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


31 December 2014

happy new year

a new year is brewing it has been good for me (apart from the anxiety) but over all its been good  i had a good holiday in south wales with my parents ive made new friends via my fb mito group which is going rather well i couldnt imagine how many people were gonna join but we have nearly 900 members all helping one another or just being there to know what we mito warriors  are going through. i shall leave it there happy new year and hope its a healthy 2015 for you all x

22 December 2014

merry xmas

to my followers and fellow blogger i would like to wish you all a happy christmas and a healthy new year hope it will be a good 2015!

9 December 2014

wow time flies...

wow how time flies since i was diagnosed 10 years ago in 2004 it was this time of months when i was misdiagnosed with mystmeia  gravis and i still cant spell it! they started me on treatment on it thinking i had that i was so depressed over that christmas in 2003 thinking my life was over. it wasnt over at all but had to make a few life changes and some meds to keep my mito stable 
nowdays i dont think mito disease is NOT a death sentence its always the infections we catch that harms us and i can still live with  it. i have my family and carers and brilliant doctors that cant do enough for me and they make life easier.Thank you 

26 November 2014

xmas shopping...

today i went sxmas hopping with my helper friend which was good coz it was good to get out and do something for my mental health even if i dont like it much but it does me the world of good to get some fresh air even if its gloomy outside!

22 November 2014

getting there...

as my title says i am getting there and i hope il be back to my old self over xmas. its still so hard having anxiety though as no day is the same although i wish it was .i took a big step getting back to my self though and went xmas clothes shopping with my mum and dad and i have a nice outfit for xmas dayso thats one thing towards getting better.

18 November 2014

update...

i am to see a  physiologist referred by my mental doctors  to get down to the  bottom of my anxiety i hope it helps

16 November 2014

slowly getting there...

im slowly getting better from my anxiety and hoping to be better for xmas  

12 October 2014

i am having trouble with anexity  at the moment

20 September 2014

new meds...

im on anti depressants and anxiety meds to keep me sane

4 August 2014

i havent been up to much since i last saw my old carer victoria but now we are getting to know a new carer called rachel she is nice

28 May 2014

busy busy zzz...

sorry all for not updating ive been so busy! today my right eye has been watering really badly so i couldnt do my sewing. i opted to do my knitting instead im knitting some bags see how they turn out!!  Early night for me after britains got talent

trolls...

i get so fed up of these "internet trolls" do they not have anything better to do with their lives other than upsetting people through a computer screen?? that makes them cowards! 
im not about to step down for something i believe in just coz someone called me "ugly" "lazy!" "tired" "on drugs" i am NONE of those things im certainly not lazy! i go to gym once a week and try and hang out with my friends as much as they have free time from their jobs. 
im not about to step down and let them win im not depressed or sad about my disease ive adapted to it and thats how i get on with my life!

25 May 2014

jumpy meds...

The meds im on at night time to help me sleep is making me a bit restless when i take it after 9pm. it makes me all sqiggly and writggling about! and i cant stop it!! i just need to do it and it mostly means i should get ready for sleep time!! 

23 May 2014

busy busy bee...

i have been busy knitting bags for charity work and also doing my nail art! knitting is relaxing for me and ive been doing it for years now ever since mrs small used to babysit me and she taught me how. i wish she was here on earth to show me how to crotchet! its becoming annoying now! crotchet is supposed to be EASIER than knitting! Thats why its so annoying! i hope to get the hang off it soon!
life is good at the moment with my meds change!


17 May 2014

sunshine at last...

Today has been gorgeous weather! im so happy to be able to go out and sit in the garden and relax!

