Read Between The Lyme
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Still Chronically Ill
I’ve been less focused on writing lately. I can’t quite put my finger on it. Reflecting, I think it is because, well compared to say 2 years ago, I think my health is a bit improved. Honestly, it’s hard to say and hard to measure. But in my mind, and my husband agrees, I am doing better overall. And so, I find that this makes it more difficult to write than when I was much sicker. Weird, right?
I think this is due to my wondering: what can I write about as a semi-sick, semi-healed person that people would actually be interested in reading? If you have any ideas, please let me know!
While so many of my symptoms have all but disappeared, I am still trying to work on insomnia, joint and muscle pain, memory and concentration issues, and fatigue. Sometimes, these wax and wane, although the insomnia issue and the fatigue are cornerstones of this Lyme journey that continue to remind me that I am chronically ill. Oy.
One other issue I am struggling with is actually accepting the fact that I am chronically ill. It was much easier to embrace it and own it when I really felt so very terrible every single day. For years on end. Now that I have some relief, and there are times I can participate in life in ways that haven’t been options for me – again for years – it is much harder to keep in mind that I am in fact, still chronically ill.
My mind likes to play tricks on me, or maybe it is more my body that plays the tricks. An example would be this: I used to have terrible migraines. I had never dealt with anything like this before Lyme disease. The migraines started about 18 months into treatment. And they continued for about 12 months. A good one to 2 a month. Learning to deal with those was only one part of a puzzle I still do not think I have all of the pieces to. And then, they stopped. I haven’t had a migraine for quite awhile. So, one more symptom I don’t have to deal with and I think, hey, I’m ok. I think, I’m so much better off than so many others. I’m making progress. I can’t really say I am chronically ill because, well, I had migraines and now I don’t.
How can I be both better than my worst 3 years ago, or 6 years ago, and yet, still be chronically ill? This is something I am truly trying to figure out for myself. I don’t have an answer. I savor the minutes and sometimes hours I feel better, and I survive through the ones when I don’t.
I hope all of you are doing well and that Thanksgiving was good to you and to yours. Take care. – B
Thanks for Spreading the LOVE!!!
7 Comments on “Still Chronically Ill”
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Read Between The Lyme 
Hey so glad to hear that you are improving. It must be strange to start to feel better after feeling so I’ll for so long.
Just keep writing about what you know 💜
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Hi there! Thank you for the encouragement. Hope you are doing well. Best to you!
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Thank you plodding along 💜
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Well said. I haven’t felt the need to write blogs for a while as well, that in-between stage is odd and both cruel and a blessing, it reminds you what once you were, gives you hope and frustrates at the same time for the slow progress and the hunting question lingering always in the back of the mind “will I ever get 100% better?” In the limbo of middle land, you’re neither a citizen of the healthy species or one of the obviously ill, you’re just a good looking fantom that lingers about, and in the good days goes and loves life instead of writing about pain. Well…at least that’s how I feel, but I identify with you in this stage:) Lots of love:)
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Hi Carmen, happy new year! I really appreciated your comment. All of it applies to me right now. I’m constantly wavering between Am I as good as I’m going to be? Or should I continue to strive, continually seek the elusive “treatment” that might, but most likely not, make me 100% again? Acceptance or Seek? I realize that it really isn’t one or the other necessarily. But I’ve reached a point that the “treatment” options are not mainstream, they cost exorbitant amounts, and rarely actually work. So I’m leaning towards acceptance which for whatever reason is so difficult. I hope you are having better days than not. Best wishes to you.
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So glad you are feeling better! With MS, I’m much like you, chronically ill but holding my own with no relapses for quite some time. I too deal with insomnia and fatigue but I push through most days and rest on my worst days. I guess we just take one day at a time and remember to be grateful for them all, good or bad. Hugs!
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Hi Ena, I’m sorry I missed your comment in January. Thank you for comments. You are right. We can only take it one day at a time. Sometimes, I forget this. Hope you had a good February. Happy March!
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