Chiari Online Support Group

What does everyone do about work?

hi folks,

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 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 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

last 7 years.

just feeling really down and starting to worry about it all.



i have been out of work for about four months and i know i will notbe able to go back untill i get the sugery cause i can barley stand and walk as it is now and i know the feeling cause i work with the pain and symptoms for three months till i could no longer do it safely.

We are currently in the process of finalizing an Employment Program for Ben's Friends Members.

I Promise I can tell you more in two weeks. It will assist all Members even if you are on SSD or SSSI or not on any SSA Programs. Just give me two weeks. We have been working on this Program for Months so it would be as close to perfect as possible for all US Members. We are so protective of Everyone we have put so much of ourselves into this. I promise it's amazing.


Tracy Z.

Is this a program currently!? I am a 1st grade teacher and have had to stop working because of all the symptoms knocking me down. I can’t function enough to do my job. I am super depressed being a single mother of 2 little girls and now not able to work :frowning: Any information you can give me would be so amazing!

I have been out of work since 2013. I have been trying to get disability since then and haven’t been able to yet .but also have back issues and out her medical issues to. Good luck to you on your journey