Danni

Wednesday 10th July, 2013Saturday 15th May, 2021 Danni

Perfecting Bed Life

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

So, for the past few months I’ve spent nearly every moment in bed. It doesn’t look like I’ll be leaving it any time soon so I’ve been working on ways to make it work better for me. These are what work for me- others may find it helps, or not.

Comfort is the top priority. Most clothes are not comfortable for lying in so don’t get worn. Some clothes are good though- t-shirts and leggings, shorts and skirts tend to work well for me. Pyjamas and night clothes are also good, and some of them can even pass as daywear (I have an awesome set of pyjamas that look like a long top and leggings but are amazingly comfortable). I find having a cardigan or zip up hoodie is good as it’s easier to put on or take off when cold than a jumper.
When I’m too ill for a proper bed bath, bath in bed wipes are often a pretty good substitute. These wipes are especially designed to be used for washing in bed. They’re bigger than baby wipes and can be microwaved to warm them up. As they don’t require extra water or drying afterwards, it takes a lot less spoons to be washed with them. I still like a proper bed bath when I feel up to it though.
There are various ways of dealing with hair. Dry shampoo works for a few days, but I find it doesn’t do a great job when it’s gotten really greasy. There is no rinse shampoo you can get (works best if you can sit upright for a couple of minutes) or even better, a shampoo cap that has the no rinse shampoo in it. The shampoo cap can be microwaved to warm it up (it makes it a lot nicer) and we’ve successfully used it with me lying down, kinda on my front and side.
For proper hair washing, an inflatable basin makes it a lot easier. If you struggle at all to hold your head up get one with an inbuilt cushion- in fact, do so anyway if you can as the extra cost is minimal and it makes it much easier and more comfortable. I find that kid’s 2 in 1 shampoo works for me, as the scent doesn’t bother me and it means I don’t need separate conditioner (so less spoons are needed) but use whatever shampoo works for you. I find that having a towel around my shoulders works to catch drips and makes it easy to be brought over my head to dry my hair afterwards. Also remember to put towels (or even a bin bag) under the basin so if it spills it doesn’t soak the bed. Also, make sure your carer doesn’t remove the bucket the basin drains into before it’s finished draining- we got a clean floor out of it but if you’ve got carpet it’ll be a bit soaked!
I ended up getting all my hair cut off after a really bad relapse as it was just too knotted to deal with and I wasn’t well enough to have it detangled, even by someone else. If you can have it brushed every few days, then having long hair in a plait or two in between is a good way to stop it knotting too badly. Scarves are really good for both tangle prevention for long hair and hiding greasiness for any length hair. I also have a turban that I can just pull on when I’m not feeling well but my hair feels wrong- eBay is a good place to get that sort of thing.
Cushions and pillows are essential for comfort. The best I’ve found for me is a U shaped body cushion. It’s absolutely huge, 12 feet long but it supports me on both sides and also makes it easier for Izzy to position me. Before that I used lots of pillows and that worked a bit but tended to move. Some people like squishy cushions but most of them are too small to work for me most of the time. They’re great for holding something in place though.
An overbed table makes life much easier. I use mine for my computer monitor now but in the past it was used for my laptop, meals (when I could sit up) and other stuff. I now use my Trabasack for meals and things as I only have one overbed table but I’m considering getting a second one at some point for other stuff. They’re not that expensive for the basic ones, though if you’re weak you may need help with adjusting them. Those that are easier to adjust tend to be a lot more expensive, but may be worth it if you have the spare money and would be able to work them (I can’t).
