What is the norm ?

I have PPMS but is it normal to feel better nearly 2 years from original diagnosis. I had a lot of symptoms in the beginning but most of them have disappeared or improved 90%. My worst symptom now is fatigue but even that can be controlled. Everyone I meet does`nt suspect there is anything wrong with me unless I tell them.

I understood ( from the experts) that my situation would progressively get worse over time but is that likely. I look after my partner Dee who is diagnosed with Dementia. That can be hard at times but I manage to cope.

I think it`s the not knowing and no one can say that is playing on my mind.

I wish I could tell what normal is, I carried on doing a physical job for a few years after diagnosis and now sometimes can’t open a packet of crisps

Everyone is different and to me it sounds like you have your hands full. I have taken 25 years of gradually decomposing but I am stillManaging to bloom just in a different ways



To be honest I dont have time or even think about my condition as Im fully occupied looking after Dee. While I can, I will continue with my caring duties if until something happens. It definitely keeps me on my toes.

Maybe that is it Scudger, you are so busy looking after your partner that you don’t have time to dwell on your own difficulties. Enjoy yourself while you can , nobody knows what is around the corner. I’m still waiting for an ms diagnosis but have already got the wheelchair, at the moment I’m living my life to the full there is no where I can’t go with my wheelchair and of course Frazer , the only thing holding me back is my tiredness. Don’t let anyone tell you how you have to behave , I don’t think you need to tick all of the boxes. Michelle and Frazer xx

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Hi Scudger, there is no ‘norm’. The nature of MS is similar to to all with MS yet different! Total contradictions. It’s great that you’re able to care for Dee so well.

I stopped working in 2004 due to ‘vertigo’ and memory difficulty. In 2011 MS was diagnosed and was later confirmed PPMS . At first I didn’t think I’d got MS at all, I felt dizzy, low concentration and very forgetful. Nowadays, it’s clear that PPMS is having its way with my brain and spine. Yet there are still days when I feel on top of the world, do a couple of housework jobs and no-one would detect I have anything wrong. That’s the norm for that day. Other times, I ache everywhere, unable to stand and sleep over 15 hours, I feel lousy but it’s the norm for that day too.

Enjoy what you can Scudger, when you can. It is hard enough for you being a full time carer, so grab every opportunity of feeling good. Good luck with yourself and with Dee.

Chrissie x


Hello Scudger.

MS has dogged me for the whole of my teaching career but when I could, I did. I’m still living life to the full/ Two fingers up to the beast.

You have my respect and admiration.


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