#severe m.e

ITS M.E AWARNESS WEEK

I've almost starved to death 2 times now each time ignored by doctors! Here an image of how it strips me of everything it #meawareness week #cfsme learn here meassociation.org.uk/me-awareness... or via

Yesterday I was watching Johan streaming while playing World of Warcraft. The stream had about a 15-20 second lag. I was talking to him using Mumble so occasionally heard my own voice through it.

I hadn't realised how obvious it was when I have to force words out. I can hear it. And Johan can too- he says it's how he can tell when talking is difficult for me. I thought no-one would be able to tell but I was wrong. It took hearing what I sound like when speaking is hard to realise it (also, I sound way more high pitched than I do to myself, though I figure that bit is common to everyone). 

It explains why Johan makes it easy for me to use alternative communication methods when I'm finding speaking hard. Most of the time I prefer to speak as it's quicker than typing, but when he gives me options I can indicate non-verbally it makes my life so much easier, especially when I haven't figured out I'm struggling. Sometimes he forgets and gives me two options that I can't answer yes or no to, but he's started telling me how to indicate the different options when he does so (I tend to struggle with figuring that out while also trying to process speech and trying to choose).

Johan has his own speech difficulties and I often have to remind him there are alternatives. Meowing works remarkably well for both of us in a lot of cases, but some stuff does need a bit more information and so I have to remind him to go get his tablet to type on. When having to deal with other people it can be annoying, especially when they only accept speech as an acceptable method of communication, but between the two of us it's easy. It's one of the reasons I love him :)

Feeling lonely tonight though. Some of that is not coping very well (more ill than normal + less painkillers than normal = grouchy painful Danni) and some of it is Johan being super busy tonight (meeting then World of Warcraft raid straight after with no in-between time other than 30 seconds for giving me painkillers). As speaking verbally is really hard didn't speak much to carer and she was talking about stuff that was making me feel guilty and worse.

Normally it would be fine. But the combination of me feeling really bad on a day where Johan is unavailable for 5 hours straight, my sister having to cancel visiting tomorrow as she's injured, and not knowing when I'm next going to see anyone other than Johan for anything non-medical is making me feel rather disconnected and sad. I also feel guilty for being jealous of Johan being able to do things and feeling guilty for putting so much pressure on him.

Conclusion is that new bed is good. I woke up every 5 hours or so to adjust position, and once Johan woke me up for painkillers before he left to go for counselling. My hips, back and shoulders weren't in agony, as would normally be the case having stayed in one position that long (with my old bed I'd wake up every 60-90 minutes to roll over from the pain in my hip).

I woke up to a council gardener using a lawnmower outside. I was able to raise the entire bed up so I could look out of the window and see who it was. I was able to raise the head of the bed to watch some telly without needing help to raise my pillows. When it's on the lowest setting (where we normally keep it) I can reach the floor and because there are safety rails we don't have to worry about me overbalancing and falling out, which used to happen a lot (I have a tendency to drop things and don't like needing help). Also, me and Johan both like technology and stuff so have been playing :P

I'm very grateful that this one piece of equipment has already helped me, and in the long term it will prevent me getting bed sores, allow me to practise sitting up so that eventually I'll be able to spend more time in my wheelchair. Thanks to the NHS I don't have to pay anything towards borrowing it, and they also cover all maintenance and stuff. If any part of it turned out to be unsuitable, or I get worse and need more pressure relief or similar, they'd sort it out. If I improve to the point where I don't need it any longer, they would come and take it to be used for someone else who needed it.

The district nurse who ordered it even managed to get it delivered while I was in respite so Johan was able to remove my old bed before it arrived, with only a few days notice (she visited and ordered it on Thursday, it was delivered on Monday).

I may complain sometimes about waiting times and problems, but I'm incredibly proud of the NHS. I get the healthcare I need without having to worry about the cost. I'm completely unable to work (originally wrote walk- can't do that either) and Johan's full time job is looking after me, so we both live off state benefits which are enough to give us an okay standard of life (we're not rich but unlike those on just job seekers, we're not struggling either). If I go into hospital, need to see a doctor, or anything else healthcare related then I can get it without needing to worry about the cost. Those who work need to pay for prescriptions (set cost of 

I'm worried. The government is trying to privatise the NHS. Those of us who use it frequently know it has its problems, but it's one of the most efficient health services in the entire world, and privatising it will only make things worse, not better (we've seen that in every other industry privatised so far). That and the trying to through the ill and disabled off benefits, the obsession with getting everyone into work (even though there's no jobs), the bedroom tax (which we're affected by) and stuff is getting bad rather quickly. My own MP is really good (Ian Mearns - he's Labour but actually cares unlike most of the party) but the Con Dems and most of Labour really don't care.