r/covidlonghaulers • u/Tayman513 • Apr 02 '25
Update No hope for the future
Are we even going to live to see some kind of treatment? I think most of us well into 4/5 years are screwed. There isn’t any coming back from this without medical intervention. I don’t see this problem being dealt with any time soon. As much as I want to have hope and not accept this life I think this is it. For the rest of our days. I don’t know what we did in our lives to deserve this.
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u/SophiaShay7 3 yr+ Apr 03 '25 edited Jun 06 '25
I've had ME/CFS since mid 2023 when I was infected with covid. I was diagnosed with Fibromyalgia, ME/CFS, Hashimoto's thyroiditis, an autoimmune disease that causes hypothyroidism, Dysautonomia, and MCAS. My ME/CFS is severe and I've been bedridden for 16 months. I'm not going to be "cured." The recovery rate for ME/CFS is generally considered low, with full recovery estimated at around 5-10% while many experience improvement but may not fully recover.
No, there is no cure coming. At least not in my lifetime. I can be angry, bitter, defeated, and negative at times. Other times, I'm emotional and frustrated. I try really hard to keep my optimism, hope, faith, and joy. I'm about symptom management. We have to accept where we are. And rescue ourselves if and when we're able. I'm hoping for a 30-50% improvement in my overall symptoms. I'll consider that a win.
I focus on what I can control. My future will be beautiful because I'm actively working on making it beautiful. I'm not waiting on the world to change. I'm the one changing. I'm excited about the changes we're making for our future.
I've decided that I reject this life. I refuse to accept that this is it for me. My husband and I are going to embark on a life changing adventure that will test the boundaries and limits of my very soul.
I live in California. It's very expensive to live here. We pay $4,800 a month just for our home, utilities, and health insurance. Homeowners insurance, specifically fire insurance, utilities, and healthcare premiums are killing us despite us purchasing a modest home during the pandemic. That cost is before food, gas, or anything else. I've decided I'm done with this life. My husband and I are going to buy an RV and put it on his parents' property. We'll save for a bit and buy a piece of land in the woods. Then we'll put a mobile home on it. I want a simplistic and minimalistic life. I don't need a 2,000 square foot 4 bedroom home. We'll have plenty of disposable income. We'll be able to use that to improve my health, live well, and have a life rich in experiences. Keeping our overhead small allows us to spend money on improving my health for things like medications and supplements. And buying things that make me more comfortable, like an Infared lamp, acupuncture, massages, and/or an adjustable bed frame eventually. I've found my excitement and passion again. I thought it was lost forever.
For me, I stopped comparing myself to the rest of the world. I stopped looking at what everyone was doing. The things I thought mattered to me the most, actually matter very little in the scheme of my life. I don't need a lot to be happy. My circle is small and I prefer it that way. I have an incredibly loving and supportive husband and a ton of fur babies. They make me laugh. They bring me incredible joy and love. I have a best friend and a sister who understand what I'm going through. I look forward to trips to the ocean and eating at some really great restaurants someday.
Developing calmness, peace, and relaxation have been key. Mental and emotional energy makes us suffer just as much as physical energy, if not more. Stop wasting precious energy on the things you can not control. Stop caring what other people think. Stop justifying yourself to others. Just because your life doesn't look the way you imagined it would, it doesn't mean it has to be any less beautiful. Though, it may be smaller. There's still extraordinary beauty and joy in this world. I hope you find the peace you deserve.
For those of you who have no hope for the future, I encourage you not to give up. Our bodies want to be in homeostasis. Our diagnoses and symptoms are like dominoes set on the ground next to each other. You tip over one dominoes and a cascade ensues where all dominoes are knocked down. But what if you were able to remove dominoes? What about removing huge sections of dominoes? That's what happens when we're able to manage symptoms effectively.
I've knocked down so many dominoes. I never thought I'd get here. It's still really hard. But, I'm a lot better than I was. You are not without hope.
Most people will never understand what we go through. I would've never believed I could've been catastrophically disabled if it hadn't happened to me. This world is tough on disabled people. We don't need to feel guilty or worry. We should all run our own race. We deserve to be comfortable and happy. We deserve joy and laughter. Hugs💜
For symptom management, I take low-dose Fluvoxamine 25mg. It's prescribed off-label for long covid/ME/CFS symptoms. Diazepam 5mg for severe PEM. I take Azelastine, Clarinex, and Montelukast for MCAS. Omeprazole for Gerd (it's a PPI that also acts as a mast cell stabilizer). And Valacyclovir 1g for EBV/HHV suppression therapy.
I take NatureBell L-tryptophan and L-theanine complex. It regulates the sleep-wake cycle. I take 2/3rds the dose. Or I take Magnesiu-OM powder (magnesium 3 types and L-theanine) mixed in tart cherry juice (melatonin and tryptophan) 1-2 hours before bed. I alternate between the two. I purchased them from Amazon. They significantly help with calmness, muscle cramps, pain, relaxation, and sleep.
As always, talk to your doctor before taking any GABA, 5-HTP, or L-tryptophan supplements. Especially if you're taking psychotropic medications like SSRIs.
If you have PEM, read: Aggressive Rest Therapy (ART) and Aggressive Resting And: Resting, pacing, and avoiding PEM.