First, here is a heart wrenching poem about living with M.E. written by an online friend and fellow sufferer:
https://www.omf.ngo/poetry-submission/united/
There are some other great poems in the series so if you have time, take a look.
I wanted to write about my illness course. For instance, sometimes I wonder if I've improved over the years or just adjusted my life and expectations so much that I interpret my health as improved. The first year or two I probably attempted the most activity (life, work, exercise, social) in order to continue on with my life. Year one was horrible, but I also did the most.
It's so long ago now trying to recollect, but years 2-5 I feel like I was at my sickest. Then things just plateaued for the most part. I've experienced what I call relapses - periods longer than 2 weeks and up to 3 months where I've been sicker and lost considerable function. However, I always seem to plateau back to that same level of crap :)
And then of course those horrid 'crashes' which are the effects of doing to much - for me, these arrive between 24 and 48 hours after doing too much but typically last less than a week. It's like having a mild case of influenza but the weakness, ick, and dizziness is influenza x 3.
Another reason it's so hard to know if I've improved over time is I've both de-conditioned and aged. I've been sick going on 17 years, more than 1/3 of my life. It's hard to know what living in healthyish late 40s body might feel like. I have no idea.
One thing that's come with both age and years of suffering and being limited is an understanding that this is the life I get - life in a sick body. Which means for me, some things are worth crashing for (not relapsing, but crashing). The last few years I've been playing with fire a bit in that I'm pushing myself pretty hard. I'm working part time and trying to be a care giver for my father, and I'm trying to eek out some non-work and care moments as well. While I do love being able to work, I do NOT ever want to live again in that relapsed body. It is absolute hell on wheels.
Has this fear held me back? Yes, likely, on the other hand it may have also saved me from going too far, pushing too hard. And having lived this M.E. life for over 16 years, I've learnt something about where that line is (although I can never know for sure).
Right now I am crashed. Even standing a few minutes and my legs are shaky. I overdid it yesterday trying to haul a piece of heavy garbage out of the snow and carry it to the car. Today I can barely lift my arms. No, I did not strain a muscle, this is the M.E. effect of exercise or 'pushing'. It's like nothing I ever felt before M.E. but if I had to compare, perhaps if you exercised some muscles to the point of complete and utter muscle weakness and lactic acid burn (it's not this but it's the closest I can come). However, with M.E. this effect shows up (for me) one or two days later. I get the same if I try to shovel a little snow. Oh and then add flu-like symptoms, shakiness, dizzies.
I won't harp on about the crash though, I should have known better. I'm trying to prepare my house and yard (very slowly) for my new arrival in just over a week. Yes, I went and did it, I'm getting a puppy! Maybe the stupidest choice I've ever made, I'll let you know soon enough. I have had lots of offers of help, though, so hopefully with my village I can make it work.
If you have M.E., what has your illness course been like? Are you improved, the same, or worse? Do you fluctuate year to year?
