It’s been about a year since I last did a health update, and the last time I did, I had started vocational rehabilitation. It was both really good, and really bad and I went into some detail about that in that post I linked. The rehabilitation ended in mid-October, with only one one-on-one interview (as opposed to group session) and two group half-day sessions spread over February and March this year. These were optional, while all the before was mandatory.
The really, really good: everything that is not my illnesses. My group was awesome and our discussions were awesome. We all got along well. We discussed a lot of things, including but not limited to how chronic illnesses affect our lives and how to cope, with work, home, hobbies etc. Our counselors told us that we were a rare group because they could actually get us to talk and participate – a lot of the groups won’t discuss and open up actively like we did. I don’t know, maybe it was because we all wanted to be there? And wanted to get as much out of it as we could? Theoretically, the vocational rehabilitation is supposed to be completely coluntary but in reality, some are more or less forced by the TE-toimisto (unemployment services) to go there because if they don’t, they might face sanctions. It’s not supposed to happen, but it does. I loved it!
There were three periods of work training, first of which started in May last year. I loved the work too!
But, and here’s…
The really, really bad: my migraines couldn’t handle it, and I’ve been on sick leave or sickness allowance almost continuously since end of July last year. Right from the first day of the rehabilitation my migraines got daily, and the background headache I have all the time, sometimes strong and sometimes barely there, became strong and nasty. For about two and a half months, until early/mid-June they went away during the night, and then started up again in the afternoon the next day. Including weekends. I was able to attend my second work training for only two days, and the third not at all. Then in October we had two weeks again at the hotel with the counselors, and was able stand attending only the first 1,5 weeks, missing the last two days altogether. I was sad about it.
The good part is that my Crohn’s Disease didn’t react really at all, but the migraines became pretty much invalidating so that whenever I do anything physical like vacuum, or even just have people over for a few hours, or go visit someone, the reward is a migraine attack. The good part is also that the psychologist recommended discussion therapy because of my background and chronic illnesses, and also that I might benefit from a new consultation with a neurologist, so the doctor who wrote up the end statement they made those things, which made it easier for my GP to refer me to (without that statement the discussion therapy at least would’ve been rejected due to lack of resources and I can’t afford to go to private) a psychologist services and neurologist.
The neurologist started me on a cortizone treatment to break the chronic migraine, which didn’t work great but helped a little. And she also suggested trying a new treatment – Botox injections. So we’re trying that now, it’s helped a little but not much and it’s doubtful it’s continued beyond the three injections that are recommended to see if it helps. I’ve had two. These are given every three months. Despite the not that great effectiveness, I’m glad there was something to try because we’ve already tried the drugs I’m capable of taking.
The discussion therapy helps too. There are a couple of people I can talk to about all things, but they are close to me, family, so I worry about making them worry about me too much. With the psychologist I can talk about the things that sometimes haunt me, like the future and growing old with chronic pain and diarrhea, or about how all this has affected my creativity. Or my lack of energy which frustrates me. So it helps, but I don’t think it’ll do anything for the migraine.
Unless the migraine situation gets a whole lot better, I’m thinking I should to apply for disability pension/temporary disability pension once my sickness allowance days run out. Right now I wouldn’t be able to work even one full day… I might be able to handle maybe two half-day (4-5 hours) day a week, maybe. Disability pension is notoriously difficult to get, but that’s as things are now, the proper way forward. Whether I’ll get it or not, that’s a whole different thing. And I still have to talk with my GP about it, which I’ll do in June when I see her.
I’m really surprised – I thought that Crohn’s Disease and the chronic diarrhea would be the problem here, but it is the migraine instead. Although maybe I shouldn’t be, thinking back it what it was like when the migraine became chronic in 2008 and how many years it took until it got even a little better.
My main goal was to discover whether I’m capable of work, and if so, full time or part time. Right now, unless the migraine gets drastically better and something new comes along that manages it better, it doesn’t look like it. It’s an answer, not the one I hoped for, but at least I have more information and clarity and can make some plans about my future.
Emotionally and mentally, it’s been so much better being on sick-leave and sickness allowance the last 9 months. No need to worry about what TE-toimisto thinks up for me. Ill people should be on sick-leave/disability and not unemployment, it’s just too hard to get on long time sick-leave or disability. In that regard, our system is really bad.