If you’re living life completely in bed, then toileting will be done either by bedpan or incontinence pads. Sucks but unfortunately it’s something that just needs to be dealt with. If you’re well enough then having a commode next to the bed is a lot easier (as it’s more like using a toilet) but those who can’t sit up at all without fainting or falling off (like me) don’t have that option. There are different styles of bedpan so don’t be afraid to try different ones to find one that suits you. There are also urinals for both men and women that might work, though as I tend to poo without warning that wouldn’t have worked for me. When my incontinence got bad pads became easier, and can be changed pretty quickly once you and your carer know what they’re doing. Still hurts but I find them more comfortable than using the bedpan was. There are bed changing pads that will help in case of accidents or spills. Some can even be tucked in to stop them moving too much.
A sheepskin is wonderful for helping make a bed more comfortable and helping to prevent bedsores. In most places they’re rather expensive but Ikea does a decent one for £30. They’re pretty hard wearing but can’t really be cleaned that easily so bear that in mind. That said, mine has managed with just patch cleaning for several months now and though it’s looking raggedy it still helps.
If you’re well enough, a laptop, tablet or internet connected phone makes a massive difference. I find a 10 inch tablet and my gaming computer set up next to my bed (with the monitor on the overbed table) works best for me, but that may not be the case for others. I don’t have the fine motor control now to manage a phone and struggle with a smaller tablet but I know for others they’re often easier. A laptop is easier than a desktop computer and you can get special stands to put them in the best position for using lying down, but they’re not as powerful as a desktop computer for heavy gaming. I do know I’m lucky to be well enough to do gaming though 🙂 I use my tablet mostly for Twitter, reading blogs and ebooks and browsing websites. I also use it as a communication device when I’m nonverbal.
A Hydrant is great for drinks in bed without having to worry too much about spilling and you can go for a bit longer between refills as they go up to 1 litre in size. The ends need changing every couple of months (of constant use) or they do start leaking, but they’re pretty cheap (buy in bulk to save on postage) and easy to fit when they need replacing. For hot drinks, I find a travel mug works best for me, with straws in the little hole for drinking. I also have an extra handle for when I’m strong enough to lift a cup to help keep it steady.
The best headphones I’ve found so far are the Sleepphones. They’re headphones designed to be worn in bed and I find they’re much more comfortable than standard ones, especially when I’m lying on my side. They are flat headphones in a fleece headband (looks a bit like a sweatband). It comes in different colours and sizes, including purple 🙂 The extra small fits me but I do have an unusually small head. They’re not the cheapest in the world but I think they’re worth the £31 I paid for them. There are other similar ones but I’ve not tested them as these ones work for me.
If possible, have as much stuff in reach as you can. The less you need to call for someone to get stuff, the better. When I was in a single bed I had a small bookcase next to my bed that held quite a lot. Now I’m in a double bed and unless I’m having a very good day, I can only reach the stuff on the bed. I can have quite a lot on here though- my penguins, my tablet, snacks, maybe a magazine, my cushions and pillows, computer mouse (on a large book for a flat surface), my scarves and often random other stuff. If you can reach a bedside table, have what you need most frequently (or urgently) closest to you. I have a drawer in mine for storing snacks and another for medications, so when I’m well enough I can grab my own snacks (great at 4am when I don’t want to wake Izzy if I can help it) and means my medication isn’t always on show (though Izzy often forgets to put stuff back).
Bed socks are amazing. I find my feet get cold even while the rest of me is sweating and overheating, and proper bed socks are warm, comfortable and unlike normal socks, don’t dig in. When they’re not enough, I have slippers that have microwaveable inserts that warm my feet up even when they’re most icy. I also have a wheat bag I use near my feet when I’m not up to slippers and for when I go to sleep (I find my slippers feel wrong when I’m trying to sleep). I get mine from eBay.
My microwaveable penguins are awesome. Not only do they keep me company at all times, the heat also helps warm me up when my body temperature is all wonky and helps with pain. There have been many times when those penguins have kept me out of hospital. You don’t necessarily need penguins, but some form of wheat bag is a great help (I find the animals keep the heat longer- maybe it’s the fleece?).
