"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
A quick update post, as a longer rambly post is beyond me.
I’m not as bad as I was. Still nowhere near good, or the level I was in November before the relapse started, but three pillows happens sometimes.
Johan went to London and met John and Hank Green, and saw Maureen Johnson. John said “hi” to me via Johan. I got the signed copy of The Fault in Our Stars that has John Green’s signature in purple sharpie and a green Hanklerfish.
Johan then went to Leeds to see his parents and met up with a friend. They had good noms.
Vicky stayed with me. It was good. I managed not to spend too long chatting to her, helped by having no speech when she arrived.
Vicky is good at the personal care thing, but there are areas that the dyspraxia really shows. Like wiping my bum. And spilling as much porridge on me as ended up in my mouth while she was feeding me.
Saturday (when Johan went to London and Vicky arrived) I was very ill. I nearly ended up going to A+E with urinary retention but my bladder decided to stop spasming in time. Was very painful, and I was worried it would cancel Johan’s trip.
Just after the last post, Matilda died. We bought a new, shinier motherboard and CPU, gave Johan the motherboard (I got his- the new one was the one up from the one he had) and I installed Windows and Kubuntu. It is much much faster than my old one. My computer is still called Matilda.
I’ve been very up and down. I go from complete paralysis to being able to go on Matilda, sometimes in the same day. Yay fluctuating illness!
I am one day away from Exalted with Golden Lotus and the Klaxxi in World of Warcraft. I’ve not been well enough to go in and finish it.
Many of my friends are leaving my guild in World of Warcraft as they want to raid more than my guild can offer 🙁
I’ve lost more weight. We need to tell the dietitian. She hasn’t sent the supplement prescription details to my GP for my GP to prescribe yet.
I’ve seen the GP. We have agreed I can take double tramadol when I need it so long as I don’t exceed the daily limit of 8 tablets. That is fine by me.
I went to the hospital for a scan. It was the first time I’d got out of bed (excluding the half getting out of bed to weigh myself followed by collapse that I’ve done a couple of times as I needed to check) since November.
The ultrasound was clear. That’s both good (there’s nothing seriously wrong with me in that area) and bad (we don’t know exactly what is causing my pain).
I managed the trip with lots of drugs (also how I managed the weighing myself) and because I was having a really good day anyway (for recently). We went to the hospital restaurant after the scan where I had a cup of tea and a pizza panini. The cup of tea was amazing, especially since everyone else had been drinking tea and I wanted it desperately.
The upstairs neighbours are still being very noisy and inconsiderate. I’ve not had a reply to my email yet so I need to redo it and send it to the housing office proper. I don’t have the spoons to do it.
Our opposite neighbour had his door smashed in. I was very brave and told the police (through Johan) what I heard. Considering the cyclizine had kicked in and I was half asleep when it happened and even more so when they arrived, I think that was why I managed it as I was too tired to panic.
There is a CCTV camera in the upstairs part of the block (in the communal area). We did not know this until the police asked Johan who owned it.
Buses are still more comfortable than ambulances when you have a wheelchair with decent suspension that tilts and reclines.
Johan has started taking Seroxat. He is getting some unpleasant side effects but hopefully they will ease off soon. We’re hoping they’ll help with the depression and anxiety.
Vicky brought up the idea that Johan may have ADD after watching how distracted by everything he gets when trying to do something (like packing for his trip). It makes sense. If nothing else, I’m going to look into the self help management techniques to see if they can help him now I’m not well enough to organise him.
I’ve been able to re-read some children’s books. But replying to Facebook messages is too hard. My brain fog is weird.
I got sucked into TV Tropes again for a week. I’ve only just got out, but it did lead me to read some fan fiction (with commentary) and start re-reading the St Clare’s books by Enid Blyton again.
I have forgotten loads of stuff from the St Clare’s books. Seems I remember Malory Towers better.
There is a load of bullying in the St Clare’s books. I missed that when I was a kid.
One of my favouritest people in the world has got engaged 😀
I have amazing, awesome friends.
Johan is brilliant, and I can’t imagine being without him.
Penguins should rule the world. They’d do a lot better than silly humans.
Purple is the best colour.
Even my short updates end up really long. Guess I have a lot to say even in bullet point form.
I hope I’m getting better, but won’t know for sure for a few days.
