Aug 202015
 

Was talking to Johan today about how the last full progression raid I did (Firelands in World of Warcraft Cataclysm) I didn’t do too badly, but then got payback for ages so it meant I’ve never tried again (I’m also much more ill than I was then). During it I came up with the idea of Spoonie raiding, and what that would involve.

No longer than 15 minutes before a break.
No longer than 90 minutes a raid.
One raid a week.

Johan pointed out that it wouldn’t work at all for Mythic – Mythic Archimonde takes hundreds of attempts, and we’d fit in about 4 a raid πŸ˜› I said we might get it down if we started now and carried on until the end of Legion (the next expansion).

Obviously this was never a serious suggestion, and even with such a short schedule it would be too much for me (I’m only just occasionally managing heroic dungeons, and we massively outgear them now so it doesn’t matter too much if I lose concentration, which happens regularly). I know there are spoonies that do raid, depending on their energy and brain fog levels. I wouldn’t be surprised if there were guilds specifically for spoonies (I know there’s at least one for people with social anxiety).

I think I might have to accept that I’m too ill for any kind of scheduled raiding. I’m lucky that I can pay WoW at all, even if it’s from bed. Still, the idea of a Spoonie raid with other people at my levels of brain fog amused me :-)

 Posted by at 5:15 am
Aug 052015
 

And I’m lying in my bed like always. Have had the blind up and the window open a few times though :)

My sleeping pattern has been non-existent recently, but I’m hoping to get it fixed soon. Missed the evening carer for over a week by being asleep so not had any big things done. I woke up at 6am today so I’m hoping to manage to stay awake for the evening call, but I’m already getting tired and it’s only early afternoon. Silly body.

The big news I have is I’ve got a date for my hoist installation! It’s being installed the 2nd September. Johan had already planned to go to Insomnia 55 the last weekend in August so we were already planning to have me in the care home, so it’s worked out really well. I’m really excited at the prospect of getting out of bed without worrying about how I’m going to get back in πŸ˜›

Johan’s day service thing is going well. He’s really enjoying it, and it’s nice for him to have something to do that’s not looking after me. We’ve not sorted out care for me yet, so I’ve been mostly sleeping while he’s there (cause of broken sleeping pattern, along with needing cyclizine a lot) but they’ll bring him back in an emergency. The new care agency isn’t starting until the end of September now, so hopefully we’ll get things sorted before then, as I’ll need to be reassessed due to having the hoist anyway (most agencies insist on two carers for hoisting).

My ability to cope with sensory stuff is improving, to the point where I’m actually thinking my room is dark sometimes πŸ˜› Have bought a light shade for my ceiling light to see if I can cope with having it on (main problem at the moment is it shining in my eyes above my bed). If not then I’ll get another lamp to put somewhere else in the room to increase the light levels when I can cope with it. Apart from 30 minutes in the morning, my bedroom doesn’t get direct sunlight and is sheltered by trees so it never gets that bright in here even with the blind up (my blind only reduces the light rather than blocking it).

Everyone except me is going on holiday πŸ˜› Sammie went on holiday last week, Johan’s planning on going to Insomnia 55 as I said earlier, and Esther is currently away. I was a tiny bit grumpy about it when I realised, but now I’m looking forward to the chance to have a bath and get out of bed while I’m in the care home, and after I get home getting out of bed and maybe having a shower. It’s weird not having Esther here, but I’m glad she’s had the chance to get away. One day I’ll be well enough to go on holiday myself :)

I’ve managed to read a few books the last couple of weeks, which has meant I’ve caught up to where I’m meant to be for reading 50 this year. Mostly children’s books, but a couple of adult ones a well. I’m managing my computer several times a week so I’m going to start planning what I want to do on there when I get on, as sometimes I’m on but not really doing anything and then I kick myself when I’ve come off for not doing what I wanted. World of Warcraft is still my main game, and I’ve been working on reputations in Warlords and pet battles mostly.

I also installed Windows 10 on my computer and a different rom on my tablet. Windows 10 seems to be working well for me, as I mostly use my computer for games and web stuff now and they all work fine. I like the new start menu (finally removed Start 8) and it seems to run faster. My new rom for my tablet is CyanogenMod based, so I’m able to customise it more and it no longer has TouchWiz. Still got to work on it but it’s running faster and I’m on 5.1, which isn’t available officially yet.

