Speakeasy

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Last reply 8 months ago
Positivity thread!

Hi everyone,

I know that it just isn’t possible to stay positive all the time in the face of MS, and we shouldn’t be expected to, sometimes it’s tough and we just need to let ourselves feel how we do in that moment. BUT I would really love it if from time to time we could all share something that we are proud of, or something that happened to make us feel good, even something small. For example, mine is that the other day I was feeling very run down and tired, but had planned to meet up with some friends that I hadn’t seen in some time for a “paint night” where they teach you to do a simple painting all together. I didn’t think I could do it, but I wanted to try and pushed myself to get out and ended up having a really nice time, and even thought I was exhausted when I got home, I was so glad I tried!

Is there anything you can share that made you feel proud, or positive in some way?

Last reply 2 years ago
Community spirit

Howdy all,

Just a quick reminder that if you ever receive any ‘dodgy’ messages or experience anything that concerns you, please drop me or @stumbler a private message. You can email me at [email protected] too.

House rules can be found here – https://shift.ms/house-rules – if you ever want to check what goes and what’s off limits.

We want to make sure the community remains a safe space but we rely on you guys to keep us posted about any unwanted activity so do get in touch to run anything past us.

Cheers,
Sarah

Last reply 3 years ago
MS Hacks: Next topic?

HI everyone. It’s been a long time, but MS Hacks is back. This time, I’d like you all to tell me what you would like to see as the next topic.

for those of you who don’t know it, this feature is a way for us to share tips and lifehacks that we actually use in our own lives to make living with MS that little bit more manageable. So far, we’ve looked at dealing with the Summer heat, fatigue management, and working around cognitive changes. Which topic do you think could be most beneficial for you, right now?

xdee

Last reply 49 mins ago
Humour 29

Three couples are trying to get married at the same church. There is a young couple, a middle-aged couple, and an elderly couple. The three couples meet with the priest and discuss when they can get married.

“If you wish to get married in my church, you must all go one month without having sex,” says the priest.

One month later the three couples return to the church and talk to the priest. He then asks the elderly couple, “Have you completed the month with sex?”

“Yes we have, it was easy,” replies the elderly couple.

“How about you?” He asks the middle-aged couple.

“It was hard, but we didn’t have sex for the whole month,” they respond.

“And how about you two?” He asks the young couple.

“No we couldn’t do it,” responds the boyfriend.

“Tell me why,” says the priest.

“Well my girlfriend had a can of corn in her hand and she accidentally dropped it. She bent over to pick it up and that’s when it happened.”

The priest then tells them, “You’re not welcome in my church.”

“We’re not welcome in the supermarket either,” says the boyfriend.

Last reply 2 hours ago
How do you know if its optic neuritis?

Hi

I have RRMS but I’ve never had optic neuritis but since Monday vision has been blurry in my right eye and I’ve had a weird headache behind my right eye. The kind thats fine if I keep my head still but if I bend down it really hurts. I’ve been keeping the headache at bay with paracetamol 3 times a day and I can cope with the blurry vision day to day but not so much at work. I work in IT and am struggling to with focusing on my screen. Its like there is a blurry mesh over my eyes, like I have a load of gunk in them. I work part-time so its not too bad at the moment. I’ve been for an eye test and they said my eyes are slightly short-sighted but not bad enough to need glasses and they wouldn’t help me working with computers anyway. I didn’t mention MS to the opticions (it was Specsavers… and a bit conveyer-belt like).

What do you think? Should I just call my MS nurse or am I being paranoid?

Last reply 3 hours ago
Change of advice for shielded

Hi,
I’m just wondering what other people in the UK think about the change of advice for the vulnerable from tomorrow.
It was only Thursday that it was too early to alter the guidelines for the vulnerable.
But now from tomorrow we can go out as long as we practice social distancing.
What’s changed in the days since Thursday ?
I will be pleased to get out but still feel very unsure though.

Last reply 4 hours ago
Has anyone had COVID-19 (yet?)

I’d like to hear first or at most second hand an account of what it’s like for a PwMS to go through COVID.

I’m surprised and a bit concerned that I’ve not seen one here yet. Either we’re very good at shielding, or we tend to die of COVID, or both. Or it’s just a quirk of stats, and the rate of infection is still low enough that a medium to small sized community, particularly if self selecting for protection, wouldn’t have at least one sample.

After all in all my (admittedly small) social network only know two people who’ve been affected. As in affected with symptoms distinct enough to be clear it’s the coronavirus, of course. That might be another factor.

But maybe there is such a person here? Any first or second hand knowledge of having MS and getting the coronavirus?

