Gah, Communication

(Wrote this on Tumblr yesterday. Figured it would also work here.)

Trying to explain my communication difficulties (to care workers, social workers and similar) when I’m verbal is really hard.

They assume that because I can speak (most of the time) I don’t have communication problems. Some will accept that I also can’t use the phone, but beyond that think I’m okay. Except I’m not.

I really struggle to ask for stuff. There’s a few reasons for this. Sometimes I forget what it is I need. Sometimes I know but can’t figure out how to ask for it (may have forgotten words, or just can’t get them out). Sometimes I can ask, but can’t explain the details. It means I’m not getting what I need done.

I’ve tried mentioning the obvious ones, like don’t ask open questions. Yet they still are asked, and no amount of asking them will let me answer them other than with something just to get them to stop (such as no for “do you need anything?”, when I need something).

Then there are the things being done, but are being done wrong because I can’t explain what I need (example: I need to rest in between tasks like washing and dressing, but as the care workers aren’t used to that and I can’t say I need to rest so I either try and get it done in one go and become more ill, or end up having to abandon it in the middle when I’ve pushed too far and it’s obvious to others).

Ideally, I’d have a list of tasks that I could have done, and then I’d choose from that. With reminders, such as when I’ve forgotten to have my hair washed for 4 months. I have a care plan but it’s not detailed enough, I can’t access it without help, and I’m not well enough to fix it so it’s accessible to me.

Johan has similar issues. Yet during his assessment for care, the social worker put down he has no communication issues because he could speak at the beginning of the assessment (he was barely able to form words by the end and I had to provide the answers to the questions, which was mentioned in the assessment). We both have large vocabularies and sound intelligent when verbal, so there’s the assumption we can’t struggle to communicate.

It’s not helped by there not being a place for autism. I’m under physical disabilities as that’s my biggest need, and they don’t get autism at all (I’ve been told I just have to accept strangers coming to provide personal care and not being told of any changes, which I simply can’t do). There’s currently an argument over whether Johan’s care will be funded by mental health or learning disabilities (in the UK, that means IQ under 75- we’re both good at the stuff IQ tests measure, so don’t count).

Autism isn’t a learning disability, but the kind of help we require is very similar to that needed by those with one, though it might need to be provided slightly differently (I know that’s not the case for all autistics, but it is for us). Autism isn’t a mental illness either, and treating it like one doesn’t work very well in my experience.

I’ve always felt a kind of kinship with those with learning disabilities, like we’re more similar than different. I excelled at academic subjects until life exceeded my ability to cope, yet understood what it was like to struggle to learn other stuff. Many of my friends over the years have had learning disabilities, and I know it’s confused people but they’ve been great friends.

We don’t really mind who provides the funding, so long as we get the help we need. I know we’re lucky to get any help at all. Yet the help I’m currently getting doesn’t quite meet my needs, and Johan’s been struggling for years without and nearly died because of it. I wish there were an easy way to fix it, but neither of us have the spoons.

Whoopsie, Backwards

Things went well in the care home until they didn’t. A couple of nights they didn’t check on me frequently enough, causing my pad to leak (I hate that, it makes me feel really uncomfortable and embarrassed, which I’m normally not about being incontinent). Then one night they pretty much forgot I existed. Well, the nurse knew I was there and gave me my medication, but she didn’t let the night staff know (they hadn’t been in since I’d gone in) so they left me for 7 hours. People on Twitter ended up calling the care home (thank you!) and they eventually sorted me out (after 2am), but by that point I was dehydrated, my hand were red, cold and numb from the window being open, and I was tired and still needed changing into my night clothes as I’d been out that day. The only reason I didn’t have a pad leak was because I was dehydrated. It was horrible.

I’ve not been as well since. I really wasn’t well enough for my chair to come home, but we did it anyway because I needed to. I was meant to see my consultant on the 16th June but that didn’t happen as though I was told to be ready by 12.30pm for a 3pm appointment, the ambulance to take me didn’t arrive at mine until 3.20pm (and my consultant is super busy so they couldn’t fit me in later). Apparently we should have told them the appointment was time sensitive. I thought all hospital appointments were?! In a way it was a good thing as I wasn’t well and I was dreading the travel.

My 28th birthday I mostly slept. When I was awake Johan got me a McDonalds as I really wanted one and he’d bought me some cupcakes from French Oven which were nice. I got some lovely cards and Vivacia Dreams sent me some awesome presents 😀 I am so lucky 🙂 Sammie also sang me happy birthday on Skype, which made me very happy.

Johan finally had his care assessment which said he has substantial care needs (same level as mine). He’s not too happy about it but hopefully they’ll provide the help he needs soon. They’re arguing over whether it should be learning disabilities or mental health who should cover him (as autism doesn’t fit either) but we don’t really mind so long as it happens.

