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New (and a couple of questions) :)

Hi,

Im new to the forum and pretty new to MS too. Im 23 and got diagnosed back in april, had symptoms for a couple of years, but things moved on abit when my eye stopped moving as it should last november… like the idiot I am, I thought Id just put my contact lenses in the wrong way and thats why my vision had gone funny…turns out that wasnt the case!! Im waiting to start disease modyifying therapy, and will be starting on beta inferon 1b (i think)

I was doing well comoing to terms with it intinally, but have been struggling a bit lately, my energy levels have been crap and Im not quite sure how to deal with it, Im trying to rest when my body tells me too, but also have a life to lead and things t be getting on with!! How does anyone else deal with this?

Also, how have other people close to you dealt with it? Ive found a couple people, who were part of my nearest and dearest, distance themselves from me, including who was my boyfriend, who said he was struggling to cope with the worry of me and what was going to happen and didnt want to have to deal with it…

Anyway, I’ll stop waffling now lol

Take care and thank you :slight_smile:

Hi Little_tiger!

Speaking from my own experience, it’s one of acceptance. When things went wrong with me at first I like many had issues with where it was all going to end. I have had a lot of counselling both with my MS rehab psychologist and also my GP’s service. However I have really only now after three years got to the point where I accept what’s happend, what’s happeing a d what will or will not happen in the future.
Saying that each person is different and I guess it effects different people different ways.

I am immensely lucky both in my friends who do amazing things for me and my entire MS team. I have had a few people shy away due to some of my issues (catheterisation and injections) but generally it’s all been very positive.
I will be honest and say my marriage is under starin because of the last few weeks, but again what will be will be. She is a nurse and taking your job home I guess is hard.
Best of luck

Strudders

Hi, and welcome to the site :slight_smile:

The time just after diagnosis is arguably the toughest - not only dealing with the symptoms but the diagnosis and the knock on effect on friends and family. Fatigue and lack of energy is really really common in MS. I’m afraid there are no simple answers. Resting when you need to (as you are already doing) is very sensible. Stopping and resting BEFORE you get tired helps. As does not trying to do too much in the first place. Asking for and accepting help is important too. As is learning to say no; being more selfish at times. These are hard lessons to learn though and most of us are guilty of overdoing things from time to time, but sometimes it’s worth it! There are meds that can help - the main two are amantadine and modafinil. Like all drugs, they don’t work for everyone, but they are worth a try if needed. Modafinil has honestly transformed my life and I couldn’t do without it.

People are sometimes harder to manage than fatigue! Some of the ones that run away come back when they get their head around it. The ones that don’t aren’t worth worrying about. Sometimes the bad or avoiding reactions are because people have weird ideas about what MS means or because they don’t know what to say or because they are worried about worrying you etc. How to deal with it really depends on the person. Some people find learning about MS helps (there are some great free booklets available from the MSS and the MS Trust). Some would rather pretend it didn’t happen (whether or not you play along is up to you). Some find that you going first and talking about it breaks the ice and everything gets back to normal. It really is a matter of trial and error. So hang in there - it’s early days - the good 'uns will come round :slight_smile:

If you’re not quite sure which DMD to choose and want some more info, the best place to go is the msdecisions website - full of useful info. And of course, there are plenty of people on here who have experience of all of them, so if in doubt, ask :slight_smile:

Karen x