Last reply 4 hours ago
MS, Covid and Work

Hi, hoping for some advice – I have emailed my neurologist but waiting a while to hear back so thought I’d see what people on here think.
I work as a secondary school teacher. Have been teaching remotely but deciding about returning. This week there is a training day (staggered in small groups) then possible return of some students in small groups and a staff rota. My school are being very supportive of staff with health conditions so I do not need to go in, but honestly I do partly want to! But only if it seems safe. My school are taking every precaution using large classrooms with all windows open, cleaning, desks spaced 2m apart etc.
From many things I have read MS isn’t likely to affect getting covid more seriously than anyone else. However it is listed on the secondary risk list from the govt. But my symptoms are fairly mild and not had a relapse in a couple of years.
Would appreciate thoughts on this, thanks!

Last reply 6 hours ago
Getting my hopes up again
Last reply 7 hours ago
FAMPYRA

Hi All
I am being put forward to try FAMPYRA to see if it helps with my walking. Today my MS Nurse asked me if I was still taking LDN as she wasn’t sure if it would be ok with FAMPYRA. Does anybody have experience or know if it will be ok to take both together.

Last reply 13 hours ago
A short story

What is it like to have Multiple Sclerosis?

MS is a strange disease. It attacks you, from every angle, but some you cannot imagine. If you walked around in a space suit that gave you general MS symptoms you would miss a lot. Basically if you have MS you really should be living on a space station. To be human has passed your choice. Our doctors with poison rocks try to make us normal, to stop us to trancend.
Wiyj MS we can sti;; have emotion but no obligation- we talk to you out of our isolation as a brutalised new species. You can keep your body- we are in the processs of losing ours. You do not know this, but we are the whisper in the woods, the old people, before you came. The weight of this planet hurts us, we want to be free, let us go.

Last reply 15 hours ago
hearing loss

I’ve looked it up and apparently, it’s a rare effect of MS only 6%. And doctors prefer to say that is probably caused by another factor. I’ve just lost hearing in my second ear, the first went 12 years ago in very similar sudden onset.
I’m on steroids but I have to say this has really knocked all happiness out of me. I recovered very distorted low level hearing in my first ear and imagine I’ll recover some from my second ear but I’m still devastated.
Listening to music is one of the things I cling to to lift my mood and I share it with my kids. I feel like I’m being hollowed out. I guess the steroids are making me miserable as well.

I’m trying to be positive for my kids but I can’t stop crying. I’m thinking about the recoveries I’ve made from total numbness or sight loss to pretty good sight despite damage but hindsight is different to hope and I’m feeling pretty hopeless.

Last reply 18 hours ago
Ocrevus

Morning! I was due to start Ocrevus but this has been put on hold due to the current pandemic. I’m currently waiting to commence tysabri instead.
Just wondering if anyone else is in the same situation? I had been on Copaxone but the injections were leaving craters all over me and between the burning and then itching I just couldn’t cope!
Has anyone been able to start Ocrevus recently?

I’m based in Belfast N. Ireland.

Last reply 19 hours ago
Tysabri – few symptoms but new lesions

I was diagnosed in June 2019 having woken up with pins and needles in my hands in January. No previous symptoms. Pins and needles extended to whole body from chest down and I experienced MS hug a few times. After a couple of months things seemed more or less back to normal and although the pins and needles feeling in lower arms and hands persists it’s an inconvenience rather than painful. Scans in March showed two new lesions although I’m unaware of new symptoms and I feel fine. About to start on Tysabri (thankfully JCV negative at present) but feeling concerned as physically I feel fine. Has anyone had a similar experience and gone on to have treatment, especially Tysabri? Thanks for listening.

Last reply 23 hours ago
I'm on the struggle bus

Sorry in advance … I just need to vent a little and I thought this would be the right place. It’s nice to have a group of people that know what you’re going through. I’m seriously on the struggle bus. I’ve been deemed “high risk” for covid so I’ve been exiled from my home and banished to my nanna’s house (a little exaggeration) as my mum is a key worker and could bring the virus home pretty easily.

I’ve been away from my family for over 14 weeks. My nieces live with us and they’re like my kids (complex story) , I normally spend every single day with them and being apart from them is really difficult. My mum is my rock and I can’t even hug her. To top it all off my ms symptoms are going haywire with the heat and the stress, I’m having new issues with my vision and intense nerve pain near and around my eyes which isn’t great. My ms nurse told me she would talk to my consultant but guess what I’ve had radio silence ever since.
Thankyou for reading if you got this far and I’m sorry for unloading on every one.

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