Danni

Sunday 2nd March, 2014 Danni

Busy March

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

Although the beginning of the month took me by surprise (yesterday I woke up late after a 16 hour sleep and was convinced it was still February until I got my Brew of the Month club mail in World of Warcraft) it’s shaping up to be quite a busy one for us.

Becca is staying with us next weekend as she’s going to Newcastle Film and Comic Con and we live much closer than she does (she lives in the middle of nowhere with a rubbish bus service and worse internet connection, we’re quite central with decent buses, walking distance from Newcastle if necessary, and awesome internet). I wish I could go with her as it looks to be amazing but will have to experience it second hand. Her staying here should make that easier though 🙂

Vicky has invited Johan to go see the ballet in Leeds the week after, and he’s going to go down a couple of days early to see his parents and friends and so on. Becca has kindly offered to look after me so I don’t have to go into a care home 🙂 After the ballet Vicky is going to come back with Johan so I can see her before she goes gallivanting across the world. It’s been a while since I last saw Vicky in person so it will be awesome. She’s a low energy person so I’m hoping to be able to chat while she’s here 🙂 (Different people require different levels of energy for me to be able to be around them- it’s not a bad thing, or related to how much I like the person, just something I have to take into account when it comes to visits and things.)

The week after that I have the CFS team coming out to see me. It was meant to be to discuss my visit to see my consultant but since that hasn’t happened I’m not sure what we’ll be discussing. They are helpful but exhausting so that is also a big event in my calendar.

I am not doing amazing at the moment. The curtain has been up for a while and today I’m non-verbal again. Moving causes my back to go into spasm so I’m trying to remain very still. Johan has dosed me up on painkillers and an antiemetic to help with the nausea and heated penguins so I’m as comfortable as I can be, which is good.

Yesterday my carer went to Primark for me to get me a penguin onesie. Although I have one, it’s huge (XL men’s) and I wanted one that would fit a bit better. They were reduced and since she was going to be in there anyway she offered to get one for me. I love it and can’t wait to be well enough to try it on 😀

My World of Warcraft playing is good at the moment. Not well enough to do any raids (not even LFR) so I’ve been concentrating on levelling. My blood elf paladin Catalia is now level 73, and my recruit a friend character that I’m levelling with Becca, Caitlyna, has reached level 60. We’ll be going to Outland when we next play together 🙂 It’s interesting trying to teach her- she wasn’t doing well on DPS in dungeons (she was asked about it during one of the runs- once I explained she was new they were fine though) and I discovered it was mostly because she wasn’t using charge (her character is a fury warrior). I’m also trying to teach her not to click the abilities and to use the keyboard instead, but she’s finding it difficult. Unfortunately unlike me she’s unable to touch type which helps a lot for being able to use key bindings without looking, but I’m hoping with practice she’ll be able to manage it at least some of the time. I showed her where the training dummies were in Stormwind and asked her to install a damage meter so she’ll be able to practice 🙂

I’ve been watching a lot of Foster Kitten Cam recently. The Ghostbuster kittens are so cute! It was sad last night though as Peter, one of the kittens, died in Foster Dad John’s hands. It upset me quite a bit even though it’s not uncommon for kittens to not survive. He was so active, constantly trying to escape, and I know he will be missed by a lot of people. His litter mates, Egon and Ray, are also really active and keeping their mamma Janine busy. Earlier today one of them escaped the box and mamma had to carry him back in 😛

I tried to watch some Hearthstone earlier but not quite got the concentration for it. I think I’ll go do some easy levelling or something in World of Warcraft. I’m hoping my body starts behaving better soon but until then I’ll just do what I can to not get worse and distract myself from the worst of the blehness.

