Nov 272014
 

Noise sensitivity is really bad today. Every little noise is making me feel like I’m going to throw up and causing loads of pain. Earlier there were several noises going on which by themselves wouldn’t have been too bad but combined caused a jerking attack. I didn’t lose full control this time, but every time I tried to move something I’d do that movement plus several others. Very annoying. Johan did say my muscles were being affected by multistrike though which made me laugh (multistrike is a thing in World of Warcraft that let’s attacks happen more than once).

Maybe sitting up the other day was a bad idea. Maybe it’s completely unrelated. I can’t be sure. All I know is I’m knackered now and I don’t know where my ear plugs are. Obviously I’ve not been on my puter today. Tomorrow hopefully will be better.

 Posted by at 6:35 pm
Nov 262014
 

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 :-P 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 :-( 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!

 Posted by at 10:42 pm
Nov 252014
 

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.

 Posted by at 7:21 pm
Nov 242014
 

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 :) Today has been a very good day :D

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 :D

 Posted by at 5:13 pm
Nov 232014
 

Been asleep all day so a short post now :) 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 or 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 code VOICES 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. 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.

 Posted by at 11:54 pm
Nov 222014
 

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 :) 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 is 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 :)

 Posted by at 11:25 pm
Nov 212014
 

I was hoping to be more with it and awake today than I was yesterday (I’d not got much decent sleep as there was a dog whining for hours). Unfortunately that didn’t happen, and I spent most of the day asleep, missing the time I’d planned to go into Minecraft with Sammie and her friend :( I did get on eventually, and we played a bit, but I’m annoyed I was asleep so much :P

It also means I’m nowhere near to fixing my sleeping pattern. Nevermind :P I’m playing World of Warcraft at the moment where there’s loads of stuff for me to do. The problem is choosing what to do first :P

I had an accident that required my bed to be changed, which made Johan very meowy. Luckily he was already awake, as if he’d been asleep he would have been even more grumpy. I’m very grateful I have a spare U-shaped pillow.

This cold is reminding me it’s still here. Feeling all bunged up and headachy today. I think the sitting up on the side of the bed is on hold until I’m a little bit better. I’m glad I’ve not relapsed though.

I’ve got a couple of books I want to read. If I’m able to stay awake after coming off computer tonight then I think I’ll start one of them. I wanted to read 50 books this year and I’ve only managed 32, so I’ve got a lot of catching up to do. I’m so glad I’m able to read now though :)

 Posted by at 11:00 pm
Nov 202014
 

Yesterday I wrote a blog post, but forgot to publish it before sleeping. Fixed now, but I was a silly sausage.

I’m normally a very happy Danni. Penguins, friends, family, technology, purple, all awesome things that make me happy. There are some things that I don’t like about being me, some coming from being ill, others from being Autistic and Dyspraxic, and some combined to make smaller issues bigger.

One of the main ones is struggling to communicate with friends and family. There are several things that cause this to be an issue. The first is unless prompted, I forget people (and things) exist. Luckily these days there’s friend lists on Facebook and similar, but I’m unable to name all my friends and family without some form of prompt. I love them all dearly, it’s a quirk of my memory that’s been made much worse by being ill. I have to keep reminders around so I never forget who Sammie (my daughter) is. I imagine most people don’t forget their own immediate family, but I do. I find frequent Facebook statuses, tweets and stuff really helpful to remember who people are :-)

I’m also pretty face blind. I don’t recognise myself in the mirror, and remember other people by hair, clothing style, voice and movement. I do better with photographs, but have thought pictures of my sister were me before. If someone drastically changes their hair style, especially without warning, it can take me a while to get used to their new one. This is less of a problem now I rarely see people face to face but it’s still frustrating.

I struggle to initiate conversation, even with people I really like and know well. Not because I don’t care about them, but because I don’t know what to say. I was getting better at this but then I got ill and it’s bad again. I really appreciate when others start a conversation with me because replying is much easier. Unfortunately since I became really ill I’m not always up to long conversations, but I’m hoping that will improve soon.

I’ve got a type of hearing problem where I can’t hear speech properly when there’s background noise. My actual hearing is better than average (I can hear things most other people can’t) but I can’t filter what I hear so have everything coming through, which is exhausting. I lip read to some extent which helps a bit but in a noisy room I simply can’t hear someone speaking. This is also a major part of why I can’t use the phone – I have no visual clues to help me and the line or background noise makes it nearly impossible to understand what’s being said. When I try it takes so much energy I’m completely exhausted afterwards and have relapsed because of it.

I’m tired now so I’ll leave it there, but understanding these are difficulties I have due to disability rather than being lazy or weak makes it much easier to deal with and means I can concentrate on workarounds to these issues. I’m still awesome, despite my problems :-)

 Posted by at 11:51 pm
Nov 192014
 

I’m really happy as I got my Night Elf Priestess Danni to level 100 this morning. I’m kinda overwhelmed with all the stuff there is to do. So far I know I want to finish all the zone quests, search for all the hidden treasures, kill all the rare mobs,  level all my professions to 700, do the pet battles in my garrison, level my garrison buildings and heal all the dungeons in a guild group, preferably on heroic. That should keep me busy for a bit :-P

I’ve also managed to fix my problems with Minecraft. Turns out there’s a problem with the latest Java and going back to an older version fixed the crashes I was having. Yay! Sammie and her friend want me to play on the Minecraft server on Friday so I have that to look forward to.

My health seems to be improving a bit. Not only can I spend a lot of time on my computer, but I’m also able to be propped up more in bed. If I’m still doing well tomorrow I’ll be trying to sit on the edge of the bed (with Johan helping) to try and build up my tolerance again. I’m also finding reading a bit easier now. I still have the cold of doom but it does seem to be slowly easing up.

I got my blood results back from the hospital and it turns out I’m malnourished. Various deficiencies which I’m pretty sure are caused by not being able to eat properly for far too long. The doctor has recommended supplements and help from the dietician. I’m wondering though if it’s being worsened by my digestive system forgetting how to do its job a lot of the time. If I get that sorted though I’m hoping it’ll mean I feel a bit better, even though I know it won’t fix everything. The penguins are telling me I need more fish. I agree with them.

Sleeping pattern is still back to front. Not too worried about it but I’m trying to push it back as that works better for me than trying to bring it forward. If I can get it closer to normal I don’t know how long it’ll last but it’ll make playing with Sammie much easier so it’s worth it.

Penguins still exist. I have good friends. There are amazing people who I love and who love me. I’ve been able to do loads for me. Today is a good day :-)

 Posted by at 3:20 pm
Nov 182014
 

One of the awesome people I’ve met since I’ve been ill is the amazing Jessica LE Taylor. I first spoke to her on Twitter, after coming across her video The World of One Room  and discovering that not only did we both have severe ME, she also had some of the same symptoms I did, making me feel much less alone. I’ve since been following her progress, which includes sitting, standing and even taking her first steps thanks to intensive therapy in a private hospital.

Jessica has had severe ME for years, spending much of that time in hospital paralysed. While there, she wrote a song. Spread the Hope has now been released as a Christmas single, with the proceeds benefiting four charities: Share A Star (started by Jessica, sends special holding stars to seriously ill children), Post Pals (sends letters and gifts to ill or disabled children), Help Harry Help Others (cancer charity giving hope) and The Katy Holmes Trust (cancer charity hoping to find a cure for paediatric brain tumours).

You can watch the single on YouTube below and buy it from http://spreadthehope.christmas/

 Posted by at 11:21 pm