Speakeasy

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Last reply 1 year 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 1 year 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 2 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 1 hour ago
Undiagnosed at the moment

Hi 🙂 I was diagnosed with Fibro 12 years ago. Nearly 6 months ago I woke up unable to walk, my legs and back just wouldn’t hold up. My hands were numb at times with pins and needles, head felt empty or weird – this had been preceded by months of vertigo, pain, overheating bouts through summer etc. For years I had had right side issues, my head numb on that side, foot dragging, stiffness in face, shoulder and leg. I had a brain scan done which showed demyelination and a need for MRI’s and possibly a spinal tap after that. I have been put on a waiting list which is 7 months long (NZ health system!) so still waiting 🙁 It was 3 months before I could walk unaided a little and the only help I have been given is a wheelchair, walker and meds for palsy/pain. I am soooo frustrated and miserable, this group popped up on my Facebook newsfeed so here I am. I can walk a little distance now and drive so have improved but have worked hard to get this far. I guess because I still have no answers if others have experienced this but a quick look through stories shows they have. Thank you 🙂

Last reply 1 hour ago
Peer support

Hi guys,
I am the only one in my whole family and friendship group to be diagnosed with a condition that is long term/degenerative, and I’m really struggling with support from them.

I don’t have any physical/physiological symptoms as of yet (thank God) but I struggle a lot with fatigue. I am sleepy all of the time, and then I will have sudden bouts of insomnia where I don’t sleep for nearly 3 days and then I crash again. I find people are getting very annoyed with me when I agree to plans and have to cancel at the last minute because I am so tired that I’m sleeping for 16 hours of the day.

I am aware it isn’t their fault that they don’t understand, because why would they? But at the same time it’s very difficult when I am trying to explain how I feel and they just brush it off as if it isn’t important or something I can “get over”. Has anyone else struggled with this?

Last reply 5 hours ago
Dizziness and migraine

Hi hope you are all keeping well,I don’t really put posts up I’m the type of person to keep all in.But I do struggle I have ms for 6 years now and I have been up and down,these past couple of weeks hadn’t been great I had a trapped nerve in my neck which was very painful and I couldn’t move my left arm,and with that it made my symptoms flair up I experience vertigo and light heads. I’ve had a migraine for a week now and it’s all pretty much getting me as all I want is my bed but can’t as my head wont shut down..sorry for the long rant…😞

Last reply 5 hours ago
Bloody Staysure

Wife called Staysure Travel Insurance to inform them that me mobility has decreased and I sometimes use a mobility scooter for longer distances (how efficient). Now my Neuro retired and my new Neuro asked for an MRI as it had been 3.5 years although with PPMS it’s not usual to get routine MRI’s. Now Staysure want to know the results of the MRI taken 2weeks ago and may refuse or cover MS related claims in future. FFS Staysure get a grip

Last reply 5 hours ago
Hello!

I’m new here, I’m 30 and have had MS for ten years, it started off as aggressive RRMS, now SPMS. I have been unable to work for the past 5 years. My friends are meeting the usual milestones in life, promotions, getting married, having babies, I’m just stuck in the same spot. I can’t help but feel life is just passing me by.

Last reply 7 hours ago
cladribine/mavenclad experiences pls!

hi!

i completed my first year of treatment in jan + feb this year and sadly, i’m not having the best experience.

i’m keen to hear from anyone else who has been on cladribine and what sort of side effects you had.

thank you!

lauren

Last reply 7 hours ago
MS 'Hug' sounds so friendly (not)

Ok after throwing out two T-Shirts yesterday as they have ‘shrunk’, I have now looked up this MS Hug thing and realised that I have indeed been hugged. I also threw out 2 bras and am veiwing the car seat belt with suspicion as it must be ‘in on it’. B’stard , what next ??
Anyone else been wearing a too tight T-shirt ? So uncomfortable even being 2 stone underweight my clothes are being vetted prior to wearing them and the ‘Corset’ is in the bin.
Any views on this latest assault ?
Have an ok Sunday x

Last reply 8 hours ago
Thinking out loud sorry.

