Category: Mental Health

Danni

Turning 29

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

https://youtu.be/6JARVfb-FBg

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,  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 £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 😛

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

How Can I Deal With Frustration?

Autism, Danni, M.E., Mental Health, Physical Disability, Real Life

I’m frustrated. Mostly because of illness/disability stuff. And I don’t know how to deal with it. There are various things I’m frustrated about, but I don’t know how to deal with them without making myself more ill (I can explain the basics okay but going into the details is so draining I can’t just ask someone else to help). The frustration isn’t helping.

The kitchen is a pigsty. Again. I tried to investigate cleaners but I’m not up to contacting them and explaining everything that would need to be explained. The carers are limited in what they can do, and it’s back to the point they basically can’t do anything. Johan can’t do it due to executive functioning issues, and can’t ask anyone else to do it (or let me ask someone else to do it if I have a good day) due to anxiety issues. Esther has similar executive functioning issues to Johan and it isn’t fair to expect her to do it all anyway. So I’m stuck. I’m sure nice people would offer to call people for me but it took me 2 years to get a 2 page document to give to the carers written and printed so it’s highly unlikely I’ll be able to provide them with the information they need anytime soon. I want to just go in there and do it myself but that’s impossible from bed.

My bedroom needs tidying. I don’t have enough storage space for everything in here. Now I can ask the carers to help with this, but at the moment when they come I’m either asleep or feeling horrendous, and I don’t feel well enough to cope with the movement/noise until after 10pm. I might need to just suck it up and deal with the payback it’ll cause if they do it while I’m not really well enough as I’m meant to be going to the hospital on the 16th and I’ll need the room for the stretcher. But it takes so much energy dealing with the constant questions about where things go (which I mostly can’t answer because I can’t see if there’s room on the shelves or in the cupboard or anywhere else). Then it takes one day for there to be random stuff on the chair, wipes on the floor, I knock things off the bedside table, random bowls or plates to be left in here, toothpaste not taken back to the bathroom. No one is to blame but I can’t fix it, and I’m not well enough to ask anyone else.

I need to sort getting the sofa, broken wheelchair and boxes of electronics taken by the council. I nearly got the first part of this this done but needed to know how many boxes of stuff there are as they’ll only take what’s listed. Johan said he’d let me know but never did. The second part requires Johan to pay for them to be taken which I’m scared he won’t be able to do when it needs doing. At the moment there’s no way to automatically pay online, and I’d need the council to tell me how much it’ll be because there’s nothing on the price list for boxes of broken electronics and computer parts. With Johan not doing well we’re stuck and it means I can’t buy the daybed and they might refuse to put my hoist in there (and in here if my bedroom is still a mess).

We’ve heard nothing about Johan’s support. The last we got was a letter with a provisional budget and his statement of needs but it’s been silence since then. Neither of us are in a fit state to be chasing it up. The support for him would, in combination with my care being rearranged to work with it, solve most of the problems we’re having, as some of it is to communicate with other people for us. I basically can’t read letters on paper now without massive effort (the words fade in and out and the letters keep switching around – it’s better on a screen with larger text as they stay put more) and made myself stupidly weak just trying to read the DLA form that was meant to be in months ago. I want to fix things but I can’t.

I’m not asking for advice on how to solve the issues I’ve mentioned, just wanted to state some of the things I’m frustrated with. What I am asking is how can I cope with the frustration of things being wrong but not being able to fix them?

Danni

Blogging Against Disablism Day: Internalised Disablism

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

Blogging Against Disablism(This blog post is part of Blogging Against Disablism Day 2014. Is is hosted at http://tinyurl.com/BADday2014)

One of the hardest parts of disablism (or ableism) to deal with is how it invades your thoughts. All those insults and comments that have been said about or to me stick in my brain, and come out when my disabilities affect me. The thoughts that I’m not really disabled, that I’m just lazy or stupid or selfish or putting it on, things that have all been said to me by people aware of my disabilities.

I know logically that being disabled does not make me a bad person. Having impairments and needing help and support has no impact on my worth. Yet years of bullying, often based around my difficulties, mean I find it hard to accept sometimes. This isn’t helped by the current treatment of disabled and vulnerable people in the press, or how a lot of people talk about disabled people.

Recently on the news there was a story of a mother murdering her autistic son and then killing herself. Most of the articles were sympathetic to the mother, and went on about how difficult her son was to deal with. The fact a child was murdered because of who he was didn’t seem to matter. As an autistic person, it scares me, and it feeds into the thoughts that I’m not worth it. He deserved to live, and there is no justification for his murder.

Johan often tells me off for apologising when I ask him to help me. I can’t stop doing it though- years of being told I didn’t deserve it mean I feel guilty when asking for help, even though logically I know that I need it and Johan is quite happy to help me. I even tried to justify the neglect I suffered in the care homes for the same reason. If it had happened to anyone else I’d be outraged and want to do what I could to fix it, but because it was me and because I only deserved bad things because I’m not that ill/putting it on/it’s all in my head I felt guilty for even mentioning it.

