"I find penguins at present the only comfort in life. One feels everything in the world so sympathetically ridiculous; one can't be angry when one looks at a penguin." – John Ruskin
Author: Danni
The Purple Penguin! 31 year old autistic geek, living in bed with severe ME (myalgic encephalomyelitis). Likes gaming, purple and penguins.
So it’s the 31st of October. Tonight lots of small children will be going trick or treating, people will be dressing up and parties will be had. Last year I was a penguin princess. This year I’ll be in bed, where I’ve been since the end of November last year. I’ve bought some sweets just in case of any trick or treaters, but we didn’t get any last year and I’m not expecting any this year. Johan is scared as he doesn’t want to be human and have to answer the door.
I’m not going to attempt NaBloPoMo this year. I’m not doing as well as I was at the beginning of the month and though I’m hoping it’s just a blip I think extra pressure would be a bad thing at the moment. I’m going to try and post more frequently during November but without forcing myself to do so everyday.
I have a new regular carer. She is nice and understanding, but my slight decline means I’m not always well enough to have personal care done at the times she’s here. It is frustrating me as I want to be clean and dressed (and out of bed…) but my body makes it so hard. I have a lot of dry, yellow skin I want removing but touch makes me worse. This illness is cruel and though I try to remain positive I get angry at it.
I love reading. I’ve been reading since I was two and it’s always been my biggest obsession. I can’t not read- if there are words, I have to read them (this can cause problems when I’m meant to be concentrating on something else). I used to be able to memorise everything I read, which was brilliant but I lost that ability as a teenager.
Until I got M.E reading two or three books a day was perfectly normal. I loved both nonfiction and fiction. I’d go from reading a favourite children’s book to an encyclopaedia to a text book or a classic novel. A lot of my love of the internet is because of how much there is to read, with wikis, fan fiction and blogs as well as traditional websites on any topic I could think of. Even my use of Twitter is mostly reading, as it’s my best way of finding out what’s happening in the world and with those people I’m friends with or interested in. Reading is what I do best.
Despite my love of books and reading, I don’t like writing book reviews most of the time. At school I’d only review as few books as I could get away with (in one class reviewing two when I’d read more like twenty). I don’t like analysing books, picking them apart for hidden meanings, thinking about the quality of writing instead of what the message actually is. When I try to write a book review I always feel I can never quite do it justice. Some of this because I can’t always identify my own thoughts and feelings or put them into words. Mostly though it’s just because most writing doesn’t interest me anywhere near as much as reading does.
I’m glad book reviews exist. As I’m not well enough to read everything now (and can’t read normal books as they hurt too much) they enable me to choose what ebooks to buy, and I enjoy reading them just for enjoyment as well. I’m amazed at how other people are able to write so well about something they’ve read. I guess it’s a bit like how I’m always impressed by writers telling stories in such a way I can be there, something else I can’t do.
I love books, stories and reading. I’m just not very good at writing about them.
I have spent most of the last month playing computer games, which is good. Mostly World of Warcraft (enjoying Flexi with my guild and Timeless Isle stuff, and levelling a couple of new characters) but I’ve also been playing a bit of Minecraft (Feed the Beast Ultimate) with my WoW guild on their server, and on Monday I got a beta key for Hearthstone. I’m so happy to be well enough to play lots of computer games 🙂 It does mean I’ve been not as social on Twitter and messengers as I was, but it works better for distracting me from the pain and blehness 😛
I’ve also been watching a bit more television. Since the cricket has finished Johan wasn’t watching the big telly in the living room, so he brought the telly in here and he’s now using my old monitor with his computer. This works better for me as I can see it properly and can change the volume (something I couldn’t do before), and it works for Johan as he now has four monitors connected to his computer (two of them are mine). I’ve been watching a bit of Penguins of Madagascar and The Great British Bake Off, so not much concentration needed but they’re fun 🙂
I’ve also been able to be propped up more in bed by raising the head on good days. It’s getting easier and I’m slowly raising how high I am sitting up so that hopefully I’ll be able to do it more. I have to be careful not to go too high though as then I feel really dizzy and faint, and I need to use my neck pillow for support or my head flops. Still I’m happy that I am improving a bit in that area 🙂
The two areas I’m still doing really badly in are movement and touch. I’m still very weak and if I overdo the rolling over (normally trying to grab stuff that’s fallen or slightly out of my reach) then I get a lot of pain and muscle weakness (and often feel dizzy and nauseous as well). Being touched (or having too much pressure on me) causes me a lot of pain and general worsening of symptoms. Having a bed bath will make me feel terrible for a few days so only happens occasionally. The combination means getting out of bed isn’t going to happen unless absolutely essential until I can get a hoist, as at the moment Johan has to drag me (lots of movement and touch which is nearly unbearable).
