Counter productive ?

I was diagnosed with PPMS more than 20 years ago after many years of fatigue and other issues which turned into serious walking difficulties and along with all the other issues , remains with me today .

I always read the MS Society magazine but am confused by the contrary messages given out by the various articles . This quarter we have sufferers crewing yachts around the World , we have another doing an Ironman course , both of which may prove beyond the endurance of most healthy persons but all credit to them them for giving it a go. Countering this we have the Photographer who is now able to shoot using mouth control and articles from many others including Moaning Mike that highlights the difficulties many sufferers have to contend with .

We also have an article on Misdiagnosis . And putting MS on the Map . Yet another article wants to give the public an understanding of what it`s like to live with the condition .

Is it really possible to get the ideal message across when the published articles can only increase confusion as to what MS really means .

It needs to be borne in mind how long you,ve had MS and which type you have !! (…e.g. when I was first diagnosed it was with RRMS and I was able to run and play football during remissions for the first 10 years.

After that, the MS had progressed into SPMS and physical ability continues to deteriorate to this day. I can no longer run (…just about manage to walk) and playing football - or any sport - is now completely beyond me.

Back in the year 2000, I was as physically able as I was pre-MS. Now, most things are a struggle. I can’t write (no power or control in hand - so can’t even manipulate a pen), can’t speak without physical effort, even find it tremendously difficult to wipe my rse after a sht. Sorry to get somewhat basic there, but sometimes I get really cross by the publicity that barely-affected people seem to be given.

No wonder so many people just don’t realise how debilitating this condition can be (…and I was one of them myself a few years ago) !!!

Apologies Folks, but needed to vent !



I think if anything that these articles serve to show how MS is so different for many of us, hence the hashtag used on the web #notwothesame.

I’m involved in a local support group and whilst we have one thing in common i.e. a label of MS, I’ve yet to meet after 25 yrs of living with the condition and being pro-active in the MS community, anyone with exactly the same symptoms, exactly the same amount of pain or pain threshold, nor the same mobility problems.

That’s how fickle is the nature of the condition.

Eiona :slight_smile:

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