I thought I would write about a subject I don’t usually talk about. Being involved in a sport with Multiple Sclerosis (MS). Anytime someone finds out I have MS they are instantly shocked to hear it, but you’re so active they say. Not all MS patients are immobile in fact most are very active. I didn’t really know anything about MS until about 5 years ago when I met someone at work whose husband had it. She told me horrible stories about him being in the hospital and not being able to walk at times. She told me that MS would slowly make it so he couldn’t do anything and that it would eventually kill him. Then that same year I found out a good friend of mine was diagnosed with MS. I was terrified for him. He had always been active and I couldn’t imagine him immobile. Yet he seemed fine. Most people hear MS and believe that it becomes a life sentence in a wheel chair. However, this is mostly not the case, there are now more treatments and research going on to help people with MS.
If you don’t know anything MS it’s an inflammatory disease that effects mostly the nervous system. They believe that the immune system attacks the myelin sheaths that coat the nerves in the brain and spine. When this happens the nerves cells in the brain and spine cannot communicate with each other effectively. This is what causes the loss of movement or feeling in limbs. These attacks to the myelin can heal but often times will create scar tissue. In some cases the effects of these attacks may never go away but some can. Especially if the scarring happens in the brain which can re-wire itself a little easier then say in the spine which has less space. They don’t know what causes MS to occur and there is no current cure only medicines that may help prevent further attacks or episodes. When someone is diagnosis with MS there is no way to know how bad their case may be. For some they may only have 1 attack in their life, while others may have multiple attacks
I was diagnosed only a few months after my father passed away. I’m assuming that the shock of losing my father lessened the blow of being diagnosed. I let my friend know and he was able to reassure me that what I had heard prior was not really always the case for MS patients. I told my friend about my interest in starting Roller Derby and how I worried that now it was not an option for me. He told me there was no reason not to pursue it. When he was diagnosed he was boxing and wanted to know if he needed to stop, his doctors encouraged him to continue. After talking to my doctor about being involved in derby and getting a similar positive reaction I got my skates and gear. I was told that if anything physical activity is a great thing for MS patients. They let me know that if I ever did have an episode that I would be in better shape to recover. I decided I wouldn’t allow a diagnosis to affect me and what I want to do.
I believe that I’m pretty lucky and my initial symptom wasn’t that bad and hasn’t really given me many problems. The hardest thing I had to adapt to was the weekly shots a medication that is taken once a week through intramuscular injection. Let me tell you It’s not easy stabbing yourself in the thigh with a 1 and 1/4th inch needle. The first few months of this were torturous and doing the shots would take up to an hour of me trying to stab myself. Then I would have a night filled with fever and horrible aches that would last throughout the following day. They tell you the medicine can cause “flu like symptoms” but it’s really more like the flu on evil steroids. For the most part the shot now only takes me about 15 minutes to do if that. Also the side effects are less server now. I feared that the shots into the muscle would affect my thighs when it came to skating but luckily there is no issues there.
One of the symptoms of MS that seems to give me the most problems in derby is fatigue. I use to be an insomniac so being tired isn’t a new concept for me, but this is completely different. This tired is like your blood has turned into iron and is weighing you down. It’s physically painful to wake up and begin to move. When you are that tired and weighed down but you know you have to now spend the next 2 hours in practice fighting through the exhaustion it can be demoralizing. Knowing that you could do better at drills if you just had more energy. I fight through the muscle fatigue the best I can, I may not be able to stay in that pace line but I will keep skating the best I can! When we do a falling drill for 5 minutes I force myself to keep getting up, keep trying as hard as I can. In the end it will make me stronger. When I finish a practice like this I feel amazing, tired but amazing.
The other issue I will encounter will start as the days get hotter. We skate in a large hanger down at Oaks Park, when the temperatures rise the hanger is more like a microwave. Heat can effect MS pts and some can’t stand to be in it at all. I feared that the summer would destroy my derby fun. Luckily it hasn’t been too bad. It gets a little harder for me to breath and longer for me to catch my breath at practices. I also end up feeling extremely dehydrated so I make sure to drink a lot more water than I normally do. This year will hopefully be better as my practice times are not always during the hottest times of the day. The worst day will be our Sunday endurance practice where we skate fast and hard for an hour in the hanger. However, our coaches understand that in the heat we must drink more and we are allowed to stop if we know we need water.
I don’t often bring up my MS not because I’m embarrassed by it or ashamed. I don’t talk about it because I don’t want to be treated any differently. I also don’t want to use it as an excuse as to why I can’t do something. As long as I am physically able to push on I will. I have seen some people turn any negative thing in their life into something that destroys them. I would rather find a way to take that obstacle and turn it into something that will make me a stronger person. I know there is always the possibility that my MS could cause me to lose mobility but why should I let that stop me from skating right NOW? Derby has helped me focus on my body and being as healthy as I can be. I’m going to take advantage of every healthy day I have.
Live each day to the fullest! Life can change on a dime.
Until next time keep skating and skate hard!