Welcome To My Blog...

This blog follows my journey of 2 different cochlear implants and my condition: Multiple mitochondrial DNA deletions I have started this blog 15 yrs too late but ill try my best to fit it all in! I have packed a lot of medical jargon into my life since I was 8.

There has been happiness and tears but I've come through it all with my family and my friends.I'm profoundly deaf as a result of a condition called Multiple mitochondrial DNA deletions or mitochondrial disease RRM2B as my professor Sir Dough Turnbull calls it! I have had since birth but I didn't find out this til I was 19. I have had 2 cochlear implants (at the age of 8 and then i lost the 1st cochlear implant in my right ear after 7 years due to a bad, accruing ear infection (which I couldnt fight off because of my mitochondrial condition) at the age of 15 and had a 2nd one implanted in my left ear that same year which I have now.

My Story


1 February 2022

Happy new years 2022

In 2021. There wasn’t much to talk about with the coronavirus about, I managed  to finish the exercises trial at Newcastle and hopefully with good results!


2022

I have just completed my own personal challenge this year whitch was a sit down cycle challenge I decided to do it for Leigh’s network which was founded by my mito friend Faye Wylie I decided to want £100 and as the month went on it began to go up up and up and by the end of the month by the genorosity of friends and family i got up to £415!  Whitch will go a long way for the charity!

I’m now looking  forward to getting a Cochlear implan processor the kanso 2! 

24 December 2021

Merry Christmas

Well it’s been an eventful 2 years with covid!   I’ve had my two covid jabs and recently the booster with any luck next year will b better I’ve got a lot to look forward to in 2022 I’ve got my cochlear implants upgrade to Kanso 2 which I’m looking forward to! And lots more lily get togethers COVID permitting! 

 Merry Christmas and a happy new year 


23 August 2021

Diabetes type 2

Over the last few years drs have been confused why my blood sugars are up but didn’t have diabetes! I was a  mystery one dr said my blood sugars was were high I should be sick!! But this year. Things caught up and I was finally diagnosed with diabetes type 2 I wasn’t really surprised with my blood sugars being high  but my dad was on the ball because he has diabetes type 2 as well so he was  doing pricks in my thumbs and testing my blood sugars  and making sure I’m ok,  apparently it’s common to get mito diabetes’s type 2  in my case the nutrition drinks I was drinking were high in sugar so I’ve been cut down to 2 a day and an extra pill in the mito cocktail of pills. I’ve become an expert at pill swallowing haha 

4 January 2021

2021?

Happy new year to my readers 
There's not much I could say other than 2020 was a crappy year with covid! Hopefully with the vaccine coming out that 2021 will b a better year!I haven't really left the house since march apart from going to dentist and a drs appointment!  

30 July 2020

Convid 19

 
The country uk has been on lockdown for 3 months n only now the prime minister has  told us to wear a mask in shops and hospitals and carehomes for safety 

I have not left my house other than to go in the garden for 3 months  it hasnt been too bad i kępt busy doing cross stitching and knitting n now the isolation is coming to abd end on 1st August n I’m looking forward to my 35th birthday!



22 February 2020

Breathing appointment

I forgot to update my Leeds appointment where I go for my breathing appointments. The doc was super happy about my breathing since I starting using my breathing mask mask overnight. (did imention I have a breathing mask machine and cough machine in my room now??)anyway It took me a whole while getting used to wearing the mask overnight but 6 months on im used to it now. I give myself one day off from it n now my breathing dr has allows me to use the cough machine once a week which is good because I hate it!   I have tried to get back to gym but my balance is getting really rubbish since coming out of intensive care  so I try n use the treadmill for about 15 minutes to exercise my legs n walking. It might hit sound like much hit its a mile stone for someone with mitochondrial disease!
I have the mitochondria disease euromit coming up in March which will be interesting! 

14 December 2019

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

19 July 2019

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!

 

16 March 2019

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


16 June 2018

coughing....

Ive started coughing when i drink fluids so i saw  a speech and language nurse in my home town she has given me some some powdery meds to thicken my fluids hopefully it will help