Apart from my nausea and digestion issues (which are getting worse) I’ve been mostly stable recently. Still occasionally do too much and end up with payback, but I’ve mostly figured out my limits. The digestion issues are not good though, and I’ve still not managed to see my GP (with Johan being out 3 times a week and me being asleep during the day it’s been hard to arrange). Cyclizine is amazing even if it does put me to sleep, as it means I can at least keep my food down. My portion sizes are decreasing as I get full after less food now, so I’m a bit worried about weight loss (it’s hard to tell when I can’t be weighed, but my bones in my bum and hips are sticking out more). I’m going to buy some meal replacement bars since milkshakes are really not agreeing with me right now.

Otherwise I’ve just been doing normal stuff. Playing silly games on my tablet, bossing Johan around, arguing about wanting to do things for myself πŸ˜› I did get new bodies for Nicky and Penelope (we used penguin magic to transfer them) as their old bodies were dropping bits everywhere. Penguin is now demanding a new body but as they don’t sell his anymore it’s being a bit harder to track one down. I also got a new blue Trabasack to use when I’m on puter or in my wheelchair (which will be happening soon! Yay!). I discovered part of the reason I struggled with being on my computer was the weight of the keyboard, so I bought a lightweight one with purple leds (as it can be dark in here) and it’s making it much easier.

 Posted by at 4:19 pm
Jul 232015
 

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.
  • I can go on my computer whenever I’m well enough.
  • I’m always surrounded by penguins.
 Posted by at 4:02 am
Jul 012015
 

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,Β  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 Β£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 πŸ˜›

 Posted by at 1:55 am
May 302015
 

I’ve been trying to blog for ages but it’s just not been happening. Decided I’m just going to type words and see what comes out.

  • My friend Ron died. He’d been ill for a while and was 70, but as he was a good friend it hit hard. I’m glad he’s not in pain now, but the selfish part of me wants him back. Being on Twitter (where we met and talked) isn’t the same now. I was planning on visiting him. I wish I could have gone to his funeral.
  • My mood hasn’t been great. I’m not depressed, but I’m less able to cope with stuff and my anxiety is really bad. My ME hasn’t been too bad for me, and I’ve been able to do some stuff but I want more. I want to get out of bed. I want to manage my computer everyday, not just some days. I want to go outside. I want a shower or bath. I want to not feel crap all the time.
  • I did watch the Eurovision final. That was good. I particularly liked Serbia.
  • Had meetings with care agency and social worker. My care has been cut a bit, but might be going back up a bit more again in a couple of weeks as now I don’t have enough time. Care plan finally has a list of tasks and says carers are to prompt me rather than ask me what I want doing. If my stomach would cooperate I might be able to manage to eat more. Discovered the care agency have been breaking the contract with my care and rota.
  • Still not seen my GP. Really need to sort that out as I’ve been wanting to see her all year. Keep forgetting to ask the carers to phone.
  • No word on the hoist yet. Social worker has said she’s going to try and find out what’s going on. Will see if that happens.
  • I applied for and got accepted for my first credit card. I mostly want it for the payment protection, but the 19 months interest free on spending will be useful for getting the stuff we need like a new cooker. I just need to be strict about getting it paid off, which I should be able to manage.
  • I still need to change my name with various people. Bank and DWP are the two main ones. I don’t know how to write letters anymore. This is a problem.
  • We bought a new washing machine. It is much much quieter than the old one.
  • The drawers in my bedside table have collapsed. As that’s where I keep my meds and stuff, I think I’ll be getting a new one when I next get DLA (or that credit card).
  • I told my social worker I’m genderless. It felt weird, and I’m not entirely sure she understood. Also told Sammie, but she got what I meant pretty quickly. Sammie is awesome.

Gaming stuff below, feel free to ignore:

