Oct 112014

Bullet point update post for future reference!

  • I’ve been very up and down, mostly down.
  • Had urine infection. Antibiotics seemed to clear it up. Still have kidney pain, but that’s been going on a while now and I don’t think it’s infection.
  • Johan got PIP! No mobility, but did get enhanced care. We technically could ask for a reconsideration for mobility (he meets the criteria) but we’ve decided that it would be too much, since Johan struggled just with the application. It took about 13 months from the initial phone call to him getting the decision letter.
  • I finally saved enough money for project build Sammie a computer. I picked the parts (with help from Reddit) and Johan built it. I set most of the software up, and Johan finished it since I’d overdone it. Whoops. Johan lent me a bit of money so we could upgrade it a bit, so Sammie now has a better computer than me.
  • Sammie came to pick up the computer with her grandparents and that made me very happy. She loves her new computer, which made it worth it for me. It’s her main Christmas/birthday present (I don’t normally do joint presents but this was a very big one) but she had it early so we could play games together when I’m well enough.
  • Sorting computer and things meant I had payback. Was expected and didn’t last too long luckily. I’ve been sleeping a lot.
  • I’m due my smear test again soon. My GP is going to ask for it to be done at home.
  • I’ve been referred back to gynaecology to sort out my coil (it was meant to be changed nearly 5 years ago). For some reason instead of giving me an appointment in the hospital five minutes away, they gave me one at a clinic near the MetroCentre. That clinic can’t see people who need stretcher transport, so it’s having to be rearranged back at the local hospital. If the original appointment had been there, I’d have been sorted last year as I could still manage my wheelchair then.
  • I should be seeing my consultant at the end of the month. They’ve changed the afternoon appointment for a early morning one, which is going to be fun. This time we’re insisting the appointment is time sensitive, and also contacting the clinic to make sure they understand I can’t get there before the ambulance can get me there. They’ve told my GP they’ll see me that day anyway, so hopefully it’ll happen.
  • The last few days have been a bit bleh. On Thursday I woke up as I couldn’t open my jaw as when I tried there was horrendous pain going up the side of my face. After getting heat on it, I managed to open it where it made a massive clunk. Since then the right side of my face has been very sore. Not something I want to repeat.
  • Yesterday the neighbours woke me up arguing. I felt terrible and ended up needing cyclizine so fell asleep again until last night. My sleeping pattern is now completely broken, instead of just mostly.
  • We have an awesome friend staying for a bit until she can get sorted out. More forms and stuff to inform the relevant people, but at least we’ll get out of paying the bedroom tax :-P I think she’s on the sofa until I buy the daybed for the living room, as despite what the government claims we don’t have a spare bedroom.
  • Johan bought me a new telly for Christmas! Because my vision is getting worse (I suspect muscle weakness from ME) I was struggling to see the subtitles on the 32″ we have, so he bought me a 50″ one. I can read the subtitles and see what’s going on now, so I’m very happy. He’s planning on going to Sweden next year.

I still feel like it’s August, but my tablet tells me it’s October. Being ill messes up my sense of time. Last time I saw my tree (I now have a blackout sheet covering my window) the leaves were turning red and there were lots of berries. Some day I’ll find out what type of tree it is.

Aug 312014

That week when I last blogged? I’d done too much. My body has come up with a new form of payback and I’m not impressed. On top of the normal increase in symptoms, it’s added a high (39-41C) temperature and vomiting to its repertoire.

The first week it happened (starting the day after I last blogged) we didn’t know what it was, but since I couldn’t keep my meds down we got the GP out who diagnosed gastroenteritis. I was a bit confused since neither Johan or my carer had been ill, but went with it. He gave me buccal antiemetics so I could keep my meds and drinks down, and after a week my temperature went back to normal.

The week after that our lovely neighbours decided to play music so that everything was shaking in our flat, including my bed. Despite still being weak from the payback, Johan got me into my wheelchair to find the quietest part of the flat, which ended up being the hallway. The suspension on my chair also absorbed the vibrations, which was good.

