"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
I want to make it clear that I’d give anything to not be ill and be able to do stuff for myself, and most of this list is not through choice, but since I’m in this position (almost completely bed bound and incontinent) I like to look at the positives of my situation.
If I’m in the middle of something, I don’t have to get up to go to the toilet. I just go where I am (I don’t have any choice in this as I have no control, but it’s great when I’m in the middle of a fight in World of Warcraft or similar).
I have all my meals in bed. Sometimes I even get fed.
I get to order people around to do what I want. (I do normally ask :-P)
I can wear pyjamas all the time if I want. All clothes are chosen for comfort first.
Nearly all appointments take place in my room. It’s very rare I need to travel somewhere, and when I do I do so lying down.
I have a cool electric bed that lets me raise my head, legs or even the whole bed at the touch of a button.
I get awesome drugs that would fetch quite a bit on the black market.
My lights are remote controlled.
When I can get out of bed, I never have to worry about finding a seat as I take one everywhere I go. With my Trabasack I have my own table as well.
I can drink lying down with my eyes closed using my Hydrant.
I don’t need to wear shoes if I don’t want to.
If it’s cold, I can always have my blanket. And electric heat pad. And penguins.
When I go to hospital, I take my own pillows and quilt with me.
I get paid to stay in bed all day.
I can nap almost whenever I want.
I never do the cooking. Or any housework.
I have a massive U-shaped pillow that holds me in place so I don’t have to use any extra energy to stay comfy.
I can’t be late for most appointments. And if I am late for a hospital appointment, it’s never my fault.
I’m not allowed to pick stuff up if I drop them. Someone else does it for me.
I can’t get sunburnt.
I don’t need to worry about catching public transport.
People aren’t surprised if I act odd- it’s almost expected.
This song is my current obsession. Steven Universe is amazing, and I love that all the gems are genderless and just use she/her pronouns for convenience 🙂
My mood has improved again. I think it was just being overwhelmed and grief. I’m still sad that Ron isn’t here anymore, but I’m trying not to dwell on it.
My birthday was good 🙂 I spent most of that day (and the week around it) asleep, so didn’t get to do much on the actual day, but I got thoroughly spoilt with cards, presents and well wishes. Sammie got me a helium balloon penguin that can go on walks 🙂 I kinda walked it around my bedroom and though it says on the label it should only last 3-5 days it’s still just about standing (my birthday was on the 18th of June). Johan got me among other things Brightwing, a soft toy Faerie Dragon (from World of Warcraft and Heroes of the Storm), which is amazing! Her tail is jointed and her wings posable so I’ve been able to balance her on the bars of my bed. I also got a penguin towel, DVDs, an awesome penguin book, pyjamas and some other stuff from friends and family. Esther got me a Big Hero 6 birthday cake as well. Danni the spoilt penguin 🙂
All the financial part of the hoist is sorted, so now I’m just waiting on the contractors to give us a date. I’m really hoping it’ll be soon as I wanna get out of bed!
Johan is finally getting some support for himself! He’s been referred to an OT to assess what he needs help with in more detail, but he’s also hopefully going to go to this day service in Newcastle to do computer gaming stuff like reviews. So long as we can get care arranged for me when he’s gone (it’ll be up to 3 days a week) it sounds like it’ll be really good for him (I would say it would be good for him regardless, but he worries too much about me for that to be true).
I’ve had my care increased again. I now get an hour each evening, as well as half an hour in the morning. The extra time is helping so much, and it means I can have more done such as my hair washed and food made. I’m not normally up to as much in the morning so half an hour will be okay as it’s long enough to get me sorted if I’m awake. The social worker has closed my case though which will make sorting out the extra care for when Johan is out interesting, but hopefully we’ll get it sorted.
My current care agency has lost the contract for this area, which was no surprise to us. It’s meant to be transferred to the new agency on the 10th July but since we’ve heard nothing from the new agency yet I’m not so sure that’ll be happening. I’ll miss the carers I’ve got now but hopefully the new one will be better at organisation and letting me know of changes (the current agency not doing so has made me more ill than I would have been otherwise thanks to panic attacks and anxiety).
I still have a long list of things that need doing. Still need to see the GP, still need to change my name with various people (I’ve now got a template letter thanks to Marga but Johan hasn’t given me an electronic copy of the Deed Poll for me to refer to when filling them out, and to print copies out of). I need to cancel a phone contract and transfer the number, and other little things like that. Bleh.
What I have managed to do is order a new bedside table (actually a storage unit) from Ikea, along with a large storage unit to replace the bookcase with missing shelves in my room and a new sheepskin for my wheelchair. I really like them and once they’re fully built and sorted (Johan’s built the bedside table but not the drawers to go in it, or the bigger storage unit) it’ll help so much to keep my room organised.
