Dec 182012
 

I am frustrated. I’m fed up of being in this position and not being able to do anything to get out of it. The combination of autism and ME is making dealing with both harder.

I’m frustrated that I’m still stuck in this relapse, and showing no signs of improving. Normally by this point I’m starting to be able to manage being propped up in bed, can have lights on in my room, and can cope better with Johan being in here. I’m not improving. I suppose the good news is I’m also not getting much worse either, though I’m still having periods of paralysis, times where my muscle spasms are so bad I can’t use my tablet, and I’m still in more pain than I’m really able to cope with. I remembered a guildie in WoW had offered to get me some pot for the pain, then remembered that was Glamourpuss and he died last week. He was really an awesome guy and I’m going to miss him (and not just because of that- he was generous in many ways, along with being funny and a nice person to talk to and play with). I do believe cannabis should be available for pain relief, as I know it helped him a lot with his cancer pain. I saw a BBC News article about pharmacies selling prescription drugs and the first thoughts I had were where. Johan is going to speak to my GP today so hopefully something can be sorted.

I’m frustrated by little things. I meant to book a delivery slot for a food shop last week and forgot. I wanted to send my friends Christmas cards and have been too ill. I don’t have enough money to get Sammie everything on her wish list (and I know most parents are in that position and she doesn’t need to get everything, but it doesn’t stop me wanting her to have it all, especially since I know what it’s like not to get what you really want). I’m frustrated that I’m unable to do anything about my hair, which hasn’t been touched since a few days before I relapsed and now feels really uncomfortable. I’m not even sure if it’s possible to detangle now. I want to watch videos for Project for Awesome, including one Sanabitur Anima Mea made, but I’m too ill. I’m frustrated there’s so much world suck and I can’t do much to fix it.

I still have no speech. I’m pretty sure this is more autism than ME, as I’m able to make noises (if it were ME then I wouldn’t be able to make them as I wouldn’t have the energy). Attempts at talking just come out as either nothing or random stuff. The silly thing is I can make some sounds reliably, they’re just not necessarily the ones I want to be able to make. I can make a meowing sound. Squee turns into eee (happy noise). I’ve noticed I’m better at vowels than consonants, which someone on Twitter says is easier for them when ticcing. I know what I want to say, just can’t figure out how to produce the right sounds.

I feel a bit like a toddler as that’s kinda how I sound, and I try to use gestures to communicate along with whatever noises I can produce. I know that this has happened many times before, and normally the ability to speak just comes back by itself, but it’s never been gone this long before. When I was younger it was rare for it to be gone more than a few minutes, so apart from being yelled at when I didn’t respond on demand no-one noticed apart from me, and I didn’t know that it wasn’t usual. Sometimes (normally after a panic attack or complete sensory overload) it would be gone for a few hours, but once I’d recovered enough it would be back.

Since I got ME it changed a bit. Occasionally I’ve woken up without the ability to speak, and it came back either later that day or after sleeping again (in fact, sleeping used to be a pretty reliable way of getting speech back). I’ve had times where it’s been gone a few days, normally during a relapse, but sometimes that’s been because I don’t have the energy to speak (I’d be unable to chew at the same time, for the same reason). I know I’m in a relapse now but I can chew and my swallowing isn’t too bad, so it’s not an energy thing. I just can’t do speak, and it’s very frustrating.

Typing has always been easier than speaking for me, though speaking is normally faster. Reading is easier than listening (both because I have auditory processing issues, most noticeably if there’s background noise, but also because it’s harder for me to remember what’s been said, which doesn’t apply when reading). I do type when I can’t speak, but there are problems with it. First, it’s tiring in itself. This doesn’t matter so much for things like blog posts and Twitter, as I can take breaks whenever I need, for as long as I need. If I’m trying to have a conversation in person, they’re not always going to be able to wait for me to have rests while responding. Secondly, it’s slower, especially now I’m often unable to type using a hardware keyboard. This not only means the other person has to wait, but I’ve got to try and remember what they’ve said and what I’m wanting to say while typing. I frequently forget one or both parts of that, so I have to give up on responding to them.

