16 October, 2013

Advice, movement, and the doctor

I don't respond well to certain kinds of advice on this blog, because when I write about personal stuff I'm usually just trying to give an example of what a particular thing is.  When someone tries to suggest solutions to something I obviously don't think there is a solution to, this just comes off like they're telling me I'm wrong and I don't know how things really are.  It's okay to flat-out disagree with an idea, but at least say so instead of giving me a (usually bad) suggestion on how to deal with a personal problem that I was just using as an example.

I usually do not talk about disability-related things to most people, because the majority of average responses are triggering to me.  I'm hesitant to say triggering since I don't have PTSD, but I guess it seems like a useful word because even though I think their responses are wrong, I know my reaction doesn't make sense.  I end up thinking about it at least all day, crying really hard for a long time, and sometimes doing stuff that isn't a good idea.

I can almost always avoid being triggered because I just avoid talking about these subjects with people I don't trust.  Unfortunately, sometimes it can happen even when people I trust just don't understand one small thing that I thought they understood.  It's so stupid that this happens because they didn't even do something wrong.

Anyway, a few weeks ago I got kind of worried because I started having trouble walking.  (I probably walk a bit Autistic but I don't have a noticeably different gait like some people with CP or neurological illnesses do.)

For periods of time, I started kind of stumbling forward or walking forward with one foot and dragging the other foot to the side.  One time, I actually couldn't stop walking and stand still and just stumbled back and forth while waiting for my friend to be ready to go.  Also, I started finding it really hard to move forward or up and was having to grab things and pull myself as much as possible.  At other times, I experienced a weird kind of sudden exhaustion where I would have to put my head down.

My idea was that this happened because I kept going places and doing stuff for three weeks without just sitting around and not thinking about things on the weekend (the walking problems appeared about a week and a half into this period).  As soon as I had a chance, I took a weekend to not move or do things, and since then, my walking is normal and most of my other moving is too.

I know that other Autistic people have things like this happen, but it makes me a little worried just because it hasn't happened to me before.  Also, this year my head has been involuntarily jerking to the side and dropping and rolling around and stuff.  I probably can attribute this to drinking a lot of caffeine, but both things make me nervous just in case they're a symptom of something.  If they aren't a symptom, neither of them really bothers me, but I'd like to ask the doctor about it just to know for sure.

I'll probably mention them to the doctor tomorrow, but it kind of sucks because I haven't told my doctor I'm Autistic and I won't be able to because I know I might get triggered if I do.  Since I can't explain that I'm under a lot of stress a lot and that it's not totally out of left field for me to have movement problems, I won't be able to give the doctor all the information about what's going on.

A while ago when I was posting about how I wished I could get help with things, a friend suggested that some mental health counselors are willing to help with cognitive problems.  This is something I would have to ask my doctor about to find out about, but that's something I won't ever be able to do at all because there's such a high likelihood of triggering things being said.

As a side note, sometimes I end up really upset when I go to doctors anyway because they give me instructions that I'm simply not able to follow.  I can't tell them that so it feels like I basically have no options.


  1. Dear Amanda,
    Your post touched my heart. I am on the spectrum AND have ptsd (yay!) so I feel I can share a tiny bit without truggering either of us - just to say how amazed I am by ways you have found to help yourself already. In the last few years I think the MOST helpful thing for me has been to take that time (even if it's five minutes in the rest room) to close my eyes and breath. Another thing is: pajama days. Gotta write a post about pajama days!!! So, ideally, every week my kids and I (one on the spectrum, the other with an attachment disorder) try to take a day where we just relax, stay in pjs, MAYBE go for a quiet walk. Read. A little screen time but not too much. Sending love,

  2. I'm glad you solved your walking problem. I wouldn't be too worried about having things happen that have never happened before; sometimes autistic symptoms can change, especially if you're under more stress than you used to be.

    It really sucks that you can't tell your doctor you're autistic/you can't always carry out their advice. It seems like they should be able to modify it for people whose disabilities make daily-living stuff harder for them, but I totally understand your reluctance to tell them. I would not be prepared at *all* to have an argument about whether I really have the disabilities I have in the doctor's office when I'm already tired and anxious.

    (I rarely go to any doctor, but everyone I do go to knows I am autistic. It is the first thing I tell them. My dentist has been my dentist since I was a child, and was more obviously autistic than I am now, and also wasn't the one responsible for telling him I was autistic; the psychiatrist I used to go to saw a lot of autistic children, so I guess he didn't think it was so weird to be seeing an autistic person in his office; and the women's clinic I go to for birth control just accepted it when I told them. But whenever I see a thread on the Internet about doctors I always feel like I won the doctor lottery, because I don't get any obnoxious crap from mine, whether about autism, about my size, or about my desire never to have children --- all of which are things lots of people get lots of crap from their doctors about, apparently.)

  3. I feel like I've probably done this and I'm sorry.

  4. I have to face something similar tomorrow: I have CFS, and I finally forced myself to switch doctors, because the old one was confrontational, never learned anything about CFS, and kept getting me all riled out: bad vibes all around.

    But I didn't want to change because she filled out the SS paperwork for 10 year.

    I finally realized I was putting off NECESSARY self-maintenance just because I couldn't stand the thought of making an appointment, waiting forever (she makes people wait ALL the time), and then dealing with her - so I got a new one from a recommendation.

    I will meet the new one tomorrow. She will do a physical. I don't want to overwhelm her - so I will let her ask the questions, and try to be calm and understanding. But she can't help me properly - I respond very badly to most medications, and can never take normal doses.

    I'm not looking forward to it.

    Glad your walking improved with rest. Hope you find ways to dump some of your stress.


    1. Thanks. Better than expected, but, in spite of an endocrinology background, she has NO experience with CFS - and an attitude that said she didn't believe in it.

      After I get the routine maintenance done, I'll probably avoid her most of the time - but it never hurts to do a thorough check every few years. Maybe than can find something actually wrong (within THEIR tests) that is fixable. Hopes are not high - Western medicine not doing so good for the 'invisible illnesses.'

      I just want to go hide under the bed. But I also don't want to die early of something preventable. So I grit my teeth and do it.

      I appreciate your good wishes.