MS Hopes

This week Niamh McCarron shares her understanding of life with MS, hope and Covid-19

A few weeks ago when I started writing this blog piece, Ireland wasn’t in the middle of the Coronavirus outbreak that we’re now dealing with. With that in mind, I have made some changes to this piece, and I hope that it is helpful to anyone out there who is feeling the effect of social distancing from their loved ones.

Back then…

Last summer, I had my annual MRI. I hate MRIs – I know they won’t hurt me, but I feel so anxious and stressed when I am in the scanner, I get myself all worried in advance. But, for me, they are a necessary part of my MS treatment, so I have had to get used to them. After the MRI comes the neurology appointment – these appointments bring their own stresses – I am sure I don’t have to explain that to most people reading this! When I went to that appointment, I was feeling pretty good and had nothing negative to report about how my MS was progressing.  It turns out, my MRI told a different story- I had two new lesions. I was shocked. I felt FINE – at times I even felt like an imposter because I was keeping so well, with little to report. 

I won’t lie; it took the wind out of my sails for a while. I didn’t know what this meant? Would I now see a sudden decline in my condition? What if this was the start of many more lesions popping up? Had I just been lucky up to then? My neurologist was reassuring we had a plan to carry on as normal for another 6 months, without making any decisions about changing treatments. 

I found those 6 months a bit tough at times. My normal way of dealing with things is not to dwell on them too much and to find other things to keep me busy, but at times I did find myself drifting into “what ifs?”

I really believe negative “What ifs?” can be dangerous for your mental health.  None of us know what is going to happen and if we could tell the future, wouldn’t we all be millionaires right now? Instead of the negatives, I try my best to focus on the hopeful possibilities. I could sit and worry about what those new lesions were doing and almost convince myself of the worst case scenario, or I could put that energy into hoping that this was a small blip on the long MS journey ahead of me.  

Now…

With the daily Covid-19 updates on the news, we all have a long journey ahead of us. Everyday, for a little while, I have made a conscious decision to step away from the negative and scary posts on social media (true or otherwise) . I’ve also stepped back from mindless scrolling on my phone – I realised it was making me anxious and I am not normally a very anxious person.

I must have hope that we’ll get to the end of this and be okay; otherwise my world will get smaller and darker and more isolated. Many of us are going to find ourselves isolated, although “cocooning” sounds much safer and more comforting.  It goes to show how the words we use and hear can make us fearful or give us hope.

I am going to end this piece with some ways to be kinder to ourselves during this uncertain time:

  1. Take advice and information from reputable sources – messages forwarded from “a friend of a guy I know” should be avoided.
  2. Switch off from the 24/7 information when you can. Spend some time doing something away from the internet or news feeds. I’ve spent more time cooking meals over the last few days than I have in the last few months.
  3. If you are stuck at home the days can feel very long. I’ve started trying to find some nice things to occupy my time. Those books I bought but never got around to reading are finally being dusted off.
  4. Get some fresh air and sunlight – even if you have to self-isolate, stand in your back yard or on your balcony, or open your windows. I’ve found that a few deep breaths can help settle my mind.
  5. Try to find something funny to watch or listen to. Laughter is a wonderful way to lift your spirits and improve your mood.
  6. Remember you are loved. Your family and friends and your wider community all want you to be well and to keep healthy.  Keep in touch with loved ones via phone or video calls or text messages. Ask for help, accept offers made by others.
  7. Finally, for my MS friends – this is where we come into our own. We have had to stay indoors, scrub our hands, avoid infections, face disappointment at missing social events for years – we’ve got this!
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