So I have just completed job number 8 and it suddenly occurred
to me that there is a whole side to my challenge that I haven’t really spoken
about – how it’s been affected by my disorder. This wasn’t a conscious decision,
but now that I am so much better I prefer not to talk about it - having had to
discuss it almost every day for a year and a half! I was also worried that I
didn’t want to come across as looking for the sympathy vote (no violins
please!), but I then realised part of the reason I came up with this challenge
was to raise awareness of my condition and to help people understand it (which
will be a bit tricky if I don’t talk about it!) So here it goes…
The first challenge that I am constantly up against is the fact
that I have a memory like a goldfish (although I think even to say a 10 second
memory can at times be generous!). Thankfully this week Darren (my KORE
therapist) has tried a few different things with me, I have also set an alarm
on my phone so that I remember to meditate twice a day (I kept forgetting in
the evenings!). This has led to a slight improvement in my memory which has
made a huge difference!
I get a lot of messages every week with people offering me
jobs - quite frankly I am overwhelmed by the support and kindness of people, it’s
amazing! I’m also e-mailing people asking for jobs whilst also trying to
co-ordinate non challenge related life! It can be pretty tricky when you can’t
remember anything! The problem is things disappear from my mind so fast that I
don’t even have time to write them down (on many occasions I have forgotten to
reply to texts from friends, thankfully they have been so understanding!), this
also means that I will forget to reply to people who message me about my
challenge, then I remember, then I forget, then I remember…you get the idea! This
will go on and on until finally I have to spend a while going through my inbox
to see who I need to reply to. I feel awful as people are being so generous and
it looks like I’m ignoring them. I have worked as an administrator for 2 years,
so organisation was something I was always really good at… not anymore! If
anyone has any ideas that might help please send me a message as I haven’t
mastered it yet! Even putting everything in a diary I then forget to look at it!
I have also had messages from people who have the same
disorder as me or something similar which I feel so privileged! There isn’t a
cure for Migraine Variant Balance Disorder with modern medicine, but I have
pretty much found one with meditation and KORE therapy (I have gone from 8
tablets to 0!!). It’s just the best feeling when people contact me to ask about
it, as I know how awful their feeling and how amazing they can feel in a
relatively short space of time! So far I have physically met one person with
the same thing, she has now started KORE therapy and is 95% better after a few
weeks – how fantastic is that! I am meeting with another lady next week, and I
just can’t wait to help her! I am quite nervous though, as having the memory
that I do at the moment, I often forget what symptoms I had (I know how
ridiculous!) – Which can make comparing notes rather tricky! Most weeks now I
seem to keep coming into contact with someone that can benefit from KORE
therapy and meditation…the universe certainly works in mysterious ways!
So the next thing that has happened (that I have realised!) which
is very bizarre is that I couldn’t tell the time for a week! I had to be at the
job at the florist at 9.30am and wanted to leave 15 minutes to get there to
make sure I was early, so in my head it made complete sense that if I left at
9.45am I would be there in plenty of time. I checked the time over and over, as
I don’t like to be late – then at 9.25am I suddenly realised that I definitely wouldn’t
be early leaving after I was meant to start!! I can confirm I was late! #Headinhands
Later on that week I had an interview for a paid job with
the newspaper that I worked at for job #2 of the challenge (more about that in
a minute). The meeting was at 1pm, and I wanted to leave 45 minutes travel time
– again so that I would have plenty of time. I certainly did that! I went
downstairs to say goodbye to my mum all excited and ready to go. She asked
where I was going, which I thought was weird as she knew I was meeting the
paper at 1pm…turns out it was 11.20am – maybe that was a little too keen! That
really upset me, which I know sounds really weird but the thing with this
illness is you think you’ve beaten it then it suddenly grabs you and brings you
down a peg or two!
 |
| The lovely peeps at job #2 |
Ah that’s it! As the start date got nearer and nearer I was
feeling more and more tense, got more and more unwell and just knew it was the
wrong thing to do. I kept ignoring those feelings, as it’s such an amazing
opportunity and I’d be crazy to turn it down but deep down I knew it was just
too much. I then had a sudden epiphany if you like, that everything happens for
a reason - I genuinely think that was a test to see if I have learnt anything
over the past year and a half! I keep saying that my health is the most
important thing blah blah blah but when it came down to it, it was all words! I
was doing exactly what had got me in this predicament in the first place - Saying
yes to every opportunity even though I simply don’t have the time!
To give you an idea, I volunteer one day a week for
Porchlight - there was no way I was giving this up, as they have helped me so much when I was really poorly, so I wasn’t just going to up and leave as soon as I was fit
again! Then I do a minimum of one job for my challenge each week sometimes more,
plus all the admin that goes with it - there’s more than you might think (to
give you an idea, this blog has taken about 2 hours to write!). I definitely wasn’t
giving this up either, it’s the most incredible journey already and I’ve only
just started! I also work at my mums pub, doing all the online marketing, the
staff wages and now arranging a monthly village market - I used to hate working
for family as I wanted to make my own way in the world, but now I love that I
get to spend so much time with them (I finally have my priorities straight!),
so unfortunately this one couldn’t go either!...so that’s 4 days gone! Plus I
am starting university in September which is 2 evenings per week plus
coursework - obviously not giving up that opportunity. I have KORE therapy once
a week - again no way I was going to stop that! In addition to that I was then
taking on a 3 day job which as you can see leaves 0 days to recuperate!
 |
| Some of the Porchlight crew! |
When I look at it like that I can now see why I was a little
stressed about starting! I really had
one of two options – melt my brain a little bit more or turn down the job! I
have found that in today’s society it’s really hard to put your health first, it’s
just not the done thing! I call it the get on with it and it will go away
attitude – I tried that and it didn’t work. One thing I am certain of is that it may take
some practice but my health is always my priority now...at the end of the day I
am the one who has to live with the consequences of my decisions – and I don’t
think I would forgive myself if I damaged my brain further. I have really
realised that without your health you just don’t have a life! It’s funny, I got
a magazine about meditation that had a quote on one of the first pages that
really hit home, it was a quote from a Neurologist that said “today we know
that everything we do, and every experience we have, actually changes the brain”
– I certainly changed mine and not for the better!
Anyway rant over (that was aimed at myself rather than
anyone else!). I’m actually getting a tattoo now which says in Arabic – “I
suffered, I changed, I learnt” so that I never forget what this disorder has
taught me! As I have said before, I don’t regret a second (even though I didn’t
have much choice in the matter!) – I have learnt so many things from this
disorder that have changed my life in a good way.
Since the newspaper incident a few weeks ago I had a little
set back - my memory got worse (although as I said this week it’s improved
yay!), I was so tired that I was having to sleep in the middle of the day and
my floatyness (I know that isn’t a word!), migraines and headaches came back. So
much so that last week I couldn’t do any jobs on my list, and I spent it mostly
snoozing! This week I worked an evening, I will be back to normal in no time! I
think I was a bit like a caged lion that had been set free and did a bit too
much too soon! But I will get there J
I have taken note of my epiphany and have even changed the
date of my army day so that it is a pleasurable experience rather than making
myself ill. Again I have no idea why I thought it was necessary to do an army
assort course 2 months after starting to get better, especially when my neurologist
has said not to exert myself! I will learn one day!
Wow, I feel like all I have done is talk about myself! I
hope you found it interesting, and that it hasn’t been too boring.
Thank you for taking the time to read my blog, if you
enjoyed I would be so grateful if you could share it to help spread the word!
Thank you
Bobbie J
xxxx
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