Sure, I’ll be the Villain.

Its an odd thing, to look back at one’s life and take a long look at the people involved. Looking back and seeing how much you have changed when those you surrounded yourself with seemed to have stayed the same. After years of mental and emotional healing it seems that all the toxic individuals from your past are just as toxic as ever. As a matter of fact, for me, I’ve noticed that they are worse than they were before. I mean, they are Trump supporters for fuck’s sake.

They’re pretentious, self righteous ideology has only grown since I’ve seen them last. It’s been nine years this month. It doesn’t feel like its been that long. I guess a life less toxic passes by rather quickly. I’m no longer consumed with the theatrics of the apathetic, selfish characters that I begrudgingly endured for so many years. I’m quite pleased with the way things have turned out.

Every once in a while, I catch a faint glimpse of that past life through social media when some of said individuals let it slip through the cracks of their constructed online facade. I assume their makeshift personas are rather tedious to maintain considering the massive amount of discord they tend to sew in others. They must be, because every now and then one will let their usual “selves” slip through. With a judgment here, or a temper tantrum there, etc.

In most recent events, I suspect that I have been a topic of contention for quite some time. One particular individual over reacted online and went into a tirade about how I supposedly feel or haven’t shown or what-have-you. It was so seemingly out of nowhere. But it couldn’t have been. It had to have been building over time, because it took a itty bitty thing to set them off. A simple vague post on Facebook and boom! I’m a terrible person who’s done them wrong. They’ve made me the villain of their story probably. That’s okay, I’ll make a fabulous villain.

At the same time as this over reaction. I reiterate, an over reaction. At the same time another individual let it be known that they were also angry with me by cutting online ties. I find it to be quite amusing considering they have no leg to stand on, so to speak. No dog in the fight. At the very best, they contributed genetic material. Which is why I find this behavior so amusing, like they have a right to be upset when they didn’t contribute in any other way. Even when they were present, at most, they made things more difficult. I was saddled with all the responsibility as they frolicked. All the while blaming me and everyone else for their shortcomings.

It’s ludicrous that these individuals feel they have any right to be upset with the way things have turned out. With who my kid is. I say who my kid is because I’ve only ever let my kid be who they are. Instead of forcing some social norm or bigoted view points onto them, I have stepped out of the way and given them the room to navigate their own identities. Without bigotry. Without the hateful restrictions that certain individuals would impress upon them if given the opportunity.

I know that if they had their way, they would have indoctrinated my child with their bigoted, hateful rhetoric forcing said child to suppress their truth and live a tortured existence. While I would have been there to counteract such atrocities, it still would have taken its toll on their well being. And I cannot abide that. I will not. As to the accusations of making my child this way… fucking spare me.

You cannot make someone be another gender. You cannot make someone be a certain sexuality. They are who they are and that is that. If you truly are tormented by the fact that I let my kid live their lives without suppression, then I guess you just have to live with that discontent. Because they are who they are and you are wayyyyyy over there, thousands of miles away.

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A Life Undiagnosed

When I first started this blog, years ago, I was an angry person. Angry is an understatement, honestly. It seemed the whole world was against me. Everyone seemed to constantly try to push every last one of my buttons. I was convinced that people were misunderstanding and combative with me on purpose. My parents, siblings, friends, and partner. Everyone. Teachers, bosses, co-workers, peers, everyone. I felt like I was on an alien planet, that I didn’t belong anywhere. It was like there was an invisible barrier between me and the entire world. I never felt that there was anything different or wrong with me, in fact, I was sure that there was something wrong with everyone else.

My anger stemmed from difficulties in childhood. While being raised in a toxic family dynamic is probably the most significant, much of my difficulties were in interacting with other people. I found myself, often, in conflict with my peers and no idea how it started. So in my anger, while unable to find the words verbally, I would write them down in letters. Those letters put me in the school counsellors office sometimes. When asked by said counsellor why I wrote it all I could say was “to get the words out,” or “I was angry”. Because writing seemed to be the only way to really get my thoughts in order and let out any negative emotions I was feeling at the time. Ironically, as soon as I did write it and hand it over Id completely forget about it. So the visits to the office always caught me off guard. After a while I started just writing and keeping it at home, first in a notebook and eventually on a computer when I finally got one.