I’ve also bought a new cooker as I’ve been wanting to replace the old one for years as it’s not very good and the grill doesn’t work. The credit card is useful for that kind of thing (I’m definitely able to pay it off well within the interest free period so I’m not too worried in it getting out of control). It’s arriving today (1st July according to my tablet) and I’m really excited!
The other big thing I’ve sorted is changing energy supplier as the deal I was on was ending. Found one that’s quite a bit cheaper (and the direct debit is nearly half the old one) and the customer service is meant to be better. I’m currently over £500 in credit with the old one so getting that back will be nice. It’ll more than cover the cost of the cooker 🙂
My health has been a bit wobbly recently. My digestion is getting worse (main reason I need to speak to the GP) and the fatigue, weakness and spasms have been bad. Sensory stuff has been pretty okay though which I’m grateful for, so when I’m awake I can sometimes watch something on telly (I watched Wreck It Ralph with Johan, and Vampire Academy by myself a few weeks ago) or maybe read a children’s book on my Kindle. The fatigue has been annoying and Johan has said I’ve been more out of it than usual recently, but at least I can cope with some light and noise and things.
The spasms have been troublesome as they’ve made things like pad changes harder than they’d normally be, and I’ve had to be fed which is the one thing I still really really hate about being ill. Pain levels have been pretty bad as well but with coping with sensory stuff better I’ve been trying to distract myself. Of course after weeks of sleeping more than being awake, I’ve now been up over 28 hours so I’m either going to see an improvement in health or I’m going to crash badly. It’s partially been due to meetings with social workers and similar people so not all my fault, though when I’ve been able to I’ve been going on my computer. It’s a great distraction from the pain and I’d rather than do that than increase my pain killers if I can get away with it. Nausea has also been worse than normal, though that’s probably related to the digestion issues getting worse (I’m still bringing my tea up even though it was over 7 hours ago and I’ve had supper since).
I’m still playing my computer games. World of Warcraft had patch 6.2 come out, so I’ve been attempting to do some of the missions and quests for that the few times I’ve been on since. I’m also working on pet battles a bit as it doesn’t require that much concentration, being turn based (though I’ve sometimes phased out for long enough I’ve been kicked out of the battle). I bought Portal and Portal 2 for Sammie and her best friend during the Steam sale, and I tried a bit of co-op of Portal 2 with Sammie one evening (Sammie is better than me and it’s a bit too thinky for my foggy brain right now). Not really played any other PC games as when I’m on there I mostly want to play WoW or sort out important stuff like bills and shopping.
On my tablet I’m still playing High School Story, DragonVale, Hollywood U, Kim Kardashian Hollywood and AdVenture Capitalist. I’ve also started playing EZ PZ RPG which is an idle game so it doesn’t matter if I don’t log in for ages. I’m currently partying for a male writer in High School Story, breeding for Summer and Halo dragons in DragonVale, a female Superhero in Hollywood U, and very slowly doing quests in Kim Kardashian Hollywood. They’ve made Kim Kardashion Hollywood harder recently so I’ve been spending less time in it and no longer trying to get to the top of the A list as fast as possible, but the storyline is still entertaining so I’ll keep playing until I get bored.
Johan bought a Wii U recently so I’m hoping when I get a bit better I’ll be able to try and play Mario Kart. He also had to buy a new motherboard, cpu and ram for his main PC as his was blue screening and we couldn’t narrow it down to one component. It’s been a bit of an upgrade for him and it seems much more stable which is good news. Mine also blue screened yesterday but I think it was due to the webcam driver so it’s not quite as bad (especially as I don’t get on everyday).
I’ve got lots of things I want to do in the near future, and I hope I manage at least some of them. I was hoping to get out of bed for my birthday but that didn’t happen as I was too ill so I’m hoping to manage it soon (with Johan hauling me back into bed) as I really want to get back in my chair. I should probably be patient and wait for the hoist so I don’t risk Johan’s back but I don’t want to 😛
That’s a pretty good thing, since it’s a tad hard to live without one. Update post for future reference!
Been rather wobbly the last few weeks. Catching a cold hasn’t helped. Could be worse, but frustrated not been able to go on puter and stuff as much as I’d like.
Asked several different people (including different departments of council and housing company) to try and get help with tidying and asking why I not got a hoist yet. Everyone is shocked I don’t have one yet. Hopefully will get somewhere with something?
One of our neighbours keeps spending money on things they’re putting in the communal areas that they’ve not got permission for. At least one of them they’ve been told not to do before. Housing officer going to investigate, and also make note on case about noise (as it’s still a problem).
