Month: May 2015

Danni

Sadness

Computers, Danni, Gaming, M.E., Mental Health, Physical Disability, Real Life, World of Warcraft

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 😛
  • 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.
Danni

ME Awareness Day 2015

Danni, Important Stuff, M.E., Physical Disability, Real Life

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.

Danni

Blogging Against Disablism Day 2015: Scared of the Government

Autism, Blogging Against Disablism Day, Danni, Important Stuff, M.E., Physical Disability, Real Life

 

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,  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.