5-year CFS annivarsy blog post part 2

Ok, ok, here a few more words. My last one was so short, because I feel like I’ve said everything already.

Credit: the internet (?)

Basically, my life is like this meme now, except with fatigue. 

And instead of ‘make it stop, make it stop’, it’s ‘let me out of this stupid chronic illness prison!’.

 

But mostly, meh, I’m used to it. This is my life now. 

It’s been five years and the longer you have this illness the lower your chances are of ever recovering. Getting sicker again last year, after two years of exceptionally slow and not-always steady improvement, was hugely disappointing and hope crushing. 

But overall, I’m still okay. 

I have never once thought “Why me?”. I’ve always thought that was a stupid question. I don’t believe in fate, or god, or at least that sort of God who has an influence on the small-scale events of the world. I’m an agnostic tending towards atheist, but hesitate to lock-in atheism because existence itself is an incredible, unexplainable miracle, a gobsmacking mystery we will never fathom. 

God or no god, I think the concept of ‘deserving’ something is inherently invalid and needs to be put in the bin. Also the platitude that god or “the universe” is trying to teach you a lesson to make you a better person, is rubbish and codswallop. You can learn valuable lessons from crap if you're not too traumatized, but nothing is “meant to be”. Although I would very much like to know the scientific explanation behind ME/CFS, I don’t believe there is any universal plan or reason. It’s just a particular version of shit that happens. Life and health is a fragile thing. Grief and loss will come to every person, in an infinite variety of shapes and forms. If I could trade in my life, for a randomly chosen life of anyone else on the planet, would I do it? No way! Chances are I’d get a much worse deal than this. And for all the shit that me/cfs is, it’s still my life, and I’ve gotten quite attached to being me. 

(Here is a more recent selfie than in my last post, which was taken I was actually only 17 - and who doesn't miss their body from 21 years ago?)

I’m going to keep missing my previous, exuberant, healthy life, sometimes more painfully than other times. I’ve got more times ahead of loneliness, frustration, miserable sickness, stress, grief and loss. When more shit happens (bushfire, and death of friends or family are the events I’m scared of most), it will be compounded by the fact that there’s nothing I’ll be able to do about any of it, not even go for a walk to clear my head. I feel very vulnerable  and I don’t know how I’ll cope, but I’ll figure it out at the time, or at least endure, one day at a time.

Maybe I talk about my me/cfs too much on social media, but I’m not constantly sitting around feeling sorry for myself. I’m very aware that there’s much to be grateful for, and things could be a lot worse. But also, my disability is significant. And the massive hooha that people made over temporary covid19 lockdown last year validates the fact that this is challenging. This is year six of me/cfs for me. I’m facing lockdown for the rest of my life. With extra periods of miserable sickness on the side, and without the ability to exercise, garden, or even do my own laundry. 

I don’t idolise healthy life - the stress of a career, the hectic pace of life. I don’t idolise having a relationship, or kids. In fact, I probably do the opposite and grinch a bit about them in my head, to try make myself feel better about being indefinitely disabled and single, and not realistically able to hope for these things. (It’s not necessarily the most generous mindset, but also relationships and parenthood are often romantically glossed over in the mainstream media). I don't think I’m  jealous of healthy people. If I see a person running or cycling by my house, I just miss that feeling in my own body. I do get a bit grumpy when people complain about being ‘stuck in town’, for say, a week, without going on an outdoors adventure. But, that’s exactly what I was like before I got sick. I thought that I needed to be off doing things all the time and squeezing as much adventure and joy into life as possible. Sitting still was boring. I am grateful for the lesson in humility, patience and slowness. I did not know my own health privilege. 

I’m going to keep trying “treatments” in the hope of improvement, even though they are most likely a waste of my time, energy and money. At the moment I’m trying a Chinese medicine practitioner, and I’m committed to giving it a go for six months before I assess whether it's useful for me. (The acupuncture seems to have a good temporary effect, but I haven’t noticed much overall benefit in 4 months so far.). I’m fortunate to be able to afford this probably futile experiment. 

There are still diets and bla bla that I should try. But also, f*&^ diets. I already eat really well most of the time, I already have a very restricted life, and I resent the weird relationship with food that stupid diets impose on me. Especially because different people are equally passionate about raw vegan,  or 100% meat diets being able to miraculously cure all ills. The TCM practitioner has told me not to eat any fermented foods, yet the internet is full of people saying they cured their autoimmune diseases with sauerkraut and kombucha. Who to believe? 

I’m 100% confident that if my health does improve, I won’t be held back from re-entering the world by fear or deconditioning. These will be factors, but I know I love doing things, and that being sick and in cfs-prison sucks. My third most heartfelt desire (after world peace and global environmental restoration) is to be well enough to be able to go for a walk in the bush again, or hang out with friends without constantly worrying about being destroyed for days from spending too much energy laughing too much.  If I start to get better, it will be an obvious feeling in my body. It will feel like “not feeling sick”. And I’m patient and experienced enough to know how to test the boundaries of my exertion tolerance ridiculously carefully and slowly. Writing this paragraph seems a complete no-brainer, but it’s not unlikely I’m going to have to explain this to another doctor in the future, who does not fully understand that me/cfs is a real physical disease and in my case, not at all correlated with trauma or mental health issues. (Sighs deeply, bangs head against imaginary wall, screams internally, feels betrayed, belittled and devalued by the medical system). 

In the meantime, I keep figuring out how to live within my limitations. This year I was approved for a library book delivery volunteer, who is much older than me, and also has a limp - a visible disability compared to my invisible one, so I feel awkward about that. But thank you to the state library and community volunteers for being wonderful!  And I’m applying for the NDIS, which I feel weird about too. But I actually am too disabled to do many things for myself, and I would be up shit creek without help from my parents and friends. 

So yeah. Five years. Shit. But there are still many wonderful things about my life. Friends, the garden, the mountain, books, dogs, when I get to go sit by the sea, and grey fantails that make cute little trills and do crazy aerial dances chasing insects above the treetops out my window. So, I’m alright. 

Here is a particularly magnificent sunset from the other night. 

Have I said anything new?