First of all, I have to report that my labs came back pretty much as I suspected, but unfortunately not as conclusive as I’d hoped. The neurologist had been looking for Lupus in particular and found some positive antibody tests and negative results to other labs indicative of Lupus. My liver is holding strong and my thyroid is not currently throwing one of its semi-annual hyper fits. I was just told to follow up with a rheumatologist. In all honesty, that’s not likely. I’ve been down the autoimmune road in my teens and early twenties and all I got out of it was treatment with drugs that have since been taken off the market or worse. If this is really autoimmune dementia, I trust it will go away on it’s own.
With the significant drop in mobility and sharp increase in pain, living in this house has held me captive. I’ve already mentioned the bathing issue, but then there’s laundry, meals that aren’t protein bars or something I don’t typically eat or like, more clutter, more screaming matches, inability to get groceries, and life feeling more like slow motion.
I need help. I need to make use of my manual wheelchair which means there needs to be someone willing to push me until I have housing that allows me to use my power chair and get around on my own. My doctors prescribed the wheelchairs and cervical spine collar and don’t like the idea of me climbing stairs, but how do I tell the people closest to me that without feeling like a burden or inconvenience rather than a friend/daughter/etc.? I don’t know any other ways to say “I cannot walk and I need assistance!” Meanwhile, my family has yet to accept I am not the same Dani I was just 5 years ago. I only feel judged.
There’s so much that hurts me, makes symptoms worse and I’m afraid no one will listen or take me seriously. I’m terrified to lay all this out to my loved ones and feel rejected again. I hate riding in a car. My hips subluxate getting in and out and I’m forced to wear a c-collar whenever I’m a moving vehicle which is really uncomfortable. I also get motion sickness on a regular basis. Using my rollator isn’t cutting it. I bump into everything and I’m so unsteady, it’s no longer sufficient. I have a manual chair, but when my doctor prescribed it, I thought I’d finally take some stress off my joints, instead I feel like a burden or a baby in a stroller since I can’t propel myself. Both of my shoulders are essentially detached from my body even after extensive surgery. I’m tired of having to plan everything I do through the day from laying out clothes the day before to making sure I don’t crash before I had a chance to eat or bathe to knowing where every curb cut is if I’m out and about. I need help with a schedule. Not having a plan for the day is only worsening my condition and lowering my mood.
If you had clicked on this post thinking I’d have some great tips on how to get what you need and explain those needs to loved ones, I do apologize. I really wish that was the case! I hope in the future there will be such a post in this blog. Right now, I need your ideas and advice that will hopefully help anyone dealing with this part of mobility impairment. Never did I consider I’d even be in need of a wheelchair (I am still coming to terms with it all myself), but to have to navigate both the physical environment as well as every person whom I now require assistance from.
I either isolate myself or push way to hard to seem “normal” and I can’t live like this. It’s existing, not living and it’s only getting worse. I refuse to go into assisted living when I still have the ability to live independently for years and years to come, but only if I have the ability to use my power wheelchair and be a normal 30-something! At this moment, I feel the a useless cripple who isn’t worth helping, but I know I’m so much more.