Thursday, 26 March 2015

The Uncut Version – Things I haven’t spoken about before

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
So back to the newspaper job, I was offered the job which was amazing and they were incredibly understanding about my illness which made such a difference. I went and brought my new uniform and was very excited to start, I had spoken to them a few times in the meantime and was so looking forward to it. I had been feeling great since starting the challenge (obviously I didn’t really know how that was going to go), so I thought that I’d be fine to start the job. I was going somewhere with this and I have forgotten where!!!! Ahhhh!!

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! 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 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

No comments:

Post a comment