Big step this, new to the forum but have been following posts for some time. Got a diagnosis today for MS (secondary progressive). Not a big shock as although I have been mostly fine (I’m very good at burying my head in the sand and trying to carry on!!!) it’s been in the back of my mind after a bout of optic neuritis 10 years ago. Have ignored my hand tremor and leg trembling for a few months (maybe years if honest!! I convinced myself it was a trapped nerve - though it never got better!! And the urinary retention - embarrassed) until the most recent bout of optic neuritis 6 weeks ago and a big old relapse - big struggles to get out of bed). Just want to say it’s been a big support reading through all the posts before today and I am sure in the future.
Are there any other ms runners on this forum? I try to run (and now I know why I am not improving/falling over when running!) I can just about run 1 mile now (I ran 2 marathons last year - the neuro could not believe it and thinks I should have an extra medal cause of the state of my legs which was nice to hear!!) Am a mum of 3 and a full time teacher also - tough times to come!! I know there are lots of challenges but looking forward to meeting new friends who understand what it’s like living with MS. Any help/advice/support/supplements/diet advice very much appreciated x x x
welcome to our club (although i wish you weren’t eleigible).
you have coped so far and managed to run 2 marathons!
ok so i hate platitudes but your mind is in a good place so now you have a label for any clumsiness, sleepiness, stutters and the like.
basically just keep on top of your symptoms and if you need help with any particular symptom, just ask on here.
how old are your children?
have you told them?
they can cope with hearing about your illness. i believe it is better to be honest with them.
I use to be a runner in my younger years.
I would run X country, half marathons, race/events/competitions and the odd marathon whilst still serving in the army.
I really enjoyed this, as it got rid of alot of stress !! and it was my release !! I found life was alot better once I had run a good run.
Just wished I still had the normal use of my legs. Now I have to use a exercice bike and treadmill at the local gym.
Try joining a local athletics/running club, they may have a group for disabled people who can not do long distances maybe run just around the track until you improve, they will be able to give you more advice you require.
Hope you still are able to carry on running.
I am unable to run as my legs just dont seem to want to want to play ball and I sort of go around in circles rather than in a straight line! But I do cycle and I like to cycle distances of around 30 miles. In fact, cycling actually helps my legs out big time. If I haven’t been on a ride for a few days then I am as stiff as a board, untill I manage to get back out on the bike again.
Alot of this MS is about (and I quoute Jack Osbourne) adapting and overcoming to achieve your goals in life.
Welcome to the forum by the way.
Thanks everyone!! It is. Bit of a relief to have an explanation for all that clumsiness and falling over etc. I am going to try and run as long as I can. I have I bike too so might dust it of out the garage number08! Don’t think I could manage 30 miles though! I need to read through the info sheets on here about telling my children. They are 11, 7 and 4. They know I have been a bit poorly but think I need to sit them down and explain a bit more x x might try and find out a bit more about disabled athletics too as I was training to be back on the track this year for vet athletics before the last relapse!!! Thanks for all your advice and support x
stacey x x
Its actually 30km rides and not miles lol.
As for telling your children, I am sure that I have seen cartoon styled DVDs and books at my local MS centre which explains MS is a nice friendly way. Most of the leaflets etc, can be ordered form the this website, I think…
Thanks I will have a look!! X
Hello you’re in the right place, everyone is lovely xx
If you get in contact with the MS Society they have some books written for kids to understand MS , in their words, maybe of help to you.
“Annie and Dan talk about MS” “Our dad makes the best boats” “Our mum makes the best cakes”
“MS the facts explained”
I will do that’s great and you’re right- you’re all lovely!!! When I meet my ms nurse I am going to ask about local groups etc and I will definitely order those books you mention. Thank you so much - am off on a much needed holiday on sat for lots of fun with the kids and hubbie - though the forecast for Newquay is rain!!! Thanks again for making me welcome x x x
Just wanted to say hi and good on you for the running