So I thought I would introduce myself properly today. My name is Helen and I've just transitioned from RRMS to SPMS. I was absolutely terrified of this moment but it actually worked out quite well for me. I'm wondering what people's views/feelings are about SPMS in general?
I’ve always hated the whole “I have MS, but MS doesn’t have me” trope. It’s trite. There’s no cure, so MS has you. Sorry. Let’s change the narrative. How about “I have MS, but MS is NOT ME”?
I'm
@ChrisBrWriter
, and I'm doing a weekend takeover. I'm a nurse and writer from London. I was diagnosed with relapsing remitting MS in January 2020 (timing, huh?). Here's me and my poodle sidekick, Frida. I'll be tweeting throughout the weekend. Good to meet you all.
Let me introduce myself for those who haven’t ‘met’ me before. My name is Emma, I am 37 & have been diagnosed with MS for 13 yrs.I am a single mum to a 10yr old girl.I was medically retired as a primary school teacher last year & am currently readjusting to my new way of life 😃
Does anyone else find themselves bumping into stationary things - for me the stair banister, door frames and wall corners, often find random bruises which I don’t remember when or how I got them
#mslife
#clumsy
Really wish they had a medical solution for guilt. I hate having to say no to going to the park because my body is tired, I hate having to leave the cooking to my husband because I can't hold anything tight.
Sometimes the guilt is as overwhelming as the MS 🙄
#MS
#NoTwoTheSame
I had some good news last week. No evidence of disease activity on my latest MRI. Always good news 🎉 and that's 6 years now!
But also, does it not drive you mad having to explain to people that what it actually means is 'I still feel like shit, I'm just not getting shitter'?
After diagnosis, I went down a bit of a research rabbit hole for about a year. I am not sure how helpful this was in hindsight. However, I have consistently found the video and newsletter content from these guys invaluable in breaking down a wide range of topics that affect us:
This is Cooper. I’ve never had a dog but living with MS, I wanted some unconditional love. Do you have a four legged family member giving you some extra love love? 🐶🐱🐹🐰
When I was first diagnosed with
#MS
, my MS nurse suggested it could take years to come to terms with the diagnosis. I'm 6 yrs in and still don't think I fully get it. Anyone feel the same??
Evening everyone, how are you doing? This isn't my first rodeo but for those I've not connected with before, hi! I'm Jo DX just gone 4 years. RRMS, Lemtrada is doing it's thing and I live in Greater Manchester with my husband and dog!
🚨 BREAKING 🚨 How will
#coronavirus
impact people living with MS? 🦠
MS Reporter Dominic put questions from the community to Professor
@GavinGiovannoni
to get answers to your questions🎙️❔
Watch the interview here 👉
#COVID19
Awake, aching and buzzing. So tired. Will shut up about it shortly but so much
#teamwork
and ingenuity to get me round each obstacle. Started with ‘just’ my friends and upUgo colleagues. Then strangers, volunteers, everyone...
#toughmudder
#msawareness
#NoTwoTheSame
It's World MS Day! Unveiling our
#WhatMSLooksLike
video, a compilation of inspiring stories from our MS community. MS doesn't look any one way - let's celebrate diversity and challenge misconceptions 👉
Morning all 😋
Last night reminded me of my trip to LA several years ago.
You wouldn’t know it, but I had optic neuritis in this pic. It was blinding and epically painful. 👁
Anyone else suffered this or have a ‘non visible’ disability that can be difficult to understand?
Helllloo everyone! Welcome to my Twitter Takeover shift for Shift MS! A little bit about me: I’m a long term MSer who was diagnosed over 25 years ago aged 15. I have two kids and love coffee, sleep, cocktails, reading and crochet. Happy weekend!
Ocrivus is my saviour!
One day in hospital which I actually love as it’s a day of peace and quiet.
No relapses since starting just over a year ago.
How lucky are we to have our amazing
#nhs
💗
Without my husband,I would not have coped with my diagnosis. He is my wall and support. When I was diagnosed, I told my husband that if you leave,I will understand you. He took offense and said that at the wedding he had given me an oath "in grief and joy" and he would keep it.
"MS taught me to value things that I took for granted. Like holding a pen, walking, being awake past 9PM, etc.
