Hi new to the group

[N666HTY]

Hi everyone im Leanne and new to the group.

I was diagnosed june 2015. I had quite a few relapses in a short space of time and was given plegridy which i inject one every other week.

I am not sure what my reason for posting is .... i think its maybe to have a rant and talk to people who understands.

Ive been readin a few posts and find them interesting i like that people can find positives to this awful condition.  For me i think ive done nothing but burry my head in the sand. Until i have symptoms then i freak out and have emotional melt downs.. its like a reminder that its still here.

How did people deal with and accept  it? I cant seem to do it. I hate it and cant think about anything other than how bad things are and how much worse they will become.

Currently got a numb right hand side face. My lips feel massive and even my gums are numb. Its so frustrating as there is nothing anyone can do. Its driving me mad...

Sorry to moan

Leanne

[Nick]

Hi Leanne,

 

First, welcome to the Forum. This is a really great place to have found. It's sometimes a bit quiet but there are lots of people of all different backgrounds and ages here who are only too keen to help. My own view of it all is that the process of first understanding your own MS, and then learning to live with it all takes time,often a lot of time! A big move forward to help is indeed to make contact with other people with MS, so good move on your part to post here! Don't apologise about moaning! It's such a frustrating thing, we know.

Anyway we are all different. I'm now 62 and was only diagnosed 10 years ago. The first couple of years was difficult but my view about my fears about my own MS has changed as I've become more expert in helping myself to understand my own MS problems. I got there by getting involved with other people with MS. That alone was difficult, as I didn't want to feel, or be labeled as 'disabled'

It is possible to have a positive attitude, but that takes effort. Its an extremely difficult thing to change from having nothing but negative thoughts, to starting to enjoy life again. MS is no excuse to stop doing stuff, you still can but often you need to learn to listen to your body much more, avoid the times when you can't do stuff, but make sure you do carry on when you can. MS hates stress and this is a big problem when you are first diagnosed as you are totally stressed out about that to start with!!! Building up a bit of 'core reserve' and then seeing what's possible, often works wonders. Mind you I often still don't listen to my own advise and have to pick myself up again (as it were) Proper exercise and proper diet are also important with MS. I'm a great advocator of trying to avoid any excesses of diet, again something I often find myself failing on!

 

Nick

[Downwards]

Hi Leanne,

 

welcome to the forum : ) hey don't worry about moaning it's completely understandable..I think one of the best things you have done is find this forum..it certainly was for me.

 

I can remember a time when my lower face/lips went numb..it was awful!! I wore all the skin off my lips by constantly licking/nibbling them to see if the feeling had come back yet..luckily it DID soon come back..hopefully this will be the case for you too.

 

I'm sorry I can't add much to what Nick says I'm afraid..but reading peoples first hand accounts of how they cope and what helps them has been a godsend hopefully it will be for you too.

 

Fran

[N666HTY]

Thanks both for your replies. I really need to take of what youre saying and focus on my lifestyle which consists of fags and wine bad food and no exercise!

[ptlike]

Hi and wellcome Leanne. Nothing wrong with moaning.

Best wishes

Peter

[Nindancer]

Leanne, I chuckled reading your comments. Seriously, I started blogging to get it off my chest and I've written about pole dancing saving my life, emotional meltdowns, diet choices, positivity etc.

Having a place to connect with others in the same boat, helps so much.

Sonia x

[Scully]

Hello Leanne, and welcome to our group here.

There is lots of information under the various headings about MS.

There are also lots of people here, with first hand knowledge of MS.

 

Most of us went through the stage of denial at some point, which makes dealing with relapses even harder to cope with or course.

Have you an MS Nurse. If not, call your GP surgery and find out who yours is. Talking to your MS Nurse about how you are feeling will help, and they often can help you through this denial phase.

 

Once I got through th denial, and accepted that, actually, I can cope with it, took on the sort of attitude that 'sod this, I'm not going to waste my life, worrying about things that may never happen'....it actually makes life easier in general.

 

Also try and hook up with your local MS group, or speak to the MS Society on the phone. They have infinite patience, will talk this through with you, and also have some excellent booklets you can read. https://www.mssociety.org.uk/ms-support

 

There is also a free helpline https://www.mssociety.org.uk/ms-helpline. These people will spend as long as it takes to help you though, a lot of them have MS anyway and can give you the emotion support in coping with the diagnosis and all that comes with it ! 0808 800 80000

 

We are here too, ask questions of us, rant all you like too.....we all need like minded 'mates' to get us through eh?

 

Scully

Edited 15 Sep 2017, 3:05 am by Scully

[N666HTY]

Thank you all so much for your comments. Im a member of the MS Society local group. Think its about time i went along.

Thanks guys

[Mal]

Hi Leanne

 

All good advice above , just like to add "learn how to relax" how to empty your head

of all worries , if only for twenty minutes , a good book , movie , meditation ...me i get lost in music

Have you any hobbies ?

 

Best wishes

Mal