16 May 2014

craft making....

i am using my crafty expertise to hopefully raise money for mito research i have been busy knittong bags and doing cross stitch bags hope ppl like them

12 May 2014

Newcastle results...

wow this is the first time ive had to sit down and write a blog!! so he re goes

we went travelled up to middlesbrough first to drop in on family my nana and aunts and cousins esp little cutie 2nd cuz evie! she turned 2 on the day we went up she looked so sweet!! :) we stayed 2 hrs to catch up and then travelled to newcastle a premier inn in the city centre.  my nurse came on the monday and did my button and changed it from 3 months to 4 months since im only using it for meds not feeds 

the next day we traveled to newcastle victoria hospital and found somewhere to park (parking is a nightmare in newcastle ciry centre!!) we headed to the cafe first coz we were hungry and then we went on to the eye department luckily it was empty so didnt have long to wait! my eye doc who did my eyelid surgery 2 years ago was happy with my eyes although he said i have to keep them moisturised as they dry out quickly but over all he was happy and dont need to see him for another yr 

we then got myself a wheelchair as the next appointment was on the other side of the hospital and a long way to walk!!! We waited for 15 mins before we were called in and saw prof turnbull and my dietitian. we discussed what had been going on with everything like my diet and overall health which was good. they weight and heigh me although i wasnt happy about my pounds ive put on!! i blame crisps!! need to get back to the gym! 
Prof turnbull was more concerned about my mental health he wants me to be social and get out there be independence he sent me next door with a doctor and we did a mental tick test and hopefully that will show im of sound mind!!  while i was doing that prof turnbull was on the phone to my GP to make sure they get my meds right and are taking care of me then i went back in with prof turnbull and we had a chat about what i like doing and what i want to do he also gave me the results of the blood tests they took in December he told me they need to more investigation but he says what ever i have is very rare and im to keep calling mito MULTIPLE deletions for now til we find out exactly what i have! 

apart from that i have been crafting! :D i will put some pics up soon! 

11 April 2014

Check out @4Lilyfoundation's Tweet: https://twitter.com/4Lilyfoundation/status/454672463524548609
Check out @4Lilyfoundation's Tweet: https://twitter.com/4Lilyfoundation/status/454671985982062593

Please donate don't let any kiddies die from.this horrible disease!!!

Check out @WilsonsSchool's Tweet: https://twitter.com/WilsonsSchool/status/454589948809601025

Please donate as much as you can! It really is appreciated!!

Check out The Lily Foundation (@4Lilyfoundation): https://twitter.com/4Lilyfoundation

Yayyyy

Check out The Lily Foundation (@4Lilyfoundation): https://twitter.com/4Lilyfoundation

8 April 2014

PEG nurse...

my peg nurse came this morning 
all was good and well apart from a couple of granulates that started to bleed when the button came out but she was happy with it. she put the new button in and gave it a clean and we explained about our progress on the eating and weight front which is good as she said as im not taking any more feeds with the pump since last year now i dont need to see her for another 4 months! 

FB AWARENESS PAGE

https://www.facebook.com/Mitoawareness

since a lot of people dont know about mitochondrial disease i have set up  mito adult support group and a mito a
wareness page on social media facebook! 
the above link is for the mito awareness page link if you can share it about if you can we need to get the info out about mito disease and how it affects us 
it is as wide spread as cancer and no one has ever heard of it and its researches and everyone i talk to always asks whats that? i explain about it and they have their opinion on it but each to their own!  maybe they wont care maybe they will but at least they know about it! 

6 April 2014

PEG nurse tomrw...

PEG nurse coming tomrw at home she comes every 3 months i think she will be pleasantly surprised at how im keeping my weight on without the help of the feeds - that reminds me must put water through my tube! i should do it every day! oops and my mum and me forgot my depression pill for 2 days running as we were so busy with things uh oh  i think thats the reason why ive got a bit weaker in my knees and my neck :S my neck is very floppy these last few days due to the fact its weak oh well another symptom to tell doc turnbull lol but i think it was coz of the meds really i felt a bit fuzzy the last 2 days so i  really should take better care of myself when night time comes meaning go to bed early! im not a teenager any more when i could handle staying up all night and still be ok the next day but i  know when i am defeated and have to rest eventually!

Its my carer Victoria's last day looking after me on Tuesday so will be sad but i dont want to stand in the way of her promotion she deserves it! and we will stay friends :)

Been busy setting up a mito support group and also mito support page on facebook look for us if you have any Questions about mitochondrial disease with help from co admins susan warnock claire younger. hopefully we can get awareness out there for mitochondria disease and educate people on it! 