Unfortunately the combination of being out of bed and the music caused more payback. Knowing more what we were dealing with now, I went into rest mode and we kept me dosed up with antiemetics and ibuprofen to keep my temperature down. It only lasted 5 days that time but I was even weaker afterwards.

I was just getting over that when I was woken up by loud music playing. It was nowhere near the level of last time, but I had sleep paralysis for a while so couldn’t get my ear defenders on. Once I could move I put them on, but the damage had been done and I had another load of payback. Possibly because the event triggering it wasn’t so bad this one was shorter, lasting just a few days. It still sucked though, and I missed Doctor Who.

I’m now feeling weak but better than when in those payback episodes. I’m hoping to be well enough to watch Doctor Who soon. I have been watching The Great British Bake Off (less thinky than Doctor Who) and enjoying that. My sleep is all over the place and I’m needing a lot more of it than is even usual for me, but after what my body has been through I’m letting it do what it wants.

Other than that I grumbled to the CFS team when they visited, my DLA renewal form has come through (I’m glad it’s not a PIP one), and played far too much of the Kim Kardashian Hollywood game (which I’m finding a lot of fun, even though I don’t like Kim Kardashian).

My normal carer is off so I’ve been having to deal with a lot of new carers. Some have been good and understanding, some less so. I’ve been trying to be awake for at least one care call a day, but even that is hard sometimes. Johan has had to deal with the carers when I’m asleep which hasn’t been good for him, but until we can find a solution to a fixed time call when my sleep is variable (for both autistic and ME reasons) I don’t know of a solution.

Johan has had his PIP assessment. I really wanted to be with him at the time but after the payback I was getting I knew it was impossible. I gave Johan a note to help the assessor communicate with him if he got anxious (luckily it wasn’t needed, but it’s gone in as evidence now) and he said it went about as well as it could have. He’s now checking the post every day in the hope of a brown envelope telling him if he’s been awarded it or not, but they’ve all been for me so far.

I’m a bit fed up of being ill now. It’s been 5 years since I got swine flu, which triggered my ME. The new payback hasn’t helped. I’ll be asking to see my usual GP next week or so to check the temperature isn’t due to an infection or something, and to ask a few questions about other symptoms. I just want to get better, or at least stop getting worse. I’ll get there, but it’s looking a long way away right now.

Jul 252014

One of the things I miss most now is singing. I used to sing to express emotion, and just because I enjoyed it. I wasn’t too bad at it either- I could normally keep in tune at least, and some people liked listening to it. Now I can’t. I know why- I don’t have the energy, memory or concentration, and my breath control is nowhere near good enough, but it still upsets me when I really really want to sing but know I can’t.

I think I’m starting to get a bit better after that relapse from the care home and stuff. Unfortunately after two good days my digestive system decided to play up (at one point mimicking the symptoms of appendicitis to scare me) but it’s mostly behaving again now (or at least back to normal levels of grumbling). Hopefully I’ll be able to be doing more again soon. I was a bit naughty and did some tidying up in my bedroom, once even getting out of bed (and shuffling on the floor on my bum when I discovered I couldn’t crawl). My sitting is better than it was, though my neck and back are still weak (my sitting on the floor was mostly bend over double with my head on my knee- luckily it wasn’t too  uncomfortable :P).

Because of needing cyclizine to control really bad nausea (thanks to the digestive issues) I’ve been really dopey and out of it the last few days, as well as sleeping lots. I’m grateful I have my Chromecast as just putting random non-thinky stuff on there helps (sometimes I even just have the default screen with the photo slideshow on in the background so I have something I can look at). I got my birthday present from Johan this week, along with a few other stuff. My present is a purple t-shirt with a stick figure in bed, saying “My awesome is on strike.The duvet is overseeing essential negotiations…”, which is perfect for me. I love it :)

I really need to cut down on my Facebook useage. It’s the most draining of the social networks yet it’s really easy to be pulled into spending loads of time reading groups and stuff. I don’t want to leave it completely, but will need to think of a solution so it stops using so many of my spoons. Conversations through it are particularly draining, especially when they involve drama I don’t want to be involved with. It’s my only way of keeping in contact with some people I love though.