Saw new consultant about probable POTS on Monday (the 9th). Current conclusion is I probably have POTS 😛 Luckily she saw straight away that I’m too ill for the normal tests (they require standing, and I’m unable to sit for any real length of time) so she wants me to measure my heart rate daily for a bit, is asking the CFS team to see if they can help with that, and I might need to have a 24 hour monitor at some point. Then we’re going to try medication to see if it helps. Luckily she gets ME really well (which is good, since she researches it as well as POTS) so we skipped straight to the stuff I was able to do. She even checked I was okay to have my blood pressure taken (it was, and it was normal, as it usually is when I’m anxious- when I’m not it’s usually a bit low).
Didn’t have any major problems with getting the stretcher ambulance organised, which is a first. They did say at first they wouldn’t be able to get a stretcher in here but they managed it in the end. This stretcher was comfier than the last one.
Since I’m meant to be measuring my heart rate regularly, I treated myself to a new fancy oximeter (easiest way for me to check, plus helpful for when I’m breathless to see what’s going on). Need to read the destructions to check how to use the recording and uploading to puter features, but I’ve had a bit of a play since it arrived yesterday evening.
When I feel my heart doing funky dances it shows as an irregular heart beat on the monitor. I’m pretty sure it’s nothing serious, but it’s reassuring to know I’m not just imagining it.
My heart rate goes all over the place. At my normal kinda rest, it goes between 80 and 105 bpm. My normal oxygen level is between 90-98% (I’ve turned the alarms off on this one, as the old one used to go off whenever it got to 93% or lower). I’m guessing at least some of the lower ones are due to bad circulation. I’ve not been breathless with it on yet.
Things that increase my heart rate are moving, holding Johan’s hand, increased pain, talking and farting. Also trying to take deep breaths increases my heart rate to over 100bpm and reduces my oxygen level down to about 90% consistently, which I think is the opposite of what’s supposed to happen.
Things that reduce my heart rate are thinking of penguins, lying quietly, and holding my breath (which doesn’t reduce my oxygen level until after a minute). Explains why I hold my breath during a panic attack (and with the above, why being told to breathe makes things worse).
Random fact: before I got ill I used to practice holding my breath for fun. At my best I could manage nearly 5 minutes, and just before I got ME I could manage 3 1/2. I’m still able to hold it for 45-70 seconds before I start feeling like I need to breathe. I used to scare people with it 😛 I thank my larger than average lung capacity and singing lessons.
I managed my puter for a little bit last night. Managed to sort my budget for the month and then went into World of Warcraft, where I died a ridiculous amount of times trying to do a Harrison Jones daily. I didn’t even manage to complete it before the daily reset 🙁 I’m hoping when it shows up again it’ll skip to where I was, but I’ve got a feeling I’ll need to start again. It’ll be easier if my brain is working better though.
Sleep has been excessive and random. I don’t have any kind of pattern to it. With having a cold though I’m just going with it, though would like to be awake when the care workers are here more often. Trying to force it though makes me more ill, as does waking me up when I’m not ready.
I have had my bedding changed and hair washed, though I really regretted the latter as it made me feel horrendous. I wanted it clean for going out though. I had my own pillow and duvet on the stretcher which was good as it was freezing outside (and I got to see some frost).
Communication is still an issue. I need to be well enough to figure out how to teach the care workers to communicate with me when it’s difficult. Asking them to offer me suggestions of what they can do and not ask me what I want doing hasn’t worked.
I’ve had some grumpy days recently, but I think most of that is due to having a cold (plus running out of chocolate when I was craving some). I’m still happy most of the time though 🙂
I hope everyone is doing as well as they can be. I think seeing outside my bedroom will keep me going for a bit 🙂
Now is the time I make my resolutions and goals for the year. First of all though I look at last year’s resolutions and see how I did.
Have a bath or a shower. – I managed this one! While I was in the care home in June I had a bath, and felt much cleaner afterwards. Definitely a success.
Sort out health book/care plan. This one I didn’t manage completely. I got the most important bit done, a care sheet for the home care workers I have, but I’ve not done the full health book yet. I think I’ll be continuing this one.
Be kind to others. I asked Johan, and he said I was kind to others. I also feel I was a lot less snappy at people last year, so I think this one was a success.
Be kind to myself. I think I’m doing better on this one. It’s always going to be harder than being kind to others, but I think there was improvement here.
Not too bad overall. I also had a few goals- getting an iPad (I changed my mind on this one, as I now have a decent text to speech app for Android), trying to blog once a month (didn’t manage in September due to being ill), and getting out of bed again, which I did do a few times but nowhere near as much as I’d have liked. I had a Goodreads goal to read 50 books, of which I managed 46 I think (I can’t be sure as I can’t figure out how to see my own past challenges on Goodreads). That’s not too bad and I’m hoping to manage it this year. One goal I did manage to complete though was NaBloPoMo in November, which made me happy 🙂
So, resolutions for this year:
Go to the toilet. This one might sound strange, but I’ve not been on a proper toilet for years. I’m doubly incontinent, but sometimes I can control things a bit. I would really like to go on an actual toilet at some point this year.