  • Decided to sell glyphs in World of Warcraft. I hurt my hands milling. Now thinking I’ll wait until patch 6.2 to bulk make glyphs due to this. It is giving me a decent income though, along with selling enchants, despite only getting on a couple of times a week.
  • I failed the silver proving grounds for DPS on Danni several times. As Johan doesn’t have a DPS spec on his priest, this means I can’t do heroics with him (I have silver healing but don’t feel confident enough to heal strangers). I really want to finish the inn quests but at this rate I won’t manage it.
  • I’ve really enjoyed the girl gamer storyline in High School Story (level 20). I think a game similar to that quest line should be compulsory for kids to play (preferably before they discover 4chan or Reddit). I’m currently partying for a Hip Hop girl and it’s hard πŸ˜›
  • I got the Fairy Tale girl in Hollywood U! Currently doing this week’s quests and trying to party for a Fantasy guy. I bought Rok and Song and will buy Ilyria when I have more money. My campus is level 31, my MC is level 54 and most of the rest of my entourage is level 15 or above. After the Fantasy guy I need to party for both Broadway guy and girl, but once I’ve got them I’ll have them all (until they release more).
  • There’s been an update to AdVenture Capitalist, so I’ve got more to do on Earth, plus the Moon has been released. The moon was so slow it was boring at first, but they’ve added some extra boosts and goals and it’s not as bad now. I currently have 86 duotrigintillion Angels on Earth, and 36 quadrillion on the Moon.
  • I reached the number 1 spot in Kim Kardashian Hollywood for the second time, and also number 1 in the top couples list. I reset again, and am now climbing up the A list for the third time. I dropped down the top couples list so as this weekend is a dating event I’m going to see if I can top it again.
  • In Dragonvale I’m currently trying for a Butterfly and a Dodo dragon. I have a Snowflake dragon for the cooperative breeding cave in the hope I’ll get a second one for breeding at some point. I’m getting my second type of galaxy dragon once it’s finished breeding in a couple of days :)
  • I’ve reached rank 16 in Hearthstone with my Messy Priesty deck. Considering I only put cards in there based on how cool I find them, it’s working remarkably well. I have bought all of the Blackrock Mountain adventure but instead of fighting Ragnaros (the next boss I need to beat) I just keep doing the mage class quest over and over as it’s fun.
  • I’ve done a little bit of playing in Diablo 3, but when I’m on my computer and not in WoW I’ve been trying out Heroes of the Storm. I’ve bought Jaina and Li Li and will be buying Tyrande as soon as she’s on sale. I really like the support style that Li Li has, so I was super happy when I got the gold to buy her :) I’m still only playing the training maps but I hope to play some real games with friends at some point.
 Posted by at 12:33 am

ME Awareness Day 2015

 Danni, Important Stuff, M.E., Physical Disability, Real Life  Comments Off on ME Awareness Day 2015
May 122015
 

Today is ME Awareness Day. I was hoping to record a video, but today I’m unable to speak or tolerate much light so it wouldn’t have been very good. Instead I’m writing this blog post.

Danni in their wheelchair outside the Polling Station

Danni in their wheelchair outside the Polling Station

On Thursday I did something huge for me. I got in my wheelchair, went out, and voted. It was the first time this year I’d been out of bed other than to go to hospital. It confirmed to me that when I get my hoist I’m well enough to spend some time in it, as the only bit that was problematic was getting back into bed. I didn’t have the strength to transfer so Johan ended up throwing me on the bed. It worked, but was painful.

Over the weekend I saw friends. Rammi came up from London to stay for a few days (and see S Club 7 with Johan) and Marga and Sue visited on Saturday with their daughter and witnessed my name change (I’m now legally Danni rather than Danielle). It was awesome and I’m glad I saw them, but now I’m paying for it.

Yesterday I was awake for about 5 hours in total. Hard to tell exactly as my sleep was very disrupted by nightmares and pain. Not unusual at the beginning of payback.

Danni getting payback in bed.

Danni getting payback in bed.

Today I woke up when the carer opened my door this morning but unfortunately I had sleep paralysis so wasn’t able to tell her I was awake. Fell back asleep she left and was woken again by drilling. I already had ear plugs in from yesterday but even with them and my ear defenders on it went right through me. Not my favourite way to be woken up.

It’s hard to tell which symptoms are worst right now. I made the mistake of drinking a milkshake so nausea is really bad right now, though hopefully the anti emetic will help that soon. Lots of coherent types of pain. Muscles that feel like they’ve been overused and ache, joints that feel inflamed (though logically I know they aren’t). Skin that is both itchy and burns. Electric shocks going through my nerves, especially my arms and legs. Chest pain that’s worse when breathing. Abdominal pain worse than the gallstone pain I had. Head which is pounding, made much worse by any movement, sound or light (I’m struggling to use my tablet on minimum brightness with my sunglasses on, so am mostly using one eye). Sore throat which hasn’t femur better in over 5 years. Random spasms and paralysis to make things interesting. Unable to speak and struggling to make noise, and can’t understand most of what Johan is saying. And those are just the ones
I can figure out right now.

