Let me explain my current situation. I give you “A day in my life.”
I wake up and stretch a bit. The moment I stand up beside my bed, I get a general idea of how my day is going to go. I pay attention to tight spots, soreness, and gauge how weak my legs are. Too much tightness and soreness means my exercise routine will likely be limited to stretching to work out as much of it as possible without straining the muscles even more. Gauging the weakness lets me know how much trouble I’ll have getting around the house during the day. Some days I feel like the muscles are going to rip apart. On those days, my steps are much smaller and more painful. On those days, even light stretching is not possible. I know within 30 seconds how my day will be. Some days I fall right back onto the bed. Those are the worst days. Those are the days where I take a deep breath and mutter, “So, it’s going to be one of those days, huh?”
Grabbing my cane, I start to make my way to the living room. Some days I make it with little fuss. Some days I have to grab the doorknobs as I walk down the hall. Some days I feel my knees start to buckle and I struggle to lock them so I don’t fall. By the time I make it to my chair, I’m some level of tired. How tired I am is another indication of how my day will be. I plop down and spend a few minutes playing games where you click the screen over and over (coloring or click-it games). Why do I do this? For some reason, this act calms my hand tremors. It’s as if it focuses muscle movements. I don’t know why it helps, really. I just know it calms my tremors. Mornings are often the worst time of the day for my hand tremors.
After I get myself together, I grab my laptop to start my exercise music. I have various songs that are the right tempo for making me stick with my exercises for the right amount of time and at the right pace. The music also distracts me from the pain so I can get through it. It always starts with one full song of nothing but stretching. Stretching is an important first step. Can’t skip it. I can gauge how well I’m doing by comparing my pain level and tiredness to the amount of time the song has been playing. I use the same songs. I know how I generally feel at what time stamp in each song. I use this to track whether I am making progress or slipping. (I’m stuck in the same spot and have been for a while now.) I try to increase it a bit on the days when I can, but I am always met with too much pain, soreness, and tightness the next day to do a full round of exercises. I keep trying, but I have not been able to increase the amount of exercise yet. I’m not moving forward, but I don’t feel like I’m going backward. I keep plugging away, hoping it will get better but fighting to keep it from getting worse. I just keep going. It’s all I can do. My exercise routine is strenuous enough (for me with my weakness) that it leaves me in pain. If I finish my routine, my legs burn, then feel extremely heavy, and then feel completely dead. They just don’t want to move for a bit. That’s how I know I’ve done the full routine — they don’t work for a while. That usually fades after about 20 minutes. The heaviness sticks around for a bit longer.
I’ll rest for a while after I do the first round. Yep. First round. I usually go back to clicking games to ease any tremors and keep playing music to distract myself from the nagging pain after exercising. Most days, anything that requires a lot of focus is out of the question. My mind skips around. It’s like a gear missing a few teeth. Sometimes it spins around until it catches and starts working right again. Words? I have days where I confuse words. I have days where my mind doesn’t read what I’m typing correctly. I have days where I stammer a bit trying to get out what I want to say. This isn’t every day. It is a good day, bad day kinda thing. If I’m tired, in a decent amount of pain, or extremely frustrated, it’s worse. Tremors are worse as well.
Spasms and tics? I’m going through a period where they’ve eased up a bit. I do have a nagging one right now. I’m on day four of an annoying spasm in my face. It seems to be on its way out, thankfully. It’s not as often that a spasm is strong enough to noticeably move a limb. That’s a good thing. It’s still an annoyance, but it is an improvement. It’s a slight jerk that certainly grabs my attention, and it can be anywhere. I had one all night inside my elbow not long ago. It’s a rippling and tightening sensation. It’s not overly painful, but it’s tiring. It’s weird. It’s enough to make you extremely self-conscious. Tremors, spasms, and tics are sometimes bad enough to give me a hassle when I’m using my cane. I have balance issues and weakness, and when something is jerking or shaking it adds to the problem. I also have a pinched nerve in my neck that affects the shoulder on my left arm. Guess which arm I need for my cane? Yep. I stopped taking gabapentin to treat the nerve pain in my arm a few months ago because there was concern that it added to my weakness. I can’t say it did. I can’t say it didn’t. I can only say one thing is certain — I was able to build up a bit more strength after I stopped taking it. I take nothing to treat the nerve pain, so if I walk a decent bit or I’m weak, tired, or in pain and have to put more pressure on that side while walking it causes more pain in that arm and shoulder. Add tremors, spasms, or tics to the nerve pain and you’ll see me wobble when I walk. Even with the big foot on the bottom of my cane, it will wobble as I walk.
