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He Said/She Said: Bad MS Days

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Thursday April 11 2019 11:00 AM

This week we get to ‘listen in’ on a conversation between Grace Kavanagh and Keith Byrne. They’re talking about the good days and the bad days, the ups and downs of life with MS and life in general. 

What does a bad day feel like to you?

Grace:
Everyone’s MS is different and so is everyone’s version of ‘bad’ days. I have been diagnosed with MS for 13 years now. Over that time my version of ‘bad’ days has changed as my MS has progressed. To be honest at this stage I don’t even rate days as good or bad, I just go with it and do what I can.

I think that there are different kinds of ‘bad’ days. There are days where my body just won’t cooperate and I barely have the energy to blink. For me there is not a huge difference between physically good and bad days as I always struggle with fatigue and mobility so I try not to focus too much on my physicality. The worst for me are days when I am emotionally exhausted or just cannot motivate myself to engage with the world around me.

Keith:
Everyday there are a couple of hours where I just have to zone out. I’m unapproachable, I’m cranky and I can barely string a sentence together. My brain feels like it needs to shut down and reload. This is something I’ve come to accept rather than fight against. I don’t know if accepting fatigue is the right approach to take, however, it holds me in good stead if I manage to have an impromptu nap every other evening. I see my brain as a battery and time-out helps it re-energise albeit briefly.

What works for you on bad days?

Grace:
I’ve had a lot of therapy and mindfulness practice to try deal with the negative spiral that can go on in your head when things are not going too well. I have a number of “distraction techniques” (fancy way of saying I bury my head in the sand for a bit) that take my mind off the negatives. For example I spend time with my cat, he always makes me laugh. I enjoy mindful colouring and play games on my phone.

I can vastly improve a bad day by accepting my limitations and adjusting my plans for the day accordingly. That may well mean watching TV in bed but giving myself permission to do so means I’m not feeling guilty all day on top of everything else.

Now that is an easy option for me since I don’t have a job to go to or children to look after but Keith you have both of these - how do you cope when downing tools isn’t an option?

Keith:
I have to admit it’s rare that I can take time out to look after myself as I know I should when having a ‘bad’ day. Having a full-time job and a toddler at home doesn’t really allow for it. I’ve tried therapy and mindfulness too. I did find them beneficial but when fatigue really kicked in, I lost interest. Although I know it’s not possible for many people with MS, keeping myself as active as possible is the best way I find to tackle the bad days. The high I get from running really stands to me. It helps me think straight and de-stress. I’m at a stage in my life where stress is unavoidable but the endorphins triggered by running at least make it manageable. Easier said than done particularly when fatigue and multiple other symptoms have you wiped, however, I would recommend anything that gets the brain pumping as a way to tackle the bad days. 

Asking for help

Grace:
We are both lucky enough to have understanding partners who pick up the slack for us when we are struggling. Do you find it difficult to ask for help?

Keith:
In some ways I’m a very stereotypical man and don’t like asking for directions. When we’re driving somewhere I’m unfamiliar with I will always rely on my wife to have Google Maps open and direct the way without asking her directly. It’s the same with asking for help. Sometimes I need a steer in the right direction and she’s the one who provides it. Yet I would never say directly “I need help” even when it’s blatantly obvious! It is important that someone close to you has an understanding of how you are affected by MS especially as we are all affected by it in so many different ways. 

Advice/Suggestions:

Grace:

  • I find a gratitude diary can be helpful when I’m in a dark mood. Writing down 3 things I am grateful for reminds me that there are good things in my life.
  • Talking to someone who understands and has MS has been a big help to me; we can empathise with each other and maybe even laugh when brain fog hits and we can’t remember what we were talking about.
  • Listen to upbeat music or watch funny videos on the internet.
  • I read a blog somewhere that suggested having an emergency ‘bad’ day kit. You could put in a copy of your favourite book, chocolate or some other treat, perhaps your favourite movie.
  • If at all possible get out of bed and get dressed. Try to achieve one small thing in the day, it might make you feel better.

What would you suggest as a survival kit for bad days Keith?

Keith:
Some really good points Grace. I also find writing very therapeutic and the best possible remedy for brain fog. The thesaurus is my friend when I know what I want to say but just can’t think of the word – this happens easily one hundred times a day. Also, being kind to yourself is very important especially when we’re having a tough time of it. I’d definitely have a playlist of my favourite songs for my ‘bad’ day kit and maybe a YouTube playlist of historical sporting moments. Actually, on that note, I think I’ll watch Ireland beat Italy in the USA ’94 World Cup. I wonder if Paul McGrath still has Roberto Baggio in his pocket :) 

Author: Grace Kavanagh and Keith Byrne

Comments

Declan

Thursday April 11 2019 12:40

Great blog you two

Trevis

Thursday April 11 2019 21:57

I am really enjoying this 'He Said/She Said' series. You've pointed out important differences as well as similarities in the way the two genders deal with MS. Fair Play for your honesty. Well Done! Cheers

Joan

Friday April 12 2019 16:48

What a brilliant blog! I really enjoyed the dynamic between you both. Well done Keith and Grace. I was going to drive to the shops but you have inspired me to get some air and walk- even if I take forever!

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