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What gets you through life living with MS

Hi all, I hope you all are well. I haven’t really been active on the forum for a while.

Today I found some time to log on and I thought I would post a message to you all.

So just a little a bit about me and my MS journey. I’m 32 years young and I am a cognitive behavioural psychotherapist.

I was diagnosed in 2019. I believe my first relapse was before my diagnosis in June 2018. 2019 I had two more relapses and since I’ve been ok. MRI shows that my MS is active and I’m currently waiting to start Tecfidera. Tried copaxone in the past which I hated and quit after 5 weeks of trying it.

So as you know, MS is our biggest enemy and we can go through ups and downs through our battle with MS. Living with MS brings a lot of uncertainty for lots of people. Worry about the future, worry about our wellbeing and health and the impact this will have on our life. Ruminating on what life was like in the past and comparing it to what it is right now for you.

I would often get reassurance from loved ones but this just offered me short term relief. So what got me through the dark times of my relapses was my closeness to religion and my reliance on God.

Going through a relapse is not a nice experience. Sometimes it can really get us down. What gets you through a difficult relapse?

Thanks in advance for reading my post and for any replies.

Lab

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What has got me through in the past? The love and support of those around me primarily. And also hope: even daft against-bad-odds hope that all would be OK sort of. Plus, with experience, memory that relapses do normally get a bit better even if they do not heal entirely. And that has been the case with me so far - 20+ years.

I’m glad you’re getting started on Tecfidera.

Mostly just the belief that it’s all temporary and will get better, at least as “better” as MS ever does. I’m usually able to see the glass half full, so when I’m struggling I focus on how good I’ve had it and what I like about my life now.

Hi Lab
Like you, it’s reliance on God that’s core to how I live. Trusting that, no matter how hard things may be, He carries me, He knows everything I need and will help me to do whatever I need to do. He’s managed to bring good out of this whole thing, and that gives me a sure hope
Dan

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Hmmm Sheer stubbornness, mostly… “I will NOT let this thing get the better of me!” I agree that coping with the uncertainty is a bummer… so I just try to take one day at a time, and not think too much about what might happen - odds are it probably won’t, and I’ll have wrecked my own wellbeing and half scared myself to death by fretting about it. On the mental side… I have no religious beliefs (but if other people do and find it helps, good on them…). Maya Angelou had it about right - “hope for the best and prepare for the worst”.

What gets me through?
From day one I’ve tried to ‘ignore’ and give zero credence to what is (or is not) happening and, after working out an alternative ‘way’ to do whatever I had wanted/needed to do, had just ‘got on with it’.
That way I can always tell myself, and my (MS) enemy, that I’d beaten the challenge, again… and it (my MS) hadn’t won, AGAIN.
Be well, Abbey xx

We all have different coping mechanisms.

  1. I for one, have no interest in God.
  2. Denial doesn’t work either. Honesty is better, most of all with yourself…
  3. …and your family and closest friends, You need them!
  4. Tackling MS is counter-intuitive because we have to discard prior conditioning: it’s not like an injury or illness that you can recover from.
  5. Acknowledge that one’s fight is a plateau or damage limitation, not repair
  6. Set challenges that you CAN win. Accept reducing capability and resist it when you can. Don’t accept help if it’s something you can still do because next time a task needs doing, it may be beyond you.
  7. Contrary to #4, work on the small wins: manage weight, exercise, strength & CV conditioning to keep your body in its optimum condition to fight the big one.
  8. Positive mental attitude.

Interesting that the original post comes from a CBT. I guess you must be sick of “physician heal thyself” comments! Glad that you’ve joined a group like this: you aren’t afraid to seek help from others, whilst probably able to help others on the group too.

Graeme