Sometimes I forget what day it is, never mind that I have MS. And that’s been the case for the past week and a bit. Life has taken over, works been manic, I’ve been enjoying a burst of energy, minimal symptoms and having fun. Fun is important isn’t it, its way up there on my priority list anyway. And I’ve been dating, a bit successfully may I add (makes a change), but I’ll save that for later.
I’m actually sat on a plane writing this, we got to the airport, had the obligatory glass of fizz before boarding, then almost missed the flight, ended up being the last ones to board, …the demure sophisticated traveler look out the window, with hair now even bigger than it was (results of industrial Scouse style pin curls), resembling Tina Turner after telling my lovely fake tan lady to “keep on spraying!” and getting the “oh there’s always one isn’t there” look from all the sensible seated and buckled up passengers as I knock half of them out with my handbag I’ve been trying to hide from the check in desk cos it’s the same size as a 1997 Nissan Micra.
I then sit down, realising it’s not even 6am and the bubbles have gone to my head and then the safety demo starts and low and behold it’s only one of my best mates, who I was bridemaid for in Feb…I had to hide my face behind the seat because I got the giggles…there’s something about your mate who you’re used to downing jaegers with telling you how to blow your life jacket up with that little whistle, it really tickled me. I think you needed to be there.
And then just as I’m calming down and getting my breath back from my airport sprint, a lovely lady comes up to me, out of no where, and tells me she loves my blog! I was literally gobsmacked!! She had actually read it! This amazing women tells me how she has had a brain tumour, she come across my blog and loves it, we had a good gab and put the world to rights, needless to say we are meeting up for a coffee in the next few weeks. Isn’t it a weird and wonderful world!
So anyway, I’m on my way to Majorca for a dear friends wedding with some lovely friends. I’m gonna be soaking up that vitamin D, but steering clear of those nudist beaches, sorry Dad. Life’s pretty good when you look at the top half of the glass isn’t it.
I still haven’t made a decision on what treatment I am going to chose going forward, but I have been really fortunate to be connected by some lovely people, to an amazing woman in New York who also has MS and who has sent me some invaluable information on the best things I should be doing/trying. There’s also an opportunity for me to go over to NYC and meet with one of the top MS neurologists in the field. From what I have found so far, the Dr’s in this particular specialist centre have a much more proactive and “positive” approach to treatment, I don’t think I am going to need much persuasion to book that flight am I. And as promised, anything I learn I will share on here…
Also I have now joined my local MS branch and met with them and they are really behind the idea of me setting up a network for people with MS, when I have more details on this I’ll let you all know, but please do send me an email if you would interested or let anyone you know who you think may benefit. This won’t be any negative, wallowing support group, I want it to be an empowering and informative network where young people in similar stages of life dealing with MS have other people they can relate to…people who may still be working and trying to live life with their MS humming in the background… I am by no means tying to exclude anyone from this by the way, everyone is welcome, it’s just I have found support for this segment of people diagnosed with MS is non existent.
This next week is the first week since Jan of last year that I’m worried I’ll be pushing myself too much…I am away until Monday, then flying out to Dublin for a few days, then flying straight to 2 days of meetings. Previously my only concern would have been outfits and the weight of my suitcase (if anyone tells you that you start packing lighter the more you travel, they’re lying) it’s a new concern for me all this. I’m having to strategically plan time to just lie on a bed and stare at the ceiling. It annoys me and worries me a bit that when I do, do too much my body this last year has rebelled and I’ve had a relapse (body starts attacking brain causing damage)…so I’ve just got to be creative and listen to what it’s telling me. Easier said than done, and I’ve already had a few warnings off my nearest and dearest.
Anyway, time to get off this plane, which has been an eventfully journey in its self, I’ll let you know how the Vitamin D is doing…
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