When I started this blog, it was for that purpose, to let that anger out. Mostly I vented and wrote long winded posts about whatever I was dealing with at the time. I learned throughout my life that I couldn’t talk to anyone, because whenever I did people would react poorly. If I ever tried to speak to someone, who often spoke to me about their problems, they would say that I was being selfish or negative. It was hypocritical af, really, because I was often the person that people vented to but whenever I had a problem they didn’t like it. I think most of that was because of my tone. They took it as an attack even when the topic wasn’t about them. Whenever I tried to relate to them by bringing up something I had been through that was similar I was called conceited or narcissistic. I couldn’t win, no matter what I did or said. So even though I wasn’t technically alone, I surely felt alone. Never lonely, just alone. My own company was all I ever really needed.

In my early twenties I started this blog. I vented, I went on tangents, very colourful ones. I was careful not to name any names, just venting about things I was going through. There were a lot of toxic individuals in my life and they had a tendency to try to find things to fight about. When they found my blog that became a topic of discussion of course, and I eventually lost interest in even writing. It was like no matter what I did, no matter the things I was having to endure from them, I was the problem. How dare I write the truth! I’m not even sure anyone read my blogs, it was a place to vent. I didn’t have any safe space in real life. I had no privacy. Nothing that belonged to me. Anytime I tried to get my own thing, someone would always invade it.

The first quarter of my life wasn’t my own. Every time I would try to do my own thing it would be trampled on. I was a doormat, a punching bag for everyone else. And I was such a bother, too, because I did speak up about it regularly, which never helped matters much. I think after years of being ridiculed or belittled or dismissed I eventually just lost interest in everyone and everything. I recall one particular instance of being unable to get up and go do a thing that I said I would do, and that person who was expecting me to do said thing for them kept calling me and telling me how I was making them feel bad because I wasn’t moving fast enough for their liking. It was a small moment, nothing really, compared to all the others. But it was a moment when I realized that I didn’t want to exist in that moment, in that life, anymore. It was that moment I had decided to leave. I hadn’t decided if I wanted to actually check out for good or if I wanted to make a change. So I walked that line for a long time…

It took me years after that to actually physically leave the place I was in, but building up to that I was making small changes, hardly even knowingly, but not always good ones. Relationships ended and new ones began and also ended… I went a little wild, on a destructive path. And then finally came to terms with the fact that the only way to fix anything was to get the eff out. So I moved away. I left all toxicity behind. All the people that literally made my life hell.

It wasn’t over though. I had a lot of trauma and my own toxicity to work through. So nine years and several diagnoses later, things are looking up. Its been a long and difficult road. Knowing now that I’m Autistic and looking back is an odd feeling. A lot of the things people gave me shit for were autistic traits. Its both a relief but also kinda shitty. I have wondered if I had known, would things be different. But the past is passed and there’s nothing to do about it now. All I can do is move forward. Letting things go is not one of my strong suits but I am working on it.

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A New Chapter: Finding Who I Would Have Been…

After a childhood of trauma and constant drama thereafter in most of my early adulthood, I have now had to spend years healing. After nearly a decade of slow healing, mental and emotional especially, I’m finding that I have no idea who the hell I am anymore.

I stumbled across a post on Facebook that seems to ring true for me. It states, not verbatim, that after a lifetime of constant trauma one doesn’t go back to who they used to be because they were simply surviving their entire lives so they have to find who they would have been had they not grown up in such chaos. It stings a little, if I’m honest. However, coming to the realization that I’m essentially starting from scratch at the very least gives me permission to try new things.

Yesterday, while sitting on my own outside I came to the realization that whatever hobbies or interests I used to have were essential to my survival. I recall writing as a form of release for incredible anger due to unresolved issues at home. It helped me find some semblance of control, during a time when I literally had none. I was not safe anywhere. Not at home. Not at school. Not anywhere. So my ramblings became my refuge. But now, after nearly a decade of freedom from toxicity, I’m finding myself with very little inclination to write. Not like I used to, anyway.

So where to begin? As a neurodivergent individual, I find it helpful to set a series of small goals rather than any large ones. Large goals tend to be overwhelming. I look at a thing (a room that needs to be cleaned or any project that needs to be done) and cannot see my way through it. So, taking small steps to the ultimate goal (clean room, art project, etc.) tends to make it easier to manage. But what to do when unsure of said goals? Breaking down steps helps when working on household chores, but would it even help with trying to figure out what I want to do with my free time? That remains to be seen.