I want to blog more but writing stuff is harder than reading it. So maybe I keep reading children’s books and if I’m stuck, I write with bullet points as it seems my blog posts end up just as long anyway 🙂
I’m still stuck in bed. Sitting up isn’t working, moving is difficult and most of my symptoms (apart from light sensitivity) are still really bad. Because of this, we moved my desktop computer (called Matilda) into my bedroom temporarily so that I have a decent machine to use.
I had been trying to use my laptop (Annika) but as she’s over 5 1/2 years old and a bit broken, it was rather frustrating and meant I couldn’t do as much as I wanted to. Playing games wasn’t working as the lag was making my motion sickness really bad. Reading stuff was easier on my tablet, and typing was an issue as the wireless keyboard I used with it was too lightweight so kept moving when on me and I couldn’t be propped up enough to use the laptop keyboard comfortably.
I know the most likely reason I’m not improving like I’d normally do. Our upstairs neighbours are still causing a lot of noise every other night which makes me more ill. I have managed to send an email to the housing officer but have yet to have a response. Writing that email made me feel terrible though, and it’s not the only communication thing I have to do (I can write blog posts as they’re just a brain dump- emails need to be properly written and that requires more brain power than I really have).
I have not seen my GP yet. Johan tried to phone her before Christmas but we never got a call back, and he’s been too anxious to try again. I really need to speak to her as the dietician prescribed supplements and I need stronger painkillers (we’ve had to resort to doubling my tramadol when it’s unbearable, as it’s less risky than going to hospital for morphine). I also really need to get my bladder issues sorted, as while I don’t mind wearing incontinence pads for now, I don’t want to need them for too long if I don’t need to. They have made a massive difference though, and I’m less sore than I was using the bedpan.
The care agency is still messing us around. I need to complain but I haven’t got the energy. What we need is support with communication and appointments- someone to help us with sorting paperwork (now I’m no longer well enough to do it), telephoning people, helping us write emails, making appointments, informing people of our needs (I have an ultrasound next month and they say to phone them if you might need help getting on the bed- we need to let them know that and that I’ve got a big wheelchair as the waiting room is really small). I asked and asked for help finding someone but we got nowhere, and now I’m too ill to do it. I knew this situation would occur but that doesn’t matter to anyone like social services.
We’ve had some good news. Scottish Power asked for our meter readings, and though it took Johan a while to actually get them (anxiety and forgetting) once we gave them they have reduced our direct debit as we’re well in credit and it was set too high. It was already quite a bit lower than at our old place so this flat must be better insulated and stuff. That’s an extra £25 a month which will come in handy. We’re also getting two cold weather payments as it’s been so cold (and I’ve had to ask Johan to turn the heating up as my nose was getting cold- indoors in bed). I’ve decided to use them for bedding as I’ve seen some awesome rainbow ones online that are the type I’ve been looking for for years, and since I spend so much time in bed it will help.
Having Matilda in here is helping me so much. We have my big monitor on my overbed table, my mouse on a pillow and book on the bed and my keyboard propped up on me with penguin pillow. I need to work out the best way to have the keyboard as my tummy gets a bit sore with it poking me in my tummy, but it’s loads better than the laptop. I managed to play a bit of World of Warcraft and SimCity Social earlier, which was made possible by it not being as jerky. It also means I can get on Facebook properly again, and I’ve loads of things to respond to from the last couple of months that I’ll try and get through in the next week or so. I’m hoping to start building up my ability to watch videos and things- probably start with short YouTube videos then go from there. I’m going to have to be careful not to overdo it, but it’s massively improved my mood.
I think the hypersomnia may be calming down a bit. My sleeping pattern is completely off again because of it (hence me writing this at twenty to six in the morning) but I’m trying not to worry too much about that. It will fix itself at some point. Right now I’m just sleeping when I need to sleep, and being awake when I can. I’m still not eating enough, but managed a couple of meals of actual food (rather than just yoghurt and milkshake) and though it’s exhausting and I can’t do it everyday yet I’m hoping to build that back up too. It’s frustrating as if we didn’t have the neighbours causing so much noise I’d probably be doing better like I was the last few times I relapsed. At least I’m not right at the bottom.
We’ve had snow. Lots of it. Johan went out a couple of times but I think he doesn’t want to go too far while it’s bad. I’ve been impressed by the Sainsbury’s delivery guy for not being that late despite getting stuck somewhere else (we got a phone call telling us he’d be late, something we were expecting anyway). I’ve seen photos and when it was snowing heavily one evening Johan pulled the blind up so I could watch it properly. That was awesome, as it was lit up by the street lamps so not too bright but it was beautiful falling.