Well it has been a while since I have been around. Has been a rough go around here the last while. Things went from bad to worse so fast. Allow me too explain.

First off back in Nov of last year I had a pretty bad relapse (or at least pretty bad for me anyway. Probably nothing compared to some of you though) then at the same time got a prostitus issue. Which of course made everything that much worse. On the bright side at least that was resolved in a short time. As far as the after affects of the relapse… Well not all of them have went away.

Then shortly after and I mean within the week my with had to take a month and a half off work due to being completely stressed out over everything. Which put us once again in some serious financial issues. Which in turn stressed me out on top of everything else that was going on with me. I knew it wasn’t her fault I know what Call Centres are like. But in the end got through it. Well sort of. Still fighting to get bills back under control. But we are close.

Then in the mix all that it was Christmas. The worry of how we were going to afford to give three kids the kind of Christmas they are used too. But again we managed to pull it off.

Then the New Year rolled in and as far as my wife and I were concerned we were doing ok again and things financially started to get a bit better and things were running a bit more smoothly. Or so we thought.

Come May my poor daughter started acting out really bad. Not sleeping at night, having trouble getting to sleep, her attitude changed, broke down completely at the smallest things, was complaining about an upset stomach all the time. It was like a switch was flipped and my baby girl was not the same anymore.

So we called the Dr to get her checked out and make sure everything was ok. Cause it seemed to be a lactose issue to us. As her stomach get really bad shortly after dinner. So brought her in and at the time the Dr agreed with us and suggested to cut out all dairy in her diet for a week and see what happens. So off we go and do this. Needless to say didn’t seem to make a difference. If anything things just kept getting worse.

Her attitude towards us and her brothers got worse. She has and still talks or should I say yells at all of us all the time. Still not able to sleep properly or get to sleep. Gets upset extremely easy. Saying things that an 8 year old should never say. A completely different little girl. So took her back to the Dr. They ran a bunch more tests and stuff. Ruled out anything physical wrong.

By this point I am completely beside myself because I feel like I am loosing at this parenting thing fast. I don’t know what is wrong with my baby girl and don’t know how to fix it.

So the Dr suggested to get ahold of our local Children’s Mental Health Organization. So we did that and had our first meeting with them just last week finally. After talking with this lady a lot of what she has said so far matches up with what we have been seeing. My poor little girl is stressed out over everything that is and has been going on and don’t know how to process it properly.

We are now at the end of July and well I don’t even know anymore. I feel like I am walking or rather stumbling from one shit storm to the next. Always waiting on that next shoe to drop.

Sorry for anyone who has mad it this far. It isn’t very interesting. I just had to put it down on paper so to say. Not looking for an sympathy or empathy. It is what it is. Just the cards I have been dealt. Can only play with what I have.

They (whoever they are that is) say the good Lord never gives you more then you can handle. Well personally I think I have to be getting maxed out!!!! Can someone else be it for a little while please. I need a break.

Once again sorry for the blabbering on and on about my issues. I know we all have them and wish that we didn’t on a regular basis. I am just ranting a bit.

Anyway hope all that read this through are having a good day on which ever particular day you read this. Wishing you all prosperity and good fortune.

And always remember:

Happiness can always be found. Even in the darkest of times. If one only remembers to turn on the light.

Good day to you all.

Last reply 8 hours ago
I’m new here

Hello I got diagnosed with MS last year I’ve currently just come out of hospital from having my third relapse I’ve had weakness & severe pins and needles in the entire bottom half of my body. The IV steroids have helped get the strength back in my legs but the pins & needles are still there & im on week 3 with them. Can some one please give me some positivity & tell me they will get better & they won’t be like this for ever. I have 2 young children ( just recently had a baby ) and I’m scared they won’t improve just like my eye sight.

Last reply 11 hours ago
Angie

I’m new here on this site, live in Weardale Co Durham where for some reason there is 6 times the national average of MS, I was diagnosed 7 years ago but have had it for decades, I just thought I was clumsy and as I also have Chrohns, a lot of symptoms were missed. I trip over nothing, have blurred vision, have either concrete legs or jelly legs, terrible coordination and balance, this is just the tip of the iceberg,

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