Making memories for our young family as we live with Motor Neurone & Fabry's Disease

New year, new hopes and dreams. Oh and challenges

January 22nd, 2018

It’s been a while since my last blog post.  Unfortunately there isn’t any amazing challenges or videos to report.

Instead the news is more about the challenges of living with motor neurone disease.  Thankfully in the last 6 months my condition appears to have remained fairly static, even minor improvement in kidney function and night time breathing.  I would like to say this is due to medical advice, however given I drink excessive amounts of energy drink and refuse my ventilation machine on a night, I have to say currently my actions infuriate my ventilation nurse and dietician, there again I was never one for rules or advice.

News on challenges is in.  The arrangements are being sorted for an abseil down gapping gyil pot hole in the Yorkshire dales with a drop of around 100m. My other challenge is more hush hush, it involves Guinness world records and some major technology oh and large balls, I’ll borrow some.

Having a good laugh is one of my reasons for being positive.  The last 3 or so months have been testing for us as a married couple and a family.  Especially over the festive period.  Basically we have been relying on my long term carer Thelma who I have to say has been fantastic, Pam has also been amazing even though she retired earlier last year she helped us out.  Due to having been two carers down for various reasons.  We receive direct payments, which mean we employ our own staff.  We previously tried agency but that wasn’t for us.  We have tried new staff but we haven’t had any luck. We have managed to find one new carer in the last few weeks and it appears to be working really well, fingers crossed.  Since I started writing this post, we have found another nice lady who is hopefully starting in a couple of weeks, I say hopefully as I don’t want to jinx it lol. The situation became very stressful especially for my amazing wife Liz.  It’s been a testing time for our relationship.   I feel particularly bad as right from the start I never wanted Liz to have to look after me despite our vows.

So tomorrow sees a trip to hospital for a supra pubic, its minor surgery, well anything down there is bound to be minor.  This should make life easier for everyone given I can have a number one anything up to 7 times in 24hrs.  More pit stops than a Le Mans race car.

So I bid you all adieu for now and see you on the other side of 24hrs in hospital.

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