Welcome To My Blog...
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.
16 March 2019
In september my parents took me to newcastle as i hadnt been sleeping well and i began to have a unstoppable shake in my foot and have hallucinations whitch was frightening for my family. Newcastle did tests which sho wed an infection i dont know what it was but it lande me in intensive care for 10 days. I spent 3 weeks altogether in hospital before i was Home in huddersfield. A long tim
I have been given a CPAP machinę to helps me if i stop breathing in my sleep which took a long time to get used fo! I feel like darth vader!
Its only now im getting back in social media n blogging again, it has been a long few months Getting back to myself and with the Help of charlie gard foundation and their generosity they have provided me with a elevating bed and comfy chair that helps me to get up.
My parents have also invested in a stairlift to Help me tackle the stairs at home.
The worst thing is im on a mash diet i have to wait til april where they will xray my swallowing ive had it done before so i should be ok
16 June 2018
14 May 2018
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
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
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
22 March 2018
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
18 February 2018
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 !!