On this day four years ago, Facebook reminds me, we were shopping for a recliner. I’d been sick one month. I’d seen my endocrinologist, assuming that the low-grade fevers, violent chills and drenching, shaking, sleep-murdering night sweats were something to do with my post-ablative hypothyroidism. I didn’t go to my GP for another few weeks, only after every Google search of my symptoms came up with malaria and I started to wonder, what if?
I’ll never forget the feeling I had that day. It was a Saturday and I’d gotten up early and gone to a “Pure Barre” exercise class — my knee-jerk response to not feeling well was to exercise more (ignorant and hopeful during that first year, I booked three yoga and exercises courses and was never able to go once). I remember leaving that class and calling my husband in tears. My body responded in such a violent way, I could barely walk. I sat in my car for half an hour before I could push in the clutch.
I was in a daze when we were looking for a recliner later on the same day, shuffling around the stores, feeling weak and fearful of whatever the hell was happening to me. I remember acting like a caustic recluse when the salespeople wanted to engage me in their spiels, giving my husband that look that said “get this person away from me.” I joked about my outfit in this photo, but in reality I couldn’t shower or change before we went shopping — it was too much energy — and that was such an alien thing for me that I had an overwhelming feeling of doom. In truth, as much as I hoped it was my thyroid, I knew as soon as this illness started that it was something bigger.
Today I feel worse than I did that day. There was no pain then, no sore throat, no daily headaches, no brain problems, no muscle wasting. I still had a job and friends, I still drove, and ran around in the dog park and laughed every day. Sometimes I can’t believe it. Every day for over four years? Isn’t it meant to plateau? Am I not meant to acclimate and get used to this? Find a quality life somehow? I don’t hope to feel good again… not even average… I just hope to eventually get to a place where the good outweighs the bad and makes me feel like it’s worth continuing this fight.
P.S. To all my friends who have been doing this longer than I have, you inspire me to continue the fight. ❤
Rag and Bone Shop of the Heart 
You inspire me. xx
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Marie, you inspire ME!!! xo
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Thinking of you, Elisabeth xoxo
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Oops. I spelled your name wrong! Thinking of you, EliZabeth. 🙂 Sending hugs and hope and love.
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I appreciate so your longtime support and friendship so much, Laurel. x
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It indeed does get easier, and the good will outweight the bad. I will tell you mine started to get bad when I was 9. Memory tells me that those tiny nymph ticks in my groin were the straw. Before that, i already had HIT and what I now know is EDS. Its been a challenging life indeed- add to that my mother never smiled nor hugged me, and my father had bipolar and probably asperges. He was also alchoholic.
Because of these last mentioned circumstances, I endured my odd sicknesses and buckling joints in isolation. No one noticed or cared. Yet, ive made it through (blessed to have Faith in God and Yeheshua since being a toddler). Im now 52 and have had a strange yet active and blessed life, with periods of near total incapacitated rest. Ive sleep so many more hours than the tiredest infant! YEARS spent sleeping.
Yet- still blessed by far more than millions!
You too Dear EM. You hang in there and be brave and I will continue to pray for you 💋💐
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Oh, Liz. Four years. My little one was two. She doesn’t remember me from before I got sick. My son, who is 11, does. He and I talk about it every once in a while, and the tears flow. I keep getting sicker, too. I am able to do less and less. I’m still ‘starving’ (about 250 calories a day), so if I over-do it, I actually destroy more muscle- it can’t rebuild even the tiniest amount. I tried to write a post on identity the other day, and I just couldn’t. There is so much loss and grief that it threatens to overwhelm. But tomorrow is another day. Thank-you for sharing.
Karen
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It takes a lonnnnng time to find a place of acceptance and the timescale is different for all of us. Four years is still a relatively short time to come to terms with such a devastating situation and the overwhelming impact this has all had on your life, so don’t be hard on yourself that much of the time you’re struggling.
There is always hope that things will improve, always. My friend Amy started with severe ME at 15. She was bedridden until she was 30, then she tried low dose Naltrexone and it helped! She’s now living in her own flat, albeit with Carers. Still doesn’t go out but can knit, be online, have visitors, talk, write……..none of which she could do for over a decade.
As you know, I stabilized with no real treatment, just extremely strict pacing for a very long time, plus dietary and lifestyle changes. The route to improvement is again different for all of us but it *is* possible.
You’re allowed to feel down and fed up, you’d be unhuman not to, but I know there are brighter times ahead for you my friend. Jak x
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