I don’t think I have anything big planned for a while. I think I’ll just take the time to do things that I’m able to do, and continue planning some big stuff (like going abroad, which I’m aware will be a bit into the future yet). I’ve resubscribed to World of Warcraft as I was missing my friends in there and I have stuff to do, so if I’m having a good day it’ll be fun to go in there. I’ve also got other games to play, and I still have the Young Wizards books to finish reading. I’m hoping to watch a couple of films if I can, so that will be good. I wish I were able to make firm plans, but that’s something this illness doesn’t allow. I find out how I’ll be doing at the time, and only have a limited amount of control over it. I try to make everything worth it anyway, and that’s mostly working :)

Jul 142014

I was not expecting as many people to see my previous blog post (either here or on Tumblr) as actually did. I now have about three times the followers on Tumblr as I did before it, which is kinda scary.

I’m working on communicating better with my main care worker. Some things are a bit better for it, others I still need to figure out. I’m not sure if I’ll be showing her the post or not (I want Johan’s opinion but he’s too meowy to give it at the moment). The main issue will be there though even if it gets better with one person.

How bad I communicate became even more obvious when I had a new care worker this week. She’s nice, but there’s something about her that makes me not want her to be near me and Johan not want her to be in the flat. Since she’s meant to be providing my personal care, that’s a problem. I’m going to have to ask the agency if they can send someone else instead (my main care worker now has Sunday’s off, which I’ve been telling her to get back for months now). If I can’t ask myself my main care worker has said she’ll speak to them for me. It would be easier if I knew exactly why I’m having trouble with her, but I don’t. She’s just not a good fit.

Penguins imprinted on leg

Penguins imprinted on leg

Yesterday I had penguins imprinted on my legs from my knee high penguin socks. I also had a really sore band where one of them had been digging in. I never used to have this problem with socks but I do now. Having penguins on my legs is cool but I don’t think it does them much good (and they’re itchy and a bit sore). I think I might need to look into some socks that are less tight, though as my legs are rather skinny (from disuse mostly) I don’t know how easy that’ll be. Ones without seams will at least prevent it digging in there.

I’ve been getting a bit frustrated by being stuck in bed. I’ve still not got back to where I was before I was in the care home, and I’m having to be careful about sitting up (though I do try to sit up at least once a day, in an attempt to convince my body that it’s not a bad thing). My nausea levels have been pretty bad and the cyclizine has been messing up my sleeping patterns. This doesn’t help with trying to plan my days, or even working out if there’s a better time for the care calls.

I finally got around to putting my medication in my pill box (one with separate boxes for each day of the week, and five slots in each for meds- four for regular medication and one for as needed). We’ve discovered that most days I don’t take all my medication because I’m not awake enough- I’ve set it so I take domperidone (to be taken before food three times a day) with the first three lots of tramadol, but some days I only have two. I also ended up basically skipping Friday because of an extra long sleep on Thursday. The good thing is it did let us know in good time that I needed more medication so Johan was able to order them before I ran out completely (due to the doctors being closed when he tried to order them the first time I would have run out Sunday evening if I’d taken every dose of tramadol, but by that point I had at least four extra doses so it was fine and he’ll pick them up today).

One thing I think I forgot to mention in the update post is I’ve finally been approved for the hoist! I’ll be getting a ceiling track hoist in both the bedroom and the living room, as well as a tilt in space shower chair. The hoist will be at least August before installation, and Johan has quite a bit of work to do in the living room beforehand, but he’ll get there. I am really excited by it as it would mean I could get out of bed even if I’m not well enough to transfer independently, which would be really good for me.

