Last reply 7 months ago

Hi everyone, I’m new to Shift, so not quite sure what I’m doing haha, but here goes… I got diagnosed officially about a year ago and yesterday MS beat me! I had to have a day off work too exhausted and numb to get out of bed. I just wanted to know how you keep going when you feel like it’s taking over?! I realise I’m lucky that I can still work and it doesn’t take over all day every day but it feels like one day it might.

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7 months ago

@td1989 , MS can be a formidable enemy and demands your respect. You cannot lock horns with MS and expect to win.

Being overtired is not a good starting position to live effectively with MS. So, take this as a warning that you need to rest up and allow yourself to recover.

With MS, it’s OK to lose a battle, as long as you win the war……….

7 months ago

It might be the time to have a closer look at just how you’re dividing up your time and using your energy……At work, under disability legislation, employers have to make ‘reasonable adjustments’. In my case I was pleasantly surprised at how small changes did make a difference. xx

7 months ago

simply what doesnt kill uou msles you stronher
personally got used to its annoying sensation

7 months ago

Hello @td1989. One year of being diagnosed is still quite a small amount of time to be able to work out the patterns and waves of this bodily invader. I have been diagnosed three years now, and I think the biggest skill I’ve been able to develop is to learn to take one day at a time. Not that I don’t plan for the future, but what actually matters is to take this day, and make it count. So, if you need to take a day off because you’re listening to your body, then that’s a positive thing, right?

7 months ago

The gradual creep of MS is maddening. That is the nature of the disease and the reason for DMTs. I was diagnosed about 15 years ago and put on Copaxone as that is about all there was. Now it is not felt to be that strong of a drug but still used in some cases and back then there were only two available and that one was the best for me. After 11 years it didn’t seem to be having much impact so I was switched to Rebif. Now I seem to be moving into a more progressive stage with little things happening (no big attacks) but they don’t go away so I was moved onto a stronger DMT to hold me where I am. I don’t want to give another inch…so was put on Ocrevus a couple of months ago. In addition to the most effective DMT I can find I also eat right and do over an hour of PT a day. I have removed much of the stress from my life and really try to get as much sleep as I can. Stress and sleep are the #1 and #2 causes of attacks according to research.

So- you don’t want to give another inch? you need to do all you can to hold on 😉

7 months ago

I agree with @vixen. Today, for example, after a disturbed night, I’m very tired so I’m giving in to dozing – Ive nodded off several times writing this -but I know tomorrow I’ll feel better/more lively. @td1989 it’s the way of ‘the invader’….just go with the flow and it’ll be fine.

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