Partly silly & partly serious, enjoy x
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Brilliant blog, Thanks for being so open about suh an embarrassing issue
Michelle xx.
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Really good read Sonia, thanks for that, and yes getting a diagnosis of ms before the Internet was extremely difficult to deal with.
To start with in the 80’s when I was dx, I had never heard of ms (embarrassed to admit that really) there was only steroids, which had no affect, no ms nurses, in fact, no support at all. The neuro told me there is no cure, go home, forget about it and get on with your life!! I really really tried that, but, unfortunately, ms wouldn’t let me forget about it…and the rest is history.
So whilst there is never a good time to get a diagnosis of ms, today there is support available, and that has to be a good thing…still wish they could find a cure though for us all, hey ho.
Pam x
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When my neuro said MS, my immediate reaction to myself was “oh s***, that’s the serious one!” - I knew ME could be bad but not permanently damaging
I was so glad to have the internet for so many reasons, contact with you all was a real bonus My sister has a friend with RRMS but I don’t know anyone with it, let alone PPMS. At the local MS therapy centre, there’s a lady who works there that used to work on the same department as me and a lady with MS that was on a team in the same area as me, both at the same company but it’s a big company, even Rob’s best man mentioned in his speech about us meeting at Reading’s biggest dating agency
Sonia x
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Well done Sonia - very good read. Look forward to your next one - improved neural pathways ?
Moyna xxx
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Yep, I have managed to shed a stone and have noticed a couple of funny changes after “mimic fasting” for a couple of months, Moreover, the weight has remained te same I’ve been back to normal for the clinical trial but said to my husband only about half an hour ago, I want to be back on it next week.
Sonia x
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Just read your bog on “to Pee or not to pee” To pee, or not to pee: that is the question - my MuSh
Good read, I will say again that the best thing I ever had was my supa pubic catheter I am so much better now my urine problems are under control. Anyone would be anxious about catheterization but for me it has been brilliant. The worries I had were just that worries and the actual act of first self cathetingj and the then indwelling were and finally supa pubic catheter has been a real blessing, I worried myself sick and in reality it was a piece of cake. If anyone reading this has bladder problems for heaven’s sake don’t suffer. Speak to your GP and believe me there is more to life than constantly worrying about peeling.XXX Don​
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Hello Sonia.
That is a very informative piece you have written (written well). I’m now feeling the need to share some of my pee history.
The internet has been the revolutionary catalyst for opening our eyes to see through the murk of this condition. After my first diagnosis, all I had to go on was the information the doctors gave me and anecdotal evidence from people who knew someone who knew someone with MS.
Like you I am reluctant to self catheterise. I’ve had a bit of a jolt from this forum about ensuring I’m hydrated so I now take measures to minimise the effects of any accidents. The radar key is my friend. I can move about shopping centres and railway stations etc with renewed confidence. If I could get my wheelchair to swagger I would. Then there is the little bag under my chair with emergency bottle and spare pads, cleansing foam, wipes and spare other things. It’s such a cool little tardis. On that oxymoron, I shall finish.
Best wishes, Steve.
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Thanks guys, I always appreciate your feedback x
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