Danni

Saturday 30th June, 2012Saturday 30th June, 2012 Danni

Dancing Penguins

Danni

I’m 26 now, have been since the 18th. Feels very strange to not be a young person any longer.

My birthday was lovely. I had my friend Sanabitur Anima Mea come around, and we had a bed party, talking and playing Draw Something. It was nice and exactly what I wanted to do 🙂 I got some lovely presents from friends (I got the ones from Johan earlier in the month). One friend got me some penguin bunting, some penguin pyjamas (the hoodie version of my favourite ones) and made me and penguin matching purple tutus. This was unexpected so it was very lovely 🙂 Sanabitur Anima Mea got me a sparkly purple penguin- the exact one I’d previously lost and was wanting a new one of, that was on my planned list 😀 That made me very happy.

I went to the Interface prom on the 20th. I wore a tiara I’d bought from Amazon, and managed a couple of hours there with a couple of breaks in the quiet room and outside. I had to replace my tiara with my ear defenders after a little bit but I was so happy to be there and to see some of my friends again. Johan unfortunately didn’t cope very well and panicked, but was okay by the time we got home. It was too noisy for him and he didn’t have his ear defenders.

I got some payback from going to the prom, so was rather ill until Monday. Tuesday though I was feeling better, and on Thursday I had a doctors appointment. That didn’t go quite to plan. The doctor is nice but unfortunately is the first person I’ve met that thinks exercise is the cure for M.E. She doesn’t like me using my wheelchair (the rest of my treatment team agree that it’s okay, especially since I can’t walk at all), and doesn’t seem to get severe M.E. as she didn’t understand when I told her what I was living with. I won’t be seeing her again but luckily there’s another doctor I can see who understands better. I am also thinking of sending her Voices in the Shadows as it may help her understand better.

While we were seeing her there was a thunderstorm. The ceiling collapsed in another room and all the lights went out. It was the first of three super cell storms to hit our area, and we managed to get home between the first two. It was still extremely wet and the roads were like rivers, but there was no thunder and lightning during that period. Johan got exceptionally wet (I’d taken my waterproofs to the doctors luckily) and other people also got a bit wet. There was one young man who tried to jump across the worst of the river on Durham Road, but landed near the worst of it and the water was well above the level of his socks (he’d pulled his trousers up). His friend looked at me and we both burst out laughing as it was such a funny sight. My wheelchair managed fine as it was tilted and the seat is much higher than my old chair. All the people we met on the way home commented on the weather.

We got lucky on Thursday- we missed the worst of it. Half a mile down the road some houses were evacuated as they were flooded, the metro system was under water, there were cars completely submerged, there was a pub about a mile from where we live where the water was up to the stop sign outside. Some people went swimming and canoeing in the streets it was that deep. No-one in the area had ever seen anything like it. Luckily there were no serious injuries- a few people had to be rescued and one person got slightly injured when a ceiling collapsed in Ikea. Most people pulled together to help each other, with the Go North East drivers apparently doing everything they could to get people home through it all. We were watching things unfold on Twitter and the hashtag #NewcastleEndOfDays was particularly popular. There were some amazing photos and videos taken- some people got a video of lightning hitting the Tyne Bridge.

I’m getting some payback from the doctors visit as we were out longer than expected, and it was a very draining appointment. Yesterday was a very weird day. I was in more pain than usual, apparently passed out for a bit and have a bit of time I can’t remember but apparently I really wasn’t coping during it. I ended up watching a bit of Pingu then some children’s films on Netflix as that was all I could do (luckily sensory stuff doesn’t seem too bad at the moment).

Today I had a visit from Vicky and her friend Sameeha, who is from Gaza. I have been following her on Twitter and she is awesome, and even more so in real life 🙂 She is very funny and has lots of interesting things to say. We had Lebanese food for tea and it was nommy. Vicky is staying overnight while Sameeha has gone back to her university. Vicky brought gifts. I have a rosary necklace from Bethleham and a Palestinian scarf thingie that I can’t remember the name of. Johan has a Palestinian football scarf, which he is very happy with. Lovely carer had been wanting to meet Vicky and Sameeha and was able to do so as she arrived just before Sameeha had to leave.

I am happy, though very tired and feel rather out of it. I’ve got a few blog posts planned but my brain is being rather weird at the moment so I’m not sure when I’ll be able to write them.