I’ve tried twice to get to the hospital for my gynaecology appointment. Both times Johan had got me into my wheelchair only for the ambulance people tell us they couldn’t take me. The first time the ambulance wasn’t big enough and he didn’t have the straps. The second time the ambulance was big enough, but again they didn’t have the right straps. Each time we have to rebook the ambulance and contact the department to make sure they have a hoist available incase I need an examination. It is getting very frustrating. The worst thing is if it were at the hospital 5 minutes away Johan would be able to get there- he’s already dragging me into my wheelchair and less than 5 minutes on the bus is actually less stressful than the patient transport ambulance for me (we’re lucky to live in an area with a decent accessible bus service). For some reason though my appointment is near the MetroCentre, which is a good 20 minutes away and means I definitely need an ambulance. I’m also worried about the lack of emergency department there- I hope I won’t need it but I was doing a lot better than I am now when I ended up in A+E from a normal outpatient appointment a couple of years ago, and being so far away from home scares me.
We ended up moving servers again. That was fun (not). Sorted now and I think everything will work out better. Going without my emails for a few hours was hard 😛
We’re also having issues with social services and the care agency not understanding my needs. They don’t understand autism and the need to know what is happening and when. I think I need an advocate. Not got the energy or the spoons to figure it out though (it requires a different type of spoon to those I use for gaming- I’ve tried not gaming to do other stuff and it doesn’t work unless I know exactly what to do and I don’t in this situation). Johan is also struggling so I want to find a support worker to help him. That is also hard and beyond me at the moment.
I bought a new Nexus 10 as my old Transformer was dying. It works so much better than my old one and I’m really enjoying it. Johan is a bit jealous, as he only has the Nexus 7 😛 I was trying to hold out for the announcement of the next one but my communication difficulties when my Transformer was misbehaving and the fact we’ve not heard anything yet meant I just went for the current one. I’m so glad I did though and I’ve ordered a purple case to try and protect it and make it look pretty 😀 I’m also doing well with saving for Christmas and should have no problems there.
Today I am grateful for medication that works (even a little bit), warm penguins, and sunglasses. They help. My friend Kirrus sent me a little penguin and a penguin keyring and some postcards (I think- hoping I not got them confuzzled with something else) in the post which was awesome. Pocket Pennies sent me a purple penguin hat which is very me 😀 Happy Danni 😀
I’ve not blogged for a while because I’ve been finding it hard to think. I went into the care home and it went as well as could be expected really- didn’t get a bath because the newly installed adjustable one I’d be able to use wasn’t getting any water, but did get out of bed for about an hour one day and washed my hands in a sink on the way home (it’s strange the things you miss when bedbound sometimes). Johan had fun with his friends. A week later Johan went to visit his dad as it was his birthday. I wanted to go but not being able to get out of bed is a minor problem.
My hospital bed was installed before I got home and it has been helping so much. It has a specialist pressure relieving foam mattress that means I now get to sleep for about 5 hours before needing to roll over, a massive improvement over the 60-90 minutes I previously got. Being able to raise my head and legs as I need to by myself is also really helping, and the bed goes really high so it’s good for carers and means I can look out of the window. Most of the time it’s at the lowest level which means if I’m doing okay I can reach the floor through the safety rails- useful as I drop things a lot 😛 We were also given soft bumpers to cover the rails (not needed at the moment but will be good if I become more ill) and a transfer board for when I improve. The district nurses are awesome (we had to have them out again a couple of weeks ago due to my bowels not working properly and getting bunged up, and they sorted me and were nice doing so, and then yelled at social services to say we needed more help).
We had visits from Indigo Jo and Pocket Pennies during August which was brilliant. I’d not met Indigo Jo before in person (though we’d spoken a lot online) and he’s just as friendly in real life. Penni had been here last year and it was lovely to see her again as I’d been missing her and she’s one of those people who it just feels right being around. It also meant Johan got to have hugs which he’s been missing as I’ve not been well enough to have many. Unfortunately the neighbours (or their visitors) were causing issues during both visits, and they’re getting worse again. Right now neither of us have the energy to do anything about it (and there’s not much anyone else can do right now either).
I got a birthday present from my friend Sarah and it was this amazing crocheted purple penguin. Her name is Pan and she is amazing. She is mostly dark sparkly purple with a lilac tummy, stripe above her eyes and the inside of her wings. Her beak and feet are orange and her eyes are black. She’s much bigger than Purple Penguin and is more serious, but I love her loads. I have awesome friends 😀
A few days ago Johan got upset as I was looking through photos and videos of me before I got M.E doing a high ropes challenge with my college class four years ago. It was about two months before I got ill and although I had depression fatigue then (and had needed a nap that day) I was able to take part and really enjoyed it. Most of the time we live in the present so the comparison of how I was then to how I am now as a bit much for him. I’m not as ill as I could be but needing help with the smallest tasks is very different from the fiercely independent person I was then. I get a bit sad about it sometimes but I’m hopeful that I’ll improve in the future, and even if I don’t I can have as good quality of life as possible.