I’m lucky. Painkillers help me a little bit. I only get this level of illness if I’ve overdone it. For some people with very severe ME, this would be a good day. I have my tablet so can type to communicate and try and distract myself from how I’m feeling. I have hope that when my hoist arrives I’ll be able to get out of bed more regularly and build up my time in my wheelchair. For many, that’s not an option as they’re just too ill.

Even in my good days I’m in pain, have severe muscle weakness, experience more symptoms than I care to list. Spending time in my chair sent my heart rate racing, and made me feel even more dizzy despite being fully tilted and reclined. Yet to me it was a massive achievement. I’m not scared of activity, but I’m afraid of payback as if I push too far I could relapse and become more ill than I already am.

I’ve blogged before about ME. You can find some of the posts linked to above.

 Posted by at 3:06 pm
May 012015
 

 

Blogging Against DisablismThis post is part of Blogging Against Disablism Day 2015. My brain is very foggy so apologies for any mistakes.

There’s an election next week here in the UK, and I’m scared. The last five years have been very difficult for my friends and relatives, and it’s looking likely that it’s just going to get worse. We’re some of the least affected I know, yet even we’re feeling the effects of the cuts and sigma caused by this coalition government. Most of it is because we’re disabled and not a “hard working family”.

I’m one of the lucky ones in many ways. When moved over from Income Support to Employment Support Allowance, I was placed directly into the Support Group without needing a work capability assessment (the Support Group is for those considered unable to work now or in the near future even with support, though the criteria is mostly unrelated to ability to work). My Disability Living Allowance renewal (I’ve not been moved over to Personal Independence Payments yet) went through without an assessment as well. Now that’s probably due to being completely bedbound and having mountains of supporting evidence, but I’m incredibly grateful. It’s also very rare.

The coalition government’s stated aim was to reduce the amount of people on benefits, especially the disability and illness related benefits such as the ones I’m on. They’ve managed to do this, but not to the extent they said they were going to, as most people were more ill or disabled than they realised and the fraud rate was much lower than they implied. What they have done is caused a lot of harm, and even deaths through sanctions, delayed and denied benefits, and the effects of other cuts culminating in people no longer being able to manage when previously they could.

It’s already very hard. If you’re not a “hard working family” (working full time – part time even if you’re ill or disabled doesn’t count) then none of the big political parties want anything to do with you. If the Tories get back in, they want to extend the sanctioning system they’re already using against the unemployed and those in the work related activity group on ESA to those who are working part time, even if there’s no full time jobs available. They want to tax DLA and PIP,Β  reducing the incomes of the ill and disabled further. That’s before we get to things like universal credit, the benefit cap, and the other ways they’re apparently going to slash the benefits budget.

Labour have also gone full in with the hard working families talk, and have said they don’t want to be the party of those on benefits (so people like me). The Lib Dems supported the Tories with all the benefit cuts, so no matter who gets in (as with the first past the post system it will be one of the big parties, even if they have to form a coalition) it looks like it’s only going to get worse for those who are ill or disabled in the UK. UKIP are scary with their racism and bigotry, and though the Greens are the closest in terms of politics to my views they support euthanasia, which is dangerous in a society that considers disabled people worthless.

I’m too ill to work. Even the government agree with this. Johan looks after me, which means he’s on call 24 hours a day, is frequently sleep deprived, and he still hasn’t got the help he’s been assessed as needing by social services. Esther can work part time, but even though there are very few full time jobs available and many people chasing each one she doesn’t count either, despite doing voluntary work on top of her paid job.

There’s already been an increase in disability hate crime, mental illness, worsening health and deaths due to the government and the scrounger rhetoric. Friends who have ended up begging for help as they have no income while waiting months for assessments and to hear whether they’ve jumped through enough hoops, friends who have ended up in hospital because of the stress.

I hope I’m wrong. I hope that whoever is elected in on Thursday will reverse the budget cuts, tightened benefit criteria, the sanctioning system and actually work to improve life for those of us who can’t work full time. I don’t have a problem with fair assessments for benefits, or for helping those who can work with support to do so, but it needs to actually be support, not just threats to remove someone’s income if they can’t jump through often impossible hoops. I don’t know who’s going to be in power next week but there’s a chance to improve things and I want them to take it.

