If there’s one thing I know about the MS community, is that when the chips are down, we all pull together.
And never more so than now.
If I’m honest, it’s strange to be doling out advice to normally-healthy people stuck at home, climbing the walls.
Yup, I’m the one now doing the ‘sad face tilt’, murmuring gentle ‘hmm hmm’s’ and suggesting ways to keep engaged and less isolated. Except now, it’s all of us in the same boat, an entire country, a huge swathe of the world.
It’s heartening to see a veritable outpouring of resources previously inaccessible to us – working and studying from home, celebrities bringing us everything from cello lessons to live work-outs and dreadful song compilations – Gal Gadot, I’m looking at you.
New programmes devised and on our telly within days. Tips and hints for staying at home are abundant, a flood of all the resources we have campaigned for over the years. Can’t get to the theatre or ballet? It’ll come to you. Same for the museums of the world, the cinema, online learning where you can pick up wood-whittling amongst many other things. Newspapers are now full of great ideas for lessening the isolation, and not before time.
Are we all disabled now, in some way?
Opinion columns are full of shocked and stunned op-ed writers aghast at being without a cleaner, a playgroup, a holiday, their Boden order. Ok. I feel your pain, although somewhat ironically.
Back to MS, and it’s awe-inspiring to see how our community has come together to keep us informed. From the MS Society, MS Trust and Shift-MS, to the Bart’s Blog, we are kept right up to date. And this is despite a truly dreadful time for charities.
I had my shielding letter on Friday, followed by a letter from my MS team yesterday. I feel cared for and protected. However, my landlord may not feel the same way, which is why I have to continue to work, with only one other person, the long-suffering Boss, as long as I can.
It’s not ideal. I miss my son terribly, and my partner. Me and The Boss are looking at each other and thinking, ‘really?’ Are we the two people we’re going to see for the next few months? I feel more sorry for him, to be honest.
I listen to his Sky TV Planner list, he listens to me wittering on about medical humanities. He wants a Baby Yoda for his birthday and I don’t quite know what to say, always aware that we are in this for the long haul, Baby Yoda or not.
I’ve read on other ‘normal people’ blogs how they are keeping busy and some have even written that they are going ‘stir crazy’ just after a week. My husband also moaned at the start of this self-isolation that he will be bored staying at home. I reminded him, but I don’t think it hit home, that this isolation has been my life, nay existence, for 13 years now. Just another day for me.
Well said! I know exactly what you mean – so many people have said to me recently how they now understand how I’ve felt being at home for weeks/months with relapses or recovering from treatment. It’s a strange feeling being mostly at home alone, but knowing that most of the world is too! X
I know relapsing/remitting is unpredictable and can strike at any time which lays you up for days/weeks at a time and it must be so difficult arranging any social time with family and friends.
My MS is SP which has got worse over the years, so much that my balance has totally gone. I can’t stand without support and although I have a wheelchair and an outside walker I still can’t leave my house as the road I live on has a steep incline and also our drive. I can’t even wheel myself to the footpath as it would be dangerous going down the drive. One consolation though is that we’d never be flooded, lol. My isolation is permanent unless I go out in the car.
That sounds incredibly difficult for you Joan 🙁 X
so true, welcome to my world
Yup! X
It’s quite amazing isn’t it! I’ve written a blog which is being published online all over the place on my professional institute’s webpages and people seemed genuinely surprised that we seem to have access to all this online information. It’s amazing how much this has grown in just a a few days. You are quite right, the government should have sought our assistance much sooner!
We’d be the perfect focus group!! I only hope that when this dreadful time is over, we don’t lose all of these amazing resources. X
That is so true, it is a perfect introduction to our every day for years. Welcome to my shrinking world x
Yup! I’m constantly surprised at just how small my world is now, compared to before. Weirdly, through this, it now seems to be opening up a little, as we’re all connecting in so many ways! X
Hi Barbara,
I’m in the process of writing a blog post for MS awareness week and want to share some inspirational posts from bloggers with MS. I‘ve seen you on Life Effects, as I’m a fellow contributor so I wanted to share one of your posts. This seems ideal for sharing in MS Awareness Week. I’m sharing a link to it and I’ll drop your site link too.
I have IIH, a rare brain disease, which share many of the symptoms and Chronic Migraine. I obviously cannot understand what you go through but I want to show my support.
I love to hear how the MS community has come together at this time and relate to your comment on ‘doling out advice to normally-healthy people stuck at home, climbing the walls.’ I feel like I’ve been training for lockdown for the last 6 years so it does feel very strange that everyone is experiencing a glimpse at our lifestyle, stuck at home.
It is heartening to see so many resources being shared that I’d love to access all the time. This post has definitely made me think, thank you!
If you want to check out my post please pop by my website https://www.strengthoftears.com in the week. I don’t think my MS awareness week blog will be ready for tomorrow as I’d hoped but I’m getting it up as soon as I can.
Stay safe,
Laura
Hi Laura,
Thank you so much and really lovely to hear from you!
Your blog is great, and I’m in awe of your mentoring skills :-). Fab to meet a fellow Life Effects contributor too.
I hope you guys are all coping ok with the lockdown. Such strange times we’re living in! I had wonderful plans to take up painting, cook exotic dishes, learn how to mosaic small tables, etc. But all I seem to be doing is terror-scrolling and watching random films on telly…
Look after yourselves, Bxx
Hi there,
Thank you so much for such a lovely reply. I’m thrilled that you like what I’m doing as I’m very excited to be at the start of this journey. I’ve read quite a lot of your posts on Life Effects and am in awe of all you achieve!
I’m not surprised that you’re watching lots of random films. I had to put a limit on my access to the news and social media as it was all too much. It’s so tempting just to look though. Other than that we’re doing okay, although my eldest is in his GCSE year so it’s a bit strange.
Thank you again for your encouraging words,
Take care! Laura
I totally agree – I’m definitely going to put a cap on the news! It can be pretty overwhelming.
Must be hard for all the kids whose school lives have been interrupted so suddenly. I really hope they can all get back on track soon.
Take it easy, and hope you’ve got some of the glorious sunshine this week. Xx
Guess we are all dealing with many of the same issues and very thankful for finding these articles and comments! God Bless and keep trying to help each other!!
Totally agree! We’re definitely all in this together. Stay safe X