A woman with her eyes downcast wipes away at a chalkboard. She is erasing a rollercoaster path to make the next climb higher.

Dealing With the Many Setbacks of MS

Recently, someone who’d been newly diagnosed with multiple sclerosis asked me for some non-sugar coated thoughts on my life with the disease. In particular, they wanted to know what they should be prepared for. After reminding them that everyone with MS has a different course and that experiences vary, I did come up with a general area to prepare for.

The number of setbacks I've encountered

When I looked back at my life with MS, one of the big things that comes to mind is the staggering number of setbacks I’ve encountered. I’ve made progress only to have it swiped away, and have had to seemingly start over so many times throughout my MS “career.” How one deals with setbacks goes a long way in determining how well they live their life with this disease.

One step forward, two steps back

Life with multiple sclerosis is kind of a continuous series of setbacks. Maybe you have relapsing-remitting MS and need to deal with the roller coaster of exacerbations. Perhaps you have a more progressive version of the disease and need to weather increasing levels of disability. Either way, you’re bound to continually encounter adversity and need to pick yourself back up. So many of us have exacerbations or new symptoms pop up without a moment's notice. We’re forced to fight through them to gain some sort of normalcy, only to then have something else go wrong.

Starting over again and again

Many have tried a new treatment and suffered side effects, only to then have an exacerbation a year later, making them have to start over with yet another new treatment. Some have adapted to a mobility device, only to have a new symptom require them to learn how to use a completely different one. Examples abound, but when I think of my life with MS, it definitely feels like I keep climbing a mountain and every time I get close to the top, I fall all the way back down, leaving me to start the climb over. That’s an extremely difficult experience to deal with over and over again.

Mentally and emotionally challenging

Experiencing constant setbacks because of your disease can really wear you down. I don’t care how many times you’ve fallen and gotten back up, it doesn’t get easier. It’s mentally and emotionally exhausting! While I’ve had a lot of moments that were tough with MS, one particular story comes to mind with regards to this subject.

Waking up with numbness on my right side

I was still in my first decade with the disease and still experiencing exacerbations every so often. Well, come Thanksgiving one year, after finally going a decent stretch without any problems, I woke up with numbness on my right side. The right side of my face and my right arm and hand were severely affected. Losing out on the use of my right hand is a severe issue for me because of other problems with my left hand. I couldn't even feed myself dinner, that’s how bad this was for me. At one point, I tried to take a shower and that really just consisted of standing and leaning against the wall and letting the water hit me. I really could do no more than that.

I thought my medication had been working

In that shower, finally, alone, I lost it. It had just hit me, that I was in a spot that I thought I was passed. I’d had exacerbations before, but thought the medication was finally working. Not only had it not been working, but now the disease was affecting me in the very worst ways. Moments like that happen a lot with MS, and they add up. As soon as you feel like you’ve made some progress, something happens, and it feels like that progress is erased. While we talk about regular fatigue a lot with MS, I really do think there is something to be said for the mental and emotional fatigue that we experience after living with the disease for a long time. MS is exhausting in so many ways.

Patience

After I had my little breakdown in the shower, I just kept trying to remind myself to be patient, that things will get better. Even if my body no longer returned to normal, I’d adapt, and overcome it. The longer you have MS, the more you begin to realize that you can get through just about anything. You learn that no matter how big the setback if you can be patient, you’ll eventually get past whatever is in the way. MS forces you to learn patience. It really teaches you how to weather a storm.

It's okay to have a breakdown and then move forward

You’re going to have a lot of setbacks when you live with MS; the best way to deal with them is to take a breath and try to be patient. Absolutely nothing about this disease is fast. Flourishing with MS means playing the long game and not getting frustrated every time you have to start over. That’s much easier said than done though. So, when setbacks do break you down a bit, hey, have that cry in the shower, but then dry off and remember that you just need to be patient and things will get better.

Thanks so much for reading and always feel free to share!

Devin

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