hjabril

@hjabril
Community Voices

What am I doing?

So I'm 22 and a non-traditional student. I've been hoping to apply to medical school in the next few years, as I finish up my public health & biology degree. But my fibromyalgia got really bad last fall and after a year of trying everything, I'm starting to accept that I may never get better-- at least, not enough to be able to do medical school or residency. Even my undergraduate degree will take at least 2 or 3 more years now, since I can't take more than 6 or 9 credits each semester. I don't know what the hell I'm doing? There is nothing else I want to do. And I don't know what kind of future I have now-- I can't live independently, take care of/cook for myself, or travel more than 30 miles without having a flare. Some weeks, I spend more than 18 hours sleeping everyday. I don't know what I'm doing.

17 people are talking about this
Community Voices

Trans/Enby folks here?

Hey Fibro friends, anyone else here trans/nonbinary identifying? I'm NB, afab and have been thinking abt low dose testosterone for a few years but worry it will interact w my meds and complicate my fibromyalgia even more.

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Community Voices
zoe

What has helped you ease any pain you get after a long day?

I got diagnosed with fibromyalgia last year when i was 16 and i’m currently at sixth form but i really struggle to get around all day as i don’t get much time to sit and rest. If anyone could help with some ideas of how to ease this pain that would be great! #fibromyalga

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Community Voices
aepf

Does it feel progressive for you?

I’m averaging one very rushed shower a week (actually pretty good I think), where I cry because my legs deflate and I start to go down. I sit on the tub soaking wet because I have nothing left to dry myself off. I haven’t been able to wash my hair in almost 4 weeks. So exhausted it’s just too much. Nausea and diarrhea 5-8 times a day for two weeks whether I eat or not. Tremors getting so bad I couldn’t feed myself last night. I don’t mean to complain, but this is terrifying. Not being able to leave the house either due to extreme physical exhaustion or simply not being able to walk. Horrible migraines like I’ve never experienced. And difficulty breathing due to chest, shoulders, neck and throat muscles seizing. Which of course makes my body panic, and triggers my CPTSD. Some of you are so positive. I wish I had such grace. They say this isn’t progressive, that has not been my experience. I feel iffy about posting this. You all are dealing with so much. I just wonder if your experience has felt progressive like mine? With a barrage of symptoms, familiar and a whack of new ones all at once? Thank you so much for the moment of your time you just gave me in reading this. I hope you are able to genuinely smile today.

13 people are talking about this
Community Voices
aepf

Does it feel progressive for you?

I’m averaging one very rushed shower a week (actually pretty good I think), where I cry because my legs deflate and I start to go down. I sit on the tub soaking wet because I have nothing left to dry myself off. I haven’t been able to wash my hair in almost 4 weeks. So exhausted it’s just too much. Nausea and diarrhea 5-8 times a day for two weeks whether I eat or not. Tremors getting so bad I couldn’t feed myself last night. I don’t mean to complain, but this is terrifying. Not being able to leave the house either due to extreme physical exhaustion or simply not being able to walk. Horrible migraines like I’ve never experienced. And difficulty breathing due to chest, shoulders, neck and throat muscles seizing. Which of course makes my body panic, and triggers my CPTSD. Some of you are so positive. I wish I had such grace. They say this isn’t progressive, that has not been my experience. I feel iffy about posting this. You all are dealing with so much. I just wonder if your experience has felt progressive like mine? With a barrage of symptoms, familiar and a whack of new ones all at once? Thank you so much for the moment of your time you just gave me in reading this. I hope you are able to genuinely smile today.

13 people are talking about this
Community Voices

Is there any kind of relief?

<p>Is there any kind of relief?</p>
9 people are talking about this
Community Voices

Is there any kind of relief?

<p>Is there any kind of relief?</p>
9 people are talking about this
Community Voices
Community Voices

Some days I cam get through and it feels like I almost understand/can live w my chronic illness. Then a low day hits and I'm overly exhausted, in intense pain for the 4th time in 1 week and I feel like this is going to be my life forever. 12 different medications that only work a little but have tons of side effects. Sleeping 12 hours every night else. Still so fatigued and foggy when I wake that I can barely function. Low days. Hard days to stay hopeful so I try to stay asleep &/or dostracted instead.

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Feeling Lost With Autoimmune Disease and Chronic Illness

This year sucked. Or has it been the past several years? I wish I could dignify that with an answer, but I can’t. That’s not the way chronic illness works. It’s not a steady stream of “bad luck” or “good luck.” It’s a day-by-day, minute-by-minute fight. I might wake up, drink my coffee, and do some chores. By evening, I might be in the hospital wondering if I’ll ever catch a break. Chronic illness is different for everyone. Some manage it, and some don’t. One thing is for sure, though: life doesn’t stop because you’re not feeling well. When I heard my diagnosis — “autoimmune disease,” I wasn’t upset. Finally, I had some answers. We’d treat it, and my life could go back to normal. I was naïve, but I thought I was being reasonable. In my mind, I’d found what I’d been seeking: I had a name for my disease. The journey was complete; the finish line was in sight. My feet were firmly on the ground, and my plans for the future were within my grasp. I wish I could remember that woman — the woman who believed she’d figured it all out. She was wrong. I miss the me I used to be. The new me is different. I am a woman lost at sea. I’m not talking about calm waters, either — I’m talking about a raging sea. Every day, I wake up and…blink. The waves roar, drowning out all other sounds. I struggle to find my footing as the current pushes and pulls me. Get up, I think. You can fight this. So I try to fight. I open my eyes and…blink. I search for the shoreline. To me, the shore means hope. Purpose in sight, I put one foot forward, then the next. With every step, I wade through turbulent waters. Over my shoulder, I carry a heavy net. In it are the things that are most important to me: my children, my family, my friends, and my hopes and dreams. My goal is to get to the shore without having to remove anything from the net, but it’s so heavy. Instead of rope, the net is forged from steel, fastened by a disease I neither want nor understand. It feels too heavy for me to carry. Some days, the waves are calm, and I can push through the current. Other days, my body gives out beneath me. Some days seem hopeless. Other days, I believe I can make it beyond the shore. Most days, I make it to the edge of the shore and collapse on the sand. I do what I can to protect the precious things in my net, but it’s never enough. I lie on the sand at the edge of the sea and think, “If only I could just do more.” Perhaps a healthy diet, perhaps yoga, perhaps advocating for myself at the doctor’s office. There is no cure, but I can do little things to make my life easier, right? I’m tired, though. So tired. My eyes slip closed, and the tide comes in, dragging me back out to sea. Sometimes it takes weeks for me to see the shore again. Those days are bad, but they are not the worst. Other times, I get to the shore and feel the sun. I walk along the beach for days. When I can, I take out the things in my net and bask in them, treating each like a rare gem. For a small amount of time, I feel “normal.” Hopeful. Not adrift. I remember what I’ve been missing. I remember me. But it never lasts. One day, I’m me and the next…I blink. Once again, I’m a woman lost at sea. The pain of what I’m missing is fresh in my mind. That is what chronic illness feels like to me. It’s different for everyone, but I wanted to give my experience a voice. Who knows? Maybe it might help someone. I have little to give, but sometimes, when I can rifle through my net of hopes and dreams, I find words to share. On the good days, I can leave them on the shore — as little shells for others to find. Maybe someone will pick them up, place them against their ear, and hear the stories of those who are lost at sea.