We decided to get Sky Sports for a bit as we both like Cricket and Formula 1, and Johan is getting into football 😛 While sorting that out Johan managed to get us a discount and get us 152mbps broadband (though we somehow get 160mbps download- Virgin Media’s false advertising :P). He also ordered a SuperHub 2 which has (after a couple of days teething problems) fixed our wireless problems. We’ll have to wait to see if it’s fixed the router randomly breaking issue, though I think it probably has.

I also bought a Chromecast. I’ve been considering it for a while, and wanting to watch YouTube on my television without a couple of minute delay (how long it takes using the TiVo box) pushed me to get it. I’m really happy with it, as not only is watching YouTube videos really easy now, but I can also watch Twitch streams and play games on it. It’s also really easy to stream TV shows and films so I’ve watched a few more episodes of My Little Pony and I’m hoping to watch Brave soon.

I won tickets to the Durham Jets Twenty 20 match on the 4th July. I was hoping to be well enough to go myself (wishful thinking mostly) but when it became clear I wouldn’t be, we contacted NatWest (who I won them from) and got them transferred to Johan (who already has a season ticket, but yeah). My friend Sue wanted to go, so we gave her and her mum a ticket. Unfortunately the cricket never got started due to rain, but I did get to meet Sue which was awesome 😀 I’m hoping to see her again at some point, and my goal is to be well enough to go to the cricket next year.

Vicky also visited as she was back in the UK for a little bit from Palestine. It was really nice to see her, especially as last time she was here I wasn’t really well enough to talk to her. She brought with her a copy of the updated version of her book, Caged in Chaos, which I’d been intending to get for Johan (and will get on Kindle for myself when that’s updated because I currently can’t read print books)  and a gorgeous purple ring for me 😀

Otherwise I’ve mostly been Skyping with Sammie when I can and playing games with her, and having the odd medical visit (CFS team, who couldn’t do the transfer stuff because I wasn’t well enough; GP because of me drinking loads; district nurses due to bed sore on my ear) every so often. I’m resting loads, still getting the odd 16 hour sleep (not helpful for bed sore on ear), and hoping I start improving again soon. I am also slowly starting to accept I’m bendy, after Johan pointed out my arms bend backwards when I think they’re straight, and it looks like I meet the criteria for EDS with that and several other things. At some point I really need to list everything that may be relevant from my medical history (joint pain since I was kid, dismissed as growing pains for years; fainting as a teenager when stood up too long; stamina issues since childhood when walking; acid reflux since I was at least 5 years old; cuts and bruises taking months to heal; local anaesthetic not working; lots of other stuff) as what I thought was normal is becoming obvious that it wasn’t. Is hard though. It might not be EDS, but I want to find out as it’s genetic.

I’m hoping to fix my sleeping pattern at some point, as I’ve gone nocturnal again. Right now my biliary system is being annoying (gallstone-type pain) so I have to wait for that to calm down. Could be worse – I’m not screaming and distraction is working at least some of the time right now. Pain sucks.

I’m gonna improve at some point. Just a bit impatient for it to happen now 😉

Swish

I’m okay. Physically not great, but I’m coping. More explanation soon.

The world is weird. And good. Right now I can only access a tiny part of it, but I’m here and it knows. Speech and sounds lose meaning and become music in my head. Sometimes loud, scary and painful, but mostly gentle and pleasant.

I try and read on my tablet and the words bounce around and change shape and become something other than words. The things I can see in this darkened room gain colour and movement and dance. I let them, as it makes me know I’m here. I can still see them with my eyes closed.

I go back to the world of language and meaning when the room becomes brighter and I sense someone come in. The world I’m normally most comfortable in, the one I’ve had to learn it’s okay to leave sometimes. I used to only leave it when awake during overload, so found it scary. I know now that leaving words behind isn’t bad, especially as words take energy that is in limited supply. I need it to interact with people though, as I don’t know how to communicate without it.

I don’t know how to describe it properly, the world without words. I know others spend more time there, and are much more used to it. Many find it easier than words. I never used to, but now words don’t always make sense so I’m learning how to be without them again, like I know I must have before. Without overload it’s beautiful.

Super Sitting Success

I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) 🙂

Stuff has happened. Lots of stuff. Bullet point time!

  • Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
  • I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
  • I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
  • A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
  • Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
  • I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
  • I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards 🙂
  • Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles 🙂
  • Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that 🙁
  • Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
  • Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me 🙂
  • Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
  • Johan went to see the cricket a few times. I think he enjoyed it.
  • I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
  • I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
  • I had a bath! It was amazing! First bath since I moved house 😀 I feel properly clean. My hair also looks like hair, according to Johan 😛

Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).

I’ve done so much in the last few weeks and I’m really happy 😀 Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.

ME Awareness Day 2014

Danni on ME Awareness Day 2014Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.

That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.

My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.

If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.