 Posted by at 3:53 am
Apr 212015
 

Update post in list format cos easier with broken brain :)

  • The big one: I’m getting my hoist! Got a phone call 10th April saying the OT was coming with a couple of contractors to measure up for the hoist. Friday 17th they did the measuring, and have worked out how best to fit a ceiling track in my bedroom and the living room (so I can lie in there during the day for a change of scenery). They need to sort who’s installing it (two different companies did the measuring, as they got to get quotes from more than one), sort the funding (which I was told won’t be a problem with how much support I have for getting this hoist) and then work out when they’re available to do the install, but I should be looking at 6 weeks or so. I’m hoping it’ll be before my birthday, which gives them about 9 weeks.
  • Apparently the best way to fit it in my bedroom is going to be diagonally from the corner next to my bed/the window to the corner next to the door. This is going to be interesting to look at πŸ˜› (I’m not sure what they decided in the living room as I couldn’t see.) Johan helped a bit with the measuring :)
  • I got my sleeping pattern back to normal, then broke it again a couple of days later. This has happened several times. I’m getting a bit annoyed that I keep missing stuff because of it (not that it’s anyone’s fault, just that it’s happening).
  • I think I might be getting over the cold. Though I still have a blocked nose and I’m still sneezing, so maybe I haven’t. Or that could be hayfever. Since I have all the other cold symptoms permanently (sore throat, headache, temperature dysregulation, coughing) it’s hard to tell.
  • Had my annual review with the nurse from the GP surgery. I didn’t realise I get annual reviews but apparently I do. I guess it’s a good thing πŸ˜› My blood pressure was slightly low when she took it, and she initially measured my pulse as 55 bpm but unfortunately that was hers, not mine (mine was 87 bpm, which is about normal for me).
  • My GP can now be contacted by email. This will be useful if I ever manageΒ to write emails (or can convince Johan to write them). As I’m struggling a bit with my mental health and a couple of other niggly bits I’ve asked for her to come see me (nothing too major, just anxiety is more of an issue and flashbacks/nightmares are getting worse, and I not know how to cope with them, and not being sure if I have a urinary tract infection again or not).
  • GP has prescribed the supplements I need cos I’m deficient in a couple of vitamins and minerals. One is folic acid, and the pack says it’s for preconception. Is there something they know we don’t? πŸ˜›
  • We have a cleaner! She comes weekly and has already done a massive amount. OT didn’t complain about the amount of stuff we had when he came for the hoist, which was good. She’s from the council’s home help team and is starting to understand that we need help with decluttering and tidying as well as cleaning.
  • I have a care review on Wednesday 22nd. Apparently it’s going to my social worker (I have one now it seems), the care agency, the home help service, and I think there’s someone else but I’ve forgotten. Too many people. Hopefully we’ll be able to sort out the things that aren’t being done (the biggest thing is I need prompting adding to my care plan so care workers know I’m not going to be able to tell them what I need doing).
  • As my Nexus 10 is in the process of dying (and is occasionally flashing a white screen at full brightness, which is not good for me) I bought a new tablet (well, asked Johan to buy it for me) on Saturday. I was hoping to hold out a couple more months until the new ones were released, but it was getting urgent. After looking online and going backwards and forwards loads (I’ve been talking about getting a new tablet since last year) I decided on a Samsung Galaxy Tab S 10.5. The screen is a bit bigger than my old one (10.5″ compared to 10.1″) but the actual device is slightly smaller and much thinner and lighter. The only problem is it’s so light and thin it slides on the pillow when I’m trying to use it, so I’ve had to get a case to stop it πŸ˜› I’ve upgraded it to Lollipop (it came with Kit Kat and for some reason the Lollipop update hadn’t been released in the UK yet so I did it manually) and rooted it so I could transfer all my games and stuff over. I’ve also enabled the software navigation bar as the home button (being a physical button unlike the recent apps and back buttons) is too hard for me to press frequently. Depending on how well I get on with TouchWiz I might stay with the stock rom or I might swap to something else that doesn’t have it.
  • I’m getting on my computer a few times a week now, but not always at the times I want. It’s a great distraction but that does make it easy to overdo it. It’s really good for my mental health though (which is a bit wobbly at the moment though more anxiety than anything else) and when I catch her I love talking to Sammie.
  • I’m really struggling with things like food shops, buying stuff I need (like clothes/pyjamas), and communicating with people. I not sure what to do about it. It’s taking me months to decide things which isn’t great. Autism plus ME makes things hard.
  • Our washing machine is making a lot of noise. Something (we think a bit of plastic from the drum) has fallen inside the sealed bit. We’re not sure whether to try and get it repaired or buy a new one. I’m no way well enough to choose a new washing machine, or sort out a repair, and Johan isn’t either (Esther can help with phone calls but needs to be told who she’s phoning and why).

