Last reply 3 months ago
We've got this…

It struck me this weekend that people with MS are actually probably particularly well equipped to deal with the coronavirus outbreak. Compared to the rest of the population, we are all used to:
– Being stuck in limbo, nobody can ever tell us how long something will last and if it will be permanent, temporary, relapsing remitting or progressive.
– Living with uncertainty: We all know only too well that nobody can predict what the future holds for us and that we have to plan as best we can, but always live in the present.
– Listening to our bodies and struggling to decide whether our latest symptom is something to be worried about or not.
– Trying to interpret complicated, evolving and occasionally conflicting medical advice.
– Appreciating that there is general guidance but we are all different individuals and each have to make choices based on our personal circumstances and our own assessment of the risks.
– Self isolating/adopting good hygiene practices to avoid infection, usually depending on our choice of DMT and how long ago it was and how we are feeling.
– Adapting and working around constraints and not always being able to go out and do everything we want, when we want.
– Sharing information and best practices at a local and a global level, so we often know as much or even more than the “experts”.
– Acknowledging that bad things outside our control will happen and supporting each other to get through the tough times.
– Belonging to a community that does not rely on regular face to face contact.
– Maintaining our sense of humour.
– Building resilience.
Coronavirus? Everything is relative. MS warriors, keep calm, I think it’s safe to say we’ve got this one.

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4 months ago

It is rather, good post πŸ™‚

4 months ago

So true….
Better to say we can Handle this….
I really don’t want to get this one πŸ₯Ί
Just being facetiousπŸ˜„

4 months ago

@highlander, yup, fair enough, good point well made!

4 months ago

Love this 😍😍😍

4 months ago

I LOVE this! πŸ™‚

4 months ago

nice words x
im not worried about corona virus not bec im a super man but bec as u said what was meant to happen will happen so why ruining my mood with worries
im on gilenya and since im on it my job gave me two weeks of work
so i had fun with relatives i invited them ti my home we done bbq and sweeties

living my life with a peaceful mind is all that matter
i wash my hands sometimes wear mask when needed
i get cleaned 5 times a day to pray

what else can a person do
living thats what he can do but i did not leave home :)) but had fun in it more than ever

4 months ago

EXACTLY! I’m not freaking out like those around me because I deal with these CRAZY issues every day of my life!

4 months ago

Thank you @clare80 – I needed to read this. Brilliant post.

I’ve bookmarked and will be sure to refer back if things feel like they’re getting too much in the coming weeks.

Thank you

4 months ago

Lol well said ! Yes I never want to make a definate plan for future days out because I never know if my numb leg and foot will want to work..or if my muscles will let me stay on my feet. I don’t know if my pain will be ok to cope with on the day or if my fatigue will stay off long enough while I have coffee out somewhere and not want to slump across table too shattered even to be bothered to talk! So yes isolation is nothing new to us. And hey..look on bright side we know we are never going to be thst isolated..we all have each other on have chats and banter with. Stay safe. Carole. Xx

4 months ago

@clare80 This is EVERYTHING πŸ™Œ – thank you for the perspective! 😍

4 months ago

Great post. Well thought out and bang on. Thank you for sharing.

4 months ago

So right. I said at our Wobble (MSrs meet up) on Saturday that we MSrs probably stand less of a chance of catching COV-ID 19 as we already practice the guidelines laid down

4 months ago

Bang on pointπŸ€”

4 months ago

πŸ™ well said.
Keep strong folks x

4 months ago

@clare80 fantastic post, made me laugh and realise it is so true.
Stay safe guys

4 months ago

Spot on, brilliantly written. 😍
Ride these rough waves everyone, stay safe and as healthy as you can be. x✨x

4 months ago

Incredible post!! Amazing comparison – I love it @clare80!! Thanks for sharing.

Totally agree with all of this…

Stay safe, beautiful people xx

4 months ago

Oh my days! This is amazing! Now if only I can find a way to share it with the rest of the world!…
Stay safe everyone!

4 months ago

Thank you for putting this in writing so eloquently. Together we’ve got this x

4 months ago

Thanks for sharing, this really is one we are totally familiar with, the isolation thing isn’t such a shock to me like everyone else ! That doesn’t have M.S I mean!

Stay safe x

4 months ago

do you mind if i copy this post into my works intranet site?

well written and points well made.

4 months ago

I love this! Is there a way to share this? It’s written very well. πŸ’•

4 months ago

@clare80, beautifully put. Keep going, fellow warriors :-)……

4 months ago

@clare80 How everything is written correctly. My husband is worried, however I am calm 🧘. I survived my fear two years ago .πŸ™‚

4 months ago

@ Clare80 you nailed it writing this article!
My daughter said to me yesterday that I wouldn’t have a problem staying at home for 12 weeks and self isolating as she’s never known someone to be so comfortable just staying in! It’s obviously from all the months last year that I was relapsing and you get used to just being at home!!
My problem is my son age 20 meeting his friend to play tennis and thinking that it’s fine!!!

