There's No Break With Chronic Illness
One of the toughest parts about having a disease like multiple sclerosis is that it never goes away. Sure, some symptoms may ease up, but it never leaves. Many folks will have symptoms that affect them every single day of their lives. Others may have a different course, but still have to take medication, go to appointments, and worry about the future. Multiple sclerosis is relentless and permeates so many different parts of our lives. For many of us, we never get a break from MS and that in itself is absolutely exhausting.
What it means to live with a chronic illness
MS is classified as a chronic illness for good reason. It never goes away, there is no cure. Even if you have very few symptoms or exacerbations, it’s still there and can it pose a problem at any time. We have many treatments available, but their primary function is to slow down the progression and to keep the illness at bay, not to end it. So no matter your course with MS, it’s always there and can easily come to mind.
Required maintenance
Despite how well you are doing with MS, the disease often requires a good amount of maintenance. You need to take a disease-modifying therapy that is regularly administered at various intervals, ranging from a couple of times a year, to every month, to even every single day. Aside from treatments, there are routine doctor appointments, MRIs, blood work, and often various additional treatments, like physical or speech therapy. There is always some type of maintenance action you need to take, or at the very least, there is one on the horizon you need to prepare for.
Managing symptoms
While some patients have a pretty relaxed course of MS, others deal with symptoms every day. Pain, spasms, fatigue, vision problems, sexual dysfunction, brain fog, the list goes on and on. This disease has so many ways it can cause problems. For many, there isn't one bad area. I’m in that boat and it feels like it keeps springing leaks, with new holes constantly popping up (in reality, that’s close to true, because it’s holes in the myelin sheath surrounding my nerves that are causing the problems, so a boat springing leaks is a pretty good descriptor). When you deal with some kind of symptom every single day, it wears on you a lot. There’s no place to hide.
Worrying about the future
The unpredictability of MS is another contributing factor to many folks being unable to get a break from their disease. No matter how healthy they feel, there is a certain amount of people that will be unable to block out the fact that this disease can rear its ugly head at any moment. You never know when you may wake up and have something go wrong (like not being able to walk, as has happened to me overnight in my past). For a lot of folks, that kind of concern is always in the back of their mind and it makes it hard for them to ever truly be at peace.
Finding a break
It’s true, this disease doesn’t give us a break. There is no vacation from MS. This is all the more reason to find a way to put it aside at times. Find ways to distract yourself and find ways to have fun. I find talking about my concerns with a therapist or even close friends to be a helpful first step. I’ll even tell my friends, 'hey, I need to vent, I don’t expect or even want you to say anything, but I have to get it out'. Because if I don’t get it out, I can’t forget about it, and then the relentlessness of the disease begins to weigh on me like an anchor. I get it out and then I dive deep into a hobby, or stream a TV series, or I lose track of time picking out new toys for my dog.
How do you handle not having a break from your illness?
Thanks so much for reading and always feel free to share! As always, I would love to hear about your experiences in the comments below!
Devin
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