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

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! 

13 December 2017

newcastle tests results

we had been out of hospital for 3 weeks now and the soft diet was driving me crazy! i was desperate for a cup of tea but i could only have fluids and fibre energy drinks through my fibre drinks and fluids through my PEG to keep my weight stable.

i went for an xray first at the main hospital and met a doctor about my eyes who said brow suspensions wouldnt work now on my eyel lids which i already knew deep down. i will just have to get used to looking dopey!

The next day we went to cresta clinic and saw catherine feeny who did my obs and had a chat about how i was getting on then we saw professor turnbull who told the results of the xray i had done. My left side was totally clear but my right side still had some white but he said physiotherapy will help with that but he doesnt want me to exert myself becuase i will only become ill again.  We talked about the possibility of me having CPAP at night time but he said im not at that stage yet which is good news. but he said i may need it in the future which i considered anyway and that carry on with the soft diet (BAH!) but im happy with how things are going. im continuing the physiotherapy at home and the stadium gym.

i can just look forward to christmas now!

30 October 2017


i have been on the soft food diet for a few weeks now and also having protein shakes through my PEG they don’t half make you feel bloated! i have been eating skips yogurts things that melt on your tounge but in the last week i have been a bit braver and tried harder foods such as brussels pate and tuc biscuits they went down my throat easier.

in a few weeks we have an appointment to see professor turnbull we weren’t due to see him til next year but as i was in hospital for pneumonia he wants to see us sooner and get an x-ray on my chest and blood tests.

11 October 2017

To dye for...

Having been home a week nil by mouth apart from formula drinks going through my PEG i was going crazy i wanted something to eat!! i hadn't  eaten for 3 weeks!

i was sooo glad that the time finally came for my appointment for the dye to down my throat to show that food was going down the right hole 

We had to go to Halifax as that was the only hospital that did it near us and they only do it once a week. Don't ask me why!

in the appointment they gave me a apron to put on just in case it got messy and i sat next to a x ray machine   (dont worry i took my cochlear implant processor off!)  they first fed me the dye on its own to check i could swallow liquids which went fine. They then  fed  they dye with some yogurt and then the dye with yogurt and bit of biscuit in. Although they were happy with them all going down the right hole ,they were worried that food sometimes "sat"  in my throat called "pooling"  and they were worried because sometimes it sits there too long that it could go down the wrong hole. They said as long as i had a drink every time i ate it SHOULD be fine but i have  to be careful not rush. 

They were happy for me to start having soft foods such as yogurts and scrambled eggs etc but not a big meal like fish and chips. they dont want me to go crazy eating everything! 

The motto is slow and steady wins the race! 

pneumonia round 2...

its been 3 weeks since i've been out of hospital suffering pneumonia again. i had good help in my local hospital the doctors were great knowing about mitochondrial disease  during my time in hospital they gave me neutralisers and oxygen to help my lungs clear which took over 2 weeks and i was nil by mouth the whole time because the doctors were worried about food and drink going in to my lungs  (i was gagging for a cup of tea!!)  all i could have was the apple juice i use to drink my anti depressants and little sips of water and spit it out they didnt want me to swallow it. I got so hungry i was jealous of other patients getting their cup of tea!!
i had the ocuupational therapists to help me get the junk of my lungs using a machine to improve my breathing and help me cough better (it involved me breathing in then sucking my air out which was scary because you feel like you cant breathe but it does the job!!) 
i also had help with walking again as i still felt weak on my legs after being bed ridden for a week and hooked up to antibiotics and water to hydrate me, the  hospital gave me a walker to take home which helped helped for the first few days til i got stronger.

The dietitians kept an eye on my wight by having my hooked up to formula going through my PEG and making sure i was nil by mouth.

After 2 weeks of being in hospital i was allowed home but i had to be nil by mouth for a further week as they were not sure it was safe for me to eat or drink til i had an appointment to show that food and drink were going down the right hole. 

2 October 2017

Mito spoils my tea......

Sadly i must have caught a bug when i was at the lily foundation weekend as i could not stop coughing and we decided to go to to A n E as it wasnt letting up we thought i might just get some antibiotics or something like that but i got admitted that night for pneumonia  they gave me antibiotics through a drip as well as fluids i was in hospital for a week but even at home im suffering as im nil by mouth til i see a speech therapist and i have a fluoroscopic swallowing exam to see if food and drink is going down the right way. The drs told me that it might happen again unless we got to see someone but im finding it frustrating that i cant eat or drink i miss my cup of tea but i have to wait another week to see this speech therapist so ill have to wait and see what happens  

the lily foundation family weekend...

last month me and the parents went to the lily foundation family weekend and had a fabulous time i got to meet new families who have a loved one who is suffering with mitochondrial disease as well as meeting old faces too. There were lots of information on stalls that would help people with mitochondrial disease 

3 August 2017

using the remote and mini mic...

this is the remote (left)  for the kanso you have to change it to  "mic mode" to use the "mini mic" i plug the mini mic in to Phone/lpod/ipod or ipad  its a bit of a learning curve using it! But once you know how to use it its brilliant so far ive listened to the radio on my phone!