I’ve been playing a bit of Hearthstone, a bit of Minecraft, a bit of Long Live the Queen, and some games on my tablet like Ninja Chicken Multiplayer Race and Pocket Legends. No idea what I’m doing on the tablet games but they’re a good distraction. Also managed to read the second Young Wizards book today when it became obvious sleep wasn’t happening, and I liked it even better than the first. I want to read the third now but I have to be careful not to try and read too much at once as it’s so easy to overdo it (and one book every few days is enough for me right now).

I watched the World Cup final, supporting Germany (I’m quarter German). They deserved their win, but I got really worried by the amount of head injuries during the entire tournament. There were a lot of times where I thought they really shouldn’t have continued playing, as some of the players looked more out of it than I normally do (which is saying a lot). It was fun to watch though, and nice to support a team. Johan has been having fun watching it, and I’m trying to convince him to support Liverpool in the premier league (they’re my team because I’m a Scouser :P).

Had a few problems with people trying to break into my blog last night. It didn’t help that for some reason the security plugin had stopped working properly and wasn’t blocking those who were trying to brute force. Johan was clever though and managed to fix it. I found out about it because I was getting the emails for each attempt- I think there were over 25,000 by the end of it, including the 5,000 that Johan just deleted from the mail queue. It wasn’t fun but sorted now. I’m so glad Johan is able to do server stuff as my brain isn’t good enough to do more than the very basics now (I accidentally dropped a table instead of deleting a row in one in mysql a few days ago- I really need to install phpmyadmin so I don’t mix my commands up again!).

I should probably sleep soon as I’ve been awake since last night. I’m hoping everyone is as okay as they can be, and I’m just glad I’m well enough to do some stuff, even if I’d like to do more :)

Jul 112014

(Wrote this on Tumblr yesterday. Figured it would also work here.)

Trying to explain my communication difficulties (to care workers, social workers and similar) when I’m verbal is really hard.

They assume that because I can speak (most of the time) I don’t have communication problems. Some will accept that I also can’t use the phone, but beyond that think I’m okay. Except I’m not.

I really struggle to ask for stuff. There’s a few reasons for this. Sometimes I forget what it is I need. Sometimes I know but can’t figure out how to ask for it (may have forgotten words, or just can’t get them out). Sometimes I can ask, but can’t explain the details. It means I’m not getting what I need done.

I’ve tried mentioning the obvious ones, like don’t ask open questions. Yet they still are asked, and no amount of asking them will let me answer them other than with something just to get them to stop (such as no for “do you need anything?”, when I need something).

Then there are the things being done, but are being done wrong because I can’t explain what I need (example: I need to rest in between tasks like washing and dressing, but as the care workers aren’t used to that and I can’t say I need to rest so I either try and get it done in one go and become more ill, or end up having to abandon it in the middle when I’ve pushed too far and it’s obvious to others).

Ideally, I’d have a list of tasks that I could have done, and then I’d choose from that. With reminders, such as when I’ve forgotten to have my hair washed for 4 months. I have a care plan but it’s not detailed enough, I can’t access it without help, and I’m not well enough to fix it so it’s accessible to me.

Johan has similar issues. Yet during his assessment for care, the social worker put down he has no communication issues because he could speak at the beginning of the assessment (he was barely able to form words by the end and I had to provide the answers to the questions, which was mentioned in the assessment). We both have large vocabularies and sound intelligent when verbal, so there’s the assumption we can’t struggle to communicate.

It’s not helped by there not being a place for autism. I’m under physical disabilities as that’s my biggest need, and they don’t get autism at all (I’ve been told I just have to accept strangers coming to provide personal care and not being told of any changes, which I simply can’t do). There’s currently an argument over whether Johan’s care will be funded by mental health or learning disabilities (in the UK, that means IQ under 75- we’re both good at the stuff IQ tests measure, so don’t count).

Autism isn’t a learning disability, but the kind of help we require is very similar to that needed by those with one, though it might need to be provided slightly differently (I know that’s not the case for all autistics, but it is for us). Autism isn’t a mental illness either, and treating it like one doesn’t work very well in my experience.