Johan is not doing great, though it could be worse. His anxiety is really bad (which is why he can’t contact the GP or anyone else) and his brain has been mean to him at times. I wish it was as easy to fix as my bad night was- we fixed mine by giving me a double dose of tramadol as it was all pain related. He’s had a few projects though which I think have helped a bit. He’s built a media centre server out of spare parts we had laying around (he bought a new case and CPU cooler from the local computer shop but that was it). He managed to get his broken monitor working again. Since he brought my computer in here and I can only have one monitor for now, he’s borrowing my desk and my other monitor and now has a four monitor setup, and I think he’s plugged into the telly as well. Things like that seem to help, even if only for the short term.
Johan is going to London to see John and Hank Green (vlogbrothers) very soon. He’s planning on going to Leeds afterwards to see his parents as he’s not seen them for far too long. Vicky is coming to stay with me while he’s gone, which is good as she’s had some experience in personal care (including bathing me when I was severely depressed) and is not someone who makes me worse. My main issue is going to be remembering not to talk to her too much as it’s tiring and accidentally spending all night chatting has happened before.
Overall I’m not as bad as I could be, thanks to ear plugs, ear defenders, and Johan. I’m frustrated that any attempt to increase my pillows fails so getting out of bed isn’t going to happen for a bit (which means the ultrasound that’s meant to happen next month is probably going to be interesting, though I’m determined to make it if I can as I need my biliary system checking). If I’m careful I can play some games, read some blogs and children’s books, and sometimes eat solid food that needs chewing. I still can’t listen to music with lyrics or anything too complicated but I’m hoping that’ll improve soon. I have loads of TV programmes to catch up with when I’m able to watch them 🙂
My penguins keep me going. Johan plays with them for me when I’m not doing great and it helps a lot. Penelope is definitely the head of the family. Penguin still loves flying and trying to get his own way (and often failing). Poseidon wants to learn about everything, and has started using Twitter. Purple Penguin is just happy about everything, and often goes exploring (usually under the bed). Po and Purple Penguin went out with Johan and got to experience snow. Po decided it was too cold (he is a baby emperor penguin and they normally stay on daddy’s feet at his age, though as it’s warm in my flat he can explore more) and Purple Penguin thought it was brilliant. I am glad they went out in it even if I couldn’t.
An update post! Christmas ended up being about as good as it could have been, considering I was still deep in relapse. I got my voice back, I opened lots of presents, we played Monopoly (Johan was the banker and moved the pieces, and I used a dice app on my tablet so I just had to tap the screen to roll). I won 🙂 Instead of Johan cooking a full Christmas dinner that I probably wouldn’t have eaten much of anyway, we got a takeaway (I still didn’t manage much, but feel less guilty when it’s a £3 kid’s meal). I even managed to get dressed in clothes I’d bought for the occasion, a penguin jumper and velvet skirt. It was nice, though not what I would have wanted if I’d been better.
This was the first Christmas where I didn’t listen to a single Christmas carol or song. This wasn’t through choice, as I adore Christmas music. Unfortunately, listening to music is just too much for my body right now and makes me feel horrendously ill. I also didn’t watch any telev.ision, not even the Doctor Who Christmas special. This is the reality of severe ME, and I’m not even right at the bottom of the scale- I’m close, but it can get worse. I enjoyed my Christmas, though I got horrendous payback afterwards.
New Year’s Day I improved slightly. Funnily enough I had a horrible day on New Year’s Eve, with more pain than I could deal with, and being very upset and grumpy as everything was just too much. Normally I’m quite happy and positive even when I’m really ill so that was not the norm for me. I couldn’t sleep but I noticed in the morning of New Year’s Day that I wasn’t feeling quite so bad. My light sensitivity had decreased a bit so I no longer needed sunglasses in a darkened room, and could get away with my normal glasses again. Moving was a little easier and I could now manage two pillows. Chewing has been a bit on and off since then but I’ll take any improvement I can at this stage.
