Easy Assembly: The Life of My Hands After MS
In 2012 I had a major relapse that sent me to the hospital in excruciating pain that a shot of Dilaudid (Hydromorphone) barely took the edge off. I remember my left leg was so tight and rigid with spasticity that it would not bend even when a nurse tried leaning against it, which in retrospect I doubt you are supposed to do. Anyway, my parents had taken me there, and after the shot of narcotic-juice kicked in, I remember them talking to some specialist about admitting me to an inpatient physical rehabilitation hospital in Loma Linda, California. The next thing I recall was being put on a stretcher and wheeled into an ambulance. After that I remember watching the lights on the ceiling pass me by as we navigated the hallways of the hospital before I was put into a room.
There are a lot of gaps in my memory of this 6-week experience, but when I first got there I was basically limp from the neck down, meaning simply getting out of bed and into a wheelchair was a huge endeavor that required a nurse and a transfer board. What was even worse than that (to me) was the fact that I could barely move my hands; trying to make a fist felt like I was trying to close someone else’s hand by intensely staring at it. Along with all the physical, occupational, and speech therapy I had to do to “get back up on my feet,” I also had to spend a lot of time doing hand therapy, and while I absolutely hated it, I did my absolute best as the idea of not regaining function in my hands was just not an option to me.
Working with a hand therapist
I saw a hand therapist every day and we worked on all sorts of exercises using clothespins, TheraPutty, and eventually a weird contraption that attached to each finger and used rubber bands to create tension while you tried to open and close your hand. I also did all sorts of exercises to help rebuild my fine motor skills, rebuild my dexterity (the ability to hold and manipulate an object in your hand), and try to stimulate the nerves in my hands in attempt to regain the ability to feel different textures. Eventually I could type on my laptop one finger at a time, hold a fork, and even attempt to scribble my name on a dry-erase board. I ended up leaving before my discharge date because I was going crazy in the hospital and felt I had learned enough that I could continue these exercises on my own at home, and after much work and the start of some new medication, I felt as good as new! I could walk, talk, type, and button my shirt like nothing had ever happened!
Two years of feeling amazing
For almost 2 years, I could actually make it through some days without ever really feeling painfully aware of the fact that I had MS: my outlook on life was so great! I had come so far, and because of that I felt like there was nothing I couldn’t overcome. But those roughly 2 years of feeling amazing came to an end when I was hit by another relapse that once again set me back. It wasn’t nearly as bad as my 2013 relapse, but it did leave me with a few new “permanent” symptoms like oscillopsia, terrible fatigue, cognitive difficulties, and… a slowly deteriorating set of fine motor skills as well as dexterity.
Deteriorating fine motor skills
I used to use my hands every day to type, fix things around the house, work on computers, do really basic car maintenance, draw, sculpt, and even play a bit of piano among so many other things. But gradually, I lost the ability to do a lot of that, and in the last couple of years really basic things (well to me I guess) like using a screwdriver, shaving, or (once again) trying to button up a shirt have become really difficult. While I have simply given up trying to do certain things, there are some tasks (like typing) that are just too much a necessity in my everyday life to not do anymore, and so I have invested a lot of time and money trying to find the best ways to work around my disability.
Simple tasks have become very frustrating
For the most part I feel like I can get the job done, but it has required me to take the idea of “stress management” to a whole new level because many of these simple tasks have become unbelievably frustrating. The other week, I bought a new bookcase for my new room here in Colorado, and though it is one of those “easy-to-assemble using nothing but a screwdriver” projects, it ended up taking me an hour or two to complete. My hands are now so unsteady, and trying to hold something like a screw has become rather difficult. Something like this used to take me about 30 minutes, but I spent so much time dropping all the little pieces and trying to get my screwdriver to stop shaking and actually make contact with the screws instead of scratching the wood around it! After I finished assembling this bookcase it dawned on me just how bad my hands were becoming… I mean yeah, I still was able to put the thing together but I started to wonder how long it would be before I was back to where I was in 2013…
Making time for exercises
At this point, I feel like I should be doing some of the hand exercises I learned while I was in that physical rehabilitation hospital so I can maybe prevent things from getting worse or possibly regain some of the function that I have lost in the last couple of years. It’s just hard because there is so much I need to work on when it comes to my health, and on top of that, I’m working from home and about to start school. That may not seem like much for a 27/28-year-old, but when you add crippling fatigue, poor cognition, and all the other symptoms my daily life is now plagued with (which all seems to make the fatigue even worse), it becomes a matter of there seeming to never be enough time in the day to get even half of what I need to do done. So while I have no idea how to fit this in to my daily schedule, I know it’s important that I find/make time, because nothing is more emotionally frustrating to me than not being able to do something with my two hands that I have been able to do for as long as I can remember.