My latest blog if you have a few spare minutes. I usually mainly post in the PPMS section but it was the fifth anniversary of my diagnosis yesterday, so I’ve been thinking long and hard about it and I cannot be the denial queen forever! But I also need to say a huge thanks to so many of you that have helped me keep a hold on reality for this long
Thanks for the blog link. MS is a nightmare tenant and no mistake. Those milestones, when you realise that it’s been messing up your place for five years or ten or twenty or whatever can indeed be very sobering, even when MS has caused less havoc than it has in your case.
I had my 21 years anniversary in January. Lucky me, I’ve got the ‘Key of the Door’.
Well done for keeping your spirits up Sonia. But just don’t forget, it’s OK to hate MS, and your diagnosis, as well as all that the bas*ard disease has stolen from you. Down days are just part of the loveliness that is having MS. So remember, you’re bound to get depressed sometimes. We all do.
hi sonia man it’s a mean old barsteward this ms! it’s my 10th anniversary in october and also my 60th birthday. it makes me sad to read about my pole dancing friend going through this c*ap. are you still listening to nine inch nails? play it loud and let yourself feel alive. carole xx
Hi Nina you have mentioned the high cost of fampridine in your blog. I do not know which London neurologist you are under but National Neurology, Queens Square, are offering this drug if you meet their criteria. Sue
Thank you all, talking here always helps give you a boost!
Today was a pretty miraculous day to be honest, I had my first appointment with Wheelchair services and my GP had warned me upfront that I should look at what charity was available as they generally wiggled out of providing chairs. It kind of proved it was time really, as despite the form warning of a minimum hour appointment and a 6-10 week wait for a chair - we arrived and within a few minutes he was explaining to Rob about all the adjustments that could be made etc. So 25 mins after the appointed time, we were already in the car on our way home with a chair in the boot I suspect it helped that I didn’t anything hi-tech, just a manual chair.
They were also very happy to accept my cheap and cheerful effort, they said they’d service it and it’d be used on a ward so that was a good feeling too. My bladder is delighted that I now have a comfy seat that fits me.