Sep 032013
 
Danni holding Pan

Danni holding Pan

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 šŸ˜› 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 šŸ˜€

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 šŸ˜€ 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 šŸ™‚

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.

 Posted by at 9:12 am

  11 Responses to “Pan the (big) Purple Penguin”

  1. *squishes* I could hep with the bank account if you need it. In the meantime, I will pray for you both. It would be nice if I could visit you but that’s unlikely to happen any time soon, as I can’t take annual leave in my job yet (I have to work for them for 3 months before that happens.)

  2. Loves and penguin hugs x x

  3. The foam matresses are wonderful šŸ™‚
    I’ve had 7 years since diagnosis, but while I am still on a decline it seems to be a lot slower than your progression. I have no problems with sitting upright though, so I have a little chair by the window with my computer so that I can sometimes peek through the curtain to see what the world is like. I usually only try that on overcast days as the sun would be too painful, but I’m still in a first floor flat so the outside world is usually denied to me in person (unless I arrange for one of my brothers-in-law to come and help my husband get me down the stairs).
    Wishing you enough spoons to give you smiles *hugs*

Sorry, the comment form is closed at this time.