Try and have the bedroom as pleasant as you can. I know some people need it as non stimulating as possible, but if you can have nice pictures and things you like where you can see them. I have my bed placed so when I’m well enough I can look out the window and watch the birds. At my old flat I used to watch the sunset (here there are buildings in the way that mean I can’t see them, but that is a benefit as my light sensitivity is worse and means it’s darker in here).
You can get remote controlled lights and electric switches. They mean a lot to me, as any control over my environment helps. My main light bulb is remote controlled (LED and colour changing, which I like a lot) and I have a different remote control for the sockets that my lamp and fairy lights are plugged into. That means I’m able to control my own light levels.
A fan helps a lot when it’s warm in summer. If it’s placed where you can’t quite reach it, you can have it plugged into one of the remote control sockets to be able to control it that way (though you won’t be able to change the speed, you could turn it on and off which is the important bit).
I have an eye mask that I don’t sleep without now. There are many different ones so hopefully there will be one that works for you. It lives on my bed so I’ve always got it to hand. I also have ear plugs and ear defenders. My ear defenders aren’t comfortable when I’m on my side but work well against machine noises (lawnmowers, vacuum cleaners, washing machines) and are easy to put on. Ear plugs are harder to put in but block more noise and are more comfortable when lying on my side. Combining the two means when I’m really noise sensitive I can get some peace.
Don’t forget to move while you’re in bed! The biggest risk is bed sores, and you really don’t want them. If you’re able to move yourself, do so as often as you can- I tend to wriggle around quite a lot while I’m awake. When I’m asleep, the pain from being in one position wakes me up every 60-90 minutes so unless I’m paralysed I roll over then. If you can’t roll over yourself, make sure someone changes your position every couple of hours. I’m hoping for a better bed and mattress so I get less pain soon, but in the meantime the waking up and wriggling works. I’ve only had (grade 1) bed sores when I’ve been paralysed and so unable to roll over or to let Izzy know I can’t.
There are hobbies you can take part in while you’re in bed. My personal ones are currently reading, watching television shows on my computer and playing computer games (I’ve been doing pretty well recently with noise and light- it’s mostly movement and being upright that’s keeping me in bed, and a lack of hoist). When I’m less well looking at pictures (on my tablet or in magazines) has been good. Communicating with people via twitter on my tablet also helped keep me sane while I’ve been too ill for many visitors. For those who have hands that work, there are loads of crafts- knitting seems strangely popular, and many different types of art can be done with an overbed table or a tray.
A waterproof mattress protector is essential. You will spill something at some point and the last thing you want to do is soak the mattress. If you can cope with the noise, a duvet protector and pillow protectors can also help. I have spare pillows and duvets for when mine are wet as the crinkly noise is too much (I’ve just ordered a spare U shaped pillow as it’s now so essential to me) and while you can change bedding while you’re still in bed, changing or turning the mattress is pretty much impossible. My mattress protectors don’t make a sound and have a terry towelling top.
Have a way to contact whoever helps you. For me, I can use my tablet to message Izzy, or if necessary send her a text message or call her phone (it’s connected to my phone via Bluetooth). When I’m on my computer we go on Google Hangout using webcams so we can see each other even if we can’t be in the same room. For absolute emergencies I have a care call system where I have a button to press that will go through to a call centre who can get the police or an ambulance if I’ve fallen or I need help. I don’t have the strength a lot of the time to press the button which is a problem, but the idea is sound (we pay for it along with our rent I think). Some people find that wireless doorbells work when their carer is in another room.
Try to remain positive. Living in bed is not the end of the world. It may not be what you choose but it doesn’t have to be completely negative. I find joy in many things while being in bed, and though I do want to get out and back into my wheelchair, it hasn’t been all bad. Bringing my computer in here so I could use it in bed was one of the best decisions we made.