Sunday 17th June, 2012 Danni

Unexpected Sleep

Danni, M.E., Penguins!, Physical Disability, Real Life

Yesterday I woke up in the morning not feeling great, so when lovely carer came around we just chatted as I didn’t feel up to being touched. I sent Johan out around lunchtime to go and try and sort his bus pass out (he has an extra ticket on his Key) and then told him to go to Nandos, as he wanted chicken and I like treating him. While he was in Nandos waiting for food we were talking on Google Talk, and then without warning I fell asleep. (Johan also claims he wasted all the rest of the money on razor blades, but since that’s a necessity as I demand he shaves it’s not wasting money at all :P)

I woke up again after midnight, and I’ve been feeling much better since (for me, that is). That sleep may have been unexpected, but it seems to have helped a lot. Going to the prom on Wednesday seems more possible now.

Tomorrow (Monday) is my 26th birthday. I feel weird about it. AYME only support those up to age 25, as after then you’re no longer considered a young person. The friends I’ve made on the forums have been amazing, and helped me so much with coping with this illness. I don’t agree with their stance on a lot of things, but they are very good for helping members get in touch with each other. Luckily I know most of my best friends from there on Facebook and Twitter (from before they banned the sharing of that information) so that helps as I can keep talking to them 🙂

I’ll be joining AYME Graduates as soon as I can get a postal order sent off (WTB a way to pay online :P) and have already received a birthday card from the Graduates SAMs team (SAMs= Severely Affected Members). That made me smile 🙂

For my birthday itself I’m just going to have a friend come around, as dealing with a lot of people will set me back and would mean that I won’t be able to go to the Prom. I want to decorate my bedroom and think if I get some non-birthday specific decorations then I can keep them up to make my room look pretty after my birthday as well 🙂

Johan and lovely carer helped sort out part of my bedroom for me when Johan said they would. This has made my room look better, means I know where more stuff is and as I’ve got penguins on the top shelf of the unit opposite my bed they make me smile every time I see them 😀 There’s still some tidying and sorting to do in here but it can be done in little bits and pieces so that will be good. The bit they’ve already done means there’s more room for Johan to get around the bed when needed without needing to climb over it, and my wheelchair has its own spot.

I got a £10 Amazon voucher from filling in surveys last year, and used it to part pay for a purple snuggie (blanket with sleeves thing). It meant I only paid £5 and it’s awesome. I’m using it in bed for when I’m on my laptop to keep my arms warm, and think it will work well in my wheelchair as well 🙂

I’ve been going on Facebook more often now I use my laptop more (yay overbed table!), mostly to play Bejeweled (I like that game) but also reading people’s statuses. I have to remind myself that most people with ME can do more than I can (I remember that there are people who can do less than I can all the time) but it still upsets me when people post about getting a job or similar with a message like “if you really want it, you can do it”. I really wish that was true as I really wanted to finish my A Level in Computing. I’m just too ill though, and trying to push through it (as those posts suggest doing a lot of the time) is why I’m so ill now.

That’s not to say that people without severe M.E. aren’t ill or anything- I understand that in many ways it can be just as problematic, just the challenges are different. I guess what is happening is I automatically think people with M.E. are at my level or lower, and I need to remind myself that actually I’m pretty severe and that most people aren’t quite as ill as I am with it. (I also have a tendency to think I’m not as ill as I am, because I go out sometimes and mostly tolerate light and stuff, ignoring that I can’t wash or dress myself, or sit up straight, and am in a lot of pain even after painkillers and struggle with everything.)

I know that going to the prom on Wednesday is going to set me back, but I’ve been resting lots, will prepare well (going to take my eye mask, ear defenders, sunglasses to cope with sensory stuff, lie back in my wheelchair so I’m not too upright, and go out of the room as I need to for rests) and luckily most of the people there know me so it should be okay. I’m also going to rest loads afterwards to try and lessen the impact. I do know that someone I follow on Facebook who is a bit more severely affected than me (especially for sensory stuff) is planning on going to the Olympics, so me going to the prom is no more insane than that 😛

I’m going to get there. I’m building up slowly, though stopped doing as much to rest for the prom, but once I’ve recovered from that I’ll work on getting back up. I could be worse 🙂

Thursday 14th June, 2012Sunday 17th June, 2012 Danni

Noise is Bad

Autism, Computers, Danni, Gaming, M.E., Penguins!, Physical Disability, Real Life

The last couple of days we have had workmen in to sort out our new bathroom. It’s mostly done- the shower has been moved, as has the sink so there’s now more room in there and it will mean it’s easier for a carer to wash me. The toilet has also been moved back, but not quite far enough as when I tried to sit on it, I flopped so far back I nearly fell off and Johan had to rescue me. There’s just the floor to do we think. The new pump is noisy, but nowhere near as loud as the old one and I can cope with it fine with my door shut, and should manage in the shower okay with ear plugs, so that will be good. Johan can cope with it okay without anything 🙂

Johan has contacted the OT about the toilet, and also about the shower seat I’ll need (the closer to horizontal the better) and about a full assessment for things that will help me. I don’t mind buying the stuff I need if necessary (I’ve already bought loads that apparently could have been provided for me) but it would be helpful to know what would help.

