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


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 machinÄ™  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 

14 May 2018

sleep study

last week i went to newcastle hospital to do a sleep study and EEG as i am having trouble with my short term memory loss prof Turrnbull said it was part of my mitochondrial disease RRM2B.
so that night in the hotel i did my sleep study witch was a gadget on my wrist and we were to drop it off the next morning 
The next day we did the EEG and spoke to prof Turnbull about how i was getting on with things we spoke about my balance as its getting worse! i stumble about like someone drunk but im finding walking with someone arms in arms. better  ive always had bad balance because of the deafness but its got worse 
As  the years go on i worry about the future i dont want to be confined to a wheelchair 24/7 i like my  independance.I know i have rachel to help me go out and about but its not the same as being on your own  ie i always need someone with me for the balance part.

we have found a lovely place called kirkwood hospice which do a drop in centre and i can do my arts and crafts there which is what i wanted a little group to do cross sthiching or knitting with ill keep you posted on how how that goes 

i am being referred back to PALS exercise group theat they do on wedsnesday;s so i can work on keeping my body moving rather than sitting at home all day 

9 April 2018

The land of nod...I f

 I finally got 9 htrs sleep n feel refreshed the sun was streaming through the blinds after a night of just watching tb no iPad n no phone,
Since I didn’t know what to do  with my hands so I did colouribg , I did some knitting na bad for my self n mum .
I’m still on the anti dressants n 3 sleeping laps later I finally felt tired n fell asleep!
I’m on skips fruit n yogurts  jellies so it goes down easy n I don’t cough it up
I still love tea but I’ve cut down because of the caffeine but I drink my vitamin bottle drink or orange juic
Other last few days without sleep I got high on nail varnish n I felt fuzzy I saw double I’m getting a new prescription at vision evPress  to help me see the needle eye when cross stitch but that’s not til Friday so I’ll do dot to dot
painting n I will knit the cushhiom case mum wants,
I would love to go back to college but my body isn’t strong enough so I though about the open university!
Watch this space

29 March 2018

Lack of sleep///

I have discovered that not sleeping is a big factor of a Mito crash . I never slept for 72 hours no fault of my own my body would just not give in . I got very erratic and doing things i wouldn't even think of doing, like going up and down the stairs a lot de cluttering at 3am in the morning , my memory went . Ignoring parental advise i had so much on my mind that i was making lists after lists 
my parents were getting angry and worried about me because i wasnt listending to them or anyone else for that matter i would only do what was on my mind and didnt care how and who i hurt during it.
i

No sleep...zzzz...

I haven’t been sleeping very well according my fit bit my heart rate resting is 95 a beat! I think it’s because I’m excited about tts becalm excited about future things! Like the lily foundation family eeekend n maybe go back to college and vollenteering! If that goes well maybe a new house and job?


I’ve been doing bracelets for Faye n her. Leigh’s network stalls , that has kept me busy as well as organizing my life n room.

Then maybe a holiday abroad somewhere flat so I can use my new walker n wheelchair!

I’m also getting good skin n nails thanks to antibiotics

I’m on sleeping tablets at the mo to help me relax n sleep a good well earned rest!

28 March 2018

I have not been sleeping very well a lately,l don’t know what has brought it on. I want to raise Moneyfor mitochondrial disease, so l have been making bracelets to sell at the lily foundation weekend.

22 March 2018

mental health ..

recently due to lack of sleep with my mitochondrial disease i have suffered a set back mentally .
i have have had to have my medication reviewed by Dr Hamad and i need to sleep i have had my dose of olanzapine increased to 15mg

i have an appointment for a  sleep study in April as lack of sleep is leaving me exhausted  hopefully they can come up with a cure for sleeplessness as its driving me insane. Leaving me sleeping for 3 to 5 hours a night.

i have also been given sleeping tablets only to be taken when necessary
i will report back after doing my sleep study at ;leeds st james.
bye for now

mental