Since the latest health scare, this past summer, Ive done my best to be upbeat and to try to keep on going in my work to get my shit together. Ive been so busy with that Ive forgotten to write anything here. So here goes.
Last summer I ended up in the hospital, with atrial fibrillation, then given meds and sent home. Now I see a heart doc every six months. The result from my blood tests at that same time rendered a few red flags so now I also have to see a blood specialist every three months. Every appointment basically goes the same. The day before the appointment I get my blood drawn, only to come in the next day for them to tell me my white blood cell and platelet count is rather high (scary) but they don’t know why (even scarier). Nothing to worry about, they say, but we have to keep track of it so come back in three months. I’ve been to the heart doc once, so far. He was rather dismissive of me and went on a tirade about eating better because I cant possibly have anything wrong with my heart due to my age. The EKG at that apt was perfect (according to him) but of course it would be since Im on meds to regulate my fucking heart. Now, however, a month later, Im noticing that the meds arent working like they did at first… I feel the usual irregular thumpity-thump several times a day. Just yesterday I got lightheaded around that same time. Which is how it started last time, ending up in an overnight hospital stay. Around and around we go. Im so tired of being dismissed by doctors.
So with that happening, Ive been trying to get my shit together meaning basically getting back into the work force. Much of my shit is together, at least much more than it was when I first moved back to Iceland. I have a place of my own, my kids are doing great, and I do actually finally have a few diagnoses that make things make a whole lot of sense. The first of which being autism. Yep, I’m autistic. And I have fibromyalgia, which Ive been complaining about (and dismissed) since I was 18 years old. It is also likely, according to one doc, that I have chronic fatigue syndrome. I mean I guess I could go try to get a dx for that as well but I’m too exhausted (pun intended). But I digress.
Trying to get back into the work force. Yay. So I was advised to file for disability after my autism dx. Meaning I had to get a doctor to sign off on it and then go file. When I went to the doctor and explained it all (autism and fibro) he said that I couldn’t just file for disability -I had to go through a program where they try to rehabilitate me to get back into the work force. Like I had just gotten autism and that I could be rehabilitated… hmm… but whatever. So I did that, and Ive been in this program, jumping through hoops (going to seminars and exercising and physical therapy), for a year now. And at this point I’m being pushed to apply for jobs pretty much everywhere, go to interviews, and apply for more jobs and go to more interviews. Because apparently recovery time and rehabilitation is one year and you are then expected to get back into the work force. Which would make sense if I had some kind of work related injury that left me unable to work. But that isn’t what my situation is. Im autistic with a chronic pain condition that has only worsened as Ive gotten older. And that is not even considering SPD, which has also worsened with the fibro. Now, Im not saying its a shit program or that it doesnt do any good. It does. In fact, its helped me in several ways. Those hoops are hoops I needed to jump through for my own well being. I also have depression and anxiety, which is basically the main things that I worked on through this program. Shrinks and seminars to work with the anxiety. So Ive learned a lot of coping strategies. I have learned to exercise the right way with fibro –because you cant just jump onto any machine and work the hell out, no, you have to work up to that shit and always be careful. So there is definitely good that has come from all of this. I won’t deny that. It hasn’t been a giant waste of my time or anything. However, I cant help but feel that the fact that Im autistic is being ignored. And I cant help but feel that the social workers have too high of an opinion of my capabilities. I partly blame my resume for that. My resume (from ten years ago, mind you) betrays me every time I try to explain why I cannot work certain jobs. Ive worked those jobs before, so why cant I now? Things have worsened, I say, again and again. The progress I have made is awesome, no doubt, I am proud of how far I have come. But again, that progress betrays me in the sense that while I know my limits, others don’t seem to understand that I have any. Which I guess is something that pretty much every autistic person can understand: NT expectations. Having people expect us to do things like everyone else. It is why ABA therapy is so popular, because they want us to be like everyone else. Even at the cost of our own well being, hide our autism. Good dog.
I realize Im being a negative Nancy about this. I do. And for the most part Im usually rather positive about most things. But today is a bad day. Yesterday I went to two interviews, I even went to the mall (to my own detriment and sensory overload, awesome sauce) and was in tremendous pain before I made it home. The socialising aspect of the interviews is HARD. Therein lie some of my larger difficulties. I never get the job if I have an interview to go to. Which is another reason why my resume betrays me. I didn’t get those jobs. I was referred by family or friends, which meant I skipped the interview and went straight to work. And at pretty much every job Ive been told by supervisors that Ive nearly lost the job in the first few months because it takes me a long time to adjust and mask accordingly. This shit is exhausting y’all. And not just because I have fibro and fatigue. Socialising is hard for many autistic people, especially for one such as myself. I cant read facial expression or body language. I have face blindness. I don’t know if a person is upset or happy or why they would be. I go by the words they use, and I interpret those literally. This causes a lot of misunderstandings, ones I don’t even realise are happening until way later. When I do come to that realisation, usually through a memory replay over and over again, I stress myself out about it for no goddamned reason. Im working on that last part.
Today I had an appointment with a person who is supposed to help me find work, and basically she told me to start doing things like looking online and thinking about where I want to work. Okay, Ive already been doing this, Ive been going to interviews. But Im in such a fog today, from yesterdays buildup no doubt, that I couldn’t verbalise that at all. I barely managed to tell her my medical history. I kept losing my words mid sentence, swoosh, out of the brain and into the void. But thankfully she is super patient, and said its no big deal we will discuss next time. Thank fuck for that. Thank you social worker lady, I appreciate it. I was so overwhelmed by my inability to communicate that I was holding back tears on the way home. Probably nearing a shutdown. Or a meltdown. I cant tell which.
Ive managed to avoid it (shutdown or meltdown) until I got home, had a coffee, took my heart meds because I forgot earlier, and am now sitting here in a fog trying to sort through my thoughts. So I apologise if Im writing like a fifth grader. Words escape me.
Thanks for reading.
i get your blog .i have aspergers and m.e ,take part in a lot lot research .i do a blog