artycarrie
12-08-2008, 07:31 PM
hi everyone,
im carrie im 28 and im currently falling apart.
last year i was partially sighted (from birth) and managing with hypermobility syndrome (frequent dislocations, chronic pain and fatigue)
i was born partially sighted with conditions that dont change but my sight started to deteriate this year and has gone on to deteriate massively in just 6 months. i now have severe photophobia (extreme intolerance to light visualy), night blindness, blind in one eye and partial in the left with inabilty to focus or get my eyes to do anything i want them to. iv gone from needing no help to using a white cane and having a guide dog assesment tomoro in just a year.
the doctors at the eye hospital have exhausted the usual eye tests and because of other problmes that have started this year they are now looking specifically for degenerative nervous system conditoins. (thats as much as they have told me)
im still watiing for my mri tht will hopefylly give some answers.
the other problems i have that started begining this year at the same time as the sight going, .:
severe memory problems. litle long term memories left andshort term is poor.
muscle jerks and spasms- my legs turn to stone whenever im resting and also my body jerks when im in bed. during the day my legs are tensing up all the time and my hands and arms twitch as well as my feet and legs.
unirary incontinace.
legs- cant really describe it other than my legs refuse to do what my brain tells them. so in a month iv gone form usin a walking stick to help me with my hypermobitly on rare occasions to using it all the time i leave the house. i walk like im drunk and after a while my left leg just drags and wont lift up. its so exhausting to walk now and usually only have about an hour on my feet in a day.
cognitive problems - my brain now makes me look like i have an iq of 3 even though i have a degree and a high iq normally. i cant do simple sums unless i write it down. when i type i have to think of each letter at a time to spell a word and my typing looks like i have dyslexia becuase the leteters are all jumbled up even though i dont notice till after.
so basically i falling apart and at the moent i dont know why. i came here because im getting very lonely stuck at home on my own. my freinds are disapearing and im becoming ess able to do what i want and having to rely on other people for help. i only get out when i really have to and thn i have to plan to limit what i do.
if the docs did find a neuro condition then i would have a sulk then deal with it. but at the moent its the not knowing what is happening and why moy body feels like its so against me.
im carrie im 28 and im currently falling apart.
last year i was partially sighted (from birth) and managing with hypermobility syndrome (frequent dislocations, chronic pain and fatigue)
i was born partially sighted with conditions that dont change but my sight started to deteriate this year and has gone on to deteriate massively in just 6 months. i now have severe photophobia (extreme intolerance to light visualy), night blindness, blind in one eye and partial in the left with inabilty to focus or get my eyes to do anything i want them to. iv gone from needing no help to using a white cane and having a guide dog assesment tomoro in just a year.
the doctors at the eye hospital have exhausted the usual eye tests and because of other problmes that have started this year they are now looking specifically for degenerative nervous system conditoins. (thats as much as they have told me)
im still watiing for my mri tht will hopefylly give some answers.
the other problems i have that started begining this year at the same time as the sight going, .:
severe memory problems. litle long term memories left andshort term is poor.
muscle jerks and spasms- my legs turn to stone whenever im resting and also my body jerks when im in bed. during the day my legs are tensing up all the time and my hands and arms twitch as well as my feet and legs.
unirary incontinace.
legs- cant really describe it other than my legs refuse to do what my brain tells them. so in a month iv gone form usin a walking stick to help me with my hypermobitly on rare occasions to using it all the time i leave the house. i walk like im drunk and after a while my left leg just drags and wont lift up. its so exhausting to walk now and usually only have about an hour on my feet in a day.
cognitive problems - my brain now makes me look like i have an iq of 3 even though i have a degree and a high iq normally. i cant do simple sums unless i write it down. when i type i have to think of each letter at a time to spell a word and my typing looks like i have dyslexia becuase the leteters are all jumbled up even though i dont notice till after.
so basically i falling apart and at the moent i dont know why. i came here because im getting very lonely stuck at home on my own. my freinds are disapearing and im becoming ess able to do what i want and having to rely on other people for help. i only get out when i really have to and thn i have to plan to limit what i do.
if the docs did find a neuro condition then i would have a sulk then deal with it. but at the moent its the not knowing what is happening and why moy body feels like its so against me.