I’m not fully healed, of course. I do not think I ever will be, but in fairness, are any of us? I think every single human on this planet has some kind of thing that they feel needs to be worked on. Especially with the pandemic making things difficult for everyone. My mental and physical health certainly took several hits in the past couple of years. I wish I had some tips and tricks for everyone as to how to work through it, but I barely did anything. I just sat there, stewing in my depression watching reruns and waited for it to pass. Now Im out of that very deep valley, and who knows, I may be back there again soon, but for now Im going to enjoy today. And maybe tomorrow.

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Im Vaccinated! Yay!

About a month ago or so, I finally got my text message saying that it was my turn to get the first Pfizer vaccine. Here in Iceland, basically when its our turn they let us know, and there are certain groups that are getting the shot first like the elderly and chronically ill etc. The months leading up to that text message, Ive been bombarded by posts of scaremongering about said vaccine. Anti vaxxers are losing their minds about it. Not only that, people who did receive the vaccine posting about how horrible it was, how sick they became, stuff like that. Ill admit its partly my fault that I kept paying attention to those posts… but it certainly didnt help my anxiety one bit. Anxiety sucks like that, you know you shouldn’t subject yourself to it but being so anxious tends to fuel the need to learn more about it. Its weird. Very often while going through an episode, I know how ridiculous I might be acting but I literally cannot do anything to stop it. My brother, who’s usually around for my anxiety and panic attacks, just kinda goes “yea it sucks,” or kinda laughs as I yell “THIS IS SO STUPID I HATE MY BRAIN!” Which is fine, hes super chill about it and really the only one that doesnt push my anxiety levels up by trying to help in a manner that actually never helps. All of that is beside the point. What was my point? Oh, right. I was so anxious about the vaccine by the time it was my turn I could barely function. I freaked when my phone alerted me that I had an appointment, so much, in fact, that by the time I actually got to the appointment I was exhausted.

My brother drove me to the appointment (he waited outside), which was at a gymnasium type place. The line was really long. So I had to walk a ways. I assumed that oh no, this is going to take forever, since the line was so long, but we were all ushered in rather quickly. We followed arrows on the floor into a room that had chairs lined up throughout. I sat somewhere in the middle. So we are all sat there, waiting, and a row of nurses with carts are standing at the front. Then someone yells “Áfram!” (which means forward! But I kept thinking of it as Onward! which was funnier.) And the nurses then move to give the first shot. Then they wait. And someone again yells “Onward!” and they move up one more and give a shot. This was funny enough to help me relax a little at least. So its my turn eventually, and the nurse asked if I was nervous, I said yes while thinking it was the understatement of the century. I didnt feel the shot at all. Then we had to sit there for ten to fifteen minutes, during which my anxiety was basically honing in on every tiny little thing I was feeling physically, expecting to react to the vaccine right then and there. Thanks a lot, Internet. But yea no, I was fine. On the way home I was retelling it to my bro in a very very dramatic way, with interludes of “Fuck anxiety…” followed by loud sighs before continuing.

The only side effect I had from the first shot was a really sore arm. I couldn’t sleep on it. And I think that soreness might have been worse than expected due to fibromyalgia. Anytime I hurt myself it tends to spread because of fibro and jump starts a flare up.

The thing about being chronically ill is that the side effects listed are basically things we already deal with on a regular basis. So often times its difficult to know if something is a side effect or just the illness. I also think that because I deal with said issues on a regular basis, the side effects were not that bad really because its something Im used to. So when the second shot came around (a few days ago) it also wasnt that bad. I noticed that I was more tired than the day before, and the headache that lasted all day wasnt that different from my usual headaches. I felt like you do when you know the flu is about to hit you, like the very beginning. You can feel that achyness and its like oh shit, I think Im getting sick. That is a regular thing when you’re chronically ill. So I couldn’t tell if it was side effects or fibro. And then it hit me, for someone who is not chronically ill, safe effects like that probably feel really really bad. Because its not their normal, so naturally they’ll react to it like it was horrible. And this is something that didnt occur to me when I was reading said posts that sent me into an anxiety spiral leading up to the first vaccine.

I came across a post some time ago that said something along the lines of when you’re chronically ill you forget that healthy people exist. Because you’ve been sick so long you cant even imagine what its like to just do things without having to think about whether or not it will make it impossible to do another thing later that day. Like okay,, yea, Im aware that healthy people exist, obviously, but the idea or the concept of being healthy is so alien now that its nearly impossible to imagine. Just writing this post is causing pain in my hands, wrists, shoulders, back and neck, which is giving me one hell of a headache.

