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Hi

Hi,

I’m 26, and have been diagnosed with RRMS for about 18 months now, with symptoms going back about 2 and a half years. I’m very new to this kind of thing, but am struggling to find something to help get out of the rut I feel I’m in.

I used to have quite a promising career, and was always a pretty laid back, happy guy. However since my diagnosis I have struggled with work, and can’t seem to motivate myself anymore. I’ve stopped socialising has much, become much more of a recluse, and am always feeling guilty about one thing or another. I have family and my girlfriend to talk to, but I find it hard to explain everything I’m feeling. I do have the odd good day, or week but that’s soon put to an end by my legs playing up, or incontinence struggles…but mainly my mind just saying “what’s the point?”

I suppose I’m just looking to find some people who have similar issues, and anything that they have found to help?

Thanks

Hi Sam

it is pretty tough having been smacked so hard at a young age. My only answer to your “what’s the point ?” question is (without being ironic) is "You only get one shot, so whether things are good / bad or indifferent it is up to you to make the best of it. With the help of family, friends and some professionals, it is not ALL over bar the shouting. You will learn to adjust your outlook, adapt your plans and cope with each shift of the goalposts.

I am not dismissing your question, I think most of us have been there on more than one occasion. I humbly suggest that you go out and do as many of the things you have dreamed of as you can while you can. That way you can build a library of memories and imagination to get back to if stuff gets worse.

I wish you all the best

PS you will be amazed by how you cope and deal with stuff in the future that you would never think you could do in a 1000 years. Trust me. Been there, done that

Mick

hi sam

mick is absolutely right in saying that we don’t realise how strong we can be until something like ms hits us.

i’d rather take to the gym to build strength than this though!

see someone at the bladder and bowel clinic for incontinence, they are great.

find out if there is an ms therapy centre near you (usually on outskirts of a city).

they are fantastic places, mine offer Hyper Barric Oxygen Treatment and has lots of friendly people with ms.

your legs playing up can be helped by physiotherapy, ask your ms nurse to refer you to a neurology physio.

then there’s the fatigue (which i consider the worst symptom of all), you need to pace yourself so that you have some energy left for your family and girlfriend.

you will get through it, it takes time to adjust mentally.

also physically - at first i used to stand up and set off as i always had done (launching off) but realised pretty fast that my feet weren’t moving quickly enough and i’d go splat!!

so i learned to stand still for a minute and only begin to walk when i was sure my feet knew i was doing it.

it’s the time lapse between your brain sending a message and the message getting through to the relevant department.

it’s a disgustingly rude disease for striking you at such a young age.

but you can and will get through.

wishing you well xx

2 Likes

Hi Sam, I can totally relate to how you are feeling. I pick myself up, start to feel ‘I can deal with this’ , then something else happened, ms symptoms or work issues, or personal relationships & wham it feels too much again.

For me a lot of it is people outside of this forum just don’t get it. Even my ms nurse doesn’t seem to get how I feel. When I am struggling I post on here and the responses make me feel I am not strange or wrong. Somehow I am no longer alone with it.

I am working on how to get those in my life to understand but I am not sure that that is possible.

I was excited, I had a wedding to go to, I had the day off before & two days off after, so I thought no issues with fatigue. But in the morning I got scared I won’t get ready in time. At the wedding I got scared I would stumble & people would think I had had far more to drink than I had. I felt sad when the bride kept checking I was ok. I don’t know is it worth the effort? Yes I believe it is. I believe that it mattered to my friend that I was there. But I need to talk about how I feel, but then it’s worrying/ upsetting for those you explain to. Better to just pretend all is ok ? That’s lonely. Share & you might spoil things for others or be seen as a victim!

I am sharing this with you as here I think people get how it feels, the difficulty of finding a ‘way’. If you listen to the ‘old timers’, no rudeness intended ! The message seems to be keep going and it will be ok !

Good luck with finding a way to make your life something you like !

1 Like

old timers…

fair point

it is not that everything will be ok but carefully choosing the battles that best suit how you feel. One annoying thing is that this can change almost hourly. People who do not actually have to deal with the "condition " (no matter what it is) will always struggle to comprehend how the sufferer (crap term sorry) feels and to adapt their behaviours.

it is just my opinion but trying to make the best of things feels more useful than just letting people know how crap things are.

All the best

Mick

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The message is, keep going. You have to do just that, when there is no choice really.