We made the decision during the middle of December that as I was struggling so much with the bedpan, and my bladder is evil (bladder spasms mean that I can feel like I need to go urgently for hours, but can’t get anything out or it’ll come out when I’m not expecting it) we’d try using incontinence pads for a bit. It would also mean that Johan wouldn’t have to get up quite so often in the night to help me with the bedpan now I could roll over myself. We’d originally tried them in the December 2011 relapse but it failed as I just couldn’t go in the things, but this time it was a lot easier, possibly as I was already slightly incontinent. Both of us are able to sleep better now, and though it’s extra expense it’s easily justifiable as it makes both our lives easier, and means I’m no longer in as much pain from being on the bedpan for hours at a time. I do still use the bedpan during the day when my bladder is behaving, as I want to reduce the likelihood of sores and things, but having the option there is great until I’m able to use the commode again (when I hopefully won’t need them at all).
I got my DLA decision through just before Christmas as well. I’m staying on higher/higher for another two years. This was probably the best result we could have had, and a massive relief to us after spending 3 months on the form. I’m in the middle of writing another post about it so will leave that there.
I got many Christmas presents, and among my favourites were penguin thermal socks (two different people got me some) and a new baby Emperor penguin. This penguin has become one of my bed penguins (along with Penguin, Penelope and Purple Penguin when she’s not exploring) and is called Poseidon. He is super excited about everything and wants to learn. He convinced me to help him set up a Twitter and email account and wants to blog, but I’ve told him he needs to wait until he’s used to tweeting first. Penny and Penguin (his mummy and daddy) are happy with him doing this, and are trying to teach him everything as well as providing him with lots of fish.
Another of my Christmas presents was a pair of pyjama bottoms in a size 10. I knew I’d lost a lot of weight, but was still buying a size 12 because I wasn’t sure what size I was exactly. The pyjama bottoms turned out to fit perfectly, and it meant I was much more comfortable in bed wearing them (as they didn’t ride up the way that my far too large ones did). Last week I decided to buy some new pyjamas that actually fit, so raided the last of the Christmas money from my savings account and bought a few pairs from Matalan. I’ve only tried one pair (that I’m wearing now) but they’re loads comfier than the ones that are bigger. One of the sets I think will be good enough to wear as day clothes- they’re a long top and leggings, and look good enough for everyday wear. I’ll probably wear them as both 🙂
Because of the relapse my hair hadn’t been brushed for over 2 months when I finally became well enough to actually look at it, and it was a complete matted mess on the back of my head (probably from the jerking attacks I get). It had been in a plait but that wasn’t enough to stop it getting tangled. I did try to detangle it but it took me half an hour and a lot of payback just to get the tiniest strand out. When this happened in 2011 I swore I’d cut it all off. Johan wasn’t happy with the idea but as he wasn’t willing to detangle it (or help me prevent it from happening again) I had to accept it was time to cut it, especially as I couldn’t lie on my back as it was too painful. I ordered some hairdressing scissors and an awesome wig (Twilight Sparkle hair) and was hoping my carer would cut it for me, but after the scissors arrived I was asleep or not well enough when she was here, and then she’s been off sick for a bit.
In the end I decided enough was enough and hacked the lot off. I half filled a carrier bag with three big lumps of hair. I was so relieved when it was gone that I very happy. I asked my sister Becca to come and tidy it up for me and she did on Monday, and she also gave it a wash (which was much easier than it used to be and made me feel loads better). It is very short- about a centimetre in length, and really needs shaving to get it all even, but it’s loads better than it was and I really like it. I’m happy that I’ll be able to wear a wig when I want long hair (and I can have it purple again, after not being able to dye it for a few years) but it’s just so much better now, and my head feels a little lighter (though I still can’t hold my head up properly :P). Johan is finding it difficult but hopefully he’ll get used to it soon.
Now I’m just doing what I can. Resting a lot, working on being able to sit up enough to use the commode (not there yet but I hope it won’t be too much longer). I still have my Christmas tree up as I missed quite a few days where I was too ill to look at it, and it’s pretty. I’m well enough now for occasional cuddles with Johan, but we have to be careful to not overdo it. I’m still far too sound and movement sensitive for television or World of Warcraft- I tried the latter on my laptop and felt terrible even though I was just planting things on my farm. I might be getting payback from Becca being over on Monday but won’t know until I’ve slept, sometime that I’ve mostly been doing a lot of (at least 12 hours at a time, sometimes 14 or even more). I’m grateful for what I can do but hate being completely bedbound, and we’re wondering how long it’ll take for me to recover from this relapse. Each time I’ve relapsed I’ve never got back to where I was beforehand, but we’re hoping I still have some improvement to go. I saw the dietician (not sure if I’ve mentioned that before yet) and she’s prescribing me some supplements as my food intake is very poor, but we need to speak to the GP to actually get them, and Johan isn’t doing brilliantly at the moment. I’ll get there, I just hope it’s sooner rather than later 🙂
I’m still not doing great. Still bedbound, still can’t be propped up, still ridiculously light and noise sensitive, needing sunglasses to use tablet and feeling incredibly ill if the lamp is turned on for more than a few seconds. Speech still hasn’t come back, making this the longest period of being non verbal that I can remember (before ME it usually lasted a few minutes to a few hours at most, and the more than a few minute episodes were extremely rare). Hardest is not being able to cope with Johan in the room with me for very long. I talk to him using Google Talk but even hand holds are limited.