Yes, I have a big foot on my cane. A regular tip like the one in the photo doesn’t work for me. With the amount of support I need, further complicated by all the other issues, I cannot steady myself with a regular tip. The bigger tip provides more stability when I walk. I won’t use a quad cane because the base is too wide. A few years ago, I broke my foot tripping over the bottom of straight leg pajama pants. (I’m talented like that.) I’d likely break my neck trying to walk with a quad cane. I’d certainly trip over it. Walker? Ummm, no. No, thank you. My cane gets more attention than I care for. I’d rather not attract even more attention.
What’s it like leaving the house? I rarely leave the house. I am extremely self-conscious, it’s too much trouble, and it’s exhausting. I do not exercise on a day when I leave the house. I need all my strength and energy for walking. I need help down the porch steps. Sometimes I need help getting in the vehicle. Sometimes I need help getting out of the vehicle. I can only walk short distances without taking a break. I can’t stand for long periods of time. If I become uncomfortable in a crowd, my pain level increases, or I’m tired, the spasms, tics, and tremors pick up. There was a light breeze at my daughter’s graduation. I struggled to brush the hair out of my face thanks to hand tremors. I ended up with a finger up my nose at one point. Fun times. If it’s an outdoor activity, I bring a lawn chair. I have to have a place to sit. Ramps are generally safer than stairs, but they are more tiring. It takes a lot of energy to maintain stability on a slope. If I fall, I’m not going to tumble down a flight of stairs, so it’s worth the extra energy to take a ramp if it’s more than a couple of stairs. I’m also taking a mega dose of vitamin D to correct a deficiency, so I fear a fall could result in a break. No, thanks. A lot of times, I need to hold someone’s arm with my free hand so I have the support of the cane and another person. When I start getting tired or I’m walking on uneven surfaces, it’s necessary to keep me from falling. It’s exhausting, and it’s frustrating. I try to avoid leaving the house. It’s exhausting and usually prevents me from exercising for a few days.
Back to a normal day…
Throughout the day, I need help with many things. Many things. I can’t even get myself something to drink. Well, I probably could, but the chances of me pouring a drink without dropping the pitcher and bringing it back to my chair without spilling it are really low. Toting hot food is a safety hazard. I only have one free hand to carry things, but toting anything means I don’t have a hand to catch myself if I start to wobble. I now have lights that are voice-activated so I don’t have to hobble around to light switches and lamps. There is a camera in my living room so my family can check on me when I’m alone and make sure I haven’t fallen if I don’t answer the phone. I’m constantly trying to figure out how to make my days easier. I find ways to manage and cope, like the clicking games to help with tremors. I take CBD to help with spasms and tics. I find distractions from pain. I’ve learned every single place I can grab or hold onto throughout my house to catch or steady myself, when needed. I keep snacks beside my chair. My cane is never out of reach. I go over even the littlest of things in my head. For example, on a day when I’m feeling weak and trembling — grab my cane with my left hand and place my right hand on the table by my chair to steady myself as I stand up, hold the edge of the table as I make my way to the hall, grab the door frame then the doorknob followed by the corner near the bathroom door, reach for the countertop, take two steps forward, turn around and close the bathroom door, then place my cane by the end of the tub and use the countertop and wall to make my way around the room as needed.
In the afternoon, I try to do another round of stretches and start my exercise routine. I try do as much as I can, but I haven’t been able to increase. I stretch off and on throughout the evening. It helps keep the muscles from getting too tight. I have noticed I am starting to have weakness in my arms. Add tremors to weakness and I’m finding it harder to eat at times. I’ll likely add exercises to help strengthen my arms soon, so that’s going to add to my exhaustion. I’m very tired in the evening, so you would think I would pass out as soon as I crawled in bed. Nope. I sometimes lie awake until 3 AM before I fall asleep. I go to bed around 10 PM every night. I am never asleep before 1 AM. Never. Sometimes I have a lot of spasms and tics. Most nights my muscles are sore and tired. Sometimes I’m in pain. Every night my mind tries to figure out how I got to this point.
Lather. Rinse. Repeat. I go to sleep and wake up to the same reality. Day in. Day out. I get a few fun surprises every now and then — like this spasm in my face, or word gaffes, or stammering, or struggling to get a fork to my mouth.
And that is a trimmed down version of a day in my life. I would say walk a mile in my shoes, but…