Thursday, 31 March 2016
Post Southampton Neuro Physiological appointment update.
The nerve tests were fine, just a little buzz and some interesting limb / thumb jumping which were for the most part quite amusing and interesting. The lets just poke a needle into some choice muscles in your arms then make you move them was ‘unpleasant’ to say the least, and bloody horrid if I’m being completely honest.
The gentleman who did them was lovely and answered all my silly questions and tolerated my whittering on so he gets my thanks for being kind and as gentle as he could be considering he was the one electrocuting and stabbing me.
The good news – apparently I don’t have carpal tunnel syndrome (I didn’t even know what that meant so here’s Dr Google’s version)
carpal tunnel syndrome
noun: carpal tunnel syndrome; noun: CTS
1. a painful condition of the hand and fingers caused by compression of a major nerve where it passes over the carpal bones through a passage at the front of the wrist. It may be caused by continual repetitive movements or by fluid retention.
I suspect had this been tested a month ago or so the case might have been somewhat different but thanks to the lovely Lizzie my Physio it’s all mended now Just whatever’s misfiring the nerves in my left hand and fingers is something sinister rather than simple and a report is going back to Dr C.
A little more sit back, wait on the results and see what they have to say.
Wednesday, 30 March 2016
Mini update on the Physio situation, I’ve been signed off with a review in 2 weeks’ time to check there are no further problems WOOHOO. My personal deadline for being ‘mended’ was tomorrow so that I went to Southampton for the Neuro Physiological stuff pain free and with no confusing stuff going on. The entire contingency in that plan was eaten up by falling down the stairs in the slippery socks the other week and getting a second shoulder injury but I made it.
So off I pop to Southampton tomorrow, quite nervous about what they’re going to do to me as I really have no idea, but I’m sure now no matter what it will all be fine
Oh and the new Dog walker was lovely, hoping she can start on Monday
Tuesday, 29 March 2016
The Easter weekend is over; it’s been lovely to spend time with my Aunt in Wales. Gareth and I got to enjoy our Christmas & Birthday present of the ‘Chefs Table with Wine Flights’ at Ynishir Hall. We lost track of the number of courses we were served, but we agreed they were all delicious with the exception of the cheese course which while perfectly edible was just a little too ‘blue’ for our liking.
The journey up to Wales on the Bank Holiday Friday which should have taken us 4 ½ hours ended up taking nearly 7 ½ with terrible traffic, hugely long detours round accidents and unplanned stops to let the dogs out to get some fresh air, stretch their legs and pee.
The journey was tiring and I had some back pain but that’s more the result of 7+ hours driving a Peugeot Estate Car than MS related. My no longer present MS symptoms remain as ever no longer present, and the physio has worked wonders on my shoulder problem so that I’m pretty much back to normal now.
Sunday was a much more civilised journey back home and topped out at the expected 4 ½ hours with just the one stop for pups and people constitutional’s. We got home to what can only be described as ‘Armageddon-esque’ weather. Storm ‘Katie’ had arrived and she was a mean bitch (if you’re thinking sounds like Katie Hopkins and that’s uncharitable you’re not alone I thought much the same) - anyway Katie-bitch didn’t manage to bring down the fences in the garden unlike her predecessors this year so she very spitefully knocked down the wall to the bakery car park at the end of our road – she knocked it down ‘into’ our road. Hence we were all trapped until the bricks and wreckage was cleared, she brought a tree down which blocked access to the local pub as well – panic stations we were trapped and now couldn’t get to the pub for a pint on foot either AARRGGHHHHH - it was all sorted by mid-afternoon and old Katie bless her cotton socks had buggered off to annoy someone else.
We have a new Dog walker coming to meet the pups this evening. We hope that works out well as without one we have to take it in turns to drive home and walk them in the working day which isn’t ideal for Gareth and I. We’ve also found a great chap who we’re hoping will do some ‘in home’ and ‘at park’ training with us as a top up for he Pup’s especially bearing in mind Amber-Dog is now the instigator of most barking and dashing at other people / dogs which winds Winston up.
