Living with a moyamoya sufferer. - Real Mum story on MoM

15 Comments

& 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

Posted by sanjipanj, 30th April 2014

15 Comments

- - mom134803 said
  - 11 Sep 2016
    12:47 pm
Thanks for sharing your story !
Sending blessings to you and your husband.
Hope and pray the operations may go well ! Is it a revascularization surgery, where they bypass blocked arteries to help restore blood flow to his brain ?

- - dannsbuild said
  - 29 Sep 2015
    11:46 pm
Wishing the best for you both! Thanks so much for sharing this!

- - mom81879 said
  - 06 Sep 2015
    9:29 am
You’re such a wonderful person! I had never heard of this disease until I saw this. My thoughts and prayers are with you all

- - Missie said
  - 09 Sep 2014
    3:09 am
My love and thoughts go to you and Jason. How absolutely terrifying for you both. You sound like a strong and brave lady. Just know that while we are strangers on here we still care and think about you often xx

- - mom57522 said
  - 30 Aug 2014
    5:26 pm
How terrible. My husband suffered a stroke a few years ago an it was the scariest night of my life. I cannot imagine how hard it must be for the two you to have this ongoing.

- - BellaB said
  - 11 Jun 2014
    1:10 pm
I empathise with both of you. I had a stroke when my daughter was 4 weeks old – no risk factors,and the doctors dismiss it as “just bad luck”. I am terrified of it happening again, and can’t imagine what it must be like to live with repeated strokes. Good luck.

- - catgrrl3 said
  - 20 May 2014
    9:13 pm
wishing you all the best, both you and Jase, I hope to be able to keep up to date with your story, and you keep posting

- - sanjipanj said
  - 03 May 2014
    10:39 pm
Thank you all for your thoughts, support, care, means so much to have other mums to share things with. We went to a Moyamoya get together today to meet other sufferers of this disease. If it’s easier Jase has posted an article under disabilities in directory section, so proud of him. Thank you all again, this pic is our get together today xo

- - hopefullyheidi said
  - 03 May 2014
    12:56 pm
I really feel for you and Jase. What a horrible thing to go through. I wish you all the best of luck, come the time for the op. I will try and find Jase’s article, but like Aussiemum said, even though there are parts of the format I love it does seem tricky to find articles. Best of luck xxx

- - arcticwynta said
  - 01 May 2014
    1:07 am
my heart went out to you when I read your story and the thought of loosing a patner is scary to say the list. All the best to you and your Hubby

- - fruitwood said
  - 30 Apr 2014
    10:39 pm
Sending you & your family my best wishes xx I hope that everything goes well with the op.

- - aussiemum said
  - 30 Apr 2014
    9:12 pm
Oh, I really wish you strength and hope and good news in the coming weeks and months. I’ve never even heard of this disease so I learned something too. I will try to find the article that your man wrote (although with this new format, I’m finding it hard to follow up on posts from a few days ago). Good Luck Sandi. We’re always here if you need an electronic ear or virtual hug.

- - rhino333 said
  - 30 Apr 2014
    6:09 pm
Thankyou so much for sharing your story. I wish you and Jase all the best for his operations. Let us know how he goes

- - mel1 said
  - 30 Apr 2014
    3:58 pm
I remember your story. I feel for you and your partner. Life can be very tough sometimes. I’m glad the operation is close now. Hopefully it will be successful and the beginning of a better life for the both of you. I wish you all the best.

- - damish70 said
  - 30 Apr 2014
    3:56 pm
Oh Sandie you’re a pillar of strength to your man but even the strongest can crumble. I do hope there is someone to help & support you when you’re finding it hard to cope. Try a carers support group & make sure you can get some respite. I know the Govt doesn’t give you much home support but even if it an hour two a week it some to for you. Goodluck with Jase’s op xx