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.
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 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!
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