That’s some of the stuff I use to help with living life in bed. Below are links to some of the items I mentioned- some I won’t link as I either can’t remember where I got them or they are widely available and/or there are different types. Feel free to ask if I’ve missed one you want to know about.

http://www.completecareshop.co.uk/ – Bed in bath wipes, shampoo caps, no rinse shampoo, hair washing basins, overbed tables, and other stuff. Tends to be well priced.

http://www.amazon.co.uk/gp/product/B00B02Z6EC/ref=oh_details_o01_s00_i00?ie=UTF8&psc=1 – U shaped cushion. Amazon also sell many other things I mentioned here- Sleepphones, radio controlled plug sockets and light bulbs, duo cup holder (extra handle for cups), eye masks, penguins, and other things.

http://www.hydrateforhealth.co.uk/the-hydrant.html – The Hydrant (drinking bottle with tube).

Sunday 16th June, 2013 Danni

Random Stuff I Can’t Think of a Title For

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

It feels strange that I’ll only be 26 for two more days. On Tuesday I turn 27. This is the first year I’ve felt like I’ve not really done anything of note- I got more ill and have spent more than half of it completely bed bound, but I’ve not been anywhere interesting, or done much.

Not sure what I’ll be doing on Tuesday. Have decided to get a nice takeaway that evening- either Lebanese or Sushi. I also want a birthday cake. Having a birthday cake is very important to me, especially since on my 16th birthday I didn’t get any (and I’d had two GCSE exams that day so my birthday being pretty much ignored didn’t make me feel better). Birthday cake is one of my favourite foods, especially with lots of nice icing.

I was torn between buying a new television or a new monitor (I’d saved a bit of money and got a refund from a cheap telly I tried and ended up not being as described- don’t say there’s a DVD drive if there isn’t!). I’ve ended up buying a 24″ Dell monitor, with a resolution of 1920×1200. I don’t like 16:9 resolution for my monitor (I need the extra height) and trying to find a 16:10 monitor these days is really difficult. This one has excellent reviews and I’ve bought a very good used version from Amazon to save about £40 on the new price, as it working is the most important thing to me. I’ll get the television in the future, probably around the time I get a Virgin box in my room (I’m well enough to watch stuff now and the streamed stuff isn’t quite as good as what I can get through the box). The new monitor will help me play World of Warcraft better and will make things a bit easier to see, so I’m looking forward to it. I could use the old monitor as a television temporarily (it has speakers and a HDMI connection) though I’m not sure I’ll be able to see it properly at a distance with my eyesight as screwy as it is.

My health has been variable. Had a good few days when it was really warm, then started going downhill a bit with lots of pain and mood swings and stuff. Was worried it was a relapse but it turns out I was about to start my period. First one that Johan has had to help me with (I have a Mirena coil which means I only rarely get periods- can go months or years without one) and he didn’t know what it was at first 😛 Luckily as I’m wearing pads anyway it wasn’t really any extra work for him. Seems to be nearly over so hopefully my body will settle down again, as I was enjoying not needing as many painkillers and hate being all moody.

The incontinence pads the NHS provided me aren’t absorbent enough. I think my urinary retention over the past year has stretched my bladder, as when it completely empties there is a lot of liquid- over a litre at a time. It’s rare I can get it to empty completely (have loads of issues with it) but when it does it was too much for those pads to deal with. Luckily I still have plenty of the ones I bought myself which can handle my bladder emptying, so am using them again until it’s sorted. Unfortunately my carer wasn’t able to explain to the district nurses the situation properly (I said we needed to change for more absorbent ones- she said I wanted to order more), so the district nurse said we’d contacted the wrong people and that I need another assessment as I think she didn’t know I’d just had one) so I’m going to ask the GP to sort it, if I ever see her.

It’s frustrating when I word things very carefully to make sure what I need is really clear and then people reword it to something that doesn’t mean the same thing at all. Happens all the time and means things end up harder than they should be. I’m not blaming the carer for this- she didn’t know that her wording wouldn’t work or that it was an issue for me, but it’s still frustrating anyway.

I have finished playing Katawa Shoujo (a romance visual novel set in a school for the disabled in Japan). My favourite route was probably Hanako’s, though I enjoyed all of them except maybe Shizune’s. Shizune is too manipulative and it brought up some bad memories. I sometimes got really frustrated with Hisao, the main character, as he often acted in ways that were too different from how I’d act. It was really enjoyable and I liked it a lot. It does contain sex scenes but they can be turned off (I still wouldn’t recommend it for kids though). I thought the portrayal of disability was pretty realistic, and I related a lot to Hanako, Rin and Emi (I have aspects of all of them, though Rin thinks closest to how I do).

I’ve also caught up with My Little Pony: Friendship is Magic. I enjoyed season 3, but felt the ending was too rushed and confusing. It should have been split into two episodes. I don’t mind the outcome too much, but would have preferred more explanation. I’m interested in Equestria Girls which is coming out today in the US, so might have to see that when I can.

