How are you feeling?

[Nicoleblack123]

Just wanted to check in to see how people are doing.

I've taken more sick leave this week than I've ever taken before (a whole week) and have just started the job. I've not been able to get out of bed, having migraines which have lasted full days, lots of stiffness, convulsions, myoclonus, brain fog and nerve pain.

While my manager has been very understanding, insisting that I take the rest I need to get better, I usually find I get worse the longer I am inactive and not doing very much (perhaps linked to the idea that distraction help a with symptoms?)

He's also insisted that I see my GP, but I have very little faith in their ability to help me. I've been determined to learn and heal as much as I can independently because quite frankly care in this area is not where it should be and has caused more harm than good. I know that I should be fighting to get all the support I can but I'm just not ready to brace myself against the ignorance yet.

Hoping to try and go back in tomorrow, dreading the 'back to work conversation' as I find it very difficult to speak about my symptoms without freezing, stumbling or crying!

How are you all? How has the week been?

[Hidden]

I’m so sorry it’s been a rough week. The start of my week, hasn’t been great. I went to school today and now am being sent home once again because I had a seizure and passed out.

[Nicoleblack123 in reply to Hidden]

It must be really difficult to manage while you're at school with your studies. How has the week been for you since?

[Hidden in reply to Nicoleblack123]

yeah, it is really hard. but i push through and try to make the best of it. it’s still not been the greatest, i’ve been having a lot of symptoms and had another seizure last night.

[tabey]

Dear Nicoleblack123

Im so sorry your feeling not 100% but by reading your post it seems you got that little fire of hope burning inside of you and thats what we all need.

cry if you need too let it out.

taje what time you need and try not to feel pressured .

this affects my whole life i sadly lost my job due to FND and i just find every day so hard but i have that fire inside me maybe mine is anger at the system i dont no but we togther as a community will help each other thought dark times

i really wish you well

tabe

[Nicoleblack123 in reply to tabey]

Thank you for the advice. You're right a good cry is needed sometimes. Where are you at at the moment in terms of getting support?

[pickleweed]

I am handling my FND symptoms better--not getting worried or sad about them as much. I am accepting my symptoms instead of fighting them.

[Nicoleblack123 in reply to pickleweed]

Great to hear. What has helped you most to get to thst stage of acceptance?

[pickleweed in reply to Nicoleblack123]

I read that FND can be perpetuated in the following way (just a theory): neuro symptom -> alarm -> FND ->alarm -> perpetuation or worsening of FND symptoms -> alarm-> perpetuation...and so on. So when I have anxiety because of my FND, I tell myself that it is just FND, and then I do controlled breathing until the anxiety passes. Today started off worse than yesterday, but I am able to use my computer now.