im in an awkward limbo position. neruosurgeon says i have a small chiari, but has not yet confirmed its causing my symptoms, so no treatment plan yet.im awaiting an ultrsound scan on my heart to confirm if i have marfans syndrome, and to what extent.
whilst im waiting, my symptoms have settled a little again.my speech is back to normal (no more sluring), and my balance is generally better.however i still get brain fog, especially when alots going on, and this near constant headache, that often pushes to make my toes curl unless i stop what im doing. the only other annoyance is the random pains in my right hand, either foot, the odd muscle spasm bout, and this regular sensation of a cup of tea being spilled down the back of my right leg.
im currently off work sick. i was off work with the same symptoms (although initially diagnosed as a bloodclot on my brain, then they decided it wasnt that after 6 months treatment) from october 2011-may 2012. my latest bout started at the end of october 2012, and ive been off work since (bar two days to see if i could cope before christmas).
i teach/lecture at a college, im the course leader of electrical installation so train apprentices from scratch to fully qualified. i teach all aspects of it, and also oversee the running of the courses for a total of about 70 students aged 16-56.
im able to function better around the house now, doing jobs when i feel good, and stopping when i feel bad. i feel guilty about not being at work and worried i might lose my job, but i found before christmas that i couldnt cope, when my head was really bad, i couldnt stop, i had to teach.
how does everyone else manage? if you push through it everyday do you still survive? how do your family/friends understand that you can put a brave face on and seem "normal" for spells of time,but not feel well enough to commit to work?
i dont know what to do. still waiting for a full diagnoses and decision of treatment. alls i know is this condition whatever it is has made me change career massively twice, and take 28 months off work in the last