Last reply 1 week ago
Hello All

I joined the MS Society forum a few days ago. I’ve opened a Twitter account and now I’m here. This is the most ‘social’ I’ve been in a decade.

I look forward to chatting with someone/anyone/everyone.

Cheerio,

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henrietta
1 week ago

@sereninthecity that sounds tough, really great that you’ve reached out here and on the MS Society forum. I hope you – and by extension your husband – will feel heard and supported. I certainly have since being diagnosed earlier this year. I’m on Twitter too , there are lots of lovely MS people to connect with there. Anyway just wanted to hello and welcome 🤗


Anonymous
1 week ago

@henrietta Thank you for taking the time to write. It really does mean the world to me. I’m glad you’ve found connections here. I look forward to being fortunate enough to find some too. Take care 🙂


vixen
1 week ago

Hi @sereninthecity, great that you’ve you’ve joined, the site is for partners and families too. Has the lockdown added to your sense of isolation? Think we can all identify with this. I can’t see from your profile which city you’re in. You might want to check the map function to see if there’s anyone ere in your area. To be honest, I’m on here a lot but I don’t use any other form of social media. Sounds like you’ve gone to town just recently! How is your husband doing health wise? All of us have found lockdown seems to have made our condition worse in some ways, not least because all check-ups/mri appointments were cancelled. Anyway, nice to meet yo! 🙂


watsoncraig
1 week ago

Hi @sereninthecity here you will always be heard and as @vixen says it is not just for those with MS but also friends, family and carers


itsmewithms
1 week ago

Welcome 😉 I’m sure you will get a lot of suggestions and support from this group- I have! Take care and glad to be in your expanding circle


Anonymous
1 week ago

@henrietta @vixen @watsoncraig @itsmewithms Thank you so much for being so welcoming! I won’t due FB as I’m sure Zuckerberg’s in league with the devil 👿 (not that anyone’s an 👼 out there in the eco-socio- digital-media-sphere). Twitter’s a ‘lil on the melon-twisting side, especially as I got a little carried away & followed anyone using #s that matched mine or who had particular snazzy profile jazz (‘kid in a candy store’ reaction).
Lockdown’s been a bi*ch! My husband’s knees have been killing him. We’ve both put on weight. I WILL eventually run mine off. But he is struggling to walk. He has cut down on a lot of his meds. to see if that helps. There are so many contraindications & side-effects that it’s worth a shot. He says the pain has lessened over the past few days (he acknowledges this may be a placebo effect, but who cares? There IS AN effect. We both believe it’s likely to be related).
In terms of isolation, my husband has really misses the football ⚽️. Whatever the weather we went to watch Cardiff City. We were just two more fans, no baggage. We knew the people around us. They were/are the closest connections we have. I miss the people and the noise and the voices more than the game. Hearing how people have struggled with 3 months isolation shocked me, especially as the ‘isolated people’ I heard in the radio talked about zoom calls and online Pilates classes etc. . That sounds like a social calendar to me. It helped us realise just how tough our life had become and helped us be a little more forgiving of our own shortcomings. We’ve spent everyday of the last ten years together without anyone else, no wonder we can rub each other up the wrong way. And both of us have to put on a brave face when we often want to cry ourselves, but the other is clearly suffering more and needs whatever we have to give.
All the talk about schools and universities is getting to me. I wasn’t able to get the most from my education and have never had a job. I don’t want to be reminded of what I missed. Schools=children and I’m hurting as I work on reconciling myself to the fact that I’ll miss out there too. Sorry 😐 to be such a downer, but this is the first time anybody has asked me about myself since I was 30. Wow 😮 I missed my 30s too. Well, it was all pretty awful before that too. It has been getting better over the past year….in fact things had improved so much we booked tickets to see Wales 🏴󠁧󠁢󠁷󠁬󠁳󠁿in the Euros for our belated honeymoon….you’ll not need to be told how that turned out!
My husband turned 60 and our wedding anniversary was during lockdown too ….OK, this is all true, but it sounds unbelievable. No wonder we’ve felt as though we were going mad.
My husband stopped Tysabri at the beginning of lockdown. He didn’t want to go to the hospital and didn’t feel he was benefitting anyway. He had his first MRI for a year on Sunday morning. The radiologist could not find a vein so it was not done with contrast. Anyway, I should go. I have to clean the bathroom before it’s declared a ‘site of special scientific interest’.
Thank you all again for listening/reading. 😷🙂


henrietta
1 week ago

@sereninthecity Oh no what a shame about the Euros! And a 60th and wedding anniversary during lockdown too… sounds as if you’re emerging a bit though, fingers crossed. Yes, Twitter is insane and annoying but can also be lovely and supportive, you just need to avoid or ignore the political opinions I reckon. Hope the bathroom cleaning went well 🙂


Anonymous
1 week ago

@henrietta ‘Emerging’ is the perfect word! The bathroom 🚽 (ha, there’s an emoji for that!) is glorious. If it wasn’t for Bluetooth headphones and unhealthily loud house music 🎧 our flat would be a health hazard.

I saw you’d been struggling with pain and symptoms. How are you doing today? I read that you were into Qi gong and open swimming 🏊‍♂️ do you find these help with pain and/or fatigue, or do they make you more tired?

Take care 🙂

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