4 months ago

Brilliant post! Got to the end and nearly burst into tears 😊
You’re pointing out the things that we do everyday but don’t think about it.
Stay safe everyone. x

4 months ago

I love this! I am due to give a talk to Sunday Assembly London this Sunday. It was going to be about dealing with my MS diagnosis and using running to cope. And how three of us were planning to run the West Highland Way and raise money for over Easter.

Now it’s going to be about what I’ve learned about coping with uncertainty and adapting change through having MS.

4 months ago

All completely true @clare80 & wonderfully calming to read 😊 Thank you

4 months ago

This has been such a helpful post for me @clare80 trying to channel the positive energy! X

4 months ago

thank you @clare80 and all you others here on It’s good to know we’re here!

For me, just today, whilst at home with my two sons and learning how this home ed’ing thing works, i thought i’m in a surprisingly good mood!
The sun helps lots of course, but i also realised i was at home with my children having a great time because i didn’t have any guilt about being somewhere else with them!

You parents out there know how it is at half term when there’s a science fair or skate park thing or just a gathering – there’s the worry leading-up to it; will i have enough energy, the stress on the day, the brave face, the getting home before you’re just too tired to even gather-up children! etc etc!

Today i couldn’t be anywhere and that wasn’t because MS had decided that for me. For us, my children are dictated by it too sometimes.
Not that any of us want Coronavirus in the world but hopefully this pandemic might remind me that the children and me have a great day at home too, who ever decides it!
Long may that sun shine! Get out in the garden or lean out a window with sleeves pushed up, palms up and get your Vit D guys!
love to all xxx

4 months ago

I love this and no I do not fear have been living like this for 23 yeas. Well written and said. Must copy this

4 months ago

Love this post!!! It made me realize just how right you are. Thank you for making me feel a little better about this unprecedented situation. Love to all!

4 months ago

I’m OK, I’ve never eaten bats πŸ˜‰

4 months ago

Yes, I love this. I actually feel under less pressure to “conform” . I can stay at home and enjoy the situation. People say ‘Keep busy’ or “occupy your time’ I have no trouble doing that plus when fatigue takes over I can stop anytime. Time to smell the roses or just enjoy them and the important ones in our lives. Take care everyone and love to all.

4 months ago

@claire80 Yes! Yes! Yes! Love this!

4 months ago

Very well said and written. πŸ‘πŸ»

4 months ago

Preach!!, u get used to staying in ya right. I did some washing this morning bits with the kids I’m now resting. Id be doing school run rushing around here and there with work.

Our bodies need calm

4 months ago

@clair80. Wonderful! So good to know that others have same symptoms as me. Pp. Even though nothing will make it better. Still don’t understand why just putting my hands on something puts strength in my legs! Wall/furniture walking. We can use what we’ve got. I do gardening and vacuuming on my knees. Stay as independent as possible. I try to just laugh when seen crawling round the garden as might not be able to do it tomorrow! Or ever:(.

4 months ago

Love and kindness to you all, and you right, we are used to this isolation over a long period, and we are usually good at getting through/ over demanding, scary times. I’d just like to say,keep strong, safe and dont loose your MS sense of humour. Please share with each other your high’s and low’s and dont be afraid to ask for help when you need it and give it when you can.
Metta to you all!

Rocky Ranger πŸ€—

4 months ago

@richard, @fuglymanorart, if its helpful, this post has been turned in a blog post which is easily shareable here:

4 months ago

Wow, thank you everyone for the amazing feedback. Am so pleased this post resonated with other people.

@debbi_smith_dawson, @richard, @fuglymanorart, of course am happy for you to share. @amyshift has cleverly turned it into a blog post for you, see her comment above.

@fingersandtoes, good luck for your talk on Sunday, sounds like it will be awesome!

@is0bel, glad you had a great day at home with the kids, without feeling pressure from other people to do things. Hope you enjoy this precious time together.

We can’t control the current situation, but we can choose how we react to it. 🌈

4 months ago

Awesome thread, I was wondering about this recently as changes in work patterns (permanent working from home) have helped with MS fatigue. My work colleagues have never had to deal with isolation and uncertainty while MSers have definitely adapted over time. Cooler sunny weather has helped too.

4 months ago

Absolutely fantastic piece – sums it all up. I wanted to know if it was possible if I could chat to you/interview you – as I wanted to write a piece for the Barts MS blog – about this way of MSers looking at COVID-19.
I write regularly for them – and would love to get your background re – what made you write this…etc
Would you be at all interested?

4 months ago

Thanks @longboat, will reply privately.

3 months ago


3 months ago

So very true and well written. Here is a link to an article I wrote on this topic….

3 months ago

@clare80 only just seen your post – BRILLIANT
πŸ˜ŠπŸ‘πŸ» Friends ask how I’m coping I say β€˜it’s not much different from normal’. For the very reasons you so eloquently state. Spot bloody on!

3 months ago

Thanks @merfield, glad you liked the post!

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