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!
A journey of life with Deafness,Cochlear Implants and a mitochondrial condtion.
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.
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
23 March 2014
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