I tried the no rinse shampoo. It’s brilliant for in between full washes, and makes my hair a lot cleaner than normal dry shampoo. I also bought some bath in bed wipes which are awesome- they contain moisturiser and one wipe does my entire body, so the pack of 8 for 99p is really good value. Much easier for my carer as well 🙂

I’d had to buy a new shampoo basin as my old one broke (the tube to drain it fell off) and went for the deluxe version instead of the cheapest one like last time. It’s well worth the extra £5 (£19 instead of £14, excluding VAT as I don’t pay it). It has an inbuilt cushion that I can rest my head on so I don’t have to hold it up myself, making it much easier. It feels a lot more robust and my carer said it was easier to wash my hair in it. All good for when I’m bedbound and until I get my shower seat 🙂

I’ve been doing really badly during the day- lots of pain, nausea, fatigue, brain fog, muscle spasms and such, but when night time comes I’m doing much better and can even watch stuff on Netflix. This is a problem as Johan needs to sleep at night, and really I do as well but I want to use my better time.

The workmen being in has been horrible, though I’ve just about coped using a combination of ear plugs, ear defenders and music. The hardest bits were when Johan was out (as I couldn’t block the workmen out completely in case they needed something) and when I had to concentrate on what someone was saying.

The new cleaner came Wednesday lunchtime, but as the workmen were here she couldn’t do anything. She’ll be back next week, as Wednesday will be our regular day. As she’ll be coming 2 hours a week hopefully I can look forward to a nice clean flat 🙂

In the meantime, the untidiness of my bedroom is really getting me down. Since I rarely leave it, and I’m unable to do any tidying myself (if I tried not only would Johan yell at me but I’d make myself really ill) I’m relying on other people, and Johan doesn’t seem to get how much it’s depressing me. He has promised that when lovely carer comes in the morning he’ll do some tidying in here with him. I hope he keeps to that. I know how I want my room to be and it will make it easier for Johan as well as make it more bearable for me.

I got my communication cards and my Media Mount for my Trabasack. The communication cards are awesome- just the right size, and on a keyring so I’ll be able to attach them to my Trabasack. I’m thinking of getting one of those stretchy keyrings to attach it with. The Media Mount uses velcro to stick to the surface of my Trabasack. I’ve only been using it to hold my tablet in place up to now, but it can be used in lots of different ways. I bought one but somehow ended up with two- going to try putting one on top of the other to see how that works 😛

I’m still hoping to get to the prom next week. I’m not well enough right now, but I’m going to rest and rest and rest and see if I can get there. I’ve just ordered a tiara as I really want to wear one, but the estimated delivery date is saying it might arrive afterwards. Not good 🙁 I need Johan to go into the college and sort out my locker, so he can buy the prom tickets at the same time. I thought I had no money left but it turns out I’m doing better than I thought I was- must have doubled up on a bill or something.

Johan picked up our clothes from Asda Wednesday evening. It turns out they’d been delivered to the store on the 6th June (estimated date 8th June) but apart from a note that one item was out of stock, they forgot to send us a text message or email to say they were ready for pick up. I was really brave and phoned up to ask what was happening. The guy on the phone had to ask me to repeat a few things as some of the sentences I was coming out with didn’t make any sense, and I had to ask him to repeat things a few times as I couldn’t hear properly, but I got there in the end. I even arranged a refund for the delivery cost of my trousers as they were supposed to be next day delivery but took three days. Using the phone is slowly getting easier, but it’s still not reliable.

I got a purple tropical sundress, a white long sleeve top (to wear under other tops/dresses when it’s a bit cooler), a pink skirt, and a 2 set bikini. It’s been years since I last had a bikini but I want to try hydrotherapy at some point and my swimming costume will be massive on me now. I’ve also discovered I’m a size 12 now, though I’ve bought a few items in a size 14 they shouldn’t be too loose hopefully.

I also bought Johan two pairs of black jeans, a black t-shirt and some socks as he needs them. Apparently the black jeans are his favourite type, as they feel really soft. That should be good for him 🙂

I’m finally accepting that I’m probably not going improve a lot any time soon. I’ve been mostly bedbound for nearly a year now, having pushed my way through college but damaging my health to do it. I’ve been unable to walk for about 18 months. I’ve reached the point now where I’ve stopped deteriorating, instead I’m bouncing up and down the severe end of the functioning scale.

