Guest post: CFS and constantly sick and thinking it’ll never end

Peter Alexcee has given me permission to post something he wrote on a private Facebook group. He was my first guest blogger – and has more good stuff I’d like to quote.
It has been a bad week for me: I tried something new, hoping for improvement – and lost a whole week. I will post about that later – it needs some work.
Peter calls his FB post a rant – I call it telling it like it is:

Sometimes this gets so tiring, the effort to hold it all together; being constantly sick and thinking it’ll never end, knowing it’ll never end, accepting it’ll never end. I often look outside at the world and marvel at all the people going about their own business, living their lives, and thinking that used to be me, often taking many things for granted. Now that world seems so far away from me, so very long ago, like I’m just sitting in a movie theatre watching a movie of life going on around me; the movie neither inspires me nor frightens me, it just is.

Even looking for inspiration takes effort, effort I’m sorely lacking, and I have to be so very careful on what effort I do. I admire those who are doing “stuff” with their lives, moving on, living life, even if it’s complaining and being self-centered; they are doing, I am not. I cannot begin to convey just how this sickness weighs on me, and I know I don’t wish it on anyone, even the worst of souls.

My faith is strong, my soul is strong, my mind is now weak, my body weaker. My true desires of reading and learning are slowly being eroded; my IQ was high, my creativity was higher, my quick-wittedness was fast; now I find myself lost, difficultly focusing on anything for very long, even my eyes are weak and often see double, yet another joy of this sickness. But I’m sure all those who are dealing with the same thing understand all too well, and those who aren’t find it very hard to imagine and often suggest things I “should” do that may help.

I am not a victim of sickness, I know this sickness well, and have spent the last 13 years studying and researching it; Chronic Fatigue Syndrome and Chronic Lyme Disease. All I can say somebody flipped and switch and my life changed overnight. I don’t take anything for granted now, I appreciate a sunny day, a bird chirping, laughter of children, rain, wind. I look forward to sleep where I can dream, where I am not who I am now, I can be and do anything, and I remember most of my dreams; I look forward to dreaming.

My rant for the day
Bless you all

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6 thoughts on “Guest post: CFS and constantly sick and thinking it’ll never end

  1. juliabarrett

    It’s hard to hit the like button because I don’t like what this disease does. I hope this next week is much better.

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      1. Alicia Butcher Ehrhardt Post author

        Was it something I did to make it difficult? I have zero control of WordPress, but they seem to have it under control most of the time. If they don’t, I go take a nap – by the time I get back they’ve fixed it.

        (PS I’d rather have a drink – but the system doesn’t take that too well. Need to go back to the beach in Mexico – those were real Margaritas, and yet they slid down soooo smoothly. Vacation? Good fairies?)

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        Reply
    1. Alicia Butcher Ehrhardt Post author

      I agree – ‘Like’ isn’t quite it. Peter is having a hard time – and all of us do, at random intervals, as well as when we do something we know will cause a problem – but have to/want to do it anyway. {shrugs} We can’t completely stop living, though it seems that way.

      Did you ever read ‘The women men don’t see’ (not sure I have the title just right), Tiptree? (again – memory may be wrong). The disabled are everywhere – but we stay home a lot more and make smaller waves.

      Writing advice varies all over the map, but I often laugh at people who seem to need to go have adventures to be able to write. I’m the exact opposite – for now. There is always hope, and we finally seem to be getting a bit more attention from the researchers, but it will definitely be way too little way too late for some of us – the co-morbid stuff creeps in when you don’t move enough.

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