Sort out getting the flat sorted. I’m not sure how this one is going to work yet, but it needs doing. If my bedroom, the hallway and the living room are all properly accessible to me in my wheelchair without having to move stuff around, then that will be a good indicator that the flat is getting sorted.
Improve my eating. I’m not gaining weight and I need to. I’m also low on several vitamins and minerals. This one isn’t going to be easy, but I’m hoping that being referred back to the dietician and having more help from the carers when it comes to mealtimes this should be doable. Bonus points if Johan’s eating improves as well 🙂
Finish the health book. I’ve now added this to HabitRPG so I have a daily reminder I need to do this. I’ve also got a working printer, and I’ve bought the last bit of stationery I need so I’m going to really give this a go.
All of them require help from other people, which will make things interesting. The one I can do mostly by myself is the health book, as I can type the pages on here and only need someone to fetch the printouts, the folder and the page protectors for me. I’m also making some goals (all except the reading one I’ve added to HabitRPG to make it easier to remember):
Read 50 books. I’ve been well enough to read now for a while, which is awesome. My Kindle Paperwhite makes it easy for me. If I manage this goal, I’ll reward myself with a new Kindle (the new version will make it even easier for me to turn the pages as I just touch the sides rather than the page bit itself).
Buy the daybed. Esther will feel loads better if she can sleep on something other than our old sofa. I’ll be able to go into the living room more. Win win. Just need to sort out collection of the old sofa (and the broken wheelchair, old bed frame and several boxes of junk) and actually buy it. I have found one I prefer to the Ikea one on eBay from a few different sellers, so that means I can buy it myself.
Get my pictures and posters on the wall. I’ve been wanting to get this done since I moved in, and it hasn’t happened yet. This year I intend to fix that. There’s a lot of them though so it’ll have to be done in bits 😛
Play some of the games I already own but haven’t yet tried. I’ve got loads of games that look good on Steam and from Humble Bundles. I know I have limited and inconsistent time on the computer, but I’d like to try at least 5, more if I can. Some of them are for my tablet as well so I can try them even when I’m not on my computer.
Catch up with Doctor Who and My Little Pony. Very dependent on being well enough to watch television, but I’m hoping I can manage this.
Lots of things to be getting on with. If my health improves I obviously want to be getting out of bed more, but though it’s better than it was this time last year I know it can be very up and down. Three main symptoms are keeping me in bed- dizziness (which turns into fainting if I’m upright too long), muscle weakness, and muscle spasms (which have improved since I stopped pushing myself too much but still are a daily occurrence). Oversensitivity to everything (well, not everything but it feels like it at times) would need to improve for me to go further than the living room or the ramp outside, as the noise, light, smells and movement are too much otherwise. I’m hopeful though, and maybe seeing Professor Julia Newton will give me some answers.
To all my readers and friends, Merry Christmas! Or if you celebrate something else or nothing at all, I hope you have a wonderful day!
I’ve had an awesome Christmas so far. Yesterday Sammie came over for a bit to pick up her presents, which meant real life hugs and squishes were had 😀 Best present ever!
Today I’ve been completely spoilt with masses of presents, from lots of family and friends. I’ve been unable to get all mine to others sorted in time for Christmas this year, but I’m hoping to get those I’ve missed within the next week or two. My favourite was a gift from Sammie- she made a ornament of us two as penguins, me being purple and her being pink, hugging each other. Me being a purple penguin and her being a pink penguin has been our thing now for many years, so it means a lot to me. She also got me new penguin bedding and a matching cushion which are super cute 😀
Johan had bought me a telly for Christmas a few months ago, but surprised me with a Pingu ball (Hafu Pingu rather than telly Pingu), and Rarity, Rainbow Dash, Fluttershy and Twilight Sparkle soft toys. My sister Meggy had visited a few days ago and she gave me an amazing super soft penguin which I love to stroke. My other sister Becca gave me some awesome penguin pyjamas and penguin stickers. Esther gave me some penguin fuzzy socks (I love fuzzy socks!) and an awesome penguin Christmas jumper. Other presents included penguin stationery, a loom band penguin and money/gift cards. Very very spoilt Danni 😀
I also saw my brother on Christmas Eve, which was a lovely surprise. I’ve spent most of the day on Skype with Sammie, sometimes playing Minecraft (with her and her friend), sometimes just talking. I’m so grateful that I’m well enough to speak to her, be on my computer, listen to a few Christmas carols and songs and hopefully later have Christmas dinner. I even managed to speak to my mum-in-law on the phone for a minute. Now is time to rest and hopefully I’ll continue to have a good day 😀