Category: Mental Health

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 😀

Danni

New Year Resolutions for 2014

Autism, Computers, Danni, M.E., Mental Health, Physical Disability, Real Life
Fireworks in London to bring 2014.
Fireworks in London to bring 2014

Another year has passed. I am not at all ready for the start of 2014, but time carries on whether I want it to or not.

2013 was a strange year for me. I felt mostly at a standstill- I guess not really getting out of bed for over a year would do that. I’ve been up and down healthwise, and moving things into my room so I could access them from bed definitely improved my quality of life, even if it did feel a bit like giving in at times.

I’m doing better than I was a few days ago. As is not uncommon for me, I improved as rapidly as I deteriorated, so I’m able to deal with the normal level of lighting in my room again, normal (quiet) sounds, raising my head in bed, and I’m rolling over and eating better (though still not as good as normal). I even got dressed into clothes today 🙂 My speech went weird for a bit, but I think it’s finally back to relative normal (speaking is hard work but I can do it).

So, resolutions. Last year’s were all technology related:

  1. Comment more on blogs.  – I think I’ve done okay on this. Not commented anywhere near as much as I’d like, but I have commented on quite a view blogs I like to read. Unfortunately some of the ones I like have captchas that mean I just can’t comment on them, but I managed it overall.
  2. Sort out my emails.  – My emails are nicely sorted, with filters into different labels (on GMail used in place of folders) for all my different types of email. Not perfect, but it’s an awful lot better than it was. I’ve also managed to stop using my dannimatzk.co.uk email address completely. That’s a success then 🙂
  3. Sort out my Google Reader and Pocket.  – Google Reader died! That was unexpected at the time. I ended up moving to Feedly, and overall it’s working a lot better for me than Google Reader was at the beginning of the year. My Pocket is mostly clear of stuff to read now, and while it’s almost empty I’m thinking of setting up the tags to make it even better for me. Took a long time but I managed this one 🙂
  4. Try and communicate better with my friends. – This one has been a bit more hit and miss. I wasn’t expecting to be so ill for the entire year. I think I did better than 2012 but I want to carry on trying to improve.

Overall I did quite well on them. I’m going into 2014 with my technology more sorted. So now it’s time to decide on new ones for this year 🙂

  1. Have a bath or a shower. I’ve not had a shower for nearly 18 months, and it’s been about 2 years since my last bath. I have a wet room but no suitable shower chair, which they won’t give me until I have a hoist, which they won’t give me until I’ve had the case conference, which I can’t have until I’ve seen the consultant, who I can’t see until I can get transport sorted (but is meant to be happening in February). Yeah, complicated. Anyway, I have a massive build up of dry skin on various parts of my body, and wipes and the occasional bed bath just isn’t cutting it now. I want to be properly clean. I have an entire year to figure out getting a bath or shower, so hopefully it’ll happen 😀
  2. Sort out health book/care plan. This is something I’ve been wanting to do for a couple of years now, but I’ve not actually got around to doing it. Recent issues with my current carer have shown that I really need to have my needs at different times down in writing, as when I’m particularly ill (and Johan is as well) that’s not the best time to be trying to explain stuff. I also want to include an alphabet board for communication when I can’t speak or type. The main issue I can see with this resolution is that I need help with printing, and whenever I ask Johan to print something for me he meows and panics. Luckily I have all year to think of a solution to that (though the sooner the better :P).
  3. Be kind to others. Sometimes when I’m not doing so well I forget that other people can be hurt by what I say or do. I’ve been incredibly touched by how kind people have been to me the last few years, and I want to try and pass that on in any way I can, and try and think of how my actions can affect others. In the event I do hurt someone else (no-one is perfect, least of all me) then I hope I will be able to apologise and try and make things right.
  4. Be kind to myself.  This has been my resolution before (I think for 2011) but it’s one of those that I think I could do with a reminder of. I’m slowly learning that sometimes to be kind to myself I don’t have to do what others want of me, and I shouldn’t be any harder on myself than I am on anyone else. I also don’t have an obligation to keep in touch with people who ultimately make me feel worse (either about my self or generally health-wise) and so I need to work on being more assertive when it comes to that.

I think that will do. Two rather practical resolutions, and two that are going to be harder to quantify but are ultimately more important. I also have some goals for the year that aren’t resolutions, such as getting an iPad with Proloquo2Go, trying to blog at least once every month and getting out of bed again, but one of those is funds related and the others are very much health dependent so I’ll have to wait and see. I’m praying this year will be better healthwise for all my spoonie friends, and as good a year as possible for everyone I know 🙂