You probably noticed that the name of this blog is “Love My MS Life.” I’m guessing many of you have wondered how I could be crazy enough to make such a statement. Who loves living with multiple sclerosis?!
I can assure you that I love nothing about MS. But I chose that name because I love life, and I acknowledge that MS is a huge part of my life. I can choose to hate it or I can choose to accept it and love my life the best I can. So I do the latter. Or at least I try.
But the truth is, there are days and weeks when I don’t love my MS life. There are physical and emotional issues I deal with on a daily basis that most people will never understand unless they live with this disease. Many of these things are invisible to the people around me, which can be frustrating and lonely. So I think it’s OK to admit that I often have hard days. Because I know you do too.
Here are some of the issues that I commonly struggle with. I’m sharing them not because I want to be a downer, but because I want you to know that I’m far from invincible. (Feel free to share your struggles or thoughts in the comments section at the end of this post).
1. Not knowing. No one really knows what his or her future holds. But the uncertainly that comes with living with MS is one of those things that I never really stop thinking about. Will I be walking in a year? Will I go blind before I get to see my grandchildren? My busy days take my mind elsewhere for a while, but for me, that little inkling of fear never fully goes away, no matter how much faith or hope I have.
2. Fear of becoming a burden. If my MS progresses, I will need assistance doing everyday tasks that I now take for granted. Being placed in a care facility is not something I want to happen, but there is a chance it will. I don’t want the people who love me to have to visit me when I may not even be able to communicate with them, let alone hug them. No thanks.
3. My finances. I’ve been on disability for a long time, which means money has always been tight. I’ve had over nine surgeries, along with many treatments such as chemotherapy in which I must pay 20% of the cost. A surgery that requires me to be in the hospital for three days can end up costing me over $5,000 out-of-pocket. Plain and simple: living with MS is expensive, and I worry about how I’ll be able to afford treatment for the rest of my life.
4. Dealing with the pain. There is pain associated with MS that is invisible. My legs have started aching — it’s almost all the time, and is often worse at night when I’d like to be sleeping. More often than not, one or both of my legs will go numb in the middle of the night and I’ve had to literally crawl to the bathroom when I need to pee. This nerve pain that stems from the brain can sometimes be treated with medication, but I can tell you I’ve tried a few of them and they gave me no relief. I rely mostly on stretching and exercise to try to ease the pain, but nothing really helps. I dread bed time knowing I won’t be getting nearly enough sleep. I try to explain the pain to family and friends, but again, without living it, you can’t understand it.
5. Worry. I know there’s not much productivity that can come out of worrying. But it’s extremely difficult not to go there even when you know it only causes stress. I’ve heard the saying: “Worrying does not empty today of its troubles, it empties tomorrow of its strength.” True, for sure. I try to keep this in mind.
6. Blindness. Since I lost the majority of my vision in my left eye at age 13, I’ve had bouts of optic neuritis and double vision more times than I can remember. Each time, I’m pumped full of IV steroids for three to five days. My biggest fear in regard to my MS is going blind. Hands down.
7. Forgetfulness. Cognitive dysfunction is very common among those with MS. People joke with me and say I have a selective memory, but forgetfulness is a real symptom that’s extremely frustrating for me. This “Cog-Fog” affects my short-term memory. I might not be able to recall the specifics of a conversation from a few days ago, but I do remember a lot of details from my childhood. I understand this happens to most people as we get older, but this has been an issue for me for quite some time…and I’m not that old. It’s the MS.
8. Bladder dysfunction. I often feel the effects of bladder dysfunction, an MS symptom that’s plagued me since my early 30s. It’s invisible and uncomfortable. And unless you experience it, it’s difficult to comprehend the physical and emotional toll it takes on you.
9. Weak immune system. With MS, the immune system is already compromised. So catching a common cold or flu can be a very bad thing. A cold turns into bronchitis; flu can land you in the ER hooked up to an IV for fluids. Thankfully, my friends and family understand this concern and will let me know if someone is sick so I can avoid that person like the plague — literally!
So now it’s all out in the open: my biggest stresses and fears about living with MS. Even me — someone who does my very best to live with hope and “love my MS life” — gets depressed sometimes and needs to rely on my favorite people, movies, and inspirational quotes to cheer me up and help me see past the challenges. It’s also really helpful for me to lean on the MS community for support. It makes me feel better when I remember that we’re all in this together.