Keeping Up With the Change of MS
I have never really enjoyed change, not much at least. You could say I am a creature of habit. Sure a new car is great but if I find a good meal at a restaurant chances are I am always going to order that same meal rather than explore the other choices. You see I know I like this meal and sure, maybe I will find something else that I like even more but what if I don’t? “I should have just stuck with the one I know I like…” This might be why I have always ordered the “Clucks and Fries” at Red Robbins since I was like 10 years old. So it is sort of ironic that I wound up with a disease like multiple sclerosis (MS) because it seems like (for many of us) it is always changing! Chances are, if you have MS, whatever your health is like today is not how it was a year ago! Or even a month or a week ago! MS is always changing which means how you have learned to live with it has to change as well. Keeping up with this change can sometimes feel overwhelming or even disheartening when trying to make plans in life.
MS: it can bring about so many changes to your life. This usually starts with a symptom; fatigue, optic neuritis, spasticity, pain and cognitive issues are just a few of the main examples of symptoms that might not only be tough to learn to accept as “the new normal” regarding how you actually feel every day but can also be tough on the things you are able to do in life and how you do them.
People always told me (after I was diagnosed with MS) that I shouldn’t really look at the things I can’t do; I have to focus on what I can do. I try to do this, I do, but I have never found it easy. It has always taken me a long time to let go of certain things even though I know that trying to stubbornly hold on to them is just doing me more harm by stressing me out. Accepting that I could no longer do things like ride motorcycles sucked but was not too difficult; accepting that I could no longer do things like being able to simply write a letter by hand was! Since I was a small child I always had a crayon, pen or pencil in my hand and I loved to draw! Now I can hardly write my name in a legible fashion! I feel like this was a major part of “me” and it was taken away by MS despite my efforts to hold on to it. I was diagnosed with MS at the age of 20 when most people my age were really trying to discover their identities so whenever I realized that I could no longer draw, play music or even be as physically active or asindependent it was pretty devastating to the identity I thought was mine. I (and most people with MS) cannot do a lot of the things that I once thought were what made me “me”.
But, I really try to not dwell on those things, they are in the past and with time things change, that is just how the universe works. What is really difficult is learning how to accept and live with the “new normal”. At first it may be something small like having to wear glasses when you are reading or driving. Eventually you might have to learn how to live with something like spasticity or pain and with time you might start experiencing something like a crushing fatigue that makes the idea of doing anything but lying in bed all day seem astronomically impossible. But I am not just talking about the things you might have to change in life because of these new symptoms, no, what I am really talking about simply learning to accept and live with the idea that “this is how I will feel every day from the time I wake up to the time I go to sleep” which I know could change but sometimes certain things just last so long that it becomes clear to me that they are around “for good”.
So this leads me to the predicament I am in right now and the one I am really talking about. After a few years I get an idea of what is sticking with me and what is just “temporary” (regarding symptoms). So I spend all this time learning how to live with these hindrances and eventually even become comfortable with them. I have accepted them as my “new normal”. Then, when it feels like I just figured out how to function well in life and be happy with my situation, it changes again! Something new pops up, out of the blue and I have to learn how to live my life all over again (a bit overdramatic but that’s how it feels sometimes). When dealing with depression and fatigue this can be especially difficult because sometimes I feel like I just don’t have the motivation or energy to push MS back again but I know I have to or else MS wins. I just don’t always feel like I can keep up with how often my MS changes; it’s tiring, not just physically but emotionally.
Do you feel like your MS is always changing? How do you deal with that?
Does your employer provide workplace accommodations due to your MS?