A Journal Entry
It’s hard to start physical therapy again when I’m no longer motivated to do it, my body faces pain each day, along with fluctuating symptoms every day that are hard to manage. Aside from the other comorbidities I face, I require strength and mobility training, which PT can help with, and also rehabilitation therapy like aquatic therapy, so I don’t overextend my joints and ligaments, which can cause more pain and potential injuries. PT before was hard sometimes and uncomfortable, but thankfully, the staff was patient and compassionate. I stopped going due to insurance issues and wanted a break around the holidays, but now I’m paying for it. I feel like it’s my fault, and I’m not allowed to rest. Even the exhaustion I feel, no amount of sleep will restore it. I’m not interested in doing anything, and I’d rather just scroll. This is causing my body more pain, and when I try to move it, I still feel pain. I feel like there’s no gain.
Even in other areas that I try in lifestyle changes like nutrition and mood management, symptoms still occur because there is no cure, just management. It’s not like you take vitamins you’re deficient in over time, have a bad cold and get over it, or face an injury where you go to PT and get better and don’t have to go again. This is constant, and therapies in my case are long-term practices because of my conditions; I’m at risk for being completely immobile. During the time I went to physical therapy for a couple of months, my improvement has been about 70%(Thank God !), but now I feel like whatever trauma my body has faced, it’s stuck. During the tumultuous year, I felt awful but now I feel I look awful because my body is taking on the physical appearance of a chronically ill disabled person who was once bed bound (thank God instead now with diagnosises, I can now put names to what I’ve been experiencing as long as I remember, try my best to cope with flares/bad days receive treatments I need and find community in others justlike me). I see the muscle loss, my facial lines where I scrunch when I’m in agony, my limb difference, my weight loss. Everything is a reminder that I’m sick. Physical therapy is one of them. It’s hard to start something up when I am not interested as I once was, but I understand we have to do stuff that’s beneficial for our health, even if we don’t want to. It’s my choice to go back to PT, but if I don’t go, I’ll be in pain. If I do go well, I’ll still have pain, but more so discomfort and fatigue from the exercises if I remain consistent. Consistency is no easy feat for anyone, but at times, this can feel impossible when my body and brain work against me. I wish I didn’t plateau and risk a decline in my health if I’m unable to be consistent. Seeing the mental and physical regression in the skills that brought me where I am. I wish I didn’t have to upkeep this sick lifestyle I didn’t ask for, I wish my body didn’t require lots of specialty care. I wish God would give me a new body and a new brain. I always hoped for even at the cost of being a different person.
I’m grateful these services are available to me; appointments are hard, the staff and medical industry are flawed, but I’m still grateful. I’m sure other chronically ill people know the run-around, the cancellation, the rescheduling, being placed on hold, the insurance, the doctors not believing your symptoms, etc. It’s a lot, and it’s something we can’t escape from. Even the things we face from people around us who gawk and marvel at the fact that someone younger than then is disabled or say “have you tried” ( insert ignorant unsolicited advice), “(well maybe if you do this more” (insert ignorant ableist comments), “you have to pray more, don’t accept your circumstances”, or “disability isn’t your identity your different abled”. I’m not making it my identity, but unfortunately, it’s a big part of my life and mostly what I was born with. Just because I accept reality and use terms like disabled or chronically ill ( which aren’t inherently bad words) doesn’t mean I don’t have faith or doesn’t mean I’m happy this way, but I accept my circumstances, and I’m not in denial, which will do more harm than good. I know I still have more to go; God’s not done with me, and He has constantly healed me. I just wanna have normal 21-year-old girl life, carefree and not have to overpack health necessities, worry if the person or place is accommodating to my cognitive and now physical disability, long for my favorite foods I can no longer have because of the harm they cause me, and be extremely cautious of anything that isn’t my routine because my body will suffer for it. I just feel stuck working towards a goal that doesn’t feel like it exists because this is my reality, and I want out…