On Thursday this week I’m back at Southampton Hospital for a Clinical Neuro Physiology Appointment and what I think might be Electricity conductivity testing. More related to the ‘prolapsed disc’ in my neck and it’s potentially pressing on a nerve bundle which is resulting in the sensation oddities in my left hand. I’m quite nervous about what they will say to be honest, it isn’t causing me pain, it’s just really annoying and annoying to me does not mean I want to undergo surgery of any kind. Surely if they just dangled me upside down on an inversion table the weight of my big head would stretch everything out in the opposite direction and allow this disc to pop back in where it should be (or maybe the weight of my big arse would pull my feet off EEEK)
7 weeks remaining now until round two, I’ve still not got my ‘official letter’ so just the lovely Margaret’s text confirming that so far. I’ve booked it with work regardless so it’s in the plans. Just need to don my ‘Wonder Woman’ outfit and save the world again in the interim with a rather interesting piece of network transmission and data centre migration in the interim to keep things interesting.
Tuesday, 22 March 2016
In a spectacularly epic fail I have managed to pick up Gareth’s Man Flu, I’m usually so good at not picking these things up but my germy plague monster husband has infected me. To say I’m not impressed is the understatement of the century and just as soon as my sinus’ re clear, I’m not sneezing or coughing I’m going to get my revenge on him. I swapped out Saturdays’ Oxygen Therapy in the HBOT tank for a Tuesday night ‘chair’ session which doesn’t involve being pressurised so for those of you with Tinnitus or other ear problem who don’t want to risk HBOT this is another option for you, just an oxygen tank, a mask and a comfy chair My body will only absorb about 60% of what it normally would but it is better than nothing.
My physio sessions have been going well, the impinged nerve and tennis elbow are now resolved, the only remaining thing to fix is the damaged ‘rotator cuff’ injury which I managed to acquire falling down the stairs the other week.
I’ve had a text from my MS nurse regarding the date for round 2 of Lemtrada saying I’m booked for May 18th again at Hotel Southampton. I guess it will be the same as last time I’ll have to confirm everything again on the actual day that there’s still a bed available for me. I have already asked if there will be more tests again this time and am waiting for an answer. The test from last time were 8 vials of blood for a number of reasons (including the AIDS test) urine samples to check I’m still not pregnant, chest x-ray to check I’ve still not got TB, MRI is already done unless they decide they want another and I’m REALLY hoping there’s no need for a Lumbar Puncture, or another smear for the second year in a row (women really don’t get to have any pride for these things)
We had another lovely quiet weekend as a prelude for the Easter Weekend, we’re off up to Wales to see Aunty Kathy with the dogs, we’re going to have our Christmas present from Kathy, the ‘Chef’s Table’ at the Michellin Starred Ynysir Hall, Looking forward very much to having a catch up, taking the dogs on lovely walks and just chilling out for a few days.
My March blood results are back and my lymphocytes seem to have stagnated a bit, presumably because they were rebalancing after my cold – so this month they stayed the same again BOOO – sort your lives out lymphocytes my team aren’t concerned about it though so I’m not going to dwell on it.
So what else is happening…..
I’ve gotten quite introspective of late, thinking about what I want out of life and my priorities right now. The sun is shining and it’s a beautiful day. Why am I sitting in an office looking out at the sunshine when I would rather be out in it? After all Vitamin D is great for people with MS surely I should be taking my free top up while it’s on offer? Well there’s the matter of money which is highly important, and stability also highly important. More I need to think about round 2 coming up how it might affect me (I might not get off scott free on round 2 with the fatigue etc) and there’s the money, oh yes and there’s the money. Sod it I’ve bought a lotto ticket for tonight’s Euro million’s it’s probably my best hope.
On the bright side the England Rugby Team not only managed to win the Six Nations, we did the Grand Slam too by winning it unbeaten. It made me feel so very proud of the team after the abysmal performance in the World Cup.
I watched the match through a never ending stream of tears, my family has always been great fans of Rugby Union, I even played on a boys team when I was a child (until they realised there was a girl on the pitch when I was 12/13 years old – boys are quite slow) To not be able to celebrate with my parents or my brother such a momentous win was just so painful and I suspect it’s always going to be that way.
Everything is good though MS wise – bring on round two and lets kick MS in the nuts a second time