I’m In bed today with stomach pains.  Me and A treated ourselves to fish and chips from the chippy last night which didn’t agree with me.   Hopefully I will get to the bottom of my stomach problems on Friday when I go for my scan.  I had a date tonight with Mr Grey and my best friend, fingers crossed my stomach will settle and I’ll be able to go.  But right now I feel pants…

Typically my blood pressure was fine last night when I did it.  I’ll check it again when I head over to my parents in a bit.  

A few people including A have asked what a Fistula is.  (This is the operation I will be having on the 13th or before if they have a cancellation, they said they will call me.)

A fistula is a vein surgically joined to an artery.  This will be in my left arm located at my elbow.  This allows the blood flow through my arm to increase for suitable dialysis access.  Dialysis will consist of two needles being inserted into my arm.  One needle will carry blood in a tube away from my body, into the machine to be cleaned and it will come back through the other needle (free of toxins) and back into my body. 

As well as spending most of my time at the hospital I have also been researching benefits (desperate times, desperate measures and all that.)   In January my salary went down to 50% and this month it has gone down to 0,  I am now receiving Statutory Sick pay of £87.55 a week.  I am not eligible for any other benefits (ESA, PIP or help with my mortgage).  I’m proud of what I have but not too proud to ask for help to keep what I have worked so hard to achieve.  

So until July I’ll have to scrimp and save. (I also have the rest of a holiday to pay for and the dialysis whilst I’m there.). Pay bills,  a mortgage, look after Buddy and  run a car (I will need this to get to and from dialysis).  I am going to have to rely completely on my family.   I am lucky I have them to fall back on, but should they really have to go into their savings/pensions to keep me maintained.   I’m not extravegant, I like the odd shopping trip (but always look for bargains) Me and A don’t really go out, we enjoy the odd meal out (pub grub) and our little luxury is sky tv (as we don’t go out much and for days I spend in bed it’s a godsend).  I don’t want to get rid of these little things in life, they are not extravagant but this situation might force my hand to. 

How would I cope without my family?  How do other people cope? I’m not saying poor me, I don’t want people to feel sorry for me but people have enough to worry about having a chronic disease without having to worry about how they are going to pay their bills or how they are going to afford their weekly shop (full of food that will help them keep as healthy as they can.) 
It just doesn’t make sense.  I didn’t choose this.   I would give anything to work and now that I can’t because of this disease I am punished.


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