Before my ME got bad there was no real external sign I was disabled, though I was odd enough to be called names/beaten up/literally trodden on. I was blamed for my difficulties, often by the people who should have been supporting me. The result was years of depression, and even that came with it’s own disablism. Though I’m no longer depressed, I still have times where I think I’m lesser because of my disabilities. I know I’m not the only disabled person who has this.

All people matter. Everyone should get the help they need, regardless of who they are. If someone can’t do something, that should be accepted and they shouldn’t be treated badly because of it. They also shouldn’t be denied the chance to do what they are capable of. No matter what people think, this is true. Now I just need to convince my brain of this.

Danni

Preparing For An Outing

Autism, Computers, Danni, Gaming, Important Stuff, M.E., Mental Health, My Little Pony: Friendship is Magic, Physical Disability, Real Life, World of Warcraft

Tomorrow morning I’m going out properly for the first time in quite a while. I have a hospital appointment to see my consultant at my GP’s request. It’s not at my local hospital, so it’ll be the furthest I’ve been in well over a year (it’s in Newcastle so not excessively far, luckily). As I’m not currently well enough to sit in my wheelchair at all (unfortunately I’m yet to have a repeat of the good days last month) I’m going by stretcher.

This is a big event, and requires a lot of preparation. I’ve selected a pair of pyjamas that are fancy enough to be worn as day clothes, yet are still comfortable. With them I’ll be wearing my arm warmers, as they’re short sleeved and my arms get cold (and in the event I need a blood test, they’re easy to take off). I’ll also be wearing some warm bed socks in an attempt to stop my feet freezing. I’ll need my tablet in case I lose speech and to communicate with the outside world if I’m up to it, and my phone for internet.

To accommodate my sensitivities, I’ll be taking my sunglasses, eye mask, ear plugs and ear defenders. Since too much light and noise make me much more ill I can’t be too careful there (hospitals are not known for being restful places so I try and avoid going there when possible). I’ve not found a decent way to deal with my sensitivity to smell so I’ll be taking an antiemetic and mints and hoping it isn’t too bad. Spare pads and wipes will come along just in case, and I’ll need my Hydrant to prevent dehydration. I’ve got a couple of blankets to try and deal with my temperature fluctuations, and will have a cushion or two to try and make it as comfortable as possible. I’ll also have my appointment letter, a short explanation of my communication needs/what to do in an emergency, and a list of important things to talk to the doctor about.

In a strange way, I’m looking forward to it. Getting out of bed is so rare for me that even going to the hospital is exciting. There’s a pretty good chance it’s going to make me crash afterwards (I’m currently so touch sensitive that even hugs make me more ill, and movement makes me feel horrendous) but we’re planning for that. I have lots of milkshakes and stuff in as my chewing is dodgy already and the easier ways to consume calories I have, the better. Seeing outside my bedroom will be fun (assuming I’m well enough to wear my sunglasses rather than needing my eyemask- otherwise I’ll just have to listen :P).

Since I last blogged I’ve seen the district nurse, who was the one to recommend getting stretcher transport when we explained my problems with trying to go by wheelchair, the CFS team who have shown Johan how to prevent my legs from unstraightening when I’m not well enough to straighten them myself and were reassuring me about stuff, the dietician who has prescribed some milk based supplements because of my new intolerance to heavy juice drinks (can have squash but not smoothies, proper fruit juice, fruit flavoured milkshakes or fortijuice) and my eating being really poor again, and the social worker who was doing a care review and she’s going to pass on our concerns for us (I’ve not been well enough to email the agency) and contact the doctor about getting the supplements. All those visits have meant I’m not doing as well as I was before them, but I’m not that bad for me.

Johan went to Manchester to see a ballet with Vicky, and my sister Becca came over to look after me, which was good. She’s also here now, originally to go see someone from the get back to work people (she’s in the work related activity group for ESA- they are doing the work related activity) and also just generally helping us out a bit. The break helped Johan a lot and he’s overall been more positive and able to cope. His trial for the raid team in World of Warcraft went well, so he’s now a permanent member and they’ve since got Siegecrafter Blackfuse Heroic down in 25 man, so there’s only two bosses left for them to kill. He’s really enjoying it and it’s good for him to have something to focus on There’s another discipline priest on the raid team that is his main competition, and he’s occasionally been beating him while less geared so that has made him very happy 🙂

I’ve been playing quite a bit of WoW, mostly doing my daily cooldowns, Timeless Isle dailies on Danni and levelling my lowbies. I invited Becca via Recruit a Friend and we’re levelling some characters together- she’s a warrior and I’m a hunter. I don’t know either class so that’s been interesting 🙂 For some reason I’ve not been able to watch television, even easy things like My Little Pony- my brain just can’t process it right now. I watched a little of the figure skating in the Olympics but I was absolutely exhausted afterwards, in a way I don’t get when I’m playing WoW. Danni is weird 😛 I’m so glad I’m still able to get on my computer and play WoW though, as it’s helping me cope with everything, especially since my digestive system really hates me now (recently it’s been taking between 12-36 hours for food to leave my stomach, which I know because I keep bringing it back up and it’s identifiable).

If I don’t blog for a bit then it’ll be because I’m recovering from the hospital appointment. I’m hoping it won’t take too long though as I have so many things I want to blog about as soon as I can 😀