A glimpse into one MS Warrior's symptoms.
It is MS Awareness week and so I thought I’d do my part and write about how MS affects me during my daily life. No two people are ever the same with MS, we have common symptoms but there is such variety that you can’t judge as all the same. I don’t write this to garner sympathy for myself just to help educate and explain what one of the most mysterious diseases is like for one person.
OK, for starters, let’s talk about being disability. Getting put on disability rocked my world (still rocks my world). For a long time I was a very talented software engineer, not trying to sound cocky, but I was. Things came very easy to me until suddenly they didn't. Even with a lot of memory and cognitive issues I was still able to work for a long time, until things just progressed and progressed until work and my doctors determined I was unable to. Doctors provided enough evidence that the government approved disability in the first try, something that is not very common.
Aside from the financial issue (to go from six figures to much, much less is very hard, especially when it happens so quickly), the embarrassment I have felt for being on disability can be crushing. Particularly because if you were to just look at me from across the room you would have no idea why I am on it. Hell, you might even be offended to see me and then hear that I was getting a little money from the government for being “disabled”. I know the old me sure would have. So I will talk about some of my key issues, most of which aren't even visible.
Very often, I consider my cognitive issues my worst. Sure everybody forgets things now and again but it’s not the same for those with MS. Throughout every day, I suffer from bad memory loss. As in I can literally be watching TV and suddenly forget everything that happened in the few minutes before. Same thing with reading. Same thing with talking to people. Not even just with what the person is saying or said but who they are, that even happens with close family members (who is this? my dad? brother?). I know the information is there somewhere, but I just cannot find it. At times, it just feels like black holes in my brain, one minute a thought is there and then suddenly it’s not, swallowed up by some mysterious evil. Other times, I literally feel like my head is in a fog and fuzzy and I do things that I feel are correct and natural and later find out they are wrong. (wait, we don’t store milk in the microwave?). These symptoms are so hard to explain unless you've had them. And they are hard to deal with when you were someone who used their brain for a living.
My mobility issues are something I feel I do a great job covering up (I’m always trying to hide any of these symptoms I have and I take pride in that). I technically have been prescribed a wheelchair/scooter (my response to that was “no way in hell”). I’m also supposed to use a cane most of the time. I try to get around this by “wall walking”, leaning against things, or sitting when I am out. I’m also very good and convincing for a short period of time if I concentrate enough. My legs get very weak and very numb. One minute I am standing fine and the next I am on the ground. Falling is a way of life for me. I fall at least a few times a week and that’s even when I am careful. The doctors REALLY aren't happy with the amount of falls I have but I just see it as part of life now. I've adapted. Still, there are times when I’ll fall and I can’t help but lose it a bit. I think, damn, I played college hockey, I ran marathons, I was an athlete, and now I’m this? What happened? I’m 37, how can I be needing a cane?
I think one thing people hear about with MS is that many of us suffer from fatigue but I don’t really think people understand how MS fatigue can affect you. It’s not just being tired and needing to rest. In fact, no amount of rest helps. It’s not just a sleepiness but a sluggishness and a weakness in both body and mind. It’s literally hard to lift my arm at times. It also comes on suddenly with no warning and can come even after a very restful sleep. They often say that it takes a person with MS five times the amount of energy to do something then it does a normal person. With all of the damage to my nerves, my body has to work much harder to send signals throughout it. Every little thing, every little movement takes it’s toll. You begin to really measure movements, trying to plan out how to do everything so that you exert the least amount of energy or do it all in one trip.
When I was first diagnosed, one thing I never considered I’d have as an issue is pain. I was very wrong. Most people don’t associate MS as being a painful disease. My major pain issues didn't really surface until I was about 13 years into the disease. My pain ranges from whole body pain, where I feel like I fell down a mountain and got banged up all the way down, to the more common burning, fire hot agony that I get in my legs. Throughout each day I’ll go through periods of intense pain in both legs. It literally feelings like they are on fire from the inside out. Sometimes it’s there and I just deal with it and occasionally it’ll come on suddenly and surprise me. There has been very little relief for this, though recently I have been taking medical marijuana for it. Medical weed has absolutely helped both my pain and my mobility where a large number of other meds did next to nothing. It is the one thing that can give me some bit of a respite.
Loss of a job, being tired all the time, falling down a lot, and being in pain can wear on a person. When you are never actually comfortable in your own body, it’s no surprise that depression and anxiety are things that pop up. They are subjects I hate admitting and talking about but they are a very real issue for me and many MSers. My brain is a mess not just from dealing with all these issues but quite literally it has some damage to it. I have an exceptionally hard time with stress now (when it was something I thrived off of in my youth). A small amount of stress will make my body crumble, even if I am positive and good from a depression stand-point, my body just shuts down, my legs stop, my head stops. But even on a stress free day (which really, given everything I've talked about it, how many of those can there be?), I tend to get “down” a lot. I get sad about many things at the drop of a hat. I also suffer from extreme anxiety at times. They have tried an assortment of meds for this but those meds really only made things worse. These days I have a never ending struggle in my head, a struggle to try to be me. I've noticed I can tend to be very defensive about things I care about. Because of course I am, I am always in a defensive mode, I’m fighting the battle of my life every day, it’s just how I am wired now. Every day is a struggle of some sort whether it’s visible or not, and that includes the thoughts in my head. I have to work constantly to try to keep sane and relaxed, to stay myself.
Despite all of these things, life is not terrible. I have an amazing wife, family, and friends. And as cliche as it sounds that’s all you really need, that’s all that matters. In many ways I am lucky because I can truly appreciate the very littlest of things. Every laugh, every beer, every kiss, and every smile mean the world to me. As I said in the beginning these are just some of my symptoms, every MS Warrior is different. I just wanted to talk about one person’s symptoms to help bring awareness of this disease. If anything, I hope that it will help you to not judge people by their outward appearance. Everybody is struggling with something, remember that. Hopefully I will touch on more topics at a later date.
Do you live with any comorbidities aside from MS?