The problems with using typing when the other person is speaking have been most noticeable when I’ve been trying to do it in appointments or in hospital. They’re also normally the situations where I most need to be able to communicate effectively. I’m working on ways to reduce the problems (making a health passport for common questions, looking into alternative forms of AAC that will work better in that situation) but I get frustrated because not only do I often end up not being able to communicate what I need, I’ve had to put so much effort into understanding what the other person is saying I end up getting payback from the effort, which is the last thing I need during a relapse. Johan helps a bit, but he has a tendency to forget or mix up certain important information (he can never remember my weight, and has said I’m more than a stone heavier than I was on more than one occasion). Also, when he’s reading what I’m typing for me, he sometimes doesn’t read everything I type, which has meant my doctor didn’t understand exactly what I was meaning.

I also feel very vulnerable. I can make some noises, but I’m not able to shout due to ME (that is an energy issue). When Johan is asleep and I need him, it can sometimes take me an hour to wake him up (often after resorting to phoning him, the noise of which makes me more ill). When he’s on his computer, he gets distracted and doesn’t see that I’ve been messaging him desperately for a while. We have a care call system, and I wear the button around my neck (and frequently get strangled by it during the night), but it’s so loud it sends me into overload, they don’t know I’m unable to speak (due to the loudness of the system I’m always non verbal for a bit after it’s been on) and they don’t know anything about me, so it’s unlikely I’ll ever use it. Then there’s the fact I can’t actually puts the button most of the time because I don’t have enough strength in my hands. The one good thing about it is it’s connected to the smoke alarm, so they automatically get alerted if it goes off. It means if there’s a fire and Johan is out, I’m less likely going to end up dead.

I feel most vulnerable when Johan is out. If the phone goes, I can’t answer it and it makes me panic. If the doorbell goes, I can’t answer it as I can’t get out of bed. If the doorbell goes continuously and there’s also someone banging on the window, which has happened more than once, I’m terrified. I have access to my phone and tablet in bed. I know I can text 999 (I’ve registered for it) but I’m not aware of an equivalent for 101 (non emergency police number). Sometimes the messenger service Johan and I use, Google Talk, messes up and he doesn’t get the messages, which is more important when he’s out. Sometimes he just doesn’t realise he’s got messages. I can ring his phone to let him know I need him urgently, but then I have to follow that up with a message to let him know what the issue is. I also am not sure what classifies as an emergency enough to use 999 when it’s not a fire.

If I only had autism (and the anxiety that goes with it) to deal with, I’d still be vulnerable but as I’d be able to get around independently and at least open the door. I had many years learning how to deal with things as an autistic, and though I’d never manage completely independently I could manage life okay, and probably finish my education and look into jobs. I’d be able to throw extra energy into communicating like I used to do, and recover relatively quickly. If I only had ME to deal with, I could learn to pace properly (autism means I struggle with transitions so having lots of short activities interspersed with rests is counterproductive for me), be able to communicate better and possibly wouldn’t be as sensitive to everything. The combination makes everything harder, as it multiplies the issues.

I kinda feel bad not being positive and being all grumpy, but I’ve had a bad few weeks and I’m in pain and everything sucks. I am lucky to have Johan and my friends and an awesome daughter and my tablet and everything, but right now it doesn’t feel enough to cancel out the frustration and grumpiness. Also, I’m in pain. Everything hurts and I don’t like it and I just want it to stop now, please.

 Posted by at 8:22 am

  6 Responses to “Frustration”

  1. *hugs* you‘re so much braver than I would be in your situation.

  2. It must be exhausting being pulled in the different directions that your two conditions require you go. I can’t begin to imagine how hard things are for you, but I wanted you to know that someone is listening and hearing your pain. Sometimes that is all we can offer, a virtual shoulder cry on, and sometimes that is enough. I hope it helps you – just a little bit. I hope the relapse begins to improve soon. I know you can’t see the end at the moment, but I’m sure it will come when you least expect it, and things will slowly begin to improve again.

  3. *hugs*

    Danni, I will be praying for you lovely. I’m always here thinking about you, I admire you greatly. You’re so brave, God will come and help you through this tough time.

    Abbey

  4. I think you are so strong all the time, you are allowed to be grumpy when you are having a bad day/week/month. I don’t know the answer to contacting the police in a non-emergency, but you know I am an email/sms away. I can come around when I’m not at work, even if you are having a non-verbal day!

    Now to finish this comment with something positive, uplifting, motivating and inspiring…..erm…..penguins!!! 🙂

  5. Danni, you do not have to feel guilty for not being positive. Things are bad and it is ok to let yourself be sad. I love you and hope things improve.

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