My Daily Nemesis

Anyone suffering from chronic illness knows how hard it can be. MS is no exception. It is my nemesis, present in every moment of every day. It makes everything a challenge. I wake up hoping for a good day or at least more good moments than bad. I struggle through the morning routine. I struggle through the shower and getting dressed. I struggle walking through the house with my walker and standing for too long. As much as I want to keep walking, when I sit down in my wheelchair it is a sense of relief. Some days my back hurts, some days my hips hurt, most days my hamstrings are tight. Straightening my left leg takes effort. It is hard to explain to people. The struggle is real. I see the worry on people’s faces on a bad day. Experiencing the gradual decline of my body over the past 4 years has been rough. Every time something becomes too difficult, every time I have to ask for help when I don’t want to, every time I just smile and say “I’m fine”, a little part of me hurts. There are still pretty good days though and that is something to be grateful for.

Walking is the most visible challenge but unfortunately not the only one. Invisible illness is a thing. It’s the part of illness you can’t see. Anyone suffering from fibromyalgia, rheumatoid arthritis, or chronic fatigue syndrome knows what I am talking about. Everyone suffers from something at some point right? I guess when it’s a daily occurrence it can be easier to just suffer in silence much of the time.

Fortunately there are accommodations that can help with most physical disabilities and we are working on incorporating those into our world. But, the invisible symptoms are often harder to deal with.

--Like the tingling in my feet that has kept me from wearing tie shoes for at least 5 years. Yep, my shoes may be ugly but my feet don’t tingle.

--Like the urgency to use the bathroom, always planning ahead so it doesn’t become an issue.

--Like the occasional spasticity that makes my leg muscles jump at random.

--Like the dizziness that hits me on a hot day or under bright lights.

--Like the fatigue that hits every afternoon when my medicine starts to wear off. It seems the intervals between when the medicine helps and when it doesn’t are getting further apart.

--Like the sensitivity to hot and cold which makes my muscles twitch when I step onto a cold floor or try to get a pedicure.

--Like the complications that make some of these things worse whether temporarily or permanently. Sometimes it’s hard to know. Is it a side effect of medication, am I sick, or is it just MS?

There are things I can do that help manage these issues, sometimes. They are just not always convenient or full proof.

But, I am thankful because it could be worse. I CAN still…

---Use my brain. Other than a few minor memory lapses my cognitive abilities have not been affected by MS.

---Get up and down, walk or stand for short periods and I am not confined to a wheelchair.

---DRIVE

---Maintain some level of independence.

---Enjoy time with family and friends.

---Live life without pain. Some achiness yes, but don’t we all?

---Help others

---Laugh

It is a constant battle between what I want to do and what I can or should do but I am thankful for the little wins.

Because of my clear physical disability people are more apt to accept my illness. There are many who suffer silently because their symptoms are not visible. There are many who suffer far greater than me.

But yes, MS sucks.

Life goes on.

You play the cards your dealt.

Yada yada yada…

Anyone that knows me knows I don’t want pity or sympathy, empathy maybe. There’s no way I could possibly ever explain what it feels like to be me. But there is always a reason to be grateful. Remember that. So many times we take for granted the smallest things. “I’ll just run in and grab a few things” leads to frustration because you are in a hurry and the older lady in front of you is not. It is about perspective. Yes it still frustrates me when people get in my way but oh how I appreciate when people take the time to wait for me and hold the door. Or ask if I need help getting something off the shelf. They are taking a moment from their busy schedule for me. And yes most of the people I know

would do the same thing but sometimes we fail to see the importance. Sometimes the things we think are so urgent can wait a few moments. You’re day might just get a little brighter if you slow down and appreciate the small things. The older lady in front of you is someone’s mom. I bet that someone is glad they are still shopping independently and enjoying life. I know when I have a good day and feel like venturing out for a few things I am grateful.