It could be worse though. I can chew so can eat solid foods, and roll over independently. Both are exhausting so I have to be careful, but it means I can eat what I want within reason and adjust my own position when uncomfortable. And I can use my tablet, which means I’m able to communicate and have something to do, though I have to be careful with it as well as it’s so easy to overdo it.
Since I last blogged, I’ve been playing around with my tablet quite a bit. First of all I changed roms, from an Ice Cream Sandwich (4.0) one to a Jelly Bean (4.1) one. I think the last one was either Cyanogen Mod 10 or based on it, while this one is called Eos. The last time I tried upgrading to Jelly Bean I quickly reverted back due to the amount of bugs, but this time I’m very happy. It supports the same theme manager as Cyanogen Mod so I can use the same purple and black theme I had before (trying to find themes for tablets is frustrating) but to my delight this rom also allows me to change the status bar at the bottom from black to purple, something I’ve been wanting to do since I first got my tablet.
I’m liking Jelly Bean a lot. The more detailed notifications are awesome, and I’m still finding little improvements while playing with it. Some of them might be the rom rather than Jelly Bean itself, but still I’m enjoying it. I’m still getting occasional reboots and touchscreen issues, but I think those are more to do with how many times the tablet has been dropped than anything software related. I have insurance for accidental damage but it requires a phone call, changing all my details as I’ve moved and living without my tablet for a bit. I’m waiting until I’m out of this relapse before sending it for repair.
As well as updating my rom (well, Johan did the actual changing, I just did the backups, restoring and setting up) I’ve been playing around with apps on my tablet. First of all I got the My Little Pony game (also available on iOS). I was really enjoying it when I decided to change roms, and was even considering putting some real money into the game for some extras. I backed it up carefully, restored it back on the new rom and discovered it had reset the game, as the saves see based on the device ID. Gone were any thoughts of paying real money into the game, and I was considering just leaving it (it’s a clicking game like Farmville and similar on Facebook) when I discovered on Reddit it was possible to cheat and get lots of gems (the premium, pay for currency). Since gems would let me quickly catch up to where I was, and I had been enjoying the story even though the game wiping was bad and Gameloft massively overcharge for things bought with real money (it’s possible to get gems while playing, but it’s very slow and to get all the Mane 6 ponies would take 2 years, and a lot longer to complete the game’s storyline without paying) I decided to cheat. And it was fun and a great, very low spoon using distraction (not much movement, simple gameplay and very little thinking required).
I also swapped my main browser from ICS Browser+ to Chrome. There are some things that I preferred in ICS Browser+ and it was a bit faster loading most webpages, but Chrome helps by being more compatible with the sites I like to use, including my online banking one (I can actually log in now). Overall it’s a positive change, though if anyone knows how to access the history in Chrome for Android, please let me know. (Edit: found it. You type Chrome:history into the address bar and it’ll show it. I’ve now bookmarked it so I don’t lose it again.) I do like being able to access the websites I was using on my desktop and laptop very easily.
Today I decided to swap keyboards. I’d bought SlideIT for 10p last year, and since then I used it as my main keyboard. It is very pretty but unfortunately it no longer works as well as it did. Recent updates have made it pretty much unusable. My hands are very jerky at the moment and while previously it had been able to guess what I meant to type, recently it has been way out. On top of that, one of the recent updates broke the dictionary so it was no longer recognising common words. It could be fixed temporarily by resetting the dictionary but that meant losing all my custom words. It’s frustrating as I’d really liked it, and the themes are very pretty (there are several purple ones, plus Christmas ones and others I liked, and a theme editor) but as I use my tablet for communication when I can’t speak I need a reliable keyboard.