"Handle MS with as much dark humor as possible. When I look at the tattoo under my collarbone, which says “invincible”.. I realise I really am." - Karolina, USA 🌍📍
I’ve just realised that it’s 6 weeks since I left the house due to
#lockdownuk
but as yet I’m not going stir crazy. If
#MS
has prepared me for anything it’s definitely this
Does anyone else have speech issues? When I’m really tired or very stressed (happens due to work) I can’t get words out and particular letters are super hard like M and N or all the words get stuck, please tell me I’m not alone
Since your MS diagnosis, have you found yourself apologizing more than usual (for things that shouldn’t require one)?
EX: “I’m sorry for moving so slow”; etc.
"I wish I started exercising earlier after my MS diagnosis!" It's like a downpayment on my future self. Keeping moving=keeping moving.💪 Do you agree? How do you keep fit with MS? 👇
SHOUT TO MY DOG, COOPER!! I got him because life and career ambitions and having
#MS
was a lot to deal with and I wanted something to give me unconditional love. Do you have a furry friend to help you through it all? Follow him on Instagram
@CoopTheFloof
🐶
Because a lot of people don't understand what MS actually is and how it feels, it's easy for people to say the wrong thing... 😩
As part of
#InvisibleDisabilitiesWeek
tell us what thing has someone said that's made your eyes roll? 👀
"Yeah, I get quite tired too..." 🙄
I had some MRI results back from November a few weeks ago (yes, I know...slow!)
I'm pleased to say that almost 5 years after my first round of Lemtrada, I have no evidence of disease activity. However, I still feel worse than that day.
How relatable is this for you?
Hi all! Excited to chat all things MS as I take over for the weekend. My name is Kylin and I am a proud member of Gen Z (with MS💁♀️). I’m based in Seattle but I’m on vacation in San Diego, CA, and I am soaking up all the Vitamin D possible! What are your weekend plans? 🧵
MS nurses play an integral role in many MS teams 👩⚕️ so we decided to put together A.M. as a thank you to MS nurses from the community🙏🎥
Watch A.M. here 👉
#AMnurses
I've attached a photo of multiple sclerosis symptoms (which I notice numbness is missing and probably my strongest symptom).
I was wondering if anybody has ever found an easy way to explain it to somebody with no idea what it is, I am never sure how to explain it succinctly.
How would you describe how MS fatigue feels?
#MultipleSclerosis
Happy MS Awareness Month 💚 Looking forward to seeing some awesome content from the community this month.
Click here to join our community, ran by MSers, for MSers:
Misunderstanding of MS is common, often family members, friends & others who we love just don't get it 😕🤷♀️
But how can we expect them to get it when we don't talk about MS?
Sidecar is a film exploring the pressures of advanced MS. Watch ➡️
Good evening everyone. My name is Cathy Howard and I am taking over
@shiftms
until Monday morning. I have secondary progressive MS and my daughter has Highly Active MS. I’m open to any MS questions you might have. I’ll try not to be boring
#MS
#MSLife
I’m talking about vices tonight. To drink or not to drink that is the question
I have cut down lots, not just because of MS but because I’m wild even without a drink but I do love sitting in the garden with a beer in the Summer
What’s your view? Any value in eliminating it?
New question. If you could get rid of 1 MS symptom, what would it be?
For me it would be weakness. I’d love to be able to walk again.Among other things.
Greetings from Washington, DC!
I am Rebecca, the stunning brunette in the chair below.
My 20th MS anniversary is April 2024.
My 15th anniversary with my favorite mobility aid (the guy, not the wheelchair) was in October.
Also want to give a shout out to all the Neuro Physical Therapists! My PT has helped me understand exactly what is wrong with my gait, why it's happening, and what we're going to do about it! What has PT done for you?
#NoTwoTheSame
#MS
#PT
#MultipleSclerosis
MS gives me some weird sensations: the army of ants with their feet dipped in chilli who march up and down my legs, the ghost spiders who wander across my face, the phantom tennis ball that hits the back of my leg and the invisible puddle I've stepped in.
Maybe I'm just haunted.
Hello! From a very wet and windy Wales. I’m Ailsa (not Elsa) and this is my second time hosting Shift MS. I’m 23 (😂) and when I grow up I want to be a YouTuber. Only joking, I’m married with four sons and a beagle called Daisy. I was diagnosed with RRMS in 2018. Introductions...