Friday 28th February, 2014 Danni

How To Order a Prescription The Easy Way

Autism, Computers, Danni, M.E., Physical Disability, Real Life

See dietician on 22nd January. Due to current inadequate food intake, she prescribes Fortisip food supplements.
Letter arrives at both GP and home a few days later, including details of the prescription. Have no idea how to actually get said prescription, as how to get prescriptions after they’ve been sent to your GP was not part of either Danni’s or Johan’s education.
See the social worker for a care review the next week. Tell her about the not having any idea how to get the prescription issue. Social worker says she’ll contact the GP to sort it.
Get distracted by other issues. Order repeat prescription of painkillers a couple of weeks later. Due to anxiety issues, have to wait a few days for Johan to pick it up from the doctor to take to the chemist. Johan collects painkillers on 18th February. Johan notices that the Fortisips are now on the repeat prescription.
Johan tells Danni that Fortisips are on the repeat prescription the next day. Danni asks Johan to order them. Johan attempts to do so that week but the GP’s opening times have changed and they’re closed when he gets there. Johan panics.
At the weekend Danni tells Johan he can either put the Fortisips prescription in himself or she can ask carer to do it, but it does need doing. Johan states he doesn’t want the carer to do it.
On Monday 24th February Johan calls the GP surgery via Skype to put the prescription in. It would be ready by Wednesday.
Wednesday Johan is busy doing stuff in the flat and is unable to get to the GP surgery before closing time. Decides to pick it up Thursday instead, when less busy.
Wednesday night upstairs neighbour turns electricity off for both ours and ground floor neighbour’s flat, and turns our back on. Johan sees upstairs neighbour running up the stairs straight afterwards. Ground floor neighbour accidentally turns our electricity back off when trying to turn his back on, and Johan speaks to him outside flat. Upstairs neighbour hears conversation, comes down, denies being responsible for the electricity being turned off, and when Johan informs him he saw him threatens to make Johan’s life hell.
Thursday Johan is scared to leave flat due to neighbour’s threats. Johan emails the housing officer about this, and Danni and Johan discuss things that need to be done to ensure safety. Johan not wanting to leave the flat and Danni alone means he cannot go pick up prescription. When carer arrives for evening visit explain everything to her. Carer offers to pick up prescription and put it into the chemist before morning call the next day, as it’s close to where she lives.
On Friday (today), carer collects prescription and puts into chemist. Arranges for Fortisips to be delivered on Monday morning. During morning call tells Danni that she managed to sort prescription and when they’re being delivered. Danni is relieved. When Danni manages to wake Johan up she informs Johan of carer’s success and delivery on Monday.

Getting these Fortisips has been a lot more complicated than we expected. At first we didn’t know how to order them (and we’re still not sure if we get a similar situation, though I’m going to ask the GP next time I see her). We were lucky that the social worker came out not long after receiving the letter from the dietician and that she offered to sort it for us, and that the carer was able to pick up the prescription this morning (though she can make phone calls for me as Johan normally picks my medication up with no/only minor issues picking up prescriptions isn’t on my care plan). Hopefully they’ll arrive on Monday and from then on they’ll just be ordered as I need them along with my painkillers. (I know about online ordering of prescriptions but to complete the online registration you have to go to the surgery to prove who you are- which I can’t do. I’m going to ask my GP about it when I next see her.)

We’ve had ongoing issues with our neighbour but this is the first time he’s directly threatened us, so as I’m very vulnerable (being unable to move or easily contact people) Johan doesn’t want to leave me until things calm down. Things we need to do before we’ll feel safer are find out if the care call system still works if the electricity is switched off (as if Johan isn’t in I can’t switch it back on myself) and also get the care call pendant swapped to one I can actually use (as the current one requires too much pressure to push and for that reason I was unable to use it the last time I needed it).

During the last emergency (when Johan had to go into hospital) I ended up communicating via the internet, and if the power goes there’s a good chance I won’t be able to use it as the router goes off. I do have my iPhone with tethering as a backup, but I’m not always able to use my iPhone (hand spasms and shakes make using such a small touchscreen difficult, and impossible when they’re bad) to switch it on. Thanks to Tablet Talk I can send text messages from my tablet via my Android phone which I can use despite spasms, but as far as I’m aware care call don’t have a text number and when I tried contacting the duty social worker via text when Johan was in hospital I got no response at all. In an absolute emergency I can text 999. Most services expect you to phone them and when you can’t you’re stuck.