I’ve swapped back to Swype. It’s still in beta and has to be downloaded from the website, but for my use it’s much more accurate and has much better word prediction. This entire blog post has been written with it, and as I’m not having to correct every other word it’s a lot faster and easier. It’s ugly compared to SlideIT- the prettiest theme is a light one with magenta highlighting and trace pattern, which is still kinda ugly, but it is so much easier to use. I’m still making a few mistakes as I’m used to SlideIT and it has different quirks, but I’m sure I’ll get used to it. I’m still annoyed that SlideIT has gone so downhill though.
On a more minor note, WordPress has released version 3.5 and I’m liking it. They’ve improved the dashboard for use with touchscreens, and it is so much better for it. I’d previously only been able to blog on my tablet in Chrome using the full screen mode as once I’d written more than the normal sized text box could hold it would start playing up, but that’s fixed now. Accessing menus is a lot easier, and I even found a tick box for snow built in 🙂 I’ve not even tried the new media upload section, which has apparently been completely revamped, but I’ll be trying that soon as I’m wanting to upload a photo later in my blog post.
I love technology. I’m so lucky to live in an age where I can stay in contact with the world from bed, while so ill. My tablet keeps me sane, and means I’m able to communicate and do what I can despite being very ill. I can read books (I read an awesome one called Realand the other day- I’m buying it for Sammie as it’s excellent and as it’s a children’s book was good for broken brains), I can talk to Johan and on Twitter, I can look at pictures of penguins and other stuff, I can do my Christmas shopping and help Johan with the finances.
There are times when I can’t use my tablet. Sometimes I’m paralysed or unable to move enough, or I’m too light sensitive to even look at the screen with my sunglasses on. For that reason we’ve started putting together a communication book for me that I can use when that’s the case. If I’m unable to look at it and indicate what I’m wanting to say myself, then Johan or someone else can read it out to me and I can indicate the correct response however I’m able. That might be through squeezing a hand, gesturing, blinking, or if I’m completely paralysed by breathing heavily. Our system is one for yes, two for no, three for I don’t know/maybe, four for something else. We’ll be including the instructions in it so if I’m I’m hospital or a care home again I’ll still be able to communicate. I got the idea from Mog’s talking book from Behind the Child. It’s a low tech solution but anything that enables communication is good. Johan is also trying to turn it into an Android app so that he has it always on his phone (in case we don’t have the paper version when we need it) but also so I can use it on my tablet when my cognitive abilities are too poor to manage typing, which also happens more frequently than is helpful.
If my speech doesn’t come back soon, or continues to be unreliable, I think we’ll be asking for a referral to a speech and language therapist. Our communication book will be good in the meantime though. I’m hoping they’ll be able to help me discover the best form of AAC for me, rather than me just guessing and cobbling together my own solutions (though I’m definitely grateful I can do that with Johan’s help). We also saw the dietician and she’s prescribing me some supplements as my food intake is so poor and my ability to manage solid food is unreliable. She’s also wanting to have the carers help with food preparation as some of the reason I’ve been eating so poorly the last year is Johan not always being able to feed me when I’m able to eat, due to his own disability and because of my sleep reversal. We’d been thinking about that anyway, so we’ll need to figure out how to ask social services for it. We need support to access support, which is kinda an issue.
Giles, looking like he’s plotting
Unfortunately things haven’t been going brilliant for me. Last week my gorgeous cat Giles was put to sleep. Vicky and I had adopted him when we were living together, and though he’d stayed with Vicky rather than me (I was uncertain whether I’d be able to look after him properly and Johan has a very severe cat allergy and values breathing) I still loved him very much. He was an older cat when we got him, FIV positive so needed to be an indoor cat, but he was the right choice for us. He was a rather laid back cat, but he adored food, often finding ways to get extra feedings, including from our next door neighbours at times. He also wanted our human food, especially pizza. I won’t forget him waking me up at 5am demanding food by jumping on my bed and meowing.
In the last few years he’d had some health issues. Problems with his eyes meant he went blind, but he still enjoyed his food and showed he wanted to be around. Last week though he started having more issues, was in pain and no longer had the same interest in food. The kindest thing was to let him go, but it was hard for Vicky, her parents and for me. I’ve been pretty upset since, though trying not to make me any more ill.
A few days ago I also got news that Glamourpuss (RL name Trevor), one of my guild friends in World of Warcraft, had lost his fight with cancer. Although we weren’t best friends, I’d spent many a time playing and chatting with him, and it’s hard to believe he won’t be logging in again. He was an awesome member of the guild, and I know I’m not going to be the only one who misses him.
