am continuing to reflect.
All these muddled thoughts are part of my considerations upon how I can live a good life with chronic illness. After the blow of the negative results for what was literally the only phase III trial for ME/CFS, ever, I have come to realise that there is no hope for recovery in the near future. The more medical professionals I consult, the more I realise that I am the most knowledgable about my own condition. Therefore, I have to forge out a life for myself, as best I can.
It is overall a positive outcome, I suppose, to do a thing and crash, but not get worse.** That is what I’ve wanted these past 8 years. But it seems a poisoned chalice. My holiday was meant to be an escape, but there really is no escaping chronic illness. So, like many other spoonies, I bumble along, trying to best balance pleasure and payback.
What is “worth it” differs between every person with a chronic illness, as does what is physically possible. I’m still trying to figure these things out for myself, in the ever-changing, always-confusing, and utterly distressing fog that is living with chronic illness. But some days, it would be really fucking handy to have a manual to tell me what to do!
How about you, fellow spoonies? How do you cope with figuring out your limits and abilities? And that feeling of a possibly indefinite, absolutely horrible crash?
*This is probably an apt summary of life with chronic illness, really.
**So far. My body’s a tricky bastard most times.