In the longer term we are going to look into getting our electricity meter moved into our flat, or if that’s not possible asking the council to put a decent lock on the cupboard door so that the upstairs neighbours can’t touch it. I’m also going to look at battery backup for our router as internet is so important to both of us. I’m trying to find a text phone service via broadband but although there used to be one that I used years ago I can’t find it now- the closest thing I’ve found is TexBox, but their app only works with certain companies (none of which are relevant to me) and I couldn’t find an email address to contact them (only a telephone number and a text phone number- which I can’t use). Text phones themselves are expensive and none I’ve seen are good for using in bed so aren’t the ideal solution. If anyone knows of a way of using text relay via internet (either Android app or via computer) then please let me know. Johan finds Skype easier to use but as I have auditory processing issues and speech issues that’s not a good solution for me unless I’m Skyping someone who can also receive the messages in text.

Sunday 23rd February, 2014Sunday 23rd February, 2014 Danni

Random Thoughts By My Brain

Autism, Danni, M.E., Penguins!, Physical Disability, Real Life

Lying here in bed feeling rather sick, dizzy, boaty and, well, ill, I’m doing quite a bit of thinking about random stuff. This is just a brain dump.

Accessible buildings are good. Accessible attitudes are better. My old pharmacy had a curved step up to the door. Not ideal if you use a wheelchair. They had a ramp available and showed us how to get their attention if we needed it. If we didn’t want it (sometimes Johan would just lift my chair up the step, and it wasn’t designed for a curved step so was scary) they’d hold the door open. They eventually moved to a new premises when the doctors did, with a proper ramp built in. But I knew I could get in because they wanted me to be able to.

The local supermarket was level access. Automatic door. Apparently accessible. But less accessible than the pharmacy because they’d put temporary displays in the way so I couldn’t get down all the aisles. And an attitude of not caring. They didn’t want me to be able to access it, so I stopped going there.

A small independent clothes shop I love. The shop very small, and there wasn’t quite room for my longer than average wheelchair to get around. They acknowledged me every time I went in, offered to move displays so I could get around, and bring things to me if it was out of reach. Agreed it wasn’t ideal, but the attitude made me feel valued. Their bigger shop was easy to get around, but they were just as friendly.

A large chain clothes shop. They have a lift, and level access. And put the clothes displays even closer together than the independent shop did, so I couldn’t see everything. And indifferent staff.

Years ago, getting the college bus was a friend from my course and occasionally there was a girl with learning disabilities who would get the same bus as she lived in the same general area as we did. My friend treated her the same as he does everyone, with mild friendly insults (not related to her disability). She’d laugh at them, as I did with mine. We had fun. He was told off for treating her as an equal. I still don’t understand why.

Events for the general public that ended up being more accommodating of me with my disabilities than events for those with one of them. Feeling valued as a person, and when I became unable to attend any longer asked if there was anything they could do to make it easier for me. Yet the event for people with specific disability being held in noisy, inaccessible pub that made it difficult for those with that disability, never mind any additional ones.

Since becoming visibly disabled (I’ve always been disabled, it was just “invisible” until the ME required me to start using mobility aids) I’ve been learning more about what accessibility is, and not just for those with mobility issues. Before I used to feel like I was the problem, now I want reasonable adjustments to be made, especially since those adjustments can make things easier for the general public as well.

The most patronising person was someone who provided special needs dentistry. As soon as she discovered I was autistic she stopped talking to me as an adult (as she had been up to then) and started talking to me as if I was a naughty child. And spoke to Johan as if he was my parent, not my partner. Neither of us knew how to respond to that, and it was a relief to be referred somewhere else. They treated me as an adult, even when I appeared odd or couldn’t speak.

There are awesome people who go out of their way to help, but in appropriate ways after checking such help is wanted. And other people who try and force unwanted help on me, even when it’s completely inappropriate. And awesome people who are quietly accepting of difference, making me feel like I’m wanted and worthwhile.

Accepting help is hard. I still want to be as independent as I did before ME. Yet accepting help enables me to have a decent quality of life despite severe illness. Sometimes I still push to do things myself and make myself more ill, because I feel like I should be doing it and don’t deserve help. But I’m slowly learning. My worth is not based on what I do, but on my being a person.