Below is all my gaming stuff so feel free to ignore it πŸ˜›

  • I managed to get Dannila (my Monk) to level 100 in World of Warcraft. I was still in Talador (though wearing heirlooms). Now I’m questing through Spires of Arak while daisy picking, mining, surveying, logging and trying not to die.
  • Danni (my Priest) got Harrison Jones as a follower today. Yay! I’m mostly only doing garrison stuff on her right now, though I’ll do the Apexis daily if it’s one I’ve not done and I’m feeling up to it. I’m hoping to be well enough to do heroics on her soon as I’ve got all the inn quests.
  • Tiarna still doesn’t have her glyph of the penguin back so she’s levelling the slow way- through garrison missions. She’s about halfway through level 92 πŸ˜›
  • I’m still playing all my mobile games. I’m not spending quite a much time on them as I was because I’m trying to spend more time on puter.
  • I unlocked everything on AdVenture Capitalist so I’m now very slowly getting more angel investors (have 2.631 duotrigintillion right now and hope to roughly double that next reset, which will probably be in a week).
  • Krystall (my character in Kim Kardashian) has climbed into the top 100 of the A list for the second time and is looking to reach the top 50 soon. I’m pretty sure I’m the only person I know still playing this πŸ˜› I mostly like holding parties in my house in Calabasas as it gives me over a million new fans for each 3 hour party (that takes me less than 10 minutes if I’ve got all the energy I need).
  • In High School Story my school is level 19 and I’m currently partying for a Mascot guy during the day and a Movie Star guy during the night (Mascots are the only class type that’s still time based). I’m really running out of room in my hangouts even though I’ve got all three upgraded platinum as well as the type ones πŸ˜›
  • In Hollywood U I’ve completed all the quests (luckily there’s new ones each week) and I’m currently levelling all my entourage to level 15 (Danni is level 45 and most of the main characters are level 20). I’m partying for a Celeb Blogger guy then it’ll be back to partying for the elusive Fairy Tale girl. My space issues aren’t quite as bad as in High School Story but I still need to be careful not to admit too many of those I already have.
  • In Dragonvale I’m currently trying to breed a Spring dragon and a Miasma dragon. While trying for the Spring dragon I’ve bred a Double Rainbow dragon and it looks like I’m getting a second one. They’re cool but they also take 60 hours to breed so I’d rather not get too many. There’s a lot of dragons I don’t have that I can get with the combination I’m breeding with (Leap Year and Snowy Gold) so I’m hoping to get some of them. I’m a bit annoyed they released the current star fall event so soon after the Easter egg event as it means I don’t think I can get enough star dust to get even one dragon (though I’m hoping I’m wrong). I should get the Walk of Stars (which is a pretty path) today, hopefully.
  • I’ve got spreadsheets for High School Story, Hollywood U and Dragonvale to keep track of what students and dragons I have and what ones I’m partying/breeding for. I spent far too long one night setting them up with all sorts of formulae to get it working how I wanted πŸ˜›
 Posted by at 9:35 am
Apr 052015
 

ME is a fluctuating illness. Sufferers have good days and bad days, good hours and bad hours. For those a bit further up the functioning scale, the fluctuations are pretty easy to see. On a good day random ME person can go out and do stuff (how, what and for how long will depend on how their ME affects them, but I’m thinking out of the house). On a bad day that’s just not possible, and for anyone with moderate to severe ME a bad day can mean being unable to get out of bed.

I bounce around the bottom of the functioning scale (there’s actually several, all measuring slightly different things, but I’m at the bottom of all of them). To an observer, there’s not that much difference between a good day or a bad day. On a good day, I’m stuck in bed, incontinent, and reliant on 24 hour care. That’s still true when I have a bad day. To me though, there’s a massive difference, even if it’s only a percent or two on the actual scales.

