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


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

18 February 2018

Nail.art n all random stuff...

Check it out I have set up a nail art page on FB as I got some nail art pens n foils from the craft fair can't wait to try them out!

Mostly been cross stitching knitting n going to gym for physio I've got got homework to do! Justine keeps me busy !!

17 February 2018

Getting there...

I am getting on well with physio and life itself muscles are getting stronger and still going to gym for physio and im also going for  0 min walks with dad to the postbox  

prof turnbull is keeping an eye on me as he was worried about my pneumonia but i am feeling much better than i was less breathless than i was i am going to a sleep clinic in newcastle in march and mums still worried about my brain and my meds!

i am keeping busy by doing 5 mins breathing between watching tv 

i am also looking forward to doing my stitches that i bought at the craft fair lots to do!

i am in touch with dave from ci group on facebook seeing if we can do a `0th anniversary of  family meet up when we first met in Huddersfield 

ALSO  going to the lily foundation family meet up with susan warnock and faye wiley will be good to see them all again i had fun last year despite catching a cold but this time will be spring we can chill outside as well!
the group is going well too and im going to start a nail art group with pics of nail art! 

thats all for now

20 January 2018

Moving on up....

Since January started things have steadily going up! My flu and pnuemonia has got better and I'm feeling better now I've got my lungs back . The physio is going well and she's working me hard but not to the point I overexert myself! My physio has shown my carer Rachel the exercises I need to do so there will be no slacking! They have both being motivating me which is good so I know I'm doing well. 
Diet is going ok I'm still on a soft diet and having one or two protein shakes a day I switched to fibre because my stomach just got bunged up. I got a cd player for Christmas so I'm gonna try n listen to some CDs parents got me . Dad managed (after 2 days!!)  So IL  dig out my mic lead and try and listen to some! I still need to try out the phone clip which o
I don't use much as I either txt or WhatsApp on video. 
I started penpaling again but to less people as it got too stressful keeping up with them all I had people asking their letter their letter stressfulI.I thought we had all the time in the world to them .After all post is slow!! 
I'm  also doing knitting and cross stitch and tapestry I find it relaxing. 
I'm going to a art and craft fair in February so I've got that to look forward to!