So yea, the whole point is that the shot wasnt even that bad. The first one makes your arm sore, the second one makes you tired, gives a headache, the arm sore again but not as much as the first time. Other side effects are fever, nausea, general feeling icky for a day. So if you are not allergic, getting the shot is not a big deal at all. Dont fall for the scare mongering you see online about the vaccines. Protect yourself and your loved ones by getting vaccinated.

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It’s late and the kids are finally asleep and I’m watching a show I’ve already seen many times…

It’s the second week since I stopped working. I’m already noticing a huge difference in mobility and mental health. A positive difference. I knew that working was taking a lot out of me but I didn’t realize just how burnt out I was. Not only the repetitive movement and having to force socialization but also just being there while not actually wanting to be was taking a significant toll.

When I was diagnosed with fibromyalgia I thought the only issue I would have was pain. All over pain, localized pain, all kinds of pain really. I’m finding now that it’s so much more than just pain. Other symptoms are digestive issues (like IBS, etc. ), depression, sensory issues, vision problems, fibro fog, fatigue, and more.

Since I’m autistic Im finding that a lot of my difficulties due to autism are also becoming more prevalent. Now that may be because of fibro but it may also be that years and years of masking has just caught up with me. I’m barely able to mask these days to be perfectly honest. Thinking back I can’t help but wonder if I’ve ever really been able to mask that well, considering nobody was surprised when I was diagnosed autistic. But I digress….

My point was that I’m finding I was pushing myself so hard that it was making it very difficult to do the mom thing as well as the cleaning the house thing. And well, pretty much all the other things that a single parent has to do.

So now, two weeks without having to over work myself mentally and physically, I’m finding I’m able to keep up with my kids and home better than before. I still have to pace myself of course but until now I wasn’t able to do the bare minimum.

So I’m optimistic that I will finally be able to make progress over time. I just have to learn to pace myself. Making lists and spreading chores out over the week has seemed to really help.

Okay now I’m just rambling. Back to my show.

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Processing Recent Events…

So the last couple of years has basically been me trying to fit into the neurotypical world while ignoring my neurodivergent differences and, in so doing, inadvertently losing all the progress previously made.

It went as follows:

Received autism and fibromyalgia diagnoses. Being told by social workers to file for disability. Then trying to file for said disability but having to join a “work program” before being considered for disability. Being pushed by said work program to jump through a shit ton of hoops (some helpful, some not). Then left to my own devices (flailing in the wind, really). Physical and mental health decline. Finally filing for disability because the trajectory set in motion wasn’t working. Cutting the hours at the job that the work program pushed me into because of physical and mental health decline (the job was already part time so cutting it to so little that I was barely there). Physical and mental health continue to decline so I have to take a medical leave from work which led to being “let go” by the job last week. So now Im just on disability trying to get my mental and physical health back on track.

If Im being perfectly honest, the last two years feel incredibly wasted when considering the result. I mean, I guess the silver lining being that Im finally on disability BUT the journey there was incredibly unnecessary. And frankly, it fucked with my health so finding the silver lining in that is difficult.

In retrospect, what I should have done was quit the job when it started making things worse. I’ll elaborate. When I got on disability I cut my hours for two reasons. One reason being that I physically couldn’t endure the work for long periods of time (also I can only work so much before it cuts into the disability). The second reason was that I wanted to keep the job because it gave me the motivation to get out of the house twice a week. So it was, for a short while, beneficial for my mental health even though the work itself was strenuous on my physical health. Then, the pandemic hit, which caused an uptick in my usual mental health difficulties. Also, changes were made at the job. New management and new workers. Which yea, thats normal, it happens, but remember that change can be incredibly difficult when you’re autistic. The old management knew my struggles and accommodated accordingly. The new management did not. I tried, though, to continue working while struggling with the increase of difficulties. It became harder to communicate with customers as well as more difficult to work because of physical pain. So this decline led to increased IBS .. stuff. I took a medical leave bc I kept calling in sick, was in and out of docs offices because we (I and doctors) didnt know it was IBS at the time. Eventually though it was figured out to be IBS and the realisation that this is yet another thing I just have to learn to live with.

