Monday 2 November 2015

Week 24 - Time flies when you're doing great.

Blimey - in 2 weeks it will have been 6 months since my treatment EEEEEK
I want to say I don't know where the time has gone, but I do - It just seems so very fast. Perhaps that's the thing with getting older, I remember at school it seemed like forever between holidays and lets face it we got a week or 2 off every 6 weeks back then. Christmas's and Birthdays seemed to take an eternity to arrive and now it feels like they pretty much come back to back (my birthday is March 3rd) The only thing that seems to take forever these days is my mobile contract to be up so I can get a shiny new toy.
So much has happened in life as well as response to the treatment and time really has flown by.
Tediously I'm still doing brilliantly, all of my improvements are still holding


I thought for new readers it was time to post a 'before and now' update of my MS with some updates. So here it is I'm stealing my own posts - this was from a month after treatment with some editing to make it more current :-)


What I had before that I now Do NOT have :
  • Cog-fog - Gone - The oxygen therapy helped with this greatly my brain is now clear (well as clear as it's ever going to get)
  • Constant Foot drop Gone - If I'm really tired this done reappear a little but rest sorts it out
  • Spaghetti leg Gone - This is my name for 'whole leg drop' - the extreme of foot drop that had me in a wheelchair coming back from Milan in April - If I really overdo it and walk too much occasionally I can feel my leg getting wobbly so I slow down
  • Tiredness  - Gone - The oxygen therapy helped with this, I have tried never to call this Fatigue - MS has NEVER stopped me getting up and getting on with things. I regard Fatigue as an extreme where the exhaustion stops you in your tracks makes going on impossible to achieve not just bloody hard, so I call what I have tiredness - My medical team smile at me in that 'yes dear' way when I explain this so I'm probably playing it down
  • Bathroom Urgency - Gone - And oh boy it's nice not to hear that screaming claxon in my head yelling 'Go NOW you're about to embarrass yourself'
  • Optic Neuritis - Gone - My vision has settled down completely now. the pain in my eyes and loss of the ability to see anything in detail (like words on a page) has all returned to being just as rubbish as it's always been my whole life. My eyes might be dreadful, but I can drive, read and live normally the thought of losing that was horrific to me
  • Lack of balance - Gone - .I posted my post treatment physio assessment a couple of months back with the pre-treatment one as a comparison. The lovely Marnie was staggered, it was like night and day I could balance with my eyes open and closed, no toppling sideways and needing railings to hang on to. Now I'm just as clumsy as I always was before MS :-)
  • Sensation loss - Gone - Before treatment the ONLY parts of me that actually had skin sensation was my right arm and from my boobs to the top of my head. Everything has now returned to normal with the exception of my thumb and first 2 fingers of my left hand and the palm bit that joins them. I still have no skin sensation there, but I do have the electric shock / worms under the skin sensation inside when I use that hand.- If that's the only thing that remains I'm okay with that to be honest.
I don't feel like I 'have' MS any more. I'm not deluded enough to think it's cured / all gone. I know I still have to be careful with energy levels, stress, sleep, diet (update on that down below) exercise and general living healthily. But I can forget about MS these days for a lot of the time rather than being aware of it  - to quote the song - 'every step I take, every move I make'
So the diet........
Today is Day 5, we're both doing really well, over the weekend we've been scarily alcohol free . Not even a sneaky nightcap for either of us. Just the Cambridge products and the Low Carb / Carb Free evening meal. We've drunk about 50 gallons of water and goodness knows how much tea between us and so far we haven't gone completely bonkers. I think I'm on target for about half a stone loss this week (first week is usually all that retained water that I'm carrying so it's not 'real' loss but I don't care .... I'll take that half stone even if it is just water)
Life and stuff ....
We're off to the NEC on the 27th for The Good Food Show (diet will be on hold over that weekend) the tickets have been booked for months and I'm really looking forward to it. We didn't go last year, mostly because my symptoms were so bad I was afraid I'd need to have a mobility chair or after an hour I'd be useless and unable to get to the mobility place to get a chair (it's a long way from the halls) I just let the show slide past last year and didn't mention it, I didn't want to admit things were getting that bad. This year I'm confident I'm going to love every minute.
We're also doing my Nana and my brother Ian's ashes, we will all gather in Solihull to put them where we put Dad and then Mum's ashes, so they're all together. That's going to be so very hard emotionally especially for Ian's wife :-(
After that on Saturday morning we will drive up to Halifax to see Gareth's Parents for a night then back down from Halifax to Reading on the Sunday
(remember what I said earlier about resting, taking care of myself sleeping well ...... 3 nights, 3 beds, a day walking round the NEC, 500 miles of driving and another very emotionally draining event will make it appear like my symptoms are flaring or a potential relapse - well I will pay the price for that weekend the first week of December because I'm going to be completely shattered) - Forewarned is forearmed and that I will do it is something I will celebrate (in a resting way) because last year I couldn't go and this year I can :-)
Life is great, we love our new home, the cats are finally tolerating the dogs (if not actually liking them much)