Had a good chat with my occupational therapist today and it does seem rather funny that no one is willing to commit themselves to either a definitive diagnosis or prognosis, I think I just have to accept that they simply do not know . But that the current meds I am on work so that is a blessing in itself .
My days have changed somewhat since I last wrote about them . I begin my day at 8am and on waking I have to apply Celluvisc drops to my eyes as I have epithelial disease (dry eye) and keritis and monocular diplopia ( double vision). My carer arrives from social services at about 8.30 and helps me wash/shower/dress and gets me downstairs into my mobility chair for the day.I have the luxury of having my hair washed and dried at home because some days I am unable to raise both hands at the same time due to a combination of paraesthesia and pain coupled with muscle spasms.
Then it is time for me to take my Lansoprazole ( for acid reflux) before I eat my very early meal on wheels at 11.30 am ! Then it's more eye drops which I have to say taste awful despite taking them 4 times daily they never taste any better ! ! You can taste them going down the back of your throat even though I do put them in my eyes not my mouth !!
Then I have from about 1pm till 3pm to myself so I usually read and catch up on emails or call my mum.
My evening routine is surrounding myself with several medial boxes and my Nomad which has the remaing pills in it .
My Nomad contains my Psychiatric medication Seroquel 300 mg to aid my sleep
along with my Psycologists favourite Fluoxetine 20mg ( this one helps my mood)
Diazepam ( for my muscle spasms)
Bisocodyl ( for my IBS )
Naproxen- tastes horrid and I swear was developed for horses not humans!( for Musculoskeltal pain ) Algesal cream applied to my aching muscle groups ( a local analgesic)
anti inflammatory eye oitment called Cusi Antiedema to prevent me from going through another Corneal tear as my eyelids have this daft habit of adhering to my corneas when i sleep and they tear open the scars - a minor nuisance lol.
I have prism glasses now to correct my double vision which is caused by an unknown swelling behind both of my eyes, been assured its nothing to worry about but that they have no idea what caused it .
Tramadol 50mg which is my least favourite pill ( centrally acting analgesic)but it works a treat and is quite often the only pill that gets rid of the chronic pain in my back,neck and ribcage.
It amazes me that each doctor can seriously only focus on an individual symtom but I have to say that so far my pills are working , I am in less pain ( not pain free yet) , and I have to say when I have a bad day I no longer feel guilty , I rest knowing that soon it will be over and I will be back to my sense of 'normal' again . Now all I am awaiting are the results to my cognitive test ,,,fingers crossed hey xx