Hello all,
I have been lurking & reading for a couple of months.
I’m a 39 year old scientist, Surrey based, and I am currently recovering from optic neuritis (began 3 months ago). Although vision is much improved, it changes from day to day & still disconcerting. It lead to diagnosis in February. No surprise, really, as I had lesions, numbness & loss of proprioception 10 years ago, and MS is on both sides of my family.
I am fortunate that I am currently able bodied, in fulltime employment & in the position to do something to help.
Today I entered the ballot for the 2016 London Marathon (hopefully) to run for the MS Soc.
I feel like I should be doing something, but what else can I do to help? Any ideas or suggestions?
Ju ju.
What should you be doing to help? Help with what?
It’s OK, Juju, an MS dx does not oblige a person to become Mother Teresa of Calcutta… Keeping yourself as well as you can be for your own benefit and the benefit of those closest to you is top priority, I think. Staying as well as possible also means you have as much as possible to give. You’re in this for the long haul.
Seriously, being newly dx is a tricky time for everyone, pretty much. It is normal to feel buzzing with nervous energy one minute and totally drained the next. I think this applies whether the dx has come out of the blue or not. There isn’t really any way of preparing for that sort of news, and it comes loaded with so many 'what if’s that it is hard to know where to start to assimilate the news. Time and patience are usually the best remedy, and neither of them can be rushed.
It’s great that you are staying positive and keeping yourself focussed on new things and new goals. I wish you well with them all. But don’t worry if you find it hard to keep the positivity flag flying all the time. It’s terrific if you do, but it’s also OK if you don’t. So please don’t be hard on yourself if you find your energy flagging.
I hope that everything goes well for you.
Alison
Thanks Alison.
It’s only natural for someone who finds themselves in a community that is new to them to want to find a role to contribute in some way.
It’s not purely altruistic ‘Mother Teresa-ing’, it’s also an investment for their own future!
I know I am not going to be a fit & active, slightly annoying to others (!), and full-of-beans long term, so I would like to make the most of it while I am able.
By help, I mean support/fundraising/campaigning/community-based activities…whatever I can do, really.
Maybe I should be asking my local branch? There’s not a lot of info about the Surrey brand on the MS Soc website, so I’ll drop them a line.
People deal with an Ms diagnosis in different ways. I think getting involved with Ms groups is a great start if that’s something you want to do. Running the London is a wonderful personal achievement with or without Ms and wouldn’t I be great to get some confidence back in your body again? so good luck! I don’t agree about just looking after yourself (although obviously you’ve got to do this). Raising money for the Ms charities is then used to invest in research for future treatments so it may well benefit you greatly in the long run.
Ive recently had a lemtrada infusion and that was initially developed thanks to money raised from charities. I have no doubt it will change the course of the Ms for the better so I will be eternally grateful to those gone before me who raised this cash to develop this. Perhaps I’ll join you in the marathon next year 
Good luck during this tough diagnosis time, it’s rough. I’m 6 months down the line and honestly it’s getting easier and the old me is coming back.
Thanks Bagpuss!
Feel free to join me in the marathon next year (if I get a place at all…crosses fingers)!
It’s very reassuring to know that you feel the ‘old you’ coming back 6 months down the line, I hope ‘you’ continue to return!
I don’t really know what the ‘old me’ is! Life has changed massively in the past year due to many different things, and the MS dx is only the last of those things. (This episode was probably triggered by my immune system responding to stress)
I just want to make the most of life while I can. We only get one of them, regardless of what happens to our bodies & minds.