Living this life and deteriorating is hard beyond belief to cope with. And when there's nothing you can do other than try and float to stay above the surface of the crashing waves, the water that takes every attempt to drown us – we survive, in the face of it all.
Katie
Severe ME Story – When improvements happen at snail's pace and deterioration can happen in an instant…
It’s like watching in the third person as life snowballs and the symptoms build. The months and years of self-management, pacing and trying desperately to improve, the small increments it took, crumble as life slips away.
Recovery, and illness, are not linear. A statement said time and time again but that does not ease the pain it causes. It’s a winding road with many twists and turns in the path ahead, and many plateaus and long-winded bits, but also those already conquered. We can forget how far we have come. Because you can come such a long way and still have a huge climb ahead of you. But it isn’t just the climbs… it’s the falls. The little trips or straight falling off the edge of the cliff.
Some are lucky and don’t have that and make regular improvements, likely very slowly, or in some cases remission even if it can take years. Some people only deteriorate on their downhill path as it slowly happens, their progressive illness overtakes them, and some people climb the mountain only to drop off the edge of it.
@diaryofachronie_ (Instagram) did a fantastic post recently about the heartbreak of deterioration. The internal conflicts. The grieving, torment, wondering, dreaming, hoping and soul destruction. And it really is soul-destroying.
It may happen slowly over time, but many times it can be triggered truly in an instant. How it can continuously happen quicker than we can keep up with or process. I get both, two years of gradual decline and in the last year the big ones I didn’t recover from were mostly viruses.
There are times I took a chance for joy and it bit back. Or got too excited with possible activity levels and bit off more than I could chew. Those times I could blame myself. But it’s the cruelty of the illness. All after it took so long to get anywhere with pacing.
Living with low quality of life is incredibly hard. There is a lot to grieve and wish for. Then simultaneously either declining or desperately trying to hold onto the last of our quality of life. The balance of trying to avoid deterioration is terrifying. Wondering how soon you will be doing those activities again whilst also knowing you may be doing even less eventually. Watching your remaining quality slip away is horrifying. I’ve felt frozen in time watching it happen. Wondering how far it will go before it stops. One after another it’s overwhelming and all-consuming. No time to catch up and accept.
Constantly trying to adjust to new limits, sometimes the deterioration happens before we can even process it. Hit when coming up for air.
We are pushed by health professionals, family and friends, told to take all sorts of risks and given suggestions of harmful therapies. And then scorned for not doing what they want and blamed for getting worse when we follow their advice or are forced into it.
Living this life and deteriorating is hard beyond belief to cope with. And when there's nothing you can do other than try and float to stay above the surface of the crashing waves, the water that takes every attempt to drown us – we survive, in the face of it all.
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