What it Means to Me

Multiple Sclerosis is a tricky disease to try to describe to someone who is unfamiliar. Partially because it is so complex, partially because it’s often described as a snowflake disease, meaning that no two cases are alike. Every person who lives with MS has a different experience, so not even fellow “MS’ers” can truly say “oh, I know EXACTLY how you feel.” They don’t.

Since I’ve decided to pull you all into my world, I feel like I should probably address some of the immediate questions. The questions that you may have but don’t know how to ask or the answers I find myself repeating time and time again. (*btw, I don’t mind your asking. Honestly. If I minded, I shouldn’t have told you in the first place).

Right now, I am doing pretty darn good. My MS is kind of like exaggerated version of the annoying things that everyone experiences from time to time. You know how when you sit or sleep in a weird position and your hand or foot falls asleep? It happens to me daily. And when it happens I have a quick moment of panic, like I am afraid that the feeling won’t return to normal. It does. Ever walk into another room and think “what am I doing in here?”. Yeah, I have to consciously think about why I am where I am several times a day. Loss for words? I find myself changing the sentence I was about to say because I cannot think of a word or rewriting something because I cannot remember how to spell something really simple. Sometimes I say the complete wrong word, which can be really funny OR embarrassing. (More on that later, in a future post, possibly titled “Fun with MS”). My muscles tense up when it’s really cold out and extreme humidity makes me feel like I’m walking in quick sand. Crowded spaces make me feel like I can’t breathe and I have to know where the exits and bathrooms are wherever I go. When I over-do it, my legs feel like my feet are cast in concrete and I feel like I need a massage EVERY SINGLE DAY. If I’m trying to force myself to stay awake, I get double vision and the cognitive fog makes me feel like I’m sleepwalking. I have bouts of insomnia that last a couple of weeks. I lay awake at night unable to turn off my obsessive thoughts about trivial things. I have to plan ahead to make sure I have the energy and supplies necessary for every journey. I’m more anxious than ever before. If you’re thinking that this all sounds awful, it’s really not THAT bad. I live every day knowing how lucky I am and I am very, very aware of how much worse it could be.

They call MS an incurable disease. I say there is not a cure – yet. There is a lot of money being spent in research and development and every year they get closer to finding something that maybe will not be a cure but can stop MS in its tracks. Some therapies in trial are even thought to reverse the effects and heal the damage. I currently take Copaxone. A daily injection that has no side effects nor drug interactions. There are oral medications and infusions available for those who cannot tolerate the injections or who have their MS worsen over time. My neurologist and I are on the same page and until something comes up that has less serious side effects than what’s currently on the market, I am going to keep giving myself a shot. Even though it’s a huge pain in the ass, or arm, thigh or stomach, I keep doing it. My arms and legs are bruised but my stomach and butt are underwraps always anyway, so, who cares! I’ve had a lot of people say to me “oh, I could NEVER give myself a shot!!!!”. Yes, you could. You could if you thought it would keep your mobility and life intact!

I also try to take care of myself in other avenues. I take supplements, eat as much fresh veggies and fruit as possible and have all but cut out artificial food and keep processed junk to a minimum. I’d be lying if I said I don’t eat Pizza Hut or a good bar burger every now and again but I try to keep it healthy. I took my neurologist’s opinion on red wine to heart and make sure to get my quota. I exercise and do yoga. I read, listen to music, spend time with people who make me laugh and snuggle with my husband and dog a lot. I am totally convinced that these things help. I treasure the positive people and moments in my life. I have very little tolerance to negativity. I try to have an open mind, be kind to others and to cherish every day. I meditate and pray. I thank God every night for blessing me with the day I have had and pray that when I wake up in the morning, my legs will carry me through another day. The one thing I don’t do is complain. I hardly ever talk about my MS unless someone asks. I just keep on keeping on. This is my new normal, this is what it’s like for me.


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