Hi guys. This is a personal update to explain what’s been going on with me. Please read it. I could use any support I can get as I fight this challenging condition. This is long so bear with me please
I’m currently in my fourth hospital stay this year to treat a rare neurological condition called Stiff Person Syndrome. I have it in my full body and have had it for months in this severe episode(some people only have it in one body part, I have it all over my body from head to toe) and I have a migraine that’s lasted since February. Stiff Person Syndrome involves paralyzing and excruciating muscle spasms (think a charlie horse but all over my body) that leave me painfully contorted and stuck because my muscles spasm harder than the rest of my body can bend. Antagonist and agonist muscles usually spasm against each other, leaving me literally unmovable and in 10/10 pain. For Stiff Person Syndrome, spasms have been known to have enough force to break bones. Luckily I think thus far I’ve only done damage to my feet, but the spasms vary hour by hour and they are excruciatingly painful and occur 24/7, even during my sleep. I don’t sleep more than 4ish hours a night even with all the medications I’m on, as the spasms wake me up because they are so painful.
I had to put my entire life on hold. Formerly a straight A’s college student, I’ve had to withdraw from college and leave my home and am basically living at one of the only hospitals that even knows how to treat this now, hundreds of miles away from my house and my family. They don’t know when I’ll be stable enough to leave. Because of the nature of this disease, any touch to me, touch to the bed that I’m lying on, or movement of my body causes excruciating pain and uncontrollable spasms that can last anywhere from hours to days to weeks. I’ve been unable to walk or stand since March. On good days I can move some limbs while lying in bed. I can’t travel because every bump in the road sends me into full-body extreme spasms. Many times I am fully paralyzed, unable to move my legs or arms because the spasms are tighter than anyone can resist. Every movement can trigger a spasm, hence why I haven’t been scrolling around and being active. Right now I can move my left hand and right thumb to type this (no control of the right arm or other fingers on my right hand atm) but usually can’t move either of my arms, hands, or legs as they twist and contort beyond what a body should bend. It’s excruciatingly painful. I’ve been not responding well to the first line of treatment, and the second hasn’t had any progress. I’ve been bedbound for a long time and don’t know if/when I’ll be able to stand or walk again.
I’ve been staring at these hospital wall for 31 days. I haven’t seen outside in months because the light is so bright and I have to wear a blindfold in light environments (and we even have had to black out the windows because the light was too bright for my head). It’s been debilitating, lonely, and heartbreaking for me and my whole family. It’s been scary and lonely, but I am lucky enough to have both parents here for support. Any messages of support from anyone here would mean the world to me because I feel so alone in this. I don’t know how long I will be at this hospital, but it’s looking like at least a few weeks, possibly months.
Every day is a struggle battling my body and its spasms. I’ve had to cut my hair (it’s like a pixie cut now) because my condition made me have to cut it without a choice (I know it’s not a big deal to most people but I was very much emotionally attached to my hair and I’ve always had hair down to my lower back and it feels like a huge loss to me and still brings tears to my eyes when I think about it. It was the last part of my appearance I hadn’t lost control over and it was and still is very emotional for me).
Unfortunately, I haven’t been able to bring my service dog Taylor with me to the hospital because he’s too big and shakes me and the bed and sends me into spasms. I’ve never been away from him for this long and it’s been rough for him and I being away from him. He’s back home in New York and I’m hundreds of miles away. I miss him terribly. He used to be by my side every moment of every day wherever I went, so not having him here feels so lonely.
I’m lonely and scared and I have a long road ahead and could use any encouragement or support you can message me or anything.
The announcement of Lover was a huge thing for me, it gives me an attainable and reliable goal for something to look forward to, which I haven’t had in awhile. It is a godsend in this really challenging time to have some good news for once and a goal to keep me motivated and going through all the pain, tests, uncertainties, and fear. Every hard thing I go through now I can think to myself that I have the 23rd of August to look forward to and it has been pushing me along through all the difficult spasms and moments I’ve had since the announcement. I’m extremely thankful for this album and the songs released so far have meant everything to me. They get me through moments that I don’t know how else I could cope. Knowing this album is coming out gives me the strength to power through all the spasms and tests and shit they have to do, where beforehand I felt close to giving up.
Clean of course will always my anthem, but it seems to have taken a new meaning for me lately. I am in the rainstorm rn but I hope one day to be clean from this illness and back to my normal life. I’m thankful for the comfort and hope that song has always given me. But I am so excited to hear Lover, it’s really keeping me fighting.
But back to messages of support, I really need them and would be extremely grateful for any support or hope or anything at all. I’m really lonely and going through a lot with Stiff Person Syndrome, a one in a million with a variant that puts me at one in 5 million, and it’s a lonely battle. If you’ve read this far, thank you. I really need some support, and would love any message or ask or something, even though I can’t use this app for long and my hands are locking up again, I always can read or have someone show me messages and stuff like that. It would atm mean the world to hear from you guys during this whole thing. I miss you all terribly, and messages seem like a good way to communicate that
Thank you if you’ve read this far. I’m thankful to have your support as I battle this disease. I love you guys and I’m lucky to have you ❤️
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