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& not just any sufferer, my man, my Jaseywase, the man I have loved since 1986. I posted my story here a few months, just prior to Christmas whilst Jason was in hospital having test after test, jab after jab, was poked, prodded, encountered endless nights, followed by rehab & therapy.

For those who haven’t read that story my man has moyamoya disease which is avery rare disease. It is multiple strokes, not enough blood flow to the brain. He has posted a story in disabilities for those who are interested. This disease mainly affects children which is why I prompted him to post his story on this site, I do urge you all to read please.

Jase has been home now from hospital for a few months now. After suffering many strokes prior too & during Christmas & the new year Jase was in & out of hospital. These last few months have been difficult, scary, terrifying in fact. We were initially told that Jase would have the first lot of his operation in Feb, but as we all know there’s usually a longer wait involved. Waiting has been very hard as to when his operation would be.

Well back track a few months ago, I was employed full time working in the legal industry as a receptionist however, I couldn’t commit to the hours as I was having too much time off, Jase is my number 1 priority so I decided, well I & work came to a decision it would be better if I was to resign so ultimately I didn’t really have a choice so resign I did. I remember it was an awful time full of mixed emotions but I can look back now & safely say it was a great decision as I would have lost it eventually.

After endless paperwork, I am now Jase’s carer, it doesn’t pay much but it helps esp with the concession card. It feels a bit weird not being in the workplace as it’s been years since I was a single mum, my children are all grown.

Money is tight, actually what money? Participated in a couple of market research groups which have kept us afloat as has Jase (very proud of him). But it’s hard to make ends meet.

To say our life has changed is somewhat as an understatement. Our days are filled with doctors appointments, shopping for this & that, lots of rests as Jase gets very tired.

Our days are spent together, a good thing we get along very well, extremely well however, I do feel a couple of days out of the home would be helpful for me.

I’ve been on anti depressants since all this came about but now after trying the holistic aporoach I’m also on sleeping tablets & quite strong ones from what I know (Imovane) which they don’t always help, combined with restless legs & my mind going over & over its hard to get to sleep & when I do I’m waking up every hour or 2.

Anyway, we finally received the news, first op on 8th May, I should be sooooo pleased the waiting is over but I’m more scarred than ever, I can’t lose this man, my one & only true love. I need to support him because I know he is so scared, how much I’ll never know as he’s skull is going to be cut open, twice. I’d be terrified if I was in his shoes but it’s hard to look strong even when I try I get teary, I’m one of those people who get teary very easily & we are so very close, he can read my emotions anyway, it’s not hard lol.

That’s my story & I feel somewhat a little relieved for sharing it if that makes sense.

Thank you for taking the time to read.

Live Sandi xo

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Posted by sanjipanj, 30th April 2014