I’ve always felt a kind of kinship with those with learning disabilities, like we’re more similar than different. I excelled at academic subjects until life exceeded my ability to cope, yet understood what it was like to struggle to learn other stuff. Many of my friends over the years have had learning disabilities, and I know it’s confused people but they’ve been great friends.

We don’t really mind who provides the funding, so long as we get the help we need. I know we’re lucky to get any help at all. Yet the help I’m currently getting doesn’t quite meet my needs, and Johan’s been struggling for years without and nearly died because of it. I wish there were an easy way to fix it, but neither of us have the spoons.

Jul 102014

Things went well in the care home until they didn’t. A couple of nights they didn’t check on me frequently enough, causing my pad to leak (I hate that, it makes me feel really uncomfortable and embarrassed, which I’m normally not about being incontinent). Then one night they pretty much forgot I existed. Well, the nurse knew I was there and gave me my medication, but she didn’t let the night staff know (they hadn’t been in since I’d gone in) so they left me for 7 hours. People on Twitter ended up calling the care home (thank you!) and they eventually sorted me out (after 2am), but by that point I was dehydrated, my hand were red, cold and numb from the window being open, and I was tired and still needed changing into my night clothes as I’d been out that day. The only reason I didn’t have a pad leak was because I was dehydrated. It was horrible.

I’ve not been as well since. I really wasn’t well enough for my chair to come home, but we did it anyway because I needed to. I was meant to see my consultant on the 16th June but that didn’t happen as though I was told to be ready by 12.30pm for a 3pm appointment, the ambulance to take me didn’t arrive at mine until 3.20pm (and my consultant is super busy so they couldn’t fit me in later). Apparently we should have told them the appointment was time sensitive. I thought all hospital appointments were?! In a way it was a good thing as I wasn’t well and I was dreading the travel.

My 28th birthday I mostly slept. When I was awake Johan got me a McDonalds as I really wanted one and he’d bought me some cupcakes from French Oven which were nice. I got some lovely cards and Vivacia Dreams sent me some awesome presents :D I am so lucky :) Sammie also sang me happy birthday on Skype, which made me very happy.

Johan finally had his care assessment which said he has substantial care needs (same level as mine). He’s not too happy about it but hopefully they’ll provide the help he needs soon. They’re arguing over whether it should be learning disabilities or mental health who should cover him (as autism doesn’t fit either) but we don’t really mind so long as it happens.

We decided to get Sky Sports for a bit as we both like Cricket and Formula 1, and Johan is getting into football :P While sorting that out Johan managed to get us a discount and get us 152mbps broadband (though we somehow get 160mbps download- Virgin Media’s false advertising :P). He also ordered a SuperHub 2 which has (after a couple of days teething problems) fixed our wireless problems. We’ll have to wait to see if it’s fixed the router randomly breaking issue, though I think it probably has.

I also bought a Chromecast. I’ve been considering it for a while, and wanting to watch YouTube on my television without a couple of minute delay (how long it takes using the TiVo box) pushed me to get it. I’m really happy with it, as not only is watching YouTube videos really easy now, but I can also watch Twitch streams and play games on it. It’s also really easy to stream TV shows and films so I’ve watched a few more episodes of My Little Pony and I’m hoping to watch Brave soon.

I won tickets to the Durham Jets Twenty 20 match on the 4th July. I was hoping to be well enough to go myself (wishful thinking mostly) but when it became clear I wouldn’t be, we contacted NatWest (who I won them from) and got them transferred to Johan (who already has a season ticket, but yeah). My friend Sue wanted to go, so we gave her and her mum a ticket. Unfortunately the cricket never got started due to rain, but I did get to meet Sue which was awesome :D I’m hoping to see her again at some point, and my goal is to be well enough to go to the cricket next year.