So I go back to work in January, Im there less than a month when the management calls me into the office to let me go. They mention that the decision was made in October, which was confusing, why was I still there in January if thats the case? I guess they were waiting to see if they could find another reason to let me go or a reason to keep me? idk it was a weird conversation. The way it played out was incredibly odd to me. And I think this is due to differences in communication. The management is neurotypical and I’m autistic. So theres bound to be confusion, most likely on my end anyway. There was a lot of open ended statements. Like, being left to make the choice of how long I work there… instead of being given a definitive amount of time. I, personally, would have preferred to be told “your fired, leave now” without all the niceties. The option of staying for up to three months was odd because I grew up in the states, where if you’re fired you are done that very day. And I mentioned during this conversation that I was actually considering quitting so losing the job wasnt upsetting. But the way it happened was so confusing, I didn’t know if I was supposed to leave or not because my shift wasnt over and the management said that I could choose to stay if I wanted so I got upset by that confusion. Since I was visibly upset, the management then said you can leave now, so I did. She made a comment that she thought I was too stoic during the “letting go” convo but I was unable to communicate at that time that I wasnt upset that I was let go, I was upset because it was done in such a non precise manner which left me confused. Looking back at it now what I should have done (this happens a lot, in the moment I dont react right away) was say that no I dont wish to continue working any longer. Because I didnt want to work any more. I had made the decision to quit recently, which I was working up to doing because I have to plan that shit out to be able to do the thing. But now Im sitting here wondering what Im supposed to do tomorrow. Because tomorrow is my next shift. Am I supposed to call in? I dont fucking know. If I dont call in, will they call wondering where I am? But why would they care where I am if Ive been let go? And why the fuck do neurotypical people leave conversations so open ended like that?

So that is where Im at now. Just trying to process the most recent events in the past two years. I had made such progress at first. The work program did help in that it helped me get therapy and stuff like that… but I was also being held to neurotypical able bodied standards. Which I could keep up with at first, but the longer I did the more damage it did without my realising it until it had already became a significant problem.

So now, I guess I will just call in in the morning to be sure. And then I will begin the journey of getting my shit together. Again.

Im gonna need to find some hobbies.

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I’m baaack…

Two years ago, I stopped writing. My health declined in such a manner that it took precedence over everything else. And I mean everything else. Not only did I stop writing, I lost interest in all things from hobbies to my own existence. By that I mean depression took over.

I’m posting this from my phone, a quick update just to get started writing again. I really hope I keep this up.

I’d like to say I have this all planned out. That I will be writing all about my journey over the past two years. However, much of these two years are a bit of a blur. Most of my time was spent lying around wallowing in my own depressed thoughts and watching Supernatural reruns. My social life (what little there was) disappeared. When it came to parenting, I managed the bare minimum. And what little I did work became very difficult to continue. I wish I could say I’ve made great strides til now but to be perfectly honest I’m only recently beginning to give a damn about anything. Having motivation to do things when one has depression…. well, those who know… know. Anyway, point being I’m on here now so that’s something, right?

So after the past two years of doctors and depression and trying to figure out how to get my shit together, I’m finally ready to start doing things. So here I am, doing this blog thing.

I know, I know… I have regressed in writing skills. I’ll work on that. Promise.

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The last few months and looking for work as an Autistic adult. Yay.

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.

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Journal: Update on health stuffs…

This past month has been difficult. Not only health wise but mental health wise. Due to the stresses of waiting for results, my anxiety has been skyrocketing, even though my heart meds totally calm me compared to how my anxiety used to be.  And my depression has reached some rather really low points as well. While in those vast abysses Ive learned to just sort of ride the wave, so to speak, until I came out of the other side and kept going.  But of course, I wouldn’t recommend another doing such a thing without going to a mental health professional and discussing what their options are. So don’t take what I say as an example to follow. I do have a shrink I discuss things with, and while Im not on meds at the moment, it might be possible that I need them in the future.

The day after my last post, I had an appointment with the haematologist, to discuss my latest blood test results.  He seemed nice enough. So I sat down, anxiety ridden, and he says my platelet count has dropped to the line of being a “high normal”. It all seemed rather anti climactic, really.  I was expecting to hear that I had a baby alien living in my chest and only had moments to live, or something equally dramatic and scary.  But apparently, whatever had my platelet count up when I had to stay in the hospital, was either correcting itself (probably some kind of an infection) or had run its course…  they still couldn’t tell me what it was.  But the relief was rather nice, and made me forget all about the questions I had lined up for that appointment. So I left feeling rather disappointed. Not disappointed in the not dying part, but disappointed in the fact that I still don’t have any real answers as to what caused that sudden influx of platelets along with my very scary heart thing.  And not to mention, the abdomen pain, I still have it. But a CT scan shows nothing wrong. So what the hell?  The doc said its most like IBS (irritable bowel syndrome). Which, has a tendency to pop up in fibro patients, so that one wasn’t really a surprise. But again, disappointing. It would have been nice to pin point something, treat it, and possibly feel better afterwards.  No such luck, not at this time.  I go back in two months for another blood test. So, more waiting. Fan-Fucking-Tastic.