I’ve had a bit of an upset tummy the last few days which has not been fun. Luckily the nurses sorted out the right pads for me so it’s been bearable. I’ve started watching kitten cam (http://new.livestream.com/FosterKittenCam/TheLooneyFosters) which makes me happy. Penelope the kitten has a very similar personality to Penelope the penguin which is funny 😀 When I wasn’t well enough to go on my computer myself Johan put it on for me.
Johan is attempting to fill out his PIP (Personal Independence Payment, replacement for Disability Living Allowance) form. He’s finding it hard to come to terms with the fact he’s disabled, and the form highlights all his difficulties and not his abilities. Because we both struggle with communication we’ve been unable to ask anyone for help filling in the form and it’s unlikely we’ll be able to in such short notice now, but luckily we can both speak DWP. I’ll be trying to fill in the bit from “someone who knows you well” (typing it, obviously) as it now specifies a family member or a friend. When I was less ill I was able to help Johan more but now I’m too ill to even do prompting for food and stuff, and it’s showing in the fact we’re not really coping. What isn’t helping is the care agency is messing us around, not responding to my emails and it’s making us both very anxious. It means it’ll be even more important to go on direct payments if I can find someone to help me open a bank account for it.
When I’ve been up to it I’ve been playing some World of Warcraft. I’m mostly concentrating on some gold making (learning how to be a capitalist- in real life I’m more socialist but then again, in real life I don’t go around committing genocide or casting magic either) and levelling my night elf druid Myranda. She’s currently level 67 in Outland and I still don’t really know how to play her, but pressing random buttons seems to work (I’m a Boomkin). I love flight form though so sometimes I just play at flying really high, falling and then turning into a bird just before I hit the ground. One night when I couldn’t sleep a random level 90 decided to take me and another person through dungeons as they were bored, and that was a lot of fun. I’ve tried playing on Danni but I don’t have the concentration for high level stuff really, and the same applies to playing other games. I’m glad I can do what I can though 🙂
I’ve got lots planned for the future. There are lots of films I want to watch, ebooks I want to read, TV shows to catch up on. When I get a hoist (currently under discussion) I’m wanting a shower and to be able to work on being in my wheelchair so I can go into the living room and maybe go out. I also have an appointment with a gynaecologist soon to try and sort my coil out, which will be fun. When I improve I have friends and relatives to visit, places to go, and penguins to see. I have a couple of jobs that I really want to do, I want to return to education (either part time or full time) and I want to help people as a thank you to all the people who have helped me.
In the more immediate future I want to work on my bedroom a bit. It’s a bit of a mess and I’d like to get it more organised and sorted, and that would mean that we’d know where everything should go as well. I want to put the old bookcase (with all but one shelf missing) behind the door and use it for storing pads and related stuff. I’d like to get a bookcase with shelves to put some of my books on roughly where that bookcase is now. The stuff I use occasionally I want to put in a big box I have, and all paperwork I’d like to put in some boxes so we know where it all is (I used to have it all organised by type and date but I’m not able to do that now). I also have pictures, posters and penguin bunting to put up to decorate it a bit until I’m well enough to have it painted. Johan needs to have his room sorted so he can have the double bed in there and we’ll be getting a daybed frame to use the single bed mattress with for the living room (will be good for me when I can get in there, and for people staying over. It’s a very comfy mattress so I don’t want to get rid of it).
While typing most of this yesterday I got a sudden feeling of being incredibly ill, with chest pain, a sense of impending doom (I felt like I was dying even though I knew logically I wasn’t), nausea, dizziness and difficulty being able to concentrate on anything else. I ended up falling asleep thanks to the cyclizine Johan gave me to deal with the nausea bit, and I’m a lot better now (by my standards). That is something I never want to experience again as it was very scary and if I’d not been feeling so terrible I’d have asked for a doctor (I felt too ill to deal with anyone so seeing a doctor wouldn’t have been a good idea- it makes sense to me at least). I didn’t tell Johan quite how bad it was yesterday as I wasn’t able to verbalise it, and he told me off this morning for not doing so. I don’t know why it happened but I really hope it was a one off thing.
Yesterday (Thursday) morning the district nurse came out at the request of my GP (if I’d been able to phone up I could have asked myself but I can’t and my carer didn’t get a great response last time). She was here to discuss getting a hospital bed and my continence needs. I liked her. She came while I was asleep (at the same time as my morning carer) and understood when I explained I’d not slept well thanks to the heat. She asked mostly closed questions and was able to figure out the answers from what I was saying (my speech at the moment tends to go a bit rambling all over the place and I say a lot of wrong words and stuff).
