A New start

I have been so busy this Year whitch is such  a contrast to last Year because last christmas i was suffering from pneumonia and it was such a blur i don t really  remember much about it whitch  is a shame because i  love chritmas!!
I enjoyed going to middlesbrough to see the family i got to meet my new 2nd cousin who was born a few months ago! She was lovely!

Hope everyone has a lovely xmas xxxx

RRM2B study

Apologies for the long time away I’ve had difficulties logging in to my blog!

Last weekend I travelled to Newcastle and stayed in a hotel to do the RRM2B study as paid for by the lily foundation or research. It was a busy two days of testa. Before hand I wore a watch which recorded all my heart n sleep patterns and also a stool sample ( which wasn’t the easiest task to do haha)  ands my mum had to note down every poo and what I ate 4 weeks before the Study in Newcastle 

I arrived at the hospital with my parents and met the doctors.we went through the ins and outs of the test and consenting to do the study. Of course I couldn’t have the MRI scan because of my cochlear implant which was fine.

I had TEN vials of blood and although they were concentrated about my arms and the muscle mass. My right arm is bigger than my left .

We then sis some  exercise an lot of walking with Zimmer frame (my walking hasn’t been the same since I was in intensive care last year)  we did normal walking and fast walking to compare the two.

I then was given a mental test on a timer 

I was then asked to fast overnight and at the hospital did a urine test. That was the end of the tests and the docs  will do the tests again next year ,

 Fo now I earned a good rest!

 

Absence explained...

Sorry ive not updated my blog lately a lot has has happened over the lAst few months and im only just getting back in the social world as you would say.

In september my parents took me to newcastle as i hadnt been sleeping well and i began to have a unstoppable shake in my foot and have hallucinations  whitch was frightening for my family. Newcastle did tests which sho wed an infection  i dont know what it was but it lande me in intensive care for 10 days. I spent 3 weeks altogether in hospital before i was Home in huddersfield. A long tim

I have been given a CPAP machinę  to helps me if i stop breathing in my sleep which took a long time to  get used fo! I feel like darth vader!


Its only now im getting back in social media n blogging again,  it has been a long few months   Getting back to myself  and with the Help of charlie gard foundation and their generosity they have provided me with a elevating bed and comfy chair that helps me to get up.

My parents have also invested in a stairlift to Help me tackle the stairs at home.

The worst thing is im on a mash diet i have to wait til april where they will xray my swallowing ive had it done before so i should be ok