I feel extremely lucky and I’m very grateful for what I have. I have amazing friends. I have great family. I have Johan. Thanks to the benefits system, we have enough money to live on, which also means Johan can be my carer full time. I have access to the NHS, which despite all its faults has kept me alive and is part of the reason I have such a good quality of life now. I have health professionals who visit me at home, medications that help a bit with some of my symptoms, incontinence pads that keep my dignity, and an adjustable bed that helps me not get bed sores.

And yes, I do rate my life as good, despite being in constant pain, feeling terribly ill and completely bedbound. ME is an incredibly sucky illness, but I can do things, even if they’re only small things like roll over in bed or communicate. Deciding to stop fighting being ill and learning to live with it was one of my better decisions. It doesn’t mean I don’t want to get better and I’m hopeful I’ll improve in the future, but my body is trying to keep me alive through everything and if I work with it I think I’ll give it the best chance to keep going and hopefully start working better.

And there are penguins. Everything is better with penguins.

Monday 17th February, 2014 Danni

Bedrooms and WoW and Stuff

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

A small bedroom with a single bed in the corner with purple bedding, a clothes rail with hanging shelves, and boxes with items in. There is clear floor space in the middle.

I’m now nocturnal, thanks to sleeping most of the day on Thursday when I was meant to be going to the hospital. I’m not concerned about this, as otherwise I’m not doing too bad for me (so long as I don’t move, I’m not touched, and I don’t eat) and I figure it’ll sort itself out in its own time.

For Valentine’s Day I kicked Johan out so that Becca and I could sort out his bedroom. He went to see The Lego Movie (he really enjoyed it and said it was very good). Becca brought all the boxes in Johan’s room into mine so I could work out where things go, and after a lot of work (mostly by Becca) we got it sorted. When she’d finished, she made the bed, put Patricia (the penguin) and Charlie (the Jedi monkey) on top and took a photo so I could see.

Johan was very happy with this, and we decided that on Saturday he’d replace the single bed with the double bed I used to use, as there was now room to do that. He also moved the remaining boxes into the cupboard, dismantled the clothes rail, moved in the spare computer desk, and a spare kitchen cupboard we happened to have for his clothes (until we get him a chest of drawers). He’s now wanting to put his posters up (we can’t paint until I’m less sensitive to smells or able to disappear for a few days) so it feels more like his space. Since he’d been sleeping in what was effectively a storage room for two years, I’m hoping he enjoys having a proper room (and having the double bed- he’s yet to tell me which is more comfortable though).

The same small bedroom, mostly filled with a double bed with purple bedding. There is a computer desk in the corner, with a computer chair in front of it. There is very little space between the two.

This means our flat is getting closer to being sorted. Now the living room is the main room that needs working on, but that shouldn’t be as difficult as Johan’s was. We have a lot of boxes to sort through and I need to get some bookcases for all my books. The plan is to get a daybed frame and use that with the (now spare) single mattress to replace the sofa, so that if we do have someone staying over they’ve got somewhere to sleep, and maybe I’ll be able to lie down in the living room when I’m doing better. This is mostly because we don’t otherwise have room for all three beds (my hospital bed, the double bed in Johan’s room and the single bed) and that mattress is really comfortable so I don’t want to get rid of it 😛 Our sofa is rarely used as such anyway (Johan spends all his time in his computer chair, and I’ll be in my wheelchair if I go through there) so having a daybed is a better idea. We’ll also be able to use bedding and cushions to make it purple 🙂

Becca went home yesterday (Sunday). I think she enjoyed her stay here, even though it included a lot of hard work. It was nice for us as well- having someone else to talk to and just be with for a few days was good, and she has a pretty good understanding of my needs so I didn’t have to worry about offending her or upsetting her if I needed some time alone. We have determined that she doesn’t want to do personal care as a job, but she’s able to provide mine okay so it meant Johan got a bit of a break, even while he was here.

Since I’m not doing too bad, I’ve been playing probably too much World of Warcraft. In the last day I’ve got my Pandaren Monk Dannila to level 90, and my first Battle Pet to level 25. After I wake up I’m going to be doing some recruit a friend levelling with Becca, which will be fun. We’re currently level 56 and I’m hoping we’ll reach level 60 so we can get flying (I’m supplying the gold, as my gold making is ticking over even though I’ve barely worked on it recently). Now I’ve got my first max level battle pet I’m finding it much easier overall, so it shouldn’t be too long before I have several of them. I’ve got a list of goals for World of Warcraft so I have some idea what to work on, especially as different things require different amounts of brain power/concentration (I’m not well enough to raid at the moment but pet battles and levelling are fine).