Today the team are celebrating the charity's 10th birthday with cake, party poppers & party hats!
10 years ago
@gpeps
and
@freddieyauner
set up to support people recently diagnosed with MS, last week the network hit 20,000 members.
I don't know about you, but I HATE (yes, it's that extreme) when people tell me to "get well soon" (if I'm recovering from something MS-related). Ugh. 😫
Because a lot of people don't understand what MS actually is and how it feels, it's easy for non-MSers to say the wrong thing. What thing has someone said that's made your eyes roll the most? 🙄
"Yeah, I get quite tired too.." / "You don't look like you're ill"
So here goes: I am 31 with RRMS diagnosed in 2019. I am married and have a dog called Rufus (see picture), and a 17 month old son. I am scientist and I currently am prescribed Ocrevus. I am VERY fortunate that MS does not currently limit what I can do.
I’ve bitten the bullet and made an appointment with a medical cannabis clinic in the New Year, my NHS Trust isn’t one that supports Sativex so I’m “going it alone”. I don’t tolerate mainstream drug’s very well so I’m hoping they can help me 🤞🤞🤞
#MS
This bothers me. When I see a new lesion on my scans, the last thing I do (personally) is try to pretend it’s cute (this is after 15 years of this shit). “Bright idea” my ass. 🙄 What are your thoughts? Am I being too “sensitive”?
I have MS and MS DEFINITELY has me. It’ll have me until there’s a cure.
That said, though...I have MS, but MS is NOT ME. It does not define me. I am not MS.
There’s a difference.
What's the most valuable life lesson you've learned since being diagnosed with MS? For me it's: DO IT NOW. ♥️ MS has taught me not to take any moment for granted. It sounds cheesy, but it's true.
I am now on Ocrevus, which I have a love-hate relationship with (I realise I am privileged to have access to DMTs). Infusion days are always good practice for my Turkish 😉 If you’re on a DMT, are you happy with it?
Now that we are in the delay phase of this pandemic we have to prepare ourselves. Because of my bonus illnesses I have been asked (probably more like required) by my family to isolate myself as much as possible. This won’t be much different to my usual life.
What are your plans?
Hi fellow MSers! My name is Rae, I’m a writer/theatre maker from Brum. I’ve had MS for almost 20 years. I’m a mum of two&lover of all things bright&colourful. I genuinely find that colour helps lift my energy &mood. What little things help make your day a little easier? 🌈⭐️
Living with MS I have lost my ability to do the work I once did. This was very difficult for me to handle, but it was starting my blog, which helped me find a new purpose in life. Now I use my experience to help researchers, pharmaceutical companies and EU projects about health.
This is just a short snippet of my daughter in her first ever swimming gala (black hat). One proud mummy tonight. I will not let MS dictate what I can be a part of or not and there was no way I was missing this
#MSwarrior
#strength
#family
Fatigue sucks! Did you know that 60% of MSers state that it's the symptom that affects their life the most?
When a wave of fatigue washes over you, what do you do?
I managed to walk for 30 minutes and a distance of 1.2 kilometres. This was a short walk, with the second 0.6 km taking much longer to walk
Managed to meet a donkey on the way too
Even though it is really hard work, it keeps my legs working, which means I’ll walk another day
No disrespect to anyone who embraces it, but I've always shied away from the "I have MS, but MS doesn't have me" statement. I prefer "I have MS, but MS IS NOT ME". There's a qualitative difference, I think.
Last week I spent 5 days in hospital to get IV methyl prednisone to help me with my walking. I am home for a week now and the treatment really helped. My
#walking
is so much better plus I have a new walking aid “Hip flexion assist device”
#strongertogethershiftMS
It's OK to not be OK. Talk about it 💬 Stash opened up about his MS. He made a film to show how
#MultipleSclerosis
affects day-to-day life, based on his experiences📽️🎞️
We're so excited share Stash's film with you 🤩
Watch. Enjoy here 👉
#MySclerosis
My REAL name is Amy. I'm 40 something former teacher and divorced mother of 1 teenage son. I was born and raised in Michigan, USA. For those on the other side of the globe, we're the state that looks like a mitten. Appropriately so, as we have LONG winters. Where's everyone from?