Last reply 3 months ago
Positivity

Seem to be posting a lot recently but it’s on my brain.. has anyone got any positive stories of living with ms? Everything is so doom and gloom has anyone had the condition say for 20 years with little progression? I think everyone needs some positivity

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cosine
3 months ago

Theres alot of nice videos on youtube.

One thing with RRMS is you learn to make to most of the time when you are relatively well!And you prioritise your health abit more than you would if you were healthy!


nutshell88
3 months ago

Absolutely optimistic looking forward to the future
Trying to have my pre/ms life best I can
Why not im absolutely healthy
The damage is unseen


novemberrain
3 months ago

Hi! I am one of them optic neuritis when 20 yrs old. Now 42. Have mild epilepsy diagnosed by MRI showing lesions in my temporal lobe with plenty more widespread. I’ve never had a relapse, I cycle for miles. I’m clumsy and a bit scatty. I am totally invisible MS. Literally just diagnosed secondary progressive after lumbar puncture and a follow up MRI. I asked to see MS neuro hence the new tests, not because I had new symptoms. Try and think positive. Can be a slow burn…..


novemberrain
3 months ago

I don’t take meds. There aren’t any!


stumbler
3 months ago

@blagaman182 , I’m still standing (just!) after 35 years. And, that’s without the benefit of up-to-date medications.

The whole MS landscape is getting brighter and brighter.


look
3 months ago

I have had MS for 22 years and although things are sometimes difficult I take the advice of my GP who said it is really important to maintain muscle strength even if you don’t feel up to it. Well, I had a horse riding lesson last week – I wanted to keep mobility in my hips but I really struggled to get on the horse with numb legs! So my excellent instructor got hold of a stepladder the kind used by decorators all over so I was very chuffed with myself for persevering and it took a few minutes but once on board all was great. It’s just interesting getting back down. I think what I’m trying to say is that even in the face of adversity, it is in the hope and the perseverance that lies the will to make the best of life when possible and the knowledge that things could always be worse. 😎


gloriaknight
3 months ago

This was the post I needed to see.

Thank you.


susan_sitton
3 months ago

@blagaman182
I have been diagnosed with MS since ‘08. I have three kids that keep me busy and help me forget about it most of the time. Just keep your head up and don’t let it run your life.


blagaman182
3 months ago

Thanks for your posts guys! I think it’s really important to keep a positive mind set. Our minds are so important to challenging anything in life. I’m struggling to stay positive as I think since Iv been given the go ahead for plegridy it’s all sunk in. I’m 6 years after my first relapse. Have only had 1 major relapse which tbh didn’t really stop me doing much it was more the shock of everything!


clare_mckenzie
3 months ago

Thanks for your post. I was recently diagnosed with RRMS. I’d probably had it for years and just never bothered to get some of the symptoms checked out. Anyway, I am not taking any tablets for anything other than Vitamin D that my Neurologist recommended.

I had a super healthy diet (Pescetarian), but even more so now. I have stepped up the exercise introducing yoga and more walking. My only symptom seems to be that I cannot walk very far without getting into difficulties.

So far, the kindness of strangers online has blown me away. I started an instagram account (ms_jellylegs) that offers a light-hearted conversation about MS and what it all means. Honestly, some of my experiences are worthy of a Channel 4 documentary. I just have to smile and laugh; you could not script it! I have been tripping and falling over for years offering much humour and laughable incidents. I guess I know why now!

I have also reached out to a marketing colleague who I used to work with, who now runs the communications at MS-UK, and I am supporting her with an event in September.

To be fair, I have been super lucky to have an understanding partner and some close friends near and far. Generally I am fairly upbeat about most things and my MS is no different. I do believe having a positive outlook in life is key.

I am just living each day and taking what comes. I do not have a crystal ball so for now life is pretty damn good!


pandagal
3 months ago

I’ve only had MS for 5 years, but I live a very positive life with MS.

I have had two amazing children post diagnosis and they keep me busy.

I also organise meet ups for local MSers. Especially those of working age who can’t make it to the usual MS Society meet ups held during the middle of the work day during the week.

Life is definitely what you make of it. I LOVE advocating for fellow patients and helping them to form and nurture a friendly, like-minded support network with some life-changing friendships made along the way.


erin_beatson
3 months ago

Thank you to all of you for sharing your positive stories/posts. I’m in the process of being diagnosed with RRMS at 42 years of age. It’s very encouraging to read your posts and be part of a positive community of supporters.


estelle_blackman
3 months ago

There is so much to be upbeat about, I was diagnosed over 30 years ago and now secondary progressive – I eat a healthy diet, do yoga and exercise everyday even if it is walking upstairs to my bathroom. I have been married divorced, have one child and have seen many more born.

I have also lost many friends over the years, some older, many younger and every morning I wake up and think “Yeh, I’m still here, let’s see what makes me happy today”

Stay Optimistic 🌻


christine_murphy
3 months ago

I am diagnosed 20 years with rrms…still walking and working part time. There have been plenty ups and downs but exercise, dmts and healthy diet have kept me from progressing so far i think.


nutshell88
3 months ago

Im Saudi Arabian women was daignosed 2004 age 17 second year highschool
Didnt know about it no one told me untill i found out second year university requested interferron now i regret helish experience after starting interferron i got my second relapse 2009

Traveled to usa to meet aprof in NYU hospital
I had a relapse when I arrived but ut remitted when prof saw me he said im walking normal if im annoyed of interferron i can stop it after he saw mri he said Imiggt be bed bound by end of 2012 if i didnt take tysapri i cried but i promised myself not to take any drug anymore
Graduated traveled to uk to learn english
I remained there from 2013 to 15
Studied and work
Came bk
Walking and kicking
Started Gileneya 2019

I hace a job and wish to increase work hrs x


blagaman182
3 months ago

@novemberrain I see your in the lovely county of Norfolk like myself! Who is your neuro if you don’t mind me asking? I’m slightly confused how you’re diagnosed with with secondary ms but have no symtoms is it all based on lesions? Iv been reading about MS since 2013 and still don’t fully understand it! So many contradictions it’s unreal.


Anonymous
3 months ago

I recently went on a hike and I forgot my glasses so I had constant double vision the whole time, it was difficult but I made it to the summit (850 meters)

I’m reaching new strength goals at the gym

Even the little things like remembering someone’s name 5 minutes after they tell me is a positive for me cos my memory and cognitive function is pretty bad.

Anything can happen to anyone at anytime we just have to enjoy life whilst we can, taking each day as it comes we all have our bad days but the better days will always come back to us 💪❤️

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