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Newbie needs advice please

Hi all

I had a shock diagnosis of RRMS last week completely out of the blue. I had a few days in hospital for the tests and iv methylpred, but home now thank goodness.

I had no clue this was on the cards so ive been taking time to get used to the idea and trying to find information.

Im still quite restricted with poor use of my hands, limited mobility and extremely fatigued.

Having said that im hugely bored. Im usually really active and busy, running my own business and suddenly I am reliant on other people for almost everything. Daytime tv is mind numbing but I cant concentrate to read a book. Normally id paint or knit but obviously cant hold a paintbrush or needles.

What do you all do to stay sane ?

Hi Janet, you must still be in awful shock at dx, loads of questions & worries. Thing is to give yourself some time to take it all in. It must all be a bit raw at the moment. It will take some time to get your head round it. I agree, daytime TV is diabolical! Let yourself rest & time to take it all in. You will improve gradually, I too was dx with RRMS 9 years ago, felt in limbo for quite a while, but it wont feel like this all the time. Get info by all means, you need to, but be careful where you source it from, you don’t need horror stories right now!!! Let your body tell you how your doing!!! It will get better take care Tracey x

Get Netflix - I’ve never been short of things to watch!

Good point from Tracey. My neuro told me that there were only two websites she would recommend I read - MS Society, and MS Trust.

I am only recently diagnosed too. I had Optic Neuritis, and read up on it. I saw there was a possible link to MS, but I kept joking that I’d be diagnosed with MS while internally ‘denying’ it. Thinking it’d never happen to me.

Someone on here mentioned MS therapy centres. I’ve googled and found one near me, and there might be one near you. It might be worth going along and speaking to people there. My local one offers different classes, like physio, yoga, aromatherapy, massage, and oxygen therapy… They might be able to help your mobility, plus you get the opportunity to meet other people and get information and advise from them.

Hi Janet

Sorry to hear of your shock dx, it must be terrible for you.

Have you got a laptop with an Internet connection ?

I spend a lot of time sitting on my bed watching BBC i player and looking at other stuff on the internet.

I enjoy pinterest as I see it as a way of "being " creative, sort of, a way of planning what you’ll do when you’re a bit better. it is, also, like look at an endless book full of everything from backing and sewing, beautiful photos and interesting facts to cars and tractors (a beautiful pink one!) and so much more Perhaps you’re all ready on there, in which case i’m preaching to the converted!

I also like playing word games on my lap top. But there are times when even those things are too much and then i listen to the radio, either live or on iplayer. I keep meaning to join an audio book club but haven’t got around to doing it yet.

I hope that you’re copping with it as well as you can and that you’re feeling better soon.

Teddie x

Hi Janet,

i used to be an avid reader but find that I can only read in short burst now. I satisfy my cravings with audio books. I am a member of audible and kindle unlimited and get through loads of books every month. I find listening much easier than reading myself. Sometimes I do needlework while I listen but more often than not I’m just couch potatoing.

I also play a lot of games on my iPad. lots of great free apps available.

Jane

Thanks all for the sound advice. Ive been careful not to consult dr google and have stuck to ms society and nhs so far. Will check out ms trust too.

Thanks for Ideas of pinterest, netflix, games and audiobooks. will give them a try

Was proud of myself this afternoon too - managed to make myself a cheese sandwich. Took 20 minutes but I did it.

Catch you again soon x

Hi Janet,

I was diagnosed with MS in March, I couldn’t concentrate to watch TV, read books or anything except MS Info from MS Trust & MS society for weeks. I tried but I had to watch things several times before I actually saw them if that makes sense. I think for me it was absorbing what I had been told and trying to work out what that meant. It has got easier I am just trying to make the best of everyday now and accept that I have good days and bad.

Snowqueen x

Sorry to hear of your 5hitty situation. It will undoubtedly improve with time, but yes, what to do until then is a challenge.

To an extent before i was diagnosed, but most definitely afterwards, i spent my time working on adapting or overcoming those newly found inabilities and hardships. Easier said than done i know. I also acknowledge that what ailed me is far less than what many / most are stricken with.

But being branded an MS’er allowed me to realise that improvement was always likely, but by the same token, a risk of accumulation was also a real threat. I decided early on “to hell with letting the symptoms simply wash over and take me!”

For a time, writing and typing required a modified technique and an adjustment of reasonable expectations; quite a challenge given that i remained at work, attempting to portray ‘business as usual’.

Walking and balance, not to mention occasional vision blurs also allowed me to practice a facade of normalcy. Essentially, although things felt like crap, i was determined to carry on as if nothing was going pear shaped. I didn’t want it and i wasn’t about to take.

For you (and everyone else) things are bound to be similar but very much different. But if i were you i would be pushing myself to do as much activity and even exercise i dared to think was possible; to push through it all.

And make cheese sandwiches, morning noon and night! This is just one of your life’s little challenges. Embrace it. And the very best of luck to you.

When I was first diagnosed I was off work for 5 months with 2 relapses one after the other and 2 two week stays in hosp. I used the time in hosp to research MS. I agree with you daytime tv is mind numbingly boring. I found researching my family tree filled alot of my time, It was something I could pick up and put down and walk away from. It built up very quickly and I really enjoyed doing it. Beware though it does become addictive… Sharon x

Hello I am new to this website but not MS. I would advise swimming if possible it’s like a instant pain killer I go daily if possible twice. Also positive thinking helps i.e. say to yourself tomorrow will be a better day.

Hi

Mine was a shock too, it does take a while to digest when I thought I had a trapped nerve On the plus side, we had a relatively simple diagnosis, some people are stuck in limbo for years, MS is just weird like that.

Yes, I have Netflix and I paid for the good editions of solitaire and mahjong on my tablet - it means I get new games every day. I’ve also requested some adult colouring in for my Birthday, thought it was worth a go and safer than sewing. I’d like to at least try and do something artistic.

Don’t be surprised if you’re emotions are a bit up, down and all over the place, I think it was a couple of weeks before I could get thru a whole day without tears. Just take you’re time and remember there’ll always be people here if you need support. What I knew about MS could have been written on the back of a postage stamp, I just knew it was a serious one.

Take care

Sonia x