Still nothing from the OT or a social worker yet. I’m frustrated that I’m doing so well in some ways, but I’m stuck in bed because I’m waiting for an assessment. It’s not safe for me to transfer without a hoist and I’ve fallen too many times now to risk it again. I also want to rearrange my powerchair assessment but I can’t do that until I know when I’ll be able to get out of bed again.

My hair is annoying me. It’s a few inches long now and sticks out everywhere. I can’t get it to behave. I think I want to shave it all off as I much preferred it shorter and I’m still not able to look after it properly (touch makes me really ill). My noise sensitivity isn’t as bad now and I can be more upright than before so I’m hoping that I’ll be able to get it done soon if I wear earplugs and things.

We watched the Sony presentation at E3 online, and have decided to get a Playstation 4. Johan has put in a preorder and I’ll be buying it for his Christmas/birthday present. It looks really good, and the price is lower than we were expecting. It’s the first console we’ve been so impressed by we want it as soon as it comes out. Will mean a bit of saving but not too much and it’ll be easily doable. Being bed bound has its uses. (The main reason I don’t just buy a hoist and things is I don’t know what ones to get without an assessment first- I’d be quite happy to buy what I need if I knew what it was I was meant to be getting. There’s also the problem of sorting out maintenance and stuff like that, where if I stick with NHS or Social Services they are responsible for it all.)

Hopefully I’ll hear something from someone soon. I’m starting to get bored in bed- I have been here nearly constantly since November so I think that’s understandable. If it does look like it’ll be loads longer then getting a television and things will at least make it more bearable. I’m happy that I’m nowhere near as ill as I have been- severe ME beats very severe ME any day 😛

Wednesday 5th June, 2013 Danni

Twilight Sparkle is Favourite Pony

Autism, Computers, Danni, Gaming, M.E., Mental Health, My Little Pony: Friendship is Magic, Penguins!, Physical Disability, Real Life, World of Warcraft

I really like this photo of myself. Yesterday (Tuesday) I finally wore my wig, and I love it. I also got dressed and had my hair washed (took wig off for that). Had the best day I’d had in months so very happy. Bullet points for easiness.

I have a Tumblr now. Tumblr is cool. I’m at http://dannithepurplepenguin.tumblr.com/(Dannilion was taken) and I’m slowly figuring it out.
Still not spending much time on Twitter or Facebook. They are overwhelming. That is frustrating.
Spending lots and lots of time in World of Warcraft. Brilliant distraction.
Tiarna (my Gnome Mage) is now level 90. I now have two characters at level cap.
I saw the CFS team again. They are going to continue visiting me at home as long as I find it helpful. That is reassuring.
I need to see the GP again about stuff. Still getting kidney pain even though I’d been on antibiotics for the infection.
I have NHS incontinence pads/adult nappies now. First got sent the small which are tiny. Now have the medium which are too big but usable. Gateshead use Molicare, which are actually decent.
Still no sign of the OT. I wanna get out of bed!
Social services sent out a not-social worker to do my care review. Not-social worker quickly realised we need a full care review, not a quick “everything’s fine, sign here” as he was expecting. He said he’s going to yell at people for us. Made it clear we’re not coping.
Fortijuice seemed to help at first when mixed with lemonade, but then they made nausea really really bad. Need to contact dietician as I’m meant to be having three a day.
Eating has improved a bit, and I’ve gained some weight back, but food digestion seems broken. I’m bringing up food I ate over 12 hours later. And it’s still identifiable. And not nice at all. It’s also causing constipation.
My emotions have been all over the place for no apparent reason, though my mood overall has been good. Feels weird and frustrating, but it’s probably an M.E. thing.
My anxiety is still really bad. Still having panic attacks over things like the doorbell. Need to speak to GP about it as I have a solution (small quantities of benzos) but need to see if she’ll agree.
Am in ESA Support Group. That is a relief. Didn’t need a work capability assessment or anything.
Currently have Vicky and a new friend, Duck, staying over. This is nice. Duck is from Israel and is a big geek (and autistic).
Johan bought a bike. Then discovered he can’t ride up hills. We live in a very hilly area, halfway up a steep hill. We’re trying to figure out a solution.
The 24 hour Tesco has reopened. Johan can go there when it’s quiet (so late at night).
I need to catch up on Ponies and Doctor Who. Just need to have the right type of brainpower. I’m getting there though 🙂
I have a grade 1 (least serious) bedsore on my bum. Need to keep an eye on it as I don’t want the skin breaking. It hurts (and has done for a couple of days). I really need a profiling bed.
I think I’m finally accepting that I’m severely disabled. Still don’t feel it though. Just means I now get surprised when people do things that are easy for those who aren’t severely physically disabled to do that I struggle with or can’t do at all.
Dairy Milk Marvellous Creations Jelly Popping Candy Shells is the best chocolate. And seems really hard to get around here.