I still can’t watch My Little Pony, which is frustrating. Not sure why exactly but I just can’t seem to understand what’s going on. This is especially confuzzling as I’m able to play World of Warcraft okay. The same thing applied to trying to watch the Winter Olympics- I had no idea what was happening, though the figure skating I saw was pretty. I’m managing to read okay (even if I can’t remember it afterwards) so I’m going to guess it’s a problem with auditory processing being particularly bad at the moment. That’ll also fit with me struggling to understand Johan when he’s talking to me. I need to get the subtitles on for Ponies but that requires brain power and mine is limited 😛

I’m happy. Johan has been cheerful recently as well. I’ve done some productive things (cancelled Netflix and Unblock US as we’re not using them right now- we’ll resubscribe when we want them) and I’ve got a plan for other things that need doing so I can sort them when I’m next able to. Even though I might need to wait until June to see my consultant (that’s when my next appointment is- I’m hoping for a cancellation) I feel like I can get things sorted and moving forward now. I still have some problems (my body does not like me eating- doing so causes bloating, nausea and pain no matter what I’m having) and I can’t get out of bed yet, but they will get better.

Thursday 13th February, 2014 Danni

No Go

Danni, M.E., Physical Disability, Real Life, World of Warcraft

So, I didn’t get to go to my hospital appointment today. At about 7am we got a phonecall from the ambulance service saying that one of the ambulance people who was meant to be taking me to hospital was ill, and asked if I could travel by wheelchair instead. After Johan explained that wouldn’t be possible, they said they’d try and find someone else. My appointment time (8.30am) came and went, and about 9ish we got a phone call saying that they’d tried to get someone, but they wouldn’t have been able to get me there until at least 10am and having spoken to the clinic that would have been too late for them. So the appointment was cancelled and I went back to sleep.

They have said that I’ve been put on the cancellations list (next cancelled appointment I get) and they’re going to get me an afternoon appointment next time, so there’s more of a chance I’ll actually get there. So far since last year I’ve had 5 appointments at hospital, and only made it to one of them, which was last February (so over a year ago now). One of them we rearranged as they made it too early in the morning (until recently the ambulance service didn’t start until 9am, but that’s changed now), but the other three I’ve not been able to get to because of problems with the ambulance transport. The reason I was able to get to the appointment last February was because I was doing better than I am now so didn’t need a stretcher, and it was at the local hospital where Johan taking me up on the bus is less stressful than travelling in the ambulance (hospital is 5 minutes up the road).

It is frustrating. The preparation yesterday took hours, and I didn’t get enough sleep last night because of the appointment, and then it didn’t happen again. We’re lucky that Becca was able to help, as otherwise it would have taken even longer. If I were less ill I’d be able to travel by wheelchair, though there’s no guarantee the ambulance would be able to transport me in it (two of the cancellations were because they couldn’t transport me in my wheelchair, before the last relapse made me worse). If I was well enough to go without a wheelchair I wouldn’t have needed the appointment. Being ill is complicated.

Becca is staying for a couple more days I think (we’ve not but a time on it yet). Tomorrow we’re kicking Johan out so we can work on sorting his bedroom out (he gets panicky if he’s here when we’re doing it, and panicky if he tries to do it). It’s mostly done by Becca bringing the boxes into my room, I work out where the contents go, and Becca puts them where they belong. We did a bit today and there’s now a bit more room in there, and tomorrow we hope to get a decent amount done. Having her here is good 🙂 We’re trying to teach her about Nerdfighteria. She’s also playing a lot of World of Warcraft (I’ve been playing some today- my Monk is now level 88 :D).

I’m hoping it won’t be too long until my next appointment to see my consultant. I really need to see him so the case conference can happen and I can get a hoist and shower chair. Until then I guess I’ll lie here and keep going on 🙂