Even at my best I can’t sit up unsupported for more than a minute or two, can’t hold a pen or cutlery, can’t answer questions for more than a few minutes (thanks, autism), can’t dress myself independently, can’t crawl or self propel my wheelchair, can’t wash myself. I often need to be fed as I can’t manage it myself. If I can get in my wheelchair at all I need it tilted and slightly reclined to be able to manage it. Johan has to help me with most transfers. I lose speech often. I struggle to follow conversations even in text, which is normally my strongest method.

At my worst I have to lie completely flat in a dark, silent room, with no interaction with anyone, and struggle to even roll over, or chew and swallow food. Pain is unbearable and even the smallest thing can be too much. Luckily I’ve only had two relapses that have been that bad, with the one in April not being as bad as the one in December.

I have things I like doing. I like reading Twitter, as I can dip in and out whenever I can and the short tweets are easy to follow. I like reading blog posts- it doesn’t matter if I understand them or not. I wish I could comment more on the blogs I read but that is often too difficult. I play Draw Something and Bejeweled Blitz with/against my friends. I listen to My Little Pony: Friendship is Magic music. I cuddle Penguin and Katie. I stim using my dummies (sucking, smelling, rubbing on my face, fiddling between my fingers). I chat to Johan or lovely carer. When I can I like going into the living room and watching television or playing World of Warcraft. I go out in my wheelchair.

Accepting that I’m probably going to be at this level for a while means I can adapt. I’m asking the OT for more equipment to help me manage. I can try and make goals that I can accomplish at this level. I can look into activities that I can do now, rather than ones that require me to have better control over my hands. I can try and stop overdoing it with things that don’t matter (Johan is trying to help with this).

The interaction between M.E. and autism makes life interesting. Not being able to have short bursts of activity with rests in between as I struggle with transitions, instead I have longer periods of activity with longer rests, which isn’t as good but works better for me. Not being able to hold things properly, I hook stuff around my hand or finger instead, or use my arms to hold things. Accepting that I just “phase out” of conversations and that everyone who talks to me is either aware of this or has it explained to them when it happens. Laughing about stuff. Celebrating everything I can do. Taking joy out of small things like colour changing light and penguins. I’m still happy.

Edit: Realised this blog post didn’t have a name. That is wrong so I’ve fixed 😛

Sunday 3rd June, 2012Sunday 3rd June, 2012 Danni

Silly Danni, Silly Body, Silly Brain

Danni, M.E., Penguins!, Physical Disability, Real Life

I’ve tried writing two different blog posts in the last couple of days but they’re not coming out how I want them to. Silly brain.

Danni in Spotty Hat — Danni wearing a spotty hat

I went out Monday, Tuesday and Wednesday in my new wheelchair. Monday I already talked about. Tuesday I went into Newcastle, bought a hat to wear as the sun was getting in my eyes, and then went to McDonalds. It was as hot and sunny as it had been on Monday.

On Wednesday I went into Newcastle again, this time to meet my friend Little Feet (her blog is at Chaos and Control and is well worth checking out). We’d only really spoken on Twitter before, but she is as lovely in real life as she is online. We had a drink in a coffee shop before she had to go to the airport to go home (she’d been in Newcastle for work). Afterwards we went to pick up Johan’s prescription for an inhaler (he’s been having breathing problems) then went and ate pizza. The bus home went over the High Level Bridge which I was very happy about.

Johan has been getting me birthday presents and giving them to me early. I now have a Lego Penguin keyring, some penguin drink chillers (you use them instead of ice cubes), and a penguin pillow pet, which is just the right size to use with the wheelchair 🙂

I may have overdone it as I was feeling the effects of the adrenaline on Thursday and Friday and was finding it hard to sleep, then on Saturday I slept all day after being up all night. I got paid on Friday due to the double bank holiday (something to do with the Queen’s Diamond Jubilee) so have bought some communication cards, some hair washing stuff for use while I’m still ill, and will also be getting some clothes for both of us and a media mount for my Trabasack.

I’m hoping that if I rest lots I’ll be feeling better again soon. Friday night Johan accidently set the smoke alarm off and my body responded by jerking violently and I couldn’t speak. I’m also in slightly more pain and more nauseous than I was. Silly Danni for doing too much.

Monday 28th May, 2012Tuesday 29th May, 2012 Danni

Whee!