She agreed I should have a hospital bed, and an alternating air pressure overlay mattress. Since that was what I wanted, I’m very happy with that. We told her I was going into respite for the weekend and somehow she’s managed to organise the delivery of the bed plus a cantilever table and a slide sheet for Monday afternoon. She thought it would be a good idea to get it delivered while I was in respite as it meant that we wouldn’t have to worry about where to put me while the beds were being sorted. Johan is going to get the double bed as soon as his room is sorted enough and I’m going to get a daybed frame for the single mattress for the living room to replace the sofa. All planned and all good.
Continence-wise she’s ordering some more absorbent pads for me. She also asked me if I’d thought about catheters, and when I mentioned I was worried about infection she suggested a suprapubic one might be best. I’ve looked into it and if I can tolerate the procedure to get it fitted then it might be a good option for me, so I’m less sweaty and sore from the pads. I’ll still need something for bowel movements but we can discuss that later. It’s something that I’m considering, anyway.
All in all it was a good visit. I’m amazed she managed to get the hospital bed sorted so quickly (luckily they had a suitable one in stock) as apparently it normally takes one to two weeks. I’m so used to waiting months for anything that it feels really weird for things to be moving so quickly.
My social worker and OT are coming out next Thursday to do a full assessment. I’m hoping for a hoist, a shower seat and to see if there is any other equipment that may be able to help me. The district nurse is going to come back out the Wednesday after to see how it went and if there’s anything else she can do.
Johan is going to London this weekend for some much needed respite (and to see friends). He’s not been doing so well recently but hopefully the break will help him. Originally Becca was going to be looking after me but she got an infection and is rather ill with it. Luckily we still had most of our respite left (until my care package changes we’re getting three weeks a year, of which we’ve used about 10 days so far) so I’ll be going into the local care home I went to in February from Friday (today) until Monday. Hopefully it will go well but I’m a little sad I’m not going to a care home where I can get a bath or shower (last time they didn’t have a suitable seat for me as I can’t sit completely upright). Indigo Jo has said he’ll try to come visit me which would be nice as I’ve not met him in person yet. I’m hoping that since they’ve got a hoist I’ll be able to spend some time in my wheelchair and maybe even go out for a little bit, as I’m doing better overall now than I was in February.
I’m trying to think what else has happened since last time I posted an update. I turned 27, and had my birthday party today (my birthday was 18th June but the party was delayed until I had cake). The party involved me and Johan cuddling and eating cake. I think it was a great party other than Johan not feeling great. I got a good deal from Virgin Media including a second box so I now have telly in my bedroom with all the channels except Sky Movies (we have Sky Sports with HD as Johan wants to watch the cricket, and he’s been watching a lot more telly since). I’m currently using my old monitor as a television which is okay except it doesn’t have a remote and I can’t change the volume. I’ll be getting a new television at some point but it’s not a major priority since I have other things to save for (like two Playstation 4s).
My GP came out and is doing lots of stuff for me. She’s given me medication to try and make my digestive system actually digest stuff, which is helping (it’s also meant to help with nausea but doesn’t work as well for that). She’s looking into POTS as it’s quite likely I have it (the intolerance to being upright and my heart rate going mad when I try say it’s quite likely, and I’ve had symptoms since I was a teenager). We’ve agreed I’m more bendy than average, especially my fingers, but not enough to really indicate EDS. That’s fine as I wasn’t sure how bendy I was in comparison to the norm and was not sure about it.
I’ve not been playing very much World of Warcraft the last week or two. I have got into gold making but the heat is making it hard for me to concentrate and even the basic stuff like dailies is too hard right now. I’ve been playing a bit of Scribblenauts Unlimited though and I picked up a game or two in the Steam sale so when I’m up to it I have stuff to play. Mostly I’ve been watching telly, and Star Trek: Deep Space Nine and Orange is the New Black on Netflix. I’m also slowly catching up on the YouTube videos I’d missed while too ill to watch them, such as TableTop. I’m liking being on my computer. I also go on Tumblr quite a bit.
I’m really positive about stuff now. My M.E is still rather wobbly (I’m improving in some areas and getting worse in others) but my mood is mostly good and I feel like even if I don’t get better or even get worse, I can still have as reasonable quality of life. I’m worrying about Johan and need more care but some of my health stuff may be at least partially treatable, most of the time my pain is bearable, and being bedbound isn’t the worst thing in the world (and will be even easier once I have the hospital bed). I still want to improve and be able to do stuff, but it’s not the end of the world if it doesn’t happen. My life is very different, but it’s worthwhile.