Vicky also visited as she was back in the UK for a little bit from Palestine. It was really nice to see her, especially as last time she was here I wasn’t really well enough to talk to her. She brought with her a copy of the updated version of her book, Caged in Chaos, which I’d been intending to get for Johan (and will get on Kindle for myself when that’s updated because I currently can’t read print books)  and a gorgeous purple ring for me :D

Otherwise I’ve mostly been Skyping with Sammie when I can and playing games with her, and having the odd medical visit (CFS team, who couldn’t do the transfer stuff because I wasn’t well enough; GP because of me drinking loads; district nurses due to bed sore on my ear) every so often. I’m resting loads, still getting the odd 16 hour sleep (not helpful for bed sore on ear), and hoping I start improving again soon. I am also slowly starting to accept I’m bendy, after Johan pointed out my arms bend backwards when I think they’re straight, and it looks like I meet the criteria for EDS with that and several other things. At some point I really need to list everything that may be relevant from my medical history (joint pain since I was kid, dismissed as growing pains for years; fainting as a teenager when stood up too long; stamina issues since childhood when walking; acid reflux since I was at least 5 years old; cuts and bruises taking months to heal; local anaesthetic not working; lots of other stuff) as what I thought was normal is becoming obvious that it wasn’t. Is hard though. It might not be EDS, but I want to find out as it’s genetic.

I’m hoping to fix my sleeping pattern at some point, as I’ve gone nocturnal again. Right now my biliary system is being annoying (gallstone-type pain) so I have to wait for that to calm down. Could be worse – I’m not screaming and distraction is working at least some of the time right now. Pain sucks.

I’m gonna improve at some point. Just a bit impatient for it to happen now ;)

Jun 282014

I’m okay. Physically not great, but I’m coping. More explanation soon.

The world is weird. And good. Right now I can only access a tiny part of it, but I’m here and it knows. Speech and sounds lose meaning and become music in my head. Sometimes loud, scary and painful, but mostly gentle and pleasant.

I try and read on my tablet and the words bounce around and change shape and become something other than words. The things I can see in this darkened room gain colour and movement and dance. I let them, as it makes me know I’m here. I can still see them with my eyes closed.

I go back to the world of language and meaning when the room becomes brighter and I sense someone come in. The world I’m normally most comfortable in, the one I’ve had to learn it’s okay to leave sometimes. I used to only leave it when awake during overload, so found it scary. I know now that leaving words behind isn’t bad, especially as words take energy that is in limited supply. I need it to interact with people though, as I don’t know how to communicate without it.

I don’t know how to describe it properly, the world without words. I know others spend more time there, and are much more used to it. Many find it easier than words. I never used to, but now words don’t always make sense so I’m learning how to be without them again, like I know I must have before. Without overload it’s beautiful.

Jun 062014

I’m hoping to post the photos I took to go with this post at some point, but I’m not at home right now so will be when I’ve got more cognitive spoons to do so (I think I’ve got them online, somewhere) :)

Stuff has happened. Lots of stuff. Bullet point time!