Autism, Computers, Danni, M.E., Physical Disability, Real Life

I won that wheelchair last week for £95 including postage. It arrived Monday morning. It is a tilt in space and reclining self propel wheelchair, and it is much better for me than the old one. I am too tall for it really, but we use a pillow on the headrest and I don’t mind my legs sticking out a bit so it is fine. Went to the local shop and other than really needing a hat as the sun was so bright even with sunglasses (as I was tilted back a bit it was more in my eyes than it otherwise would have been) it went really well. I won’t be able to have it fully reclined when travelling on public transport as it makes it really long, but I can have it tilted and a little bit reclined on there which will help a lot. As I’m tilted I also don’t need the harness to hold me up with it 🙂

New care agency is still working really well. My main carer (Johan is calling her Lovely Carer) is absolutely brilliant. She does have a tendency to stay over time, but it feels almost like having a friend over than a carer (though she does help me with my personal care and any tasks we need her to do). She was off on Friday as she had a funeral to go to and it was her weekend off, so we got three other carers then (that is apparently too many and is unusual- I still think 4 in one week is much better than 15…). All three of them were really nice and lovely and talked to me like a human being, rather than being patronising. I did miss a couple of times as my sleeping pattern threw itself out (one night of insomnia where I didn’t get to sleep until 7am) but the carer then (the manager) was just worried that it was because it was someone I didn’t know. When I did meet her in the evening she was really nice and we were able to tell her how happy we are with things 🙂

Sunday night we did both have a bit of a meltdown due to another new carer coming when Johan was meant to be raiding. Was silly in the end as the raid didn’t happen and the carer was lovely, it was just I didn’t want to have to deal with a completely new person by myself. That was one of the problems with the old agency- there were constantly new carers that I didn’t know so neither of us were comfortable with it. As the new agency thinks 4 carers in a week is too many I know things are going to be better. This week we’re only seeing Lovely Carer as she comes both morning and evening and is working this week. She seemed rather excited about that (she seems to like coming here as much as we like her coming 🙂 ).

Meggy and Martin (my youngest siblings) came to visit last Tuesday, and also cleaned most of the kitchen and living room for us, which was very nice of them. Meggy has said she wants to come back this week to finish it off. This is not a problem with us. She’s very good at it 🙂 Johan was terrified to begin with as he felt really guilty but he was okay after she got here and when she actually did it.

To also help, we finally have the council cleaners almost sorted! We’ll be having a cleaner in 2 hours a week to do the main cleaning jobs, and they should be starting next week some time. We’re just waiting for them to tell us when it’ll be. This is a paid service, but at £10.41 an hour it will be well worth it for Johan to stop worrying and for me to be able to have the place clean how I want it. I can pretend it’s because we’re really posh and stuff (my DLA covers it as it’s because of my disability I can’t do it myself). Lovely carer can also do smaller jobs inbetween (washing a few dishes, putting a load of washing in) so between the two services it will work well.

Last week I also sent an email in the middle of the night about the neighbours upstairs while they were making a massive amount of noise fighting. Johan was terrified lying on my bed next to me, but I got angry instead for once, so sent the email. The local estate officer is coming out on Wednesday to discuss this. We’re not exactly wanting to complain, we just want to do what’s necessary to make it stop (though that might require a complaint). We have a simple way of judging if it’s just oversensitivity or actual loud noise- if I can still hear it with my ear defenders on, it’s very loud (and the stuff we can’t tolerate is arguments, stomping, throwing things and slamming doors, rather than normal chatting, television watching or listening to music, though we don’t like the drilling at midnight either).

I’m still doing pretty well. Been on my computer (in new chair!) and though I didn’t play World of Warcraft I did get a message sent in the Ayme forums, which took about 2 hours for me to write because it is very hard work for me. I don’t know why because writing to people on forums used to be easy. I also went on Facebook for a bit.

On Thursday I hope to go into Grainger Market in Newcastle to get some nice food. There is a lovely bakery in there called French Oven and the bread and macarons are gorgeous. They are doing special flavours for the Jubilee so I have ordered two of each flavour for us of the macarons (16 in total) and two high tea boxes. As I have my new chair I am hoping to go there myself but if not Johan will go for me. I am looking forward to it 🙂

I have been enjoying the nice weather but my body has been responding oddly to it. For a while I needed lots of anti nausea tablets which is not like me and my body couldn’t decide whether it was hot or cold or both, but I have finally adapted. I think it was the change in weather. I have been watching the birds outside my window with it open, and it has been lovely. Luckily my window is shaded by lots of trees so it doesn’t get too hot in my room.

I hope things keep going well. I am liking my new chair giving me more freedom to go out 🙂