How do you deal when the struggle with MS is more mental than physical
I was officially diagnosed with MS in 2005 after a 5 year “we THINK you have MS but you are so young so we will wait and see” battle. The “wait and see” was because I was 20 when my feet went pins and needles numb for weeks with no explanation. I had a back problem at the time so they didn’t know if the numbness in my feet was from my back or possible MS. Fast forward to 2005 and I went numb from the chest down. That’s when they finally said “you have MS”. I was put on Copaxone but wasn’t very consistent with it as I hated the welts the shots gave me. The fatigue became a real thing for me. Pair that with two young kids and a full time job as well as a husband that worked the swing shift so was either at work or asleep for the next four years and it was a nightmare. In 2009 I finally had enough and decided to quit working. Being 30 at the time it was really hard to admit I couldn’t handle my kids and a full time job and all the housework at the same time. I’ve since up and moved with my family from California to Oklahoma and am much happier. I was switched to Gilenya in 2011 and it has REALLY changed my MS progression. Plus now my husband has a “regular” job and is actually home in the evenings so I have some help with things.
But being home all day is not something I have been able to adjust to. Even though the fatigue is a constant thing I don’t like being home all day every day. So for awhile I worked the lunch shift at my sons school which was 10:30-1:15 or so. But after year even that was a struggle. Because I felt like I was always going somewhere. Take the kids to school, come home get ready and go to “work”, get off work and pick up kids. Then make dinner and go to bed to start the routine all over the next day. I was always tired-it was as if I was working full time again. So I quit working the school.
The good news is I feel better the longer I am on the Gilenya and the fatigue has lessened over the last few years but still creeps up if I’ve been doing too much too long. The best thing that has improved my overall health, strength and mobility is that when my son started taking TaeKwonDo in 2013 it looked interesting enough that in January 2014 my husband, daughter and I started taking classes too. Boy has taking classes helped me! I told my instructor that I had MS and my balance sucked and I always felt weak and tired. He has really worked with me and helped me to not only achieve better balance and stamina but also in April 2016 I along with my husband, son and daughter achieved my first degree Black Belt! On top of that the longer I’m on Gilenya and the more I am doing TKD the more I am able to do physically. I am more active in general, things don’t wear me out as fast as they used to, the fatigue has lessened AND I clean our TKD school four days a week. Which is actually the best thing because I set my “hours”. I go in and vacuum and mop the mat and clean the bathrooms when I feel like it-well I do have to make sure it’s between when the kids go to school and when they get out but since it only takes me an hour or so I have pretty much all day. My “boss”/instructor is awesome because if I’m having a crappy day he cleans instead. Tells me to rest and is constantly making sure I’m ok physically to do the cleaning (which in the last couple years has gotten easier and easier the more I do TKD).
In the last few years though, I have noticed that while my physical health seems to have improved my MENTAL health is sliding. I don’t understand things being said to me and more often find myself repeatedly asking “what” repeatedly just to understand the conversation. I have to tell my kids to wait till I’m done with whatever I’m doing and be right in front of me to tell me something or ask a question because it takes me longer to process what’s being said. I don’t watch things on tv or in a movie that I would have to think about the meaning of because I don’t process what’s being said fast anymore. I would rather text than call someone too. At least over text I can read or re-read if I don’t understand. When it’s spoken I tend to not understand as much. If I go out anywhere I try to make sure my husband is with me because he gets it. He’s able to “translate” the things I struggle to understand. The running joke around my friends and family is that when I’m having a hard time speaking or understanding what’s being said it’s “Moriah Syndrome (MS)” causing the problem. And they all have been around me enough to understand what I’m trying to get across without me having to fully explain.
But here is the thing…I don’t tell people I have MS. I have a few friends here in Oklahoma that know and my family that’s here already knows so it’s not a thing. But my new TKD family is different. In fact, most of the people in the school don’t even know I have it. And when they do happen to find out they are shocked. Because they have only seen me on the mat every day working the drills and keeping up with the best of them. I admit sometimes I push myself too hard because I don’t want to have to admit even to myself I can’t do something. I don’t want to see the pity or skepticism people get when they do happen to find out I have MS. I hate the “but you don’t LOOK sick” look I get because they don’t understand MS. They don’t see me when I’m struggling to get going some mornings or get that my feet are ALWAYS numb yet I keep going. Or that sometimes I go home and just collapse on the couch after class or even cleaning the school because I’m so worn out. They don’t know why when I stand up after sitting I stand in one spot till I’m sure my legs are going to work-most don’t even notice I do this. And the mental part I am struggling to admit even to myself it’s becoming a thing, so if I’m talking to someone at the school and I don’t quite get what they said I just smile and nod. So the question lately has become how do I explain to someone that while I don’t “look sick” and have a Black Belt around my waist I’m struggling to grasp the simplest of conversations. I am grateful for every day I can get up and do the things I do but it’s getting more and more depressing to know I am losing so much cognitive understanding.
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