Thanks Slim. I'm waiting for the ESA & PIP forms to come through. I wasn't going to return to work as I've been so ill but I decided last week to just apply for PIP and perhaps cut my hours down even further. I'm only 43 so I just can't imagine not working ever again. I think the novelty would wear off really quickly. I'm just a bit torn on what to do for the best. I appreciate everyone's help and sorry for hijacking your thread Jena. MAB, I have got some records of hospital stays and my GP is pretty good at writing letters. My Neuro isn't the best though so I'm not relying on him too much tbh. It pays to be a good record keeper in the long run though
It's totally fine, its a tough thing to sort the details on and there is so much to arrange. I'm going to share my story to unemployment lol its a bit of a TLDR so I will understand if you want to skip over it lol!
I was working full time at a place I had been at for 4 years when I was diagnosed and they were completely supportive of everything, they knew what was going on, they knew what to do and they knew that sometimes I needed to go home if my seizures got too bad, and that only lasted about 3 months because I was put on Tegretol and it was like a wonder drug, so everything was under control and I never had to think about what would happen if I couldn't work.
Then I moved to a new job at a big company, like worldwide big, so you can imagine despite the HR buzz words they threw around the employees were just a number to them. But the Teg was still doing its job so everything was fine, until I developed a tolerance to it, and everything has been going downhill since then.
My company had me on warning for taking too many sick days, while at the same time saying I had to go home if I had a seizure because of health and safety blah blah blah. So I eventually told them to shove it, got a part time job and went back to uni. The new job was with a very small company with people I had known for a while, so they were very accommodating BUT because it was such a small company I was always run off my feet trying to do three things at once.
Meanwhile my neuro had increased the dose of Teg and I shot up from the low end of the theraputic range to the top end and I started getting a raft of side effects - headaches, anemia, dizziness, nausea, muscle spasms, speech problems etc. basically you could look at a list of side effects of Tegretol and most of them I experienced, yet my neurologist wasn't convinced, despite nothing else having been changed. So this was the first time I started thinking well what if I can't work, what would happen, but I put it in the "future Jenna can deal with it" pile.
So this is coming in to my second semester at uni, I'm balls to the wall with assignments and trying to manage a software development project on part time hours. My neuro was swapping me to Lamictal over the span of about 3 months, so while I was coming off the Tegratol obviously things got a lot worse, seizures came back etc, which I expected but the side effects started going away which was good. By this stage it was really hard to be juggling things, I was either missing classes or missing work because I was too exhausted to do both so I had to start thinking about leaving work but it just wasn't financially viable.
Then at the stage that I was off the Tegratol and I was up to the full theraputic dose of Lamictal, things hadn't gotten better seizure wise, they had gotten worse, and eventually my fiancé dragged me kicking and screaming to the hospital because I was in denial of how bad things had really gotten, and even then it wasn't until I had multiple seizures in an hour and they moved me to the high dependency unit for 24 hour monitoring that I finally had to bite the bullet and choose whether to leave work or uni. After a long discussion and working out that overall it was better for me to stay at uni because I had better control over the stress levels and didn't anyone else relying on me to get work done.
That brings us to now, so its been three months since that happened and it has been really hard. We had to make some huge cut backs to make up for the lost income, my fiancé got a small pay rise which helped a bit. But every time we get really down to the wire with money I get wracked with guilt for putting us in this situation, especially if I am having a good day. Most of the time I also think I'm fine, I could go work, I'm totally ok. Then I realise that on most days if I'm not having seizures, I am recovering from the after effects, which often include migrane-like headaches so I would be absolutely useless trying to work. Thats why I have started doing crowd source testing because I can pick and choose what I want to do and even though its not much, I can get a little bit of extra money for us.
Phew, so thats the big rant. It is by no means getting any easier and I am dreading my upcoming video EEG because I have heard it doesn't necessarily always show up partial seizures and if it doesn't then we are still in the dark about where to go next.