Next trip to newcastle for me is in 2 weeks time hopefully all will be good news!

4 April 2014

Mito Man Saves The Day!

3 April 2014

neck muscles...

the last few days have been crappy for me as im so tired i cant even keep my head up i go to bed about 11/12pm and i wake up around 6 or 7 now ive come off the meds that hep me sleep longer.. newcastle soon though i can ask prof turnbull about it 

27 March 2014

three parent IVF

i have seen on the news this week and on bbc The one show and it was talking about the pros and cons of the three parent IVF treatment for people who arent strong enough to carry a baby to term or pass on mitochondrial disease like me 
i might want a family one day but NOT if  it can pass my mito disease on to baby! Thats what the good thing about three parent IVF is about and could help loads of other people in my situation who want a healthy child like any normal person wants!

Above is a video that explains how three parent IVF works!

weak neck...

i have been overdoing it lately and i think its catching up with me :( i have been struggling to sleep due to my achey muscles and get comfortable and a few late nights! (i know! naughty me!!) i think ill take it easy the next few days! 
my neck and arms are the worst affected at mo i couldnt even manage to put my cochlear implant on with out getting out of breath and had to rest! im feeling a bit deflated but i will get there!  Always do!

23 March 2014

joints...

The last few days have been hard but yesterday i particularity felt my pain! although i wouldnt say it was pain more like extreme weakness of my muscles making my muscles ache  sort of like a person does lots of exercise and has to rest but in my case it can take a while to get back to normal. The reason for all this pain i think is ive been overdoing it! i like to keep busy and thats my downfall sometimes!! lol i have been doing a lot of cross stitching which has taken it toll on my arm and wrist  and ive had 2 last busy weekends with family events whcih i was tired for. 
i dont really show how weak i am to family and friends when i see them but they understand coz they all know i have mitochondrial and some have seen me at my worst in hospital ( even if i didnt know it at the time!) 
i try not to let it get me down coz i know it will get better after some rest just my body telling me i need to slow down a bit and get some sleep and rest1!! 
i particularly had pain in my joints and my lower back this time which makes it hard to walk and do things normally such as brush my hair or get a cup of tea 
thankfully i have nothing left on my calender til April now i think! and i will chill out with my carer Victoria on Tuesday!
Next mito appointment - April yearly meet up with Prof Turnbull the dietitian the eye doc and hopefully getting the results of the blood tests they took from my parents and me in December! so that will be interesting learning! 

28 February 2014

rare disease day

Today is rare disease day and its good to get awareness out for mitochondrial disease which is rare and can cause problems for my muscles and my energy levels it also affects the organs, every bit of your body!
please pass on this blog to get more awareness out there for mito sufferers

24 February 2014

PEG or not to PEG... that is the Q

Now ive been off my feed for almost a few months now, my mind started wondering if I cope with out my PEG button? 
Niggling feelings of normality without a PEG in and the voice of reality AKA mum pips in to say what would I do if I had a mito crash and cant swallow food? or medicine for that matter?

The PEG nurse when she last changed the button told mum if it ever did come out accidently they would probably leave it out since im a healthy weight and have coped without feeds for a few months and my depression medicine that goes through my PEG is being reduced to the point I don't need it anymore. although I still do need depression meds by mouth (pills t hat wont go through PEG)

Its certainly something to talk about when we next go to Newcastle in April, if the nutrition doc
feels I could do without it.
I do have some doubts thanks to mum when it comes to mito crashes I don't want to lose the weight Ive spent the last 8 years putting it on and although its stable at 10 stone it is still up and down and I still don't eat enough to keep me going.  (I just eat when im hungry)

If I did have it out  and I happened to lose weight also when I had my first tube PEG put in, it almost killed me and my mum has always said she wouldn't want to go through that again!  and I wouldn't want to wish that on anyone.
Watch this space...

22 January 2014

after xmas gym...

i went back to gym after 2 weeks missing it first time my dad was off so victoira has no reason to come then last week my legs were so weak we decided to have a girl day in i felt strong enough to go this week but i only managed about 10 mins rather than 15 mins but it was my first time back so ill go for that lol hopefully when i get back into a routine  il get back to normal!