For a couple weeks, I’ve been in a malaise and I couldn’t pinpoint the source of it. Of course, the occasional bad day will happen, but this was prolonged. Reading various columns and SMA News Today Forum comments has reminded me just how brutal winter is for people with SMA. I learned that seasonal affective disorder (SAD) is common. This was a new term to me that offered a possible explanation for my recent unease.
However, after researching the symptoms, I’m certain that I don’t have it. While the cold weather affects me like it does everyone with SMA, I simply don’t have most of SAD’s symptoms. So, what’s my problem? I believe I’m experiencing anxiety related to change and uncertainty with my care. No one likes change except a wet baby.
After spending most of my life being cared for by the same people, in the same manner, the process has suddenly become unstable. It started when my grandmother — a primary caregiver — started having physical difficulties when taking care of me. Lifting a 22-year-old man when you’re a grandma with osteoporosis probably isn’t the best idea, but that’s what we have to work with right now.
My other main caregivers — Mom, Dad, and a friend, Sam — have also dealt with some back pain. I’ve suggested getting a spinal fusion like me, but they’re just sticking with ibuprofen for now. Anyway, Sam may not be assisting with my care much longer, either. His help was always supposed to be temporary, but the uncertainty contributes to my anxiety.
I can see a couple of obvious solutions here. One is to hire new caregivers, and another is to acquire a lift. New caregivers would help me achieve more independence and take some of the physical load off my family. A lift might extend how long Sam and Grandma can take care of me. Also, caregivers hired through agencies are required to use a lift.
Not only are these two things life-altering changes, but they’re also difficult to acquire. I’ve made little to no progress in getting the particular ceiling lift I’m after, because they won’t sell me one unless there’s a licensed contractor to install it, and there aren’t any in the state. I’m currently looking into other options.
As far as hiring new caregivers, I’ve only had one brief experience. A couple months ago, I trained a guy named Matt. I didn’t know him personally, but we have family connections through church, so he wasn’t a total stranger. He attends college in another state, but he was back in town for Christmas break and looking for work. Needless to say, this was very much temporary, but I thought it was a good opportunity to break the ice. It went well, but unfortunately, we only had two sessions, as Matt came down with a cold.
I’ve yet to pursue more caregivers since then. So, while certain factors serve to compound my malaise, I don’t have SAD. Instead, at the root of all this is an issue I’m having with trust. In my case, it means trusting that God has the right plans for me since I can’t control my circumstances. I hope things will stabilize soon and my life will become more structured again. Until then, I’ll learn whatever lessons I can from the opportunities at hand.
Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.