I’ve probably missed loads of stuff. Still not great at the whole communication thing but a little better than I was. I want to blog more so I’m hoping this improvement lasts so I’ll have the spoons to do it. We’ll see 🙂

Friday 17th May, 2013Friday 17th May, 2013 Danni

Body Naughty

Autism, Computers, Danni, Gaming, M.E., Mental Health, NaBloPoMo, Physical Disability, Real Life, World of Warcraft

I wish my body would make some sense sometimes. I can watch Doctor Who and go on computer and play World of Warcraft. This is all yay! I feel okay so long as I don’t try and sit up or be touched.

Not being able to sit up (I keep fainting- highly inconvenient) means I’m stuck in bed (also because we not got a hoist). Not being able to be touched without becoming really ill means I have to be really careful about being washed, dressed, or moved (I can roll and shuffle a bit on the bed, but that’s about it due to muscle weakness and stuff). Also means that there’s very little personal care that my carers can do (if I have too much done, I get really ill for too long so they no want to do that).

Brain hasn’t been working for writing stuff which means no emails, blog posts or tweets for ages. Very annoying. Still not heard from the OT or Social Services. Still having problems with the neighbours. Missed my second appointment with wheelchair services and looks like I won’t be going until a hoist is sorted. Missed loads of other appointments too, and having to accept that I can only have home visits now as can’t get out.

Bought Desire Z as needed keyboard on phone. Not as easy as tablet to use but much better than trying to type on touchscreen with hands that don’t work properly.

Missed Autism Awareness/Acceptance Day/Month, and ME Awareness Day/Week. Also Blogging against Disabled Disablism Day. I wanted to participate but beyond my capabilities.

Apart from a meltdown caused by missing the wheelchair assessment (I’m pretty desperate now for a wheelchair that fits and works for me) not been too bad on days I’ve not had a wash or changed clothes or had teeth brushed or anything. If I have, then I really really ill (and for a while afterwards). Trying to manage it in bits. Pad changes are the most I can cope with, and even then if touched too much then make ill. Carers do more touching than Johan which means I do better when he does changes. Too ill to teach carers how to do pad changes properly.

Saw good friend. Didn’t make too ill. Made happy. Was good. Hope to see good friend again soon.

Still think I’d be better at running the country than the present government, even with current brain problems. Least I know who to ask for help and what’s fair.

Sorry blog post broken like body. Hope for proper post as soon as brain works for writing again.

Sunday 24th March, 2013 Danni

Gorillas: Not As Good As Penguins

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

Not having the best week ever having acquired some form of infection that was making my temperature keep spiking at over 40C. Luckily it’s no longer doing that (instead hovering at 37.5C- higher than normal but not high) but I’m still rather ill with it, and need to remember not to move my head too much as it feels like it’s full of marbles and I get immense pain when I move it too quickly. Unfortunately Johan was too ill to contact the doctor for me so we don’t know what kind of infection (the wide variety of symptoms I had mean I could have been anything from kidney to gastrointestinal to ear, as I had symptoms of all of them) but it hasn’t killed me.

Cognitively I’m doing terribly. What I’m going to do is link a blog post I read today instead. I think I’ve read the same thing before, but it’s a funny metaphor for illness.

Disability is like having a Gorilla in your house