This is not a post about all the love I feel for my kid and some other people, this is a post about the physical pain in my heart. I’m starting to consider that it could be something more than just POTS and PEM. My chest is hurting all the way to my shoulder blades. I’m getting physically and physically weaker and stay in bed most of the time now. I’m trembling, dizzy and warm but my hands and feet feel cold. My blood pressure is fine since I started medicating with methylphenidate and my heart rate is ok as long as I stay in bed. Then it speeds.
Why am I writing a post about this instead of seeing a doctor? Because, as scared as I am of what’s happening to me, I’m still more afraid of doctors in general and especially in an ER. My PTSD is keeping me. I feel stupid and guilty but that’s the situation.
So I started this blog a little while ago, wrote a couple of posts and then became quiet. Not because I lack ideas for posts but because my health went bad and, more importantly, I’m so confused about a couple of things and didn’t feel ready to share them. Well, I still don’t know if I’m ready but I’m so frustrated from being silent about it. However, I’m so grateful for all the amazing blogs I recently started reading. I need to read stories about autism and sensory overload for many reasons since most people around me tend to have no clue what I’m talking about if I try to discuss it.
Right now I am trying to understand my sensory overloads from different perspectives since there seems to be a number of reasons why I keep experiencing it. One of them is very different from what I thought this blog was going to be about but I want to bring it up. I’m talking about ME, myalgic encephalomyelitis. Some people claim ME doesn’t even exist, some people claim it does. I don’t know what to believe but I do know for sure that the Post-Exertional Malaise (PEM) I experience is very real. The interesting thing is that even though the symptoms in PEM may look like the symptoms in a meltdown I experience a difference. It’s hard to describe it but a meltdown means that words can’t be pronounced, crying, screaming (if it’s really bad) and such an overload that I’ll do anything to get some kind of release. It’s a traffic-jam in my head. PEM, on the other hand, means higher body temperature, feeling like I’m having a flue, more physical pain, almost fainting, a sore throat, having to take my contacts out since my eyes hurt and a specific kind of headache. An interesting difference is that the meltdowns I’ve had since I was a kid while the PEM started a couple of years ago. These descriptions aren’t complete since it’s the first time I actually comparing them, but it’s a start. When both a PEN and a meltdown happens, me sensory sensitivities are heavily increased and this has confused me a lot.
So, this was a start. Trying to figure out what is what isn’t going to be easy but I need to understand.
I’ve experienced sensory overloads with meltdowns and shutdowns for as long as I can remember, meaning since I was around three years old. However, I didn’t have any proper words for it until a year ago and I still find it difficult to explain and talk about since most of the times I have tried to explain it to doctors, psychologists, physiotherapists and people around me they have no clue what I’m talking about. They misinterpret it as anxiety and push me to challenge it just like I’ve done all my life. Challenging instead of respecting limits is how I ended up in the mess that’s my health today but still, sensory overload isn’t something professionals (or people in general) know much about in the country I’m living in.
Being forced to stay in noisy, visually messy environments, collapse, being punished and then pushing myself to a new collapse is what my life has been all about. It haunts me in my nightmares. It makes me scared of other people. It makes me feel detached from people. It’s not only that it happened, it’s the fact that people blame me for it or act like it didn’t happen. It makes me think that I’m such a strange creature that nobody will ever be able to relate to me.
Then, there’s my kid. One of the few people I feel strongly connected to. I see how people keep insisting on doing the same thing to my kid. Keep saying that of course it’s important to prevent sensory overloads but then when it comes to actually do something to prevent it it’s harder. Suddenly I’m exaggerating and the restaurant isn’t as noisy. Suddenly a playdate with new kids in a new environment the day after a demanding day is an excellent idea, no matter what I say. Suddenly everything I just said doesn’t count. So I fight. I fight with all the power I have and explain, argue, give examples, educate, give workshops for free even though I’m too ill to eat and sleep. And my kid finds ways of communicating his experience that are amazing. People not listening to me is painful, people not listening to my kid – I’m angry beyond words.
I will never stop fighting for my kid’s right to live his life without painful meltdowns and shutdowns. Not because I’m some sort of saint but because I’m his parent. Because keeping my child away from people and situations that are hurting him is what I consider responsible. That doesn’t mean it’s easy. It hurts like hell every time I’m reminded of what I went through every day as a kid. It hurts to realize that it actually did happen, that my mom’s inability to respect my limits and way of functioning isn’t something I’m making up. It’s making me relive my nightmares over and over.
Does this mean that it’s time for my to start dealing with my past? Is it time to start dealing with my PTSD?
This thing when people around me present a plan with the words “I think it will be great if….”. I explain that no, that will cause damage to my health and they keep insisting on what a great plan they’ve made. I didn’t ask for a plan. There are so many things impacting what I can and can’t do that you don’t know about and I’ve repeatedly asked you to not bother me with all these ideas you think I need. All the things you think I should do. Why do you keep doing it? Why do you ask again when I just said no? It’s hurting me that it keeps happening.
Sometimes I read stuff that makes me question this world and my experience of it. Sometimes I just want to scream with frustration when I see the assumptions people make. When I read that autism prevents people from having deep connections with other people I don’t know what to believe. I just spent a couple of hours with a person who is diagnosed with autism by professionals, and as usual I experienced a deep connection. Probably one of the deepest connections I’ve ever had to anyone. Does that mean that my thoughts about me being autistic are wrong? If this sense of connection is mutual and the other person is sharing it – are they misdiagnosed? I don’t think so. But I don’t know what to believe about myself.
I do know that we share the experiences of sensory overload, meltdowns and shutdowns. We share the need to process extensively. We share the experience of being overwhelmed by sound and light and other peoples emotions. And deep, deep inside we share the experience that many people around us really don’t get what we go through during an ordinary day.