After that visit, and a few days of overthinking the very boring results, I decided to make an appointment with a gynaecologist, for the regular checkup. This is a doc Ive always been too anxious to make an appointment with. But I managed to make the appointment. I have an IUD that is way past due for replacement. And I can’t help but wonder if perchance, the issues Ive been having, are they due to that? Only one way to find out. I don’t have any super serious pains in my pelvic area or anything, but PMS is a major bitch. And on an IUD, periods should be basically non existent. Which they were for a long time, but PMS reared its ugly head a while back (longer than Im willing to admit) and that is usually a sign its not working anymore. So that unidentified infection may be rather easily identified, perhaps? But hey, Ill know in a little over a week.  I also made an appointment with my regular doc, and can’t remember why. I know I had a reason in my head as I made the appointment but it just *woosh* left my mind as soon as the appointment was made. Im sure it will come to me before I get there.

So now that all the scary stuff is over with, for now, I can get back to the regular routine of the kids going to school, getting the DB back in speech therapy, and finding work for myself. What I *really* want to do is find my way back to University. Perhaps Ill look into it later. First things first, gotta get my shit together and take care of these kids.

Anyhoo, thats all for now. Thanks for reading.

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Journal: Health issues, hospital stay, blood test results. Anxiety.

I had planned to write so much over the summer, alas, that didn’t happen like I wanted. Instead, I have been consumed with fears about my health.  A hospital stay, blood tests, and waiting have taken up all of my head space. So this is about that. A personal post.

For the past few months, regardless of any physical activity I have tried to keep on a regular schedule, I have been more exhausted and in more pain. Mentally, I feel fine. Which is a plus. But physically, it is like no matter what I do, everything hurts and I always feel sick in some way.  So mid summer one day, I nearly fainted. I chalked it up to not eating that day. But then the next day, it happened three times. So I decided to go to the hospital. As I was standing up to go tell my brother to drive me, I collapsed. Not only was I incredibly dizzy, I could barely breathe and felt so so tired. It was like I had ran a friggin marathon. My heart pounding and irregular. (I don’t think there was any pain, nothing serious anyway, but pain is difficult for me to notice sometimes) I spent the night in the hospital due to an irregular result from an EKG at the night docs office. Turns out it was atrial fibrillation, and I was put on meds to stop that from happening again. They asked me question after question. Any changes to diet, have I been injured, etc. I couldn’t answer, for as far as I know, nothing has changed. So a lung X-ray and an MRI of the abdomen later, they told me they couldn’t find anything and sent me home. I then got a call later that day telling me that my blood test showed a high level of white blood cells and I was given an apt for another blood test. Then another appointment to speak with the haematologist. At that appointment I was told that my platelet count is high. So I was to have ANOTHER blood test done and then come back in two weeks. They mentioned a possible bone marrow biopsy, which sent my anxiety through the roof, but they assured me that something would be found in my blood tests. They were probably trying to make me feel better. But the fact remains, my autistic brain took it to the overthink level and I, of course, had to research as much as possible.  This next appointment is tomorrow where I get to hear the new results. Ive read as much as I can find on what the platelet thing means, there are too many conditions that can cause it. So of course, Ive been trying to keep track of my symptoms to maybe try to figure it out, so that Im not surprised at my next visit. To no avail, I might add. Because I have never been really good at pinpointing exactly where and what hurts.  Which is an autistic thing, apparently. High pain tolerance and difficulty gauging physical stuffs. I feel the pain, but the severity doesn’t register. I have abdomen pain pretty much all the time, but the last scan showed nothing wrong. Oh, I forgot to mention the docs said, two weeks ago, that my spleen is swollen. Which is a result of the high platelet count, or could be several of those conditions that I mentioned earlier. One good thing to come of all of this, is that the heart meds, while the side effects sucked balls for the first couple of weeks it has totally helped my anxiety. I still get anxious, but I don’t get it to the point of being completely disabling in the moment. So there is that. Silver lining. Trying to keep it positive.

Just reading about the platelet thing sort of helped, but it also gives me pause, because some of the conditions that cause a high count are rather scary. While the logical part of my brain is telling me to stop googling and just wait for the results, all the rest of me is going to the worse case scenario. And I hate waiting. I hate it so much.,

Anyway, this is what is on my mind lately. Apologies for grammatical errors and such.

Thanks for reading.

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