What my MS feels like

People ask me all the time what it feels like to have MS. So, I’m going to try to explain a little bit about it. Now bear in mind, it’s different for everybody. Multiple Sclerosis is not a one-size fits all disease. The experience of a person dealing with it depends a lot on where the MS lesions happen to be. Generally speaking, lesions are primarily on the spinal cord or in the brain. Wherever they are, they affect the way the electrical signals in the nervous system communicate or don’t communicate their message. The precise location is important, as is lesion size and the frequency with which they appear. I vividly remember a neurologist telling me that if a spinal cord lesion I had was a fraction in either direction, I probably wouldn’t even know I had MS. I don’t know why he told me that – it wasn’t helpful and if anything, it was depressing.

First of all, MS hurts. For me, it’s kind of an ‘all over everything hurts’ sort of pain. Like if you have the flu and you just kind of ache from head to toe. Over the years, I’ve gotten used to that. No medication really helps the pain go away. I’ve tried Tylenol, Aleve, Motrin…pretty much you name it, and I’ve tried it.  I’ve tried every over the counter painkiller, and it still hurts. So, I usually don’t bother in taking anything because there’s no point in it. I’m not willing to take any medication stronger than over the counter painkillers. I have tried things like CBD oil, other natural remedies, essential oils, meditation … and I still hurt. I have just adapted to living with a higher baseline of pain.

Because I can tune out the MS pain most of the time, there is a certain pain level that feels normal to me. As such, I don’t really recognize it anymore. My normal feels regular to me the way your normal feels regular to you. When I’m busy working on the phone or my computer, I’m not consciously aware that I have MS. Despite how many years I’ve been dealing with this, there are times that my mind messes with me and I feel like I can just get up and walk onto my deck, or go in the kitchen and pour a glass of iced tea. When my subconscious wins and I actually go to do that, reality slams in with the fact that I can’t get up, and I certainly can’t walk anywhere. You would think there’s no way your mind can mess with you like that. But it does.

Then there are the muscle spasm pains. I can go weeks without a muscle spasm anywhere. And then, I will have days where the muscle spasms in my legs are so bad that I think I’m going to lose my mind. Sometimes muscle spasms are in my ribcage; there’s actually a cute little name for that – they call it the “MS Hug”. It’s definitely not a cute experience.

If I can stretch my legs out without help, it’s a good day. The only thing I can really control is my left arm and hand. I do everything with that. It was an ugly experience training myself to be left-handed when my whole life, I was right-handed. A word of advice – try to teach yourself to be at least a little ambidextrous. You never know when your dominant hand might be messed up. You might sprain or break your arm or your hand, and find yourself fumbling and feeling like a fool when you try to teach yourself to do everything with the other because you have no other option. When I figured out how to hold a pen in my left hand and scrawl an approximation of my signature, it felt like an incredible triumph. Feeding yourself with your other hand is a similar victory. I used to be able to type quickly with both hands in the classic style. I was able to do about 90 words a minute. After 2009, my style became the one-handed hunt and peck. It’s not fun. It’s not efficient. But it is what it is.

When I’m really tired, have a cold or an infection or am just stressed out more than usual, my left hand gives me grief. It becomes difficult to hold a fork productively. It becomes tiring to type on my tablet. Something that would normally take a regular person two hours to type or write will normally take me six hours to do. When my hand is acting up, that six hours can easily become twelve or eighteen. Attempted movement can feel like struggling through cement. I’m not looking for sympathy, it’s just facts. People with MS learn how to make accommodations in their lives and figure out a way to get things done.

When my kids were little, the MS was not as bad. But even then, I had to make accommodations for changes in my abilities. I used to keep a tall chair in front of the stove and countertop so I could sit when I cooked for long periods of time. I would keep diaper changing supplies in the corner of most rooms in the house, so I didn’t have to carry a little one upstairs for cleanup. I learned to plan ahead, and think ahead, even more than most able-bodied parents do. I just couldn’t not plan ahead. I didn’t want to put additional burdens on my husband, who already shouldered a lot of responsibility, so I had to figure out ways to cut energy corners.

Today, my kids are teenagers, so all the things you need to do for your young kids are no longer issues – I think I bought the last package of Pull-ups for this house in 2008! But I have to do a lot of typing. Even the device I use had to be chosen with my MS in mind. I needed something that could stand upright, something I did not need a keyboard or mouse to use. I went through some trial and error.

For example, I discovered that some devices like the iPad Pro, had a beautiful screen but was too heavy to balance upright. It also had an ugly tendency to delete documents. At the time I used that device, I was a grad student at Johns Hopkins working on a certification in nonprofit management. Assignments were due on Sunday night by 11:59PM. I can’t tell you how many times my document would vanish from the iPad on Sunday evening, even though I had compulsively saved it. I would be left frantically trying to recreate it with my one-handed typing and an eye on the clock. This problem happened so often that I developed the habit of printing my document when I saved it so that I would have a hard copy to look at if I had to recreate it. It was nuts.

A couple of years ago, I saw somebody using a Microsoft Surface with a kickstand to hold it upright. You can work with it via the detachable keyboard, or put it in tablet mode and use it as a touchscreen. I find it has excellent capabilities. I’m now on my second Surface. It cost more than a full Desktop Computer used to. But it lets me work efficiently with my MS limitations. The only inefficient part is the voice recognition, known as Cortana. Surface has that capability, but it frequently malfunctions and ends up taking me more correction time than my pathetic typing does.

Mobile phones are another area where people with MS and similar conditions are challenged tremendously. Imagine trying to juggle your phone in one hand (your non-dominant hand) while texting at the same time. Adding to the challenge is the fact that I use an iPhone plus, so I have a larger screen. Go ahead, try it! Not easy right? Every time I get a text that’s what I have to do. I figured out ways to balance and jiggle it and twist my hand in weird fashions to make it work. But there are times where I am just too tired to text because it takes a crazy lot of effort. Sometimes I send (or almost send) people egregious errors. I do try to use Siri; the voice recognition part of texting and I find that she is conspiring against me also. Sometimes it amazes me how badly the artificial intelligence translates what I say.

Don’t get me wrong. I am massively grateful for technology. Technology allows me to adapt my environment as best I can to my situation, compensate for my disability in some ways, and still pursue some of my goals despite all the obstacles MS throws my way. But, it does present its own sorts of challenges.

So that’s a little bit about what MS is like for me. What physical complications do you live with? Feel free to share!

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