marcyg921 27/05/17
Last reply 8 months ago
Just need to get this off my chest

So today I’ve felt absolutely rotten. I was diagnosed back in November and had Round 1 of Lemtrada back in February and since then I’ve been doing fine, bit tired but managed to live day by day and even started physio and my balance seems to be getting better. But today I’ve stooped to a new low. I don’t know if its been the heat, the stress at work as we’ve been insanely busy (I work at Primark and if you’ve ever been in there you’ll know how busy it gets) or just extreme tiredness by lack of sleep or if I’ve just tried to do too much healing too quickly or a combination of all of them but today has been the worst I’ve maybe ever felt. I’ve ignored people, threw stuff out of anger and bursted into tears on multiple occasions and I’m just fed up with feeling like this and the worst part is that I really don’t know what I have to look forward to anymore as I just feel no one I know understands what I’m going through.

I know I’m strong enough to get through these dark days with some rest and I know next week I’ll be back to my old self but I just need to get this off my chest.

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stumbler
8 months ago

@marcyg921 , you did the right thing, coming here to get it off your chest.

Lemtrada is a great treatment for MS, but its primary function is to halt the progression of your MS. It remains to be seen whether you are able to repair the existing damage.

So, what I’m saying is that your existing symptoms may still cause problems when you push yourself. And, in this respect, the heat doesn’t help.

However, you have age on your side, so you should have a decent neuronal reserve to repair this damage. Your body just needs the time to effect this repair.

So, put your feet up and try and chill out. And, take things easy. šŸ˜‰


edmontonalberta
8 months ago

“no one I know understands what Iā€™m going through”

They don’t; nobody does including us… But we come close to understanding so will not judge. Except to say try to control your actions at work; a paycheck is important.

Vent away!


merfield
8 months ago

@marcyg921 ….it’s now a few hours since you posted. A few hours to feel a bit better and a bit more optimistic after a good nights rest. I really do hope so. These feelings of hopelessness happen to us all, MSers and others too for whatever their reason. Having a chronic condition is so tough but you are young as @stumbler says ‘stand a good chance of neuronal reserve to repair this damage’ with rest. The heat doesn’t benefit any of us, and it’s due to cool down soon; we are with you and although we don’t know exactly what you are going through as @ edmontonalberta says, we are closer to understanding. Enjoy the day and I really hope you feel better xx


anxious123
8 months ago

Just to say i feel like this and have done for 2 months…i am not yet diagnosed but neuro says 99% sure it is…struggling through at moment but i am hopeful i will feel better and i will mentally feel able to enjoy life again once i get on dmd ….fingers crossed for us all x


vixen
8 months ago

Hi there. I am newly diagnosed too and for people like us, we are still learning what it’s like to have MS and make sense of it. I never know what to expect from one day to the next. BUT, when you have a bad day, put it down to experience. When we have built up a collection of good and bad days, people like us will be able to see patterns and notice triggers. So look at it that every rubbish day you have will equip you with the knowledge of what you need to do to minimise the chances of having future bad days and, when you have them, what you need to do to get past it. Good luck, you!


tracyd
8 months ago

@marcyg921
I found out pretty quickly after round 1 that at times when I was overly tired, stressed or over did things that I would have pseudo flares of my symptoms which sound similar to what you describe.
Some rest should help with the tired, but the stress, that needs to be managed too, and how you do that will be a very personal thing xxx

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