A Story of Staying Positive with MS Over the Years and During Troubling Times

How to Stay Positive with MS

With the world going crazy over these last few weeks and the frightening and uncertain situation surrounding COVID-19, it’s amazing any of us can remain positive. It feels like the fabric of our society is disintegrating around us and all the routines and habits that keep us sane are disappearing.

Arguably, it’s even more important for people with chronic conditions such as multiple sclerosis (MS) to remain positive at a time like this. We need to maintain our abilities as much as we can, or we’ll never bounce back like healthy people will. We have to keep smiling, otherwise, what’s the alternative? We’ll end up wallowing in despair, and that won’t do any good.

I’m usually a naturally positive person. I’m lucky that I don’t take myself too seriously and I view my glass as half full rather than half empty. I’d be lying though if I said I never get blue about living with the emotional and physical roller coaster of MS.

I’ve been living with MS for 12 years and my relationship with it has changed over time as the disease has developed. In this article I’ll look at the different types of MS and how to remain positive whilst coming to terms with it.

Relapsing and remitting MS (RRMS)

Most people are diagnosed with RRMS and it can be a frightening time. I remember being in denial at first, refusing to admit something was wrong even though constant relapses were proving otherwise! It’s easy to stay positive whilst in denial though, and it wasn’t until I was forced to tell my employers that I had to face it.

It was a positive experience though, and I soon felt strong enough to tell my friends and family. This meant I was no longer dealing with it alone and people were able to understand a bit more.

I also realized that knowledge is power at this point and began to learn as much as I could about MS, which made me feel empowered.

Things I leaned about MS to keep me positive:

  • Use trusted websites: the internet is awash with information, but some of it isn’t true. I only look at medically credible websites such as mssociety.org.uk or mstrust.org.uk as I know I can trust the information I find there. There are many others though, so find one you can trust and stick to it.
  • Exercise is OK: at first, I thought I’d have to stay away from working out, but that isn’t true. Exercise is so beneficial for our mental well-being as well, so it’s vital for staying positive.
  • Eat well: a balanced diet is so important for keeping physically and mentally healthy.
  • Stay connected: keep doing the things that make you smile. MS isn’t a death sentence. You just have to learn to live with it.
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Progressive MS

A few months ago, I was told I now have Secondary Progressive MS (SPMS). It didn’t take a genius to work this out, as I haven’t had a relapse for years, so I was mentally prepared for the news.

I’m much less frightened of MS these days and I think I’ve built up strength and resilience over the years. I don’t allow myself to think about what could happen, as I know no two people are the same, so it’s unhelpful to compare myself to anyone else.

The most difficult thing for me has been getting used to my world shrinking gradually. I can no longer go swimming or for a run, I can’t get out as much as I used to or do any of the things that used to keep me positive. That’s why I’ve developed the follow coping strategies below, which you may find helpful.

Tips for dealing with progressive MS:

  • Sense of humor: I would go mad if it wasn’t for my online MS friends and all the funny stories we share.
  • exercise is still OK: I can still do seated exercises, lift weights, and practise mindfulness and meditation.
  • Diet: this is even more important so I can stay as strong as possible
  • Stay connected online: as my social life has shrunk, I make use of the online community as much as possible. I can be mostly found on twitter, but lots of people find Facebook and Instagram useful too.
  • Read: I’m delighted that my cognitive abilities still allow me to read.
  • Surround yourself with positive people: whether it’s online or in person, make sure people are positive.

So, when the rest of the world is freaking out at having to stay in lock-down for a while, people with MS are smiling to themselves and realizing it’s not going to be that different! I’m quite happy chatting to people on the phone instead of in person, and I can keep myself occupied for days without going stir crazy.

Above all though, I think being positive is a state of mind we can chose to be in. if you’re feeling blue, pick yourself up and keep smiling.

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