What does MS look like? This is a fine question. As I have mentioned previously, MS affects people in highly individual ways… it is all down to where the damage is done to a patient’s brain or spine. I can tell you what it looks like for me, which may shine some light on the daily difficulties that I personally struggle with and worry about. So - let us start with a restatement: I am on a disease-modifying therapy that over the past 6 years has, according to brain MRIs, apparently stopped the progression of my MS. Any physical change or expression of damage has merely been my body catching up with what was already done. That having been said, it seems easiest to accomplish this in list form - I’ll discuss as it seems necessary. So we ask again for aesthetic purposes:
What does MS look like (Jim edition):
At this point I have a constant neuropathy in my left hand and left foot. For the non-doctory out there, this simply means that I have a constant weakness in my left foot and lower leg and a constant sensation deficit (my words) in my left hand. In terms of what this looks like? I kinda tend to limp a little off of my left side. More on this in a minute. So far as the left hand goes, it just means I don’t have full feeling in my left forearm. There isn’t really any appreciable strength loss, I just don’t feel things very well. Also it means I have gone from a 100 wpm/2 mistake touch typist to… significantly less (and more) than that.
For me, mentally, I am 99% of the time exactly here as I always have been. Rarely, you might see me struggle to grab a word, which then throws me into a further confusion because, well, words and putting them together are kind of my things - even if I have been resistant to the thought before. On a non-viewable level, this probably gives me my greatest frustration. I will literally think a word, start a sentence and forget the word by the time I get to it. I hate it. Sure sometimes they are bigger or more technical words… but still.
On a mobility level, because of my leg neuropathy, I struggle on uneven or soft ground/floors. Largely this is because of the persistent drop-foot that I experience. Frequently, my left toe will simply catch on even flat ground and give me a very stylish shuffle. Worst case, it can upset my balance, which is why, particularly on uneven ground, I will frequently use a walking stick. The drop-foot is part of the equation, but in addition to that (and it’s kind of hard to describe) in essence my foot is one of those pin-art-relief things that were popular in the 90s. Where an average person probably perceives their foot in three parts when they walk (heel, toe, arch), I perceive my feet as 100,000 points (give or take) and my brain tries to deal with every one of them all at once. Then it gets overwhelmed and things feed into themselves, particularly the frustration.
In addition to the uneven ground thing, temperature and effort expended can also serve to lessen my body’s effectiveness. At this point, I probably qualify as a photophobe. I try to avoid direct sunlight as much as I can… especially when I know I will be walking. I also try to limit long-term exposure (hours) to temperatures above 77 or so. The relationship between my body core temperature and my ability to move like a normal human is inversely proportional. The higher my body core temperature, the worse my gait.
I have an energy budget and it fluctuates. Some days I might get up and clean the kitchen and sweep the stairs and mop the floors and make breakfast burritos and dinner and… while sometimes, it takes all day to bank enough energy to merely do dinner without all the extra crap. This creates a guilty space that is hard to navigate when you stop at giving 80% of what you have versus running yourself to E and paying for it for days. When you save something for yourself, it is a little hard because you know internally you could have done more… but you also know that you are the one who would pay for it for days if you went completely empty.
At times, I piss like a racehorse, whatever that old expression means. I can some times pee a lot. Or I can not pee for weeks (ok not really that, but). I tend now to have what I call a nervous bladder. Not in a “have trouble using a urinal at the airport” kind of way but in a literal way. When I get nervous (or upset), I will have to pee. Nailed on. For instance, driving the rear-wheel-drive-10-ft-tall van through the mountains the first time I drove it with the semis and the wind across the gulches and all…. worked out a lot of pee. Thank goodness for pull-offs and in-van toilets!
Looking at it on paper, it looks like a short list. I guess it is, but it is an impactful list. It influences literally every decision I make… when I leave the house, when I travel, when I stand up, when I wake up…. I am thankful it is not worse. Feel free to jump in with questions in the comments here. Or I have space reserved in the Twitter machine for MS tweets @brainplaques. Or my phone works. Or my email. I would love to share information related to what makes you curious about this Dx. In the meantime I’ll push this out even though it’s a little late. I’ll work to get back to posting these at the earlier time. Be cool and excellent to each other, folks.
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