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Hey everybody,

I am new here. I am 21 years old, I was diagnosed with relapsing remitting MS when I was 18 but I started noticing little things around 14. Very young I know!

I am still so clueless on what MS actually is; I know the basics but I am experiencing new things all the time and they absolutely terrify me. My newest is MS fatigue. It started about 2/3 days ago and I am so beyond drained trying to fight against it (I am a stay at home mum to a 16 month old).

I’m not 100% sure what the point to this post is really, I guess just for some info and advice, and to just know that I’m not alone in this. When I was told my family took it harder than I did, I didn’t cry or anything I just kind of said ok fair enough and that was it. I know that it can be completely life changing and yet I don’t know how or why. All I know is that for the past nearly 5 years I have felt so alone in all this because nobody understands how I feel. I constantly feel like it gets brushed off because I may look ok, but I’m just very good at hiding my pain, I’ve got very good at walking and doing things normally despite the amount of physical energy it takes to do things at a normal pace. I guess I just need people to talk to? I don’t know.

I am already finding it hard with work, my previous job I was a toilet attendant, I ended up crying on shift every day and after about 5 weeks of having the job I found myself in hospital with a flare up and I lost my job. I have my standard GCSE’s and 3 A-Levels but I’m not really qualified in anything, all I know is bar work and cleaning but they’re the worst jobs for me. If I continue to do these kinds of jobs will I get worse? Will I get to the point that I can no longer work ever?

I don’t even know the long term effects, I have seen about people losing feeling in arms, legs, fingers, or their face and neck and their taste buds… I didn’t know about any of these possibilities.

I feel so silly for writing this, for not knowing anything about a disease I have to live with for the rest of my life, for not knowing what could or will eventually happen to me. I feel silly for being so scared and nervous at my age.

If you made it this far, thank you for reading and I apologise if this post seems completely pointless.

Never, EVER apologise for expressing your feelings / fears / anxieties, on here !! That’s exactly what forums are for. And you are amongst members who have a whole range of knowledge & experience and whom will be able to offer help / advice / a metaphorical shoulder !!

Sometimes you need to just put it all down in words, to even be able to unravel some of it yourself. And there will always be someone who will help you unpick the knots.

We all deal with it in different ways. For me, knowledge was power and I bought a book about MS, ordered fact sheets from this site and joined this forum. Also, use your MS nurse… everytime you think of something you need an answer to, write it down so that you don’t forget. I use my diary so that I don’t forget where I’ve written it down !!!

The best advice I can give (and it’s not easy to do), is to stop trying to second guess what the future holds. No one knows. Each day is a new day and I think the best way to live with a health condition, is to take each day as it arrives and deal with what it hands you, as it presents itself. That’s my form of self preservation. Life is unpredictable at best and for everybody, healthy or otherwise.

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Hello there, MrsH has already given you a very good reply but I’ll do my best to add to it. It is a sad fact, but very common for people with MS to feel isolated. However, the good news is that you have found this Forum. There is more information, experience and wisdom here than you’ll find in a whole room full of neurologists. MrsH has already mentioned the most important thing about the Forum; that you can talk about anything. Whatever is worrying you, you can be sure that someone will understand how you feel, usually because they will have already have been through it themselves. People like us often hear others saying, “But you look so well.” because so many aspects of MS are invisible. We all need people to talk to; people who understand; people who have empathy with what we’re going through. My personal piece of advice is not to let what may happen in the future stop what you want to do today. You’ve got youth and intelligence, which is a pretty formidable combination and I’d like to see you do more with that than clean toilets and bar work (why are some customers so stupid). What would you really like to do? What is your passion? apart from your baby, of course. Welcome to our Forum, I know that you’ll get a lot of support and encouragement, whatever you want to talk about. For now - my best wishes, Anthony

Hello

OMG, diagnosed at 18. What a bloody shame for you. No wonder you’re a bit bemused by the world of MS and worried about your future.

First of all, have a look at the tab at the top of the page marked About MS. There are lots of links there to symptoms, treatments, types of MS and much more. It’s worth doing some reading about what you’ve got and what you can do about it.

Second, I assume you have relapsing remitting MS. If I’m right, then the chances are you are on a disease modifying drug (DMD). If not, have a look at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid It’s definitely something you should be talking to your MS nurse and / or neurologist about. The less relapses you have, the more able bodied you will be for longer.

With regard to fatigue, this is a good source of information: https://www.mstrust.org.uk/a-z/fatigue As the parent of a young child, you’ll be extra prone to fatigue. Children don’t understand when Mum is absolutely banjaxed by fatigue and just needs to rest. For that reason, you should probably be more careful to manage your fatigue levels, you basically can’t ‘push through’ fatigue. You need to make sure you rest as much as possible.

As far far as work goes, you are right, cleaning jobs and other physical work aren’t going to do you any favours. That said, you should make sure you exercise and keep as fit as you can, it will stand you in good stead for the future. But, is there any possibility that you could go back to college and get some more qualifications? Maybe something vocational? Having a good basic level of GCSEs and A levels says to me that you are wasting a decent brain by cleaning and doing barwork. I don’t mean to be elitist and suggest that either of these jobs are ‘beneath’ you (or me, or anyone). After all, someone has to do cleaning and serve drinks!! But having MS is going to make physical work more difficult as time goes by.

Keep using this forum. It’s a good source of information, and the forum members are widely experienced and always ready to share that experience and their knowledge. If nothing else, we know what it feels like to be relatively new to MS.

Sue

Hiya,

I agree with everything the others have said. You must remember that MS is so weird in that it seems to affect everyone in different ways. We don’t all go through the really scary stuff. Think positive thoughts, avoid stress (stress at any level completely floors me, which just isn’t how I used to be), make sure your friends and family understand and ask for help whenever you need it. Live your life.

The one thing that most, if not all, MSers suffer from is Fatigue. The only answer to that is to give in to it, when your little one is having a nap so should you.

Thinking positive thoughts on your behalf … awful that you’ve been diagnosed at such a young age but there’s so much research being done on MS so hopefully some scientist will have a Eureka moment soon and you’ll see the benefit.

We’re all here for you.

Tippy x

Hi,

I got diagnosed in the middle of my A Levels at 17 and felt exactly the same! I’m 30 now and I’ve been mostly fine apart from fatigue. Not being open about my condition and not talking about it are probably my main regrets because most people are fine about it and I’ve landed on my feet with my new job because the manager is supportive. A rare thing in my experience but they are out there. Good things are around the corner too and they happen when least expected.

I have a degree in archaeology, not terribly useful but I got a few years of digging in. Now studying horticulture online with a practical course beginning next month. Studying is good and you can just follow your interests and see where they take you. Has it’s own challenges though, especially if your memory is as dodgy as mine, but takes my mind off of other problems.

Take care

Lauren

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hi

why don’t you think of something you’d like to do for a living that will fit in with your baby?

you have youth on your side.

if you need to do further qualifications then this is the time to start planning.

uni or college should be supportive of your health condition and always have a tutor in charge of pastoral care.

it is so unfair that you got struck with ms at such a young age.

i was 50!!

make the most of your life sweetheart.

give your baby a cuddle from me!