I’ve also not been coping very well with this relapse. The pain has been unbearable for weeks and it’s only because I know hospital will make me worse overall that I’ve not gone in for painkillers. I even spent some time thinking of if I could get something from the local drug dealer as I was feeling that desperate. I’m not going down the illegal drug route (I’m bedbound, unable to speak, and the only person I know who does drugs is the guy upstairs and I’ve only heard him talking about cocaine, which isn’t going to help. Also I don’t want to be funding crime and would rather get my drugs from a source that’s reliable, but I sympathise a lot with those who go down that route) but it’s scary that I was considering it. Johan and I have come up with a plan. My GP is next in on Tuesday, and he’ll speak with her then to see if she can help. If I need it sorting earlier, we’ll contact another GP at the surgery or out of hours and get help that way. A+E isn’t an option as I’m too ill to get there and cope with the lights, sounds and things. Knowing it’s going to be sorted is making it easier to cope with, though it’s still hard.
We’ve bought a small Christmas tree for my room. It’s purple tinsel, and we’re going to put it on a box in the corner so I can see it. It’ll take a few days but it’s something to look forward to. Johan also got some decorations for my room. I’ve been having some of the chocolates from my advent calendar, though not every day due to feeling too ill and forgetting. It has penguins on it and my name. Johan also got mince pies and other goodies from French Oven, one of our favourite shops in Grainger market. People have also been far too nice to me and have been sending me cards, presents and linking me to pictures of penguins, which has cheered me up a lot while I’ve been feeling so poorly. I’m very lucky to have Johan and my friends.
I still have Christmas shopping to do. I’ve got to get presents for Sammie for Christmas and her birthday, and get some goodies in so we have a nice Christmas. Johan was feeling overwhelmed by the thought of having to cook Christmas dinner so I’ve told him we’re having a takeaway that day. It can be our tradition 🙂 I’ve bought a present for my Spoonie Secret Santa recipient but need to get it wrapped and posted next week (I think I’ll need Johan to help there). I was wanting to get and send presents and cards to my friends and those who have been so nice to me, but I’m too ill to do so. As we’re waiting to hear about my DLA (runs out next month, got confirmation they’ve received the form but nothing else) we can’t go too mad but I have planned to make sure we can eat and pay bills for a bit if needed. I’m not allowed to worry about it until after Christmas unless they ask me to have a medical beforehand.
This blog post ended up a lot longer than I was expecting, and took a couple of days to write. I’m not used to stopping in the middle of blog posts to sleep and rest 😛 It’s been a tough week and I’m still very poorly, but I”ve got my friends, my family, penguins and God to keep me going. It helps.
Yesterday I blogged about the little things that I miss because of my M.E. Today I’m wanting to blog about the things I’m grateful for, that improve my life and make it worth living.
First there’s Johan. A wonderful man who married me despite my ill health, and now spends most of his time looking after me. He feeds me, gives me my medication, helps me with toileting, wipes my bottom for me, lifts me into my wheelchair and does lots of other stuff that aren’t part of a normal husband’s job description. He also entertains me, cuddles me, holds my hand, makes me comfortable, and loves me. I love him so much and I don’t know what I’d do without him.
My daughter Sammie. Though I’m too ill to see her at the moment, knowing she loves me almost as much as I love her keeps me going. It’s hard to believe she’s almost nine years old. I’m also grateful that her grandparents are doing such a good job of looking after her while I’m unable to.
My friends. I am so lucky to have so many good friends. Some of them I met in person, others online, but they are there for me no matter what, and I care about all of them deeply. Some of them I wouldn’t have met if I hadn’t got M.E, so it’s about the only good thing the illness has done for me. No matter how we met, I wouldn’t go without them and I love them to pieces.
My tablet. An Asus Eee Pad Transformer, getting this one piece of technology has improved my quality of life so much. Even when I’m very ill, I can normally manage using it to look at Twitter, check my emails, communicate with people and do other things on it. I’m currently writing this blog post on it using the keyboard dock. When I’m lying on my side then I can still type using the on screen keyboard, which is big enough that I don’t make too many mistakes. When I’m unable to speak it becomes my voice, so it’s vital for my safety and comfort. I might have needed a loan to get it, but it was worth every penny.
My wheelchair. I can’t remember what model she is, but she tilts, reclines, has awesome suspension and is supportive. Without her I’d be completely bedbound as she enables me to get out of bed without needing to sit up too much. I’m too tall for her but with pillows we manage. If I’m not in bed, I’ll be in my wheelchair.
