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4 years ago

hmmm….feeling lonely about this reflection!

4 years ago

Don’t be lonely, @finchy , I’ve read the article and I found it well-written and putting forward an interesting view.

I used to be cynical, but now I’m a realist. There’s not a lot of difference between the two as a cynic and a realist both end up getting shafted. At least the realist knows when to brace themselves! 😉

4 years ago

interesting musings on our inability to live more than one life. I think wondering too much about the path we didn’t take is unhelpful at any stage and in any condition. this is what we have and we have to walk forward in a state of trusting ignorance. Good luck.

4 years ago

Very interesting, I feel my journey sounds just like yours, taking all sorts no benefit decided they know nothing so stopped it all for a couple of months, wishing I could go back couple yrs, start again with no drugs. But you can’t, so like life you just don’t know what’s round the corner, iv never taken to much notice of people I don’t know, as lots of them are like the idiots who think they are good on the Xfactor. Lol

4 years ago

What you sort of gloss over is your gut feeling about the competence or otherwise of your med team. I get the sense that you have ‘been done unto’. I’m fortunate enough to have been treated as a partner in the various discussions. I’ve certainly been listened to. The approach of my hospital has been a kind of tough love: making me face up to things, but supporting with options and suggestions. Outside the neuro team I was just lucky to find an alpha plus physio, who quickly shoehorned me into an exercise regime and taught me what I needed to know about muscles, tendons and so on. Together, these people (plus a good GP) have enabled me to get my head in the right place… because that’s really what defines how we cope. Think INVICTUS.

4 years ago

Thanks Stumbler….we seem to be of like minds!

Tabbycat…I think i was trying to do more than ‘muse’ and indulge in regrets. My main point in the article is that we should not be blinded by the phrase ‘evidence based’ research typically wrapped up in convoluted stats. People’s narratives such as those expressed in are of great value to medics as well as sufferers.

Cameron, I didnt wish to suggest that my current med team (consultant and ms nurse) are in any way lacking. They have made every effort to do the right thing for me. We are all on a voyage of learning and discovery.

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