On a good day I need the light reduced as I’m photosensitive. I can’t tolerate moderate to loud noises, and my body floods with adrenaline if the phone rings or the doorbell goes (even with all the doors shut). Sitting up will make me faint, and if I move too much my pain levels increase massively and my muscles become weaker. My muscles spasm, my limbs randomly jerk, and I’m experiencing too many other distressing symptoms to list. What I can do is speak, prop myself a bit up using the bed, manage my lamp to provide enough light to see by, my normal glasses while looking at my tablet (on minimum brightness) and the big one, go on my computer. This means I can communicate as easily as is possible for me, and I can talk to my daughter, Sammie.

Using my computer I manage our finances, do food shops, use Skype (to talk to Sammie), attempt to use Facebook to keep up with my friends and family, research whatever I need to research at the time, buy stuff, and play games to distract myself from how horrendous I’m feeling. I can’t manage it every good day (on other good days I’ll have a bed bath, change my pyjamas, and occasionally have visitors instead) but I really appreciate it when I can. It makes a massive difference to how I feel. On very good days (which are rare, maybe a couple of times a month if I’m lucky) I’ll be able to try watching a TV programme or a film, have lots of hugs (physical contact is painful) and do more work on trying to sit up without fainting. If transfers were possible (I need a hoist which I don’t have yet) good days would mean trying to get into my wheelchair, and very good days I could attempt to have a shower (using a tilt in space reclining shower chair, which has been approved but I don’t have yet, like the hoist).

Bad days are different. The computer is completely out. I need sunglasses to tolerate the lamp for pad changes and other personal care, and need it off otherwise (even with sunglasses on I can’t manage it for too long). My tablet becomes my lifeline to communicate, but I can only use it in short bursts then I have to rest. Thinking is extremely difficult and I can’t distract myself from the overwhelming pain I’m in. Communication becomes harder, as I can lose speech (or be too exhausted to speak – both happen), typing is very difficult, and my concentration and memory become very unreliable. All my symptoms become much worse, having basic care (such as pad changes) done is almost unbearable (and kept to an absolute minimum) and I often lose the ability to chew and swallowing is very difficult so I mostly live on milkshakes. I also experience random bouts of paralysis- sometimes just my arms or legs, but other times I’m unable to move any part of my body, which is terrifying no matter how many times I experience it. If I’m lucky it’ll only last a few minutes, but it has lasted days before.

I’m scared of bad days. I know some of the main triggers that are likely to cause them, and so I do my best to try and avoid them. It’s not always possible though and a lot of the time it’s out of my control. How well I am can change within hours or even minutes – sometimes getting better, but usually getting worse. Doing too much and being overwhelmed are pretty reliable causes of a bad day, yet I’m not always able to judge how much I’m able to do at any time without experiencing payback, and if the neighbours are fighting or a car alarm goes off I’m likely to have a period of relapse through no fault of my own (I can cope with relapse better if it’s because I’ve done something I wanted to do).

Due to how ill I am when I’m having a bad day, on good days I don’t feel like I’m that ill. I forget that most people with a severe disability or chronic illness are still able to manage more than I am, and see myself as more moderately ill than severe. If I hear that someone is so ill that they’re only able to get out of bed to go to the toilet, I think they’re more ill than I am, forgetting that I’m not even able to do that. One of Johan’s jobs is to remind me of what I am capable of, and also what I’m not (as if I try to do something I’m not able to do, I’m pretty much guaranteed to relapse). Since confusion and cognitive issues are part of my illness, I sometimes forget that I can’t walk, that I can’t sit up, and try to do so anyway (which never ends well). The cognitive problems can be some of the scariest, and unlike pain and nausea there’s no real treatment for them and unless you know me well it’s not always obvious how with it I actually am. At it’s worst I stop being able to understand language at all, which is scary when someone is talking to me and I have no idea what they’re saying.

It’s taken me a few weeks to write this blog post. I knowingly overdid it yesterday so am starting to pay for it now, but since it was talking to Sammie it was worth it. I’m hoping the payback won’t be too bad, and I’ll come out of it quickly. I’m grateful that even through the bad days I’m able to stay happy, and I have people who love me. Though it’s not always a good thing, I’m also grateful I’m able to forget how ill I am when I’m having a good day for me, as it makes life much more bearable. I’m hopeful that in time I’ll improve and what’s a good day now will be worse than my future bad days :) I’m also very aware that there are people with ME for whom my bad days are their good days, and I really hope that they are able to get better.

 Posted by at 4:37 pm
Mar 122015
 

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 πŸ˜› 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 πŸ˜› 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 :-)

 Posted by at 5:27 am