…..not a picture. My first major period of p.e.m* since April. In some ways, wow, I’ve had a period of being pretty well, and free from being in a perpetual balancing act between living and causing damage. In other ways, fiddlesticks* I’d forgotten how horrible it is. I’ll not go into detail (the worry of seeming to be whinging holds strong), but suffice to say I’m hoping against hope that I can manage my way out of this one without going back to the state I was at the start of the year. My mental health (sorry again to those who think this shouldn’t be mentioned) is much better which means I’m not using as much energy dealing with anxiety symptoms, so I’m hopeful this will be temporary.
I try to limit the mentions of M.E. on here, mainly because I don’t want to bore people and I certainly don’t want to inhabit my illness as my identity, but it is part of the life I have now, and affects behaviour, productivity and attitude.
I was asked once why I write publicly about “my troubles” *. An altruistic reason is that any illness is incredibly isolating, and reading that someone else experiences a similar thing is helpful. For myself, I like to get these thoughts out of my head. I don’t see many people, and see even fewer that I feel confident to talk openly with. That’s before we even start on the utter embarrassment of brain fog striking mid-conversation. Writing about this, amongst many other things, gives me a voice. I’m not the type who can chat to chums about how I feel and my demeanour rejects offers of sympathy. Including the odd M.E. post as part of my blog works for me, and it seems to be useful for others, so I’ll keep writing about it. For now.
Some days my victories are tiny. Getting dressed, (yay!) showering (yay!) but they are victories, and some days they cost as much as doing the big things. I don’t want to be lauded as “brave” or “overcoming all the odds”, and I don’t want sympathy other than from those daft enough to have maintained a close tie with me. I do like a bit of understanding and it’s lovely when I venture out and people are genuinely happy I’ve made it. That’s ace. The silly thing is that whilst the media loves a paralympian or someone who has “battled” a life threatening disease, it’s almost as though the folk who are just managing through the small stuff are letting themselves down. Achievements are significant regardless of size. Whether recovering from injury or illness or living with a chronic condition some days managing to stay alive is an achievement in itself.
I’m doing a tiny cheer for us all.
*p.e.m stands for the wonderfully dramatic sounding post exertional malaise you can read more about it here
*my Mom reads this blog. I still won’t call someone a cow in earshot of her.
*their words not mine
Hi Kathryn Anna. Thanks for sharing and reaching out via your blog. We all need love and connection. I’m sorry you don’t feel you can share your life and illness with many people, but glad you’ve found the way that works for you. Hugs, Brad
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My (rather self-centred), reaction to this, is that it is good for me (and I hope others) to read about your experience of M.E and the way it reacts with, affects and is affected by, your mental health.
Neither are talked about much, and both are better described when written about.
Although it is not ideal that you are also experiencing these things, it’s really quite reassuring when you describe something familiar. Or maybe just less isolating. Even when that is you describing a fear of mentioning it too much!
It’s also reassuring that you do also feel the need to talk about it, in spite of this worry, as I sometimes feel I should aspire to be the strong and silent, secret sufferer, but I strongly suspect that that would do me no good.
Coming across a blog by a fellow person with M.E has made me get back some confidence before, as well as being the reason that I obtained a diagnosis without any painfully long process of multiple months of doctors visits. A blog about glandular fever turning into M.E, mirrored my experience so closely, that I was able stop worrying, wait a couple of years, pop in to see my GP, explain my suspicions, symptoms and get diagnosed in a really short and stress free time. So blog posts can have a huge practical impact for particular people.
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