How do you feel?

Everyday living
1

Hi everyone,

I KNOW THIS LOOKS LIKE AN ESSAY BUT PLEASE READ ON… I would appreciate it so much!

I have wanted to be a part of the MS Society for a long time, years before I was diagnosed with RRMS. My grandma passed away from complications of primary progressive MS 47 years ago, when my mum was 12 and my auntie was 4. I haven’t done anything to help until now because I was sure there was no way I could ever make a difference (but then I suppose if we all thought that then the amazing things that happen to ordinary people everyday would be nonexistent!)

I’ve always felt a sense of injustice for my mum and her sister who had to witness the deterioration of their mum and then the trauma of grief. And I’ve see the knock-on affect it has had on my mum throughout her life. That is something I wouldn’t wish on anyone.

And so, I want to give something back. Not just for the sufferers but also their family, friends and the general public (whether it be emotional support or information, or some practical advice).

i know the MS Society has people that do all of those jobs already but I also know that sometimes even that can seem a bit…uncomfortable? Fake? (Just my opinion). Not to demean any of them, the things they do are commendable and I am grateful for them but I feel like someone like me has the potential to help someone… like any of you reading this now!

But this is where I need YOUR help…I want to find a great way of interacting with people with MS. can you think of any ways in which you would love to hear from a fellow sufferer? A blog? Videos? Any other form of social media?

Im just a 23 year old English graduate, while I search for a job I have so much spare time to make a difference and I’ve contacted MS Society and MS Trust and neither have anything to offer me. To be honest I feel as though the forum space is great for interaction but I can never/ could never find the answer to any of the questions or concerns that I had…?

is it just me? Everything here seems a bit lifeless, a bit flat… sometimes if I try to get involved I feel as though the disease is not represented in a modern enough way to be properly recognised by younger generations that will be the future of the charities and the research. Please let me know what you want… what you would love to see every time you went on your computer when you were worried about the condition, whether it’s for you or someone else. Anything is a great help.

When I was first diagnosed my mum received condolence cards from family friends and neighbours… as though I was going to die. I’m never going to die (okay, I am… but not until I’m 150 years old!) I love life and I want to share content about my story with MS in a way that can help other people… when I read things online about MS… I FEEL DEPRESSED!

I need to make a difference, I can’t bare another day of letting my nan’s memory slip away without ever having contributed something to all of you… or at least to the ones that feel as though they can’t make it on their own… or those of you that are fed up of being treated as though you’re dying… things have changed since the 70s, we need to get passionate, we need to give fun, interesting anecdotes and facts! THEN WE CAN MAKE A DIFFERENCE!

Thank you if you’ve gotten this far…

any suggestions would be amazing… or just a comment to say that I’m not crazy, that you understand too!

Rachel Love

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Hi, Shift MS like people to get involved, including younger people.

Or are you really looking to start something yourself?

xx

1 Like
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Hey Rachel & Lenny,

I read the original post as a 54 year old grumpy git (who was once a 23 year old and immortal git, sometimes in my head I can roll back the years!)

Initially I was thinking “I don’t know what to suggest to make the best use of your time, talent and passion.” I then looked at the shift.ms link , after browsing the site and watching some videos I was really impressed.

So I want to thank you both for expanding my view of this world.

All the best

Mick

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PS I think the short films are brilliant and explore very real stuff like worries and how we or other might respond to stuff. The film makers have done an amazing job. Well worth a look and a bit easier than reading a long blog.

M

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hi rachel

my ms therapy centre (trafford) has a website which nobody ever visits because it is so out dated.

maybe an ms therapy centre near you would love some help with theirs.

carole x

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Hi Lenney, Mogace and Carole,

Thank you for your responses and suggestions. I’ve checked out the shift.MS website and it does look really good, I will be signing up for their volunteering positions. Thanks for the suggestion!

I will also get in touch with my local MS rehab centre. Thank you Carole. I am hoping to do something myself as well but I have no idea what it would be and, to be honest, I’m not sure anyone would have the incentive to look at it.

Rachel x

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You know what would really make a difference to me personally? To meet up in person with fellow sufferers for a coffee or something. I have tried to arrange this in my area so many times, but I never get any interest. Maybe I’m the only one in Cornwall who feels this way. I just find it so flipping hard being on my own so much. I am such a people person. I think for me, having to be on my own so much is probs one of the hardest things about having MS. I know this isn’t much help to you as your are most likely not in Cornwall, but they maybe other people where you live that feel the same way I do and you get set something up for them, love Bex xxx

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Hi Bex

Shift MS have recently won funding to create an smart phone app. Finding someone like you - Map.ms

So people with MS can use the app to find and meet other people with MS in their area.

https://www.avivacommunityfund.co.uk/voting/project/view/16-2949

" Map.ms will allow MSers to quickly find people like them, near where they live, building a deeper sense of community. By plotting the location of Shift.ms members, meet ups and location-specific groups, Map.ms will put the MS community, literally, on the map. Shift.ms takes online safety extremely seriously and has a clear set of guidelines to ensure people do not reveal their home address."

xx

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Map MS on Youtube

Finding someone like you - Map.ms