  • Payback from seeing my brother only lasted a couple of days. It’s been a lot shorter in general recently.
  • I saw the CFS team. They are going to help me with learning safer transfers next time they visit (after I’ve seen Dr Spickett).
  • I sat up independently on the edge of the bed! It was amazing and my heart didn’t start doing funky dances until after I was lying down for 30 minutes. It’s strange.
  • A couple of days after that, I had no dizziness. Dizziness has been a constant of my illness since the beginning. So I sat up again. And was fine. Then I decided to try standing, and after a couple of failed attempts managed it while wearing my green high heeled boots (I can’t put my left foot flat on the floor with my leg straight) and my zimmer frame.
  • Since I was standing and pretty steady with the help of the zimmer frame, I tried walking. And managed three steps! They were little steps, but I did it! Afterwards I took one step backwards and collapsed on my bed, but I walked!
  • I didn’t get any payback from that, though my dizziness did come back and hasn’t gone away again since (oh well).
  • I went to the local polling station in my wheelchair and voted. We’d forgotten to apply for a postal vote for me and it was a good thing in the end. I wasn’t really well enough but I managed it and wasn’t too bad afterwards :)
  • Had visit from Sammie. I’ve been playing lots of Minecraft with her and talking on Skype with her but it was amazing to see her. We had a grown up discussion about something important she needed to talk about with me, then we had awesome mum and daughter time with lots of cuddles :)
  • Had care plan review with someone from the care agency. Really overdid it during it (I could tell as I was struggling to answer questions from about halfway through). Got payback from that :(
  • Johan had his care assessment finally. I did most of the talking as Johan can’t talk about himself. That was also too much but the payback (which was still happening from the last visit) only lasted a couple more days, luckily.
  • Sammie made me a purple penguin house in Minecraft, and herself an ice palace (inspired by Frozen) with a jaguar. She’s much better at building in Minecraft than me :)
  • Our upstairs neighbour’s brother broke into their flat. It was horrible. I spoke to the police when it happened (during the middle of the night) then gave a statement to the police the next day. There was also repairs done. The noise made me worse than I had been for weeks for a few days and scared us.
  • Johan went to see the cricket a few times. I think he enjoyed it.
  • I bought a couple of new shinies. A new SSD for my laptop and a Kindle paperwhite to read on. Yay!
  • I’m now in a care home for just over a week. Came in yesterday and will be going home next Friday. This is so Johan can go to see his friends and family. It’s mostly good (though I still don’t agree with care homes).
  • I had a bath! It was amazing! First bath since I moved house :D I feel properly clean. My hair also looks like hair, according to Johan :P

Tomorrow Johan goes to Glasgow the Leeds. I’ll be keeping in touch with him via Google Hangouts and Sammie via Skype. It’ll be the longest we’ve been apart since he moved in but it’ll be good for him (and I can do more thanks to the hoist and a bath!).

I’ve done so much in the last few weeks and I’m really happy :D Johan’s assessment result said he has substantial care needs and his provisional personal budget is similar to mine, which he’s finding hard to come to terms with but he needs the help. Hopefully it’ll make our lives a bit easier, as we’re hoping to join our care packages together so we can both get the help we need.

May 122014

Danni on ME Awareness Day 2014Yesterday (Monday) was ME Awareness Day. I had a couple of ideas of blog posts I wanted to write for the day, but my brother came over on Sunday and I spent too long chatting, which means I now have payback. I didn’t wake up until 5.20pm and spent most of the evening in a weird fuzzy state. I had been doing really well (last week I managed 2 hours in the living room with no worsening of symptoms) but I pushed too far Sunday and now I have to pay.

That’s the defining symptom of ME- a worsening of symptoms due to too much activity. What counts as too much depends on the person and the severity of their illness, and to make things complicated it can change from day to day, from hour to hour. The payback has various names (the most common I’ve seen being post exertional malaise or post exertional neuroimmune exhaustion) and the symptoms it causes are as varied as those of the illness itself.

My payback today consists of a worse than normal headache, pain behind my eyes, greater light, noise, smell and touch sensitivity, more pain (mostly muscle and joint pain, some nerve pain, other random pain I can’t really define), more muscle weakness, worsened coordination, worse nausea, difficulty swallowing, muscle spasms and the fuzziness I mentioned earlier. Compared to how I’ve been the last couple of weeks, it’s pretty bad, but before then this was pretty much my normal. I’m hoping with lots of rest I’ll get back to where I was.

If you want to find out more about ME, my previous blog posts about it from two years ago are linked at the top of my blog. There’s also the #MEAwarenessDay hashtag on Twitter. Jenny, Stroopwaffle on Twitter has tweeted about living with very severe ME for years. If you know any other good places please comment as I’m not sure when I’ll be up to finding them. It’s a sucky illness but hopefully there will be a cure found.

May 022014

Update post (so I don’t forget in a few weeks/months/years when I need to remember stuff :P)!

