Blimey - it's August, where did the year go ? It seems like yesterday that it was Christmas and the severity of MS hadn't made itself fully known. Then the new year and the leg issues, the collapsing, needing a stick to stay upright, wheelchairs through airports and of course my sight going haywire unable to see properly or read anything, The Cog Fog where I could barely think straight and the terrifying bathroom urgency.
Now it's August, I've been without those pesky T and B cell parts of my Immune System that Lemtrada bound to and exploded for nearly 1/4 of a year life has pretty much returned to normal and I'm so grateful that if and when I was ever going to have MS, that is is now when something really can be done about it rather than 20 years ago when options were so very limited.
Circumstances, timings and just general bad luck mean that I haven' actually had an Oxygen Therapy since July 18th, visiting family up in west Yorkshire the weekend before last meant I missed Saturday, delays getting away from work and to BMSTC on Tuesday meant I couldn't get there on time and this weekend was 'Battle Proms at Highclere Castle'. Under normal circumstances I'd expect to feel pretty battered by now but to be honest I'm actually quite good (I'm booked in for tomorrow evening - I may yet come out feeling like a new woman and realise instead of 'hitting' the wall it fell gently on me while I wasn't looking)
It was our wedding anniversary on July 30th, we've been married for 4 years now. Traditional gifts include 'fruit and flowers' non traditional 'domestic appliances' - I went laterally thinking on the flowers theme with a painting by Doug Hyde called 'The Engine Room' which depicts the England Rugby team who all have the English Rose on their chest - flowers see - rather proud of me for that one :-). Gareth had been threatening to get me a 'Beer Fridge' which to be fair had it come looking like one of those nice backlit wine fridges would have been well received, not so much so if it was one of those horrid red sign written cubic nasty Budweiser jobs which I might have had to bop him on the head with. I was pretty much beside myself with excitement from the moment I saw the 'Kenwood' Sign on the side of the box. a Proper food processor which will do everything I want and if the blasted house sale and purchase ever completes I'll have a kitchen big enough that it can live on the countertop where it will be used often - I have the meat grinder attachment so I can make my own mince for burgers, sausages, Bolognese sauces etc . I know I'm a quite a lot weird but for a few moments there I genuinely sat there stroking the box and talking to it in my head - I need to get out more :-)
We went for Dinner at The Hand And Flowers in Marlow, 2** Michelin food courtesy of the lovely Tom Kerridge. The only 2** Michelin pub there is http://thehandandflowers.co.uk/about/. We have eaten here a few times at important stages in our relationship. It was the first 'Starred' place we ever went to, we had dinner there the night before Gareth left for Afghanistan in 2012 on his last tour with the Royal Signals and the British Army, and again the night after he got home from Afghanistan as well. It's where we went for lunch after I'd had the 3 day steroid drip last year when I was being diagnosed with MS too (although I didn't appreciate it too much as I'd had 2 lumbar punctures in 10 days and had a vacuum in my CSF and it felt like my brain was trying to detach itself from the inside of my scull and crawl down my spine - incredibly painful and I didn't make it to desert :-( ....) The food as always was beautiful, service impeccable and the experience unforgettable - I highly recommend this place to anyone who wants to save up a little for a very special occasion.
Battle Proms was amazing, great company with our amazing friends, epic planning by us ladies for food, chairs, gazebo's picnic blankets and drinks (1x Project Manager, 1x Financial Controller, 1x Financial Analyst - a day out for a picnic is well within all our skillsets) Lots of flag waving and British-ness with Classical Music, Napoleonic Cavalry Displays, and free cheese, biscuits and pickled onions courtesy of the mobile Branston Pickle caravan. The Grace Spitfire with a volley of shots from a vintage 13 pounder field gun was breathtaking. the main part of the musical schedule was :
200 years since the Battle of Waterloo, the Battle Proms is the only place to experience the ground-shaking drama of more than 200 replica Napoleonic cannons.
Our ‘first half’ finale is the rousing 1812 Overture by Tchaikovsky, performed in true Battle Proms style with a thunderous percussion of cannon fire, serving as a pyrotechnical warm up to our signature piece: Beethoven’s ‘Battle Symphony’.
The Battle Proms is proud to still be the only place in the world where you can hear this dramatic piece performed as Beethoven intended, with the full complement of 193 cannons, plus musket fire and fireworks, providing a unique and breath-taking musical spectacular.
I'm sure there are better video's people took on YouTube, but mine is here :-) https://www.youtube.com/watch?v=wxenbTDrNFc
So it's week 11 already, all improvements are holding.no relapse / concerns so far. If I get overly tired (like I did on Saturday) then I get wobbly in my legs and my eyesight goes a bit blurry, but to be honest I think that might just be what tired normally feels like for normal people and I shouldn't ever analyse it :-)
My check up with my Neurologist is on Thursday at 16:15 at Basingstoke hospital, I'm pretty sure a lot of the session with be Dr C poking me with that little plastic thing that's pointy on one end and fairly blunt on the other. Normally my response to that test pretty much anywhere but the upper half of my torso and head is 'nothing or - yes your touching me with it' no definition of pointy / ouchy / blunt etc. just an awareness of pressure inside the 'meat' part of me - random thought - I should probably shave my legs so she doesn't need a machete or a weed hacker to actually find my legs through the forest of hair covering them :-)
I'm sure Dr C will be exceedingly happy with my progress after treatment and how I'm looking after myself. I'm going to ask when I can get back into the MRI machine though .... I want to see head scans with 'the lights' out' :-)
The sun is shining, life is good and I have a lot of things to be thankful for.
Hope you're all taking care of yourselves and each other
Love, hugs and air kisses
It's been over 7 years since I started on my Lemtrada journey. It's a marathon not a sprint and in my case it's got a spin off show too now I'm on Ocrevus. Best decisions I could have made, no regrets, fight for yourself because you're the best person to do it This is normally updated weekly please subscribe so it will tell you when I've updated it
Monday, 3 August 2015
Week 11 mid week update
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