My computer. When I’m well enough to go into the living room in my wheelchair, I normally go on my computer. Her name is Matilda and I mostly use her to play games such as World of Warcraft and SimCity Social, but she also lets me do my shopping, check emails, watch videos, and browse the internet, often at the same time as playing a game. I’ve got two monitors set up and I’ve arranged it so my keyboard and mouse are easy to use while I’m in my chair.
World of Warcraft. This game is the best distraction I have from how ill I am and how much pain I’m in. In the game, I’m a Night Elf Priestess, who specialises in discipline healing. When I’m not keeping people alive, I go shadow so that I can kill the bad guys. If I don’t want to do that, then I tend to my farm or play pet battles with my penguins. It’s brilliant escapism, and I have the support of an awesome guild, and I consider quite a few of the members my friends.
Casual games. When I don’t have the concentration for something like World of Warcraft, then casual games like SimCity Social or Bejewelled Blitz on Facebook, and Game Dev Story or Crayon Physics Deluxe on my tablet keep me sane. I might not be any good at playing them, but they are a lot of fun and make me happy.
My laptop. When I’m unable to go into the living room, and I need access to something more powerful than my tablet, then I go on my laptop, Annika. I’ve currently got her running Windows 8 which works loads better than Vista did on her. My main use is playing Facebook games in bed, but I can do other things like shopping, reading blog posts, and she’s great for watching things on Netflix in bed.
My bed. Since I spend the majority of my time in here, I’m very grateful to have a comfortable bed. Having a double bed means I no longer fall out, and there’s plenty of room for pillows to keep me in place. There’s also room for Johan to lie down next to me, so we can have some contact even when I’m not very well. I have a memory foam topper and now a sheepskin and they help keep me comfy.
Tramadol. This painkiller is what stops me from screaming. It can’t get me anywhere close to pain free, but it does reduce my pain down to a level where I can cope with it and use other techniques to distract myself from it. I’m not particularly fond of the dopiness it causes when I have to take two, but it’s preferable to the pain I have when I don’t take them.
Doctors who listen. I’m so lucky to have a GP who listens to me and wants to help me. I’m not the easiest patient to treat and she admits she doesn’t know much about severe M.E, but she’s willing to learn. I’ve been really lucky that I’ve had no actively hostile doctors, and though I’ve seen one GP that thought I should stop using my wheelchair I’m lucky that I could see someone else instead, who is more understanding.
The CFS Clinic. Run by a physiotherapist, a psychologist (currently on maternity leave) and an OT, they are supporting me and are trying to help me get better. They even visit me at home, which is so important given that I’m mostly bedbound. After realising that I’m no way well enough for GAT, instead of pushing me or discharging me they are giving me advice on how to manage my illness, and work with me to find solutions to my problems. They are big fans of getting enough rest, but understand that I do need to do some things that are fun as well. They have written a very supportive letter to help my DLA claim. We might disagree on the name of my illness but when it comes to how they’re working with me, I can’t fault them.
My penguins. I don’t know what I’d do without my penguins. Both Penguin and Penelope spend all their time with me, and can be heated in the microwave so also help me loads with my pain. They make me happy, even if they get up to mischief sometimes. Purple Penguin also likes cheering me up, as does the rest of my collection.
The things I can manage. I’m so grateful that most of the time I can still eat, drink, roll over, type, communicate, be washed, can have my pyjamas changed, can take my medicines, and can spend most of my time on my tablet. There are a lot of things I can’t do, but there are still things I can and I’m so grateful for them.
Disability benefits. I’m very grateful that I live in a country that supports me while I can’t work, and gives me enough money to live off. This is under threat, and it scares me, but for now I know I can pay my bills, heat my flat, eat as well as my illness allows, and have a decent quality of life. Being able to concentrate on getting better so I will be able to work in the future is important, and it’s scary that it’s disappearing.
My faith. Praying to God helps me so much, and my belief in Him keeps me going. I know He understands when I’m struggling and He is able to comfort me. Although I miss collective worship, I know He doesn’t mind and I hope that I can be a good person.
There are probably other things I am grateful for that I’ve forgotten to put here. I’m having a bad day (the upstairs neighbours having their boiler replaced has made me ill) but I’m hoping I’ll be back to normal soon. I’m very tired now as I had to take an anti nausea tablet, but I hope everyone takes care and is as well as they can be.
