Vampires

Less sad today. Still don’t know why I was yesterday but never mind. Today was an okay day, though had an unexpected visit from someone wanting some blood, sent by my GP. I’m not entirely sure why but went through with it.

There is so much I want to do in WoW and I’ve not enough time/energy to do it all ๐Ÿ˜› I’m so grateful I’ve been able to get on my computer so often though. I also played some Minecraft with Sammie and her friend which was fun, even though my sound sensitivity made it more draining than usual. There’s My Little Pony comics on Humble Bundle I might have to get as presents.

Fed up of the pain from eating. Is so tempting to stop completely, but I’m already malnourished and losing weight so it’s a bad idea. Today it was plain chicken breast and salad that set it off. Yesterday a sandwich (and later on a wrap). The day before, sweet potato chips and a milkshake. Pretty much anything that isn’t pure sugar and that’s dodgy too. I know wholewheat and really fibrous stuff is the worst, as it just clogs me up rather than helping things along, plus the pain is worse. Yet they include some of my favourite foods ๐Ÿ™ When I’m well enough I should probably get some tests done to find out what’s going on, as even with the domperidone I’m still bringing up bacon from yesterday’s wrap.

What’s it like to be pain-free? I don’t remember. I’ve been in pain of varying amounts since I was 5 with no real let up. Maybe earlier, but my memory is fuzzy from before then. When I was a kid it was mostly reflux and joint pain (dismissed as growing pains, though they didn’t stop after I stopped growing). I didn’t even know it wasn’t normal. Now I’m just relieved I can get it down to bearable levels with tramadol. Dunno what I’d do if I couldn’t, other than be lying in bed unable to do what I can now. I’m grateful I can do what I can.

Penguins are awesome. Saw baby penguins on Facebook today, sent by a friend. They took away the rest of the sad from last night. Sometimes I just need to remember to be more like a penguin. Noop Noop!

Being Sad

Today I am sad. I don’t know why. I can’t think of anything of anything in particular I’m sad about. I’m just sad. Being sad is unusual for me, especially without a reason. I’m not really wanting to do anything, which is very much unlike me. But it’s okay. Sometimes being sad happens, and I’ll be okay in the end. I still have penguins, even if they’re not cheering me up like they normally do. Today I am sad, but that’s okay.

Upright Is Cool!

A blog post not written in the middle of the night?! Madness!

Resting in bed after sitting up, super happy but dizzy and tired.
Resting in bed after sitting up, super happy but dizzy and tired.

Today I have spent a lot of time on my computer. I have played Minecraft and WoW, ordered stuff I needed online, sorted out general stuff and done other computery things. As I was feeling okay this afternoon I decided to sit on the edge of the bed (with Johan helping to hold me up). My treatment team want me to do this as much as I can (without overdoing it) to try and rebuild my tolerance of being upright.

I managed about 30 seconds (we weren’t counting) and hugged Johan (it’s much easier when upright!). No photos of sitting up as Johan was busy with me, but I took one about 10 minutes after while resting again. My heart rate took about half an hour to get back down to normal (and my normal is pretty much tachycardic itself, around 100 beats per minute) but I felt okay to go back on my computer, which was good as Sammie was back from school and I wanted to talk to her a bit ๐Ÿ™‚ Today has been a very good day ๐Ÿ˜€

I’ll have to see how I am over the next few days. I also had a small wash and change of clothes and bedding this morning, so I might have been a bit silly doing them all in one day. I’m hoping it’ll be okay, as I’ve felt well enough to try sitting most of the last week (only when I didn’t sleep well did I feel too crap) and I do feel like I’m starting to improve. The last few years I’ve relapsed either at the end of November or the beginning of December, but I’m hopeful that this year will be different.

I do need to do a food shop though. I have a Wiltshire Farm Foods delivery coming on Thursday to give me a few meals I can have (plus some pureed sandwiches that I actually like that I can have if I can’t chew) but we’re getting low on other food to last until then. Since my eating is already pretty poor this isn’t a good thing. My digestive system still hates me, and I’m not particularly happy with it (it was being annoying this morning, meaning Johan got less sleep than he should have) but I’m getting used to that. If I carry on having good days I might have to see what else I can do ๐Ÿ˜€

Voices From The Shadows

Been asleep all day so a short post now ๐Ÿ™‚ Also, apologies for my blog being down- I have monitoring set up but Johan doesn’t, and being asleep meant I didn’t get it fixed until after I woke up again.

One of Vikki George’s 30 wishes (see last post orย http://my30wishes.blogspot.co.uk/) is for 30 people to watch Voices from the Shadows. I have this on DVD, though I’ve not been well enough to watch it yet. However, those who have seen it say it’s a very important film about severe ME.

At the moment it’s free to watch online (until the end of the year, maybe longer) using the promo codeย VOICESย on Vimeo. You have to register your name, email address and a password, which you can do after clicking the “rent for $3” button. You put the promo code in by clicking the “apply promo code” link under the billing information section (which you can leave blank).

The film is very emotional and is not suitable for children or young people with ME.ย It’s meant to educate those who don’t know the illness or the issues surrounding it. However, if you’re an adult it would mean a lot to me for you to watch it. Thank you.

My 30 Wishes – Vikki George

This is my 30 before 30 list
But here comes the twist,
Because of my illness and disability
You will have to do it for me,
See I have these plans in my head
But I’m stuck 24/7 in a hospital bed!

I first came across Vikki George in a Reader’s Digest magazine years ago, where she was featured as a local hero for her work on Post Pals. She’s had severe ME now for 13 years, and has spent much of that time bedbound. Despite this, she’s managed to start and run a charity from bed sending post to seriously ill children. Since I became ill with ME I’ve been able to get to know her a bit and she’s very awesome!

Vikki’s 30th birthday is coming up and she wants to do 30 things for her 30th birthday. Being stuck in bed though means she needs help, and this is where you come in ๐Ÿ™‚ On her website she’s got her 30 wishes and she wants as many people as possible to complete them. Some of them are relatively easy, others are harder, but all of them will improve someone’s life in some way.

The link to her wishes isย http://my30wishes.blogspot.co.uk/. Please visit and if you can help with any wishes, do so. I want her to have the best birthday possible ๐Ÿ™‚