  • I played lots of Diablo 3. It is fun :) I bought the Reaper of Souls expansion when it became obvious I was going to finish it :) I have now finished the story (including expansion) and when I last played it I was level 56 on my wizard.
  • I’ve started playing Minecraft again, on the Autcraft servers. It’s nice to not have to worry about neurotypical social constructs, and though most of the players are younger than me they’re really cool.
  • I got obsessed with Classic Alice and even took part in a Hangout with the cast. That was fun but rather draining :) I asked if they’d considered children’s books for future episodes, and now they are doing so :D
  • Nutritionist came out to try and figure out my weight from my arm measurements. It looks like I’m no longer underweight. Yay! The Fortisips are working.
  • I managed to arrange Sammie’s Easter eggs for the first time in a few years. No feeling guilty when I find them under the bed 10 months later :P
  • Good Friday was good. I had my hair washed. First hair wash of the year! Also had chish and fips for tea, which is a Danni tradition I like to keep :)
  • Easter Sunday I soaked the bed by catching the end of the Hydrant tube under me and pulling it off. Johan had not long been asleep and so was really groggy and really struggled to get me sorted. That was very much unfun.
  • Later on I watched the church service on the telly. That was good. There was Indian dancing during the prayers. Then my TiVo box rebooted so I couldn’t watch any more. That was not so good, but luckily the service had finished by then.
  • Got payback from the Hangout/hair wash/bed soak. Felt really ill for a couple of weeks. Even ended up throwing up which rarely happens now with the heavy duty anti emetics I’m on.
  • 25th April was World Penguin Day. People sent lots of pictures of penguins for me and my waddle (apparently the agreed collective term on land- in the water they’re a raft). That made me happy :D
  • 30th April started feeling much stronger than normal. Watched UP. Got annoyed at the TiVo box restarting lots. Cried a bit. It was a good film :) Later on had cuddles with Johan which made up for it :) Started pestering Johan to let me go in wheelchair. He said see how I am in a couple of days because he was worried about payback from watching UP and cuddles. We also took my curtain down so I could see outside again :)
  • Yesterday was still feeling stronger, so had loads more cuddles with Johan. I also wrote the previous blog post (which was hard and emotional for me) and finished a 1024 piece jigsaw puzzle on my tablet that I’d started a few days earlier. The picture was of an Emperor penguin and it’s chick :)
  • Today to Johan’s surprise I was feeling even better than the last two days. I got dressed in the morning in a rainbow dress, pink penguin socks, rainbow headscarf and cream cardigan. I was plotting…
  • The new U shaped cushion I’d ordered for my bed arrived. I ordered it with a lilac cover this time. I’m keeping the old one (which is rather flat now) as a spare, and I’m just accepting I’ll need to get a new one every year or so.
  • I also received a tube director for my Hydrant. It’s a neoprene cover for the tube with a bendy wire in it so you can angle it where you need it. I’m hoping it’ll prevent any more bed soakings.
  • After the cushion arrived (yay for delivery tracking that lets you know when it’ll be coming to the hour!) it was time for my big adventure- going outside! Johan helped me get into the wheelchair (though I managed to get up to sitting by myself with the bed’s help) and once I was settled in it and the worst of the dizziness had passed he took me out. We went down the ramp and I saw a butterfly and then as I wasn’t feeling amazing with the movement we stayed halfway down the ramp and I watched the traffic for a while. It was amazing! The sun felt warm on my skin, the wind was cold and it smelt really fresh. I was still feeling not too bad when I came back in, as I didn’t want to push it. On the way back I was able to see a bird’s nest (I could see it from my window in bed but wasn’t sure if it was a nest or not). I can still open our flat door with my feet :D The transfer back into bed was harder than the transfer into my wheelchair and I felt rather nauseous for a bit. The way Johan dragged me onto the bed we ended up kinda tangled in each other and we converted it into more cuddles for a few minutes, then he sat in my wheelchair next to me so we could have handholds without him restricting where I could lie on the bed. I’ve had such a good day and I’m the happiest Purple Penguin :D
Danni outside in the sun with Penguin, Primrose and Poseidon

Danni outside in the sun with Penguin, Primrose and Poseidon