It is so hard to do things lately. Too hard. Hard to think. Hard to work. Hard to play. There are very few people that I can stand to be around. The rest make my skin crawl.
It is loud in my head. Too loud. Sometimes it is background noise. Now it is very loud. I hate it. Sometimes it gets so loud it hurts. Hurts like an ice-pick being jammed into my head repeatedly. That keeps happening lately. I don’t know why. Emergency meds help, but knock me out. Sometimes K can help. Not really sure how she does it. Thanks K.
When it is bad like that, it makes me cry. I hate that. I try to avoid it for as long as possible. Still, it almost always happens anyway. I know that crying isn’t bad but I hate it. Brings back bad memories. Crying is not bad now but it used to be. It can make everything worse if people are messing with you. Nobody messes with me now. Just my own brain. Ridiculous.
I say that I am an autistic person who does not want to be cured, but when things are so bad, I am not sure if that is true. When I woke up this morning, I was confused and disoriented and it was very loud in my head. I didn’t have enough energy to deal with it. I just wanted to wake up like a normal person does. Sometimes I want to be ‘normal’ so bad. I want to be able to work. I want to be able to play video games. I want to read. I want to be around people easily. I want to be able to make plans ahead of time. I can’t do that now. I never know what life will be like from one minute to the next. I hate that.
I am whining and complaining. I am very lucky in about a million ways but sometimes I have to get bad things out of my head. This morning when I woke up, the only way I could think of was to pound on my head with my fist. I know that is not a good way to do it. But it helps. Like cutting and burning do. I don’t do those things anymore. I think that writing is better than those other ways but you have to be able to think to be able to write. At least enough to get paper, pen, computer, whatever.
Lately it is hard to remember things for more than a second. Worse than usual. Not sure why things are like this now. Probably because there are too many things going on. It happens every time but still I choose to believe that it will be different the next time. It never is. But I can’t give up hope. Things always get better. Then there are too many things again. Then things get bad again. circle circle circle circle circle. 41 years going around that circle. It is all I know. It is not all bad. Lots of good parts too. I am rambling.
Went to the water. It helped a little. Nice day out. If there was a magic pill that would make me better, would I take it? I don’t really know. Anybody reading this who thinks about these kinds of things, would you take it? I am confused.
8 thoughts on “Too Hard”
That sharp pain sounds like it might be icepick migraine”, in which case the doctor might try different medication. Migraines can be accompanied by a variety of different overwhelming sensory phantasms.
Much sympathies over here; feel free to correspond.
Poor sweetie 🙁 You are allowed to whine and complain! Just because you are lucky in a lot of ways doesn’t mean your suffering isn’t real, legitimate or worthy of empathy!!! It will get better though and I will rub your head in the meantime 🙂
I’m so sorry to hear this! Hang in there and know that I’m thinking about you.
“I never know what life will be like from one minute to the next. I hate that.”
oh brother, did you get those words from *my* brain? =|
Thanks andrea. I will check that out. I get regular migraines sometimes too. Never heard of the icepick variety.
Thanks to sweetie and spins too. Things have been much better the past couple of days. I appreciate your thoughts (and head rubs) very much. I think they help somehow. Remind me that I am not alone and that things will get better.
d, I think our brains probably have quite a few similar words going through them. Lucky us. I am sending the surplus of happy hippy energy that I have gotten over your way. I know how you like happy hippy energy 😉
Have you tried Epsom Salt (magnesium sulfate) application? As possibly (partial) reason for sensory issues in ASD may be the lack of a neural “volume control” on neurons in the various sensory centers of the brain. The control is created by a network of chondroitin sulfate molecule, by regulating ion traffic outside the neuron. She speculates this may be at least partly responsible for the sensory differences seen in autism. (This is from an unpublished paper by Susan Owens, who is active on a number of the autism yahoo groups, specifically the sulfurStories group)
The molecules of course depend on sulfate, and the molecules can “turn over” in the body VERY quickly. Susan reports very rapid positive personality changes in her own father, herself, and her daughter – all of whom are NT – from the use of Epsom Salts.
You can tell from this that I am not a card-carrying member of the ‘neurodiversity philosophy’ – at least not as I see it today. I believe that I am somewhere on the ASD spectrum, though I’m not sure where.. As for ‘not wanting to be cured’, while I believe that ‘biomedical treatment’ can potentially ‘fix’ a lot of biochemical problems that are present in autism, I do not believe that it can ever ‘take away’ the positive traits of autism. This is especially true I believe with Asperger’s, which I believe is a mixture of a slightly different way of thinking (this is the kind of neurodiversity I would support), combined with various environmental insults – including vaccines (an assault on the immune system) – but also including toxic chemicals in the environment, mutations in the body’s metal detoxification system, and increasing environmental metal exposure (from flame retardants and other sources). Biomedical treatment can possibly ‘cure’ some of the *biological* glitches which result environmental insult, but we can never ‘correct’ (nor should we) an underlying brain structure which may be a little bit different from “normal” NTs.
There was a segment on an episode of 60 Minutes last year about a drug that was being tested for use in people with post-traumatic-stress-disorder such as rape victims. It appears to be able to reduce or eliminate the extreme panic and anxiety related to traumatic memories. There are some (specifically President Bush’s Bioethics Commission) who say that this is immoral because it ‘takes away part of a person’s fundamental being’.
At the end of the segment, a rape victim who had suffered for decades from anxiety related to childhood abuse, who had undergone this treatment successfully, was asked if she felt she had ‘lost’ anything because she could no longer recall the terror of the rape memory. Her answer: no, she felt she had gained back a part of herself.
The same I believe is true of Asperger’s, and probably other kinds of autism as well. Many Aspies are very very functional, even more so than NTs. ‘Fixing’ biochemical issues related to *parts* of the disorder such as sensory issues as you described does not take away from this high functioning. It would only add to what a person could do. Carly, the 13-year-old autistic girl who recently “hit the news” because he had “learned” how to communicate, would not lose anything of her intelligence if her sensory issues were cured (which she described similarly, as it ‘being too loud’). It would only add to her ability to communicate and interact with the world.
~ Jim Witte
^ That was a very interesting comment, thanks for writing it.
lb are you on any anti-epileptic medication? I am and it has helped reduce the frequency of my migraines and lowered the amount of times I get “noise” in my head. I know you experience this differently to me but I decided to ask anyway.
I hope you are feeling better now.
Hi Jim. I never tried epsom salt. What do you think it would be like for a baby or unborn person to be “cured” before they had a chance to develop a personality? I know that they would probably have an easier life, but I wonder if they would grow up to be a completely different person than they would have if they were never cured; maybe even an NT.
Hey renaeden. I am not on any anti-epileptic meds. I had no idea they could help with migraines. I am always curious about anything that can help with the noise! Are you epileptic? I am feeling much better now. Thanks 🙂