Jul 302017
 

An incomplete and out of order summary of what’s been going on the last few months.

  • I had a shower! It was awesome. It still takes way too much out of me to be able to have one regularly.
  • I went out to vote in the General Election. I like our Labour MP so I voted for him. He retained his seat (as expected as this is a very safe Labour seat).
  • I had a birthday. Turned 31. Spoke to Sammie online and played with a light up balloon. Sammie made me an awesome animation and picture 🙂 Johan got me a skirt and a penguin book. I had lots of cards and also cake a few days later. I also had other presents which were much appreciated.
  • I spent a lot of time resting. More than I’d normally do.
  • Asked the district nurse to come out. Changed Derma S to Cavilon (Derma S was causing an itchy rash, which is what it’s meant to treat) and also asked about a different mattress as pain kept waking me up and I needed to roll over, which is difficult and exhausting. Got an alternating air mattress the next day. It makes a massive difference and now I can sleep for up to two hours before waking, compared to 45-60 minutes beforehand. I also don’t need to roll over as much.
  • The reason for the resting – I went to see Sammie’s school play. Until I got the new mattress I wasn’t sure I’d be able to make it, but sleeping better and all the rest paid off and I managed to see it. Sammie had no idea I was there (she knew Johan was going) and her reaction when she saw me afterwards made it all worth it. The play itself was excellent and I got to meet a couple of her teachers. It was the first school event I’ve been able to attend so it was very special.
  • Got a taxi to and from the school. Same driver both times (he stayed on shift late to bring me home). The journey went as well as it could, but when getting out near home my wheelchair went sideways off the ramp. Luckily the driver had a really good hold on my chair and it went down slowly enough that all I got was a slightly grazed hand. Johan and the driver picked me back up and I was fine. I’m not so sure about the driver though. He refused to let us pay even though it was an accident.
  • Johan has gone to Sweden again. I’m in the same care home as last year. Johan pushed me this time rather than getting the bus as I wasn’t really well enough to travel (and the movement of the bus would have been too much) but has told me he’s not pushing me back. I got pretty much straight into bed and haven’t left it. I go home next Thursday.
  • Unfortunately being in the care home hasn’t gone as well as last year. As I can’t use a buzzer (they make a horrendous noise and can make me nonverbal) I’m meant to be checked on hourly. This hasn’t always happened so I’ve ended up with a soaking bed multiple times. The worst was Tuesday night where no-one came in from about 10.30pm (when I got my medication) until after 3am when I asked someone on Twitter to phone for me. I also ended up having a meltdown on Monday as I got overwhelmed by everything. Some of the staff are really good though. I’m going to make a complaint when Johan gets back and see how they respond before deciding whether to ask to change care homes for respite.
  • I’m really struggling with asking for things I need. Being in a care home makes this worse. I wish I could do everything myself.
  • I bought a Go Pro during the Amazon Prime Day sale. Johan is planning to use it for his runs. I’ve also insisted he goes to Edinburgh Zoo on the way home from Sweden and film the penguins for me.
  • I also bought a wifi plug socket for my bedroom in the sale. Being able to control my lights  using my tablet is so awesome I ended up getting a second one (they only let you buy one in the sale for some reason). It also means Johan can control my lights if needed.
  • I’m now struggling to manage Twitter as well as Facebook, and am struggling with games I normally find easy. I think it might be because of being in the care home. Hopefully it’ll get better once I’m home.
  • I’ve had a couple of visits while here. One brought a crochet penguin his wife made for me. They’ve really helped me cope 🙂
  • I’m hoping I’ll eventually be able to write blog posts that aren’t just bullet point brain dumps. I like writing them but my brain is being silly.
  • Penguins are still awesome. The penguin cam stopped working for a bit but Johan is at the zoo on Monday so I’m hoping to see them then.
 Posted by at 12:26 am
Apr 102017
 

Bullet Point update cos easier:

  • I got my PIP award. Standard care, no mobility. I apparently only need aids and adaptations (not carers), as I can type on my tablet. I have no communication difficulties despite being non-verbal during the assessment. I can somehow walk more than 50 metres (but less than 200) despite not being able to sit upright or stand, due to being able to lift my legs from the bed once while lying down. We asked for a reconsideration, they said it was right. We’re going to go to tribunal but I’m not sure when that’ll be. I’m not surprised, and I’m glad I get enough that Johan still can get carers allowance in the meantime (as getting nothing would have messed everything up due to the way our finances work), but it’s a bit ridiculous really. The report was full of lies, and they’ve still not told me how I’m meant to walk without standing as I really want to know so I can get out of bed by myself!
  • New care agency has been sorted, and started. It’s so much better than the old one. It’s weird having two carer workers on an evening, but unless it’s a task requiring two people (basically hoisting) normally one does stuff in another room while the other does my personal care. Other than asking for one particular care worker not to come unless it’s an emergency (she’s not bad, just not really suited to me), I’ve been getting on with everyone fine, and I have a pair who are probably my favourites that I see several times a week. I also get rotas which makes things much easier, and the lunchtime call means Johan worries about me less when at his day service. It’s already saved him having to come home at least once 😛
  • We got the new day bed! Only problem is it’s a bit low down so need to find the elephant feet for it (I have some in the flat somewhere, just not sure where). I’ve been in the living room a few times, but not as frequently as I’d like for various reasons.
  • We had a power cut. I managed to report it online (I have backup internet through my phone for these occasions). My normal bed wasn’t flat but the hoists are battery powered and the new day bed is, so Johan took me into the living room when we were told it was going to be a few hours to fix it. I ended up spending the night in there.
  • Power cut told us our burglar alarm (which we don’t know how to use) is broken. When the power came back on it kept going off and it wouldn’t accept the code (the only bit of information we have about the alarm). Housing repair person came out and fixed it, then said we need to ask for a new battery. Due to the lack of people turning up to fit a new battery, I think Johan has forgotten to ask for it.
  • I survived the noise due to new earphones I bought. They’re Bose QC20s and the noise cancelling is amazing. For most noises it’s better even than the earplug/ear defender combo, and I can put ear defenders on top. Definitely not cheap at all, but considering how noise sensitive I am, definitely worth the price.
  • I’ve been out once so far this year, at the end of February. I tried to find a suitable hat, failed, but did find a visor. Bought that instead, then had dinner with Johan. Was nice, though noisy. Hoping to repeat it at some point.
  • No showers yet. Felt up to it a couple of times, but Johan wasn’t available. I’m really hoping it’ll be soon.
  • Two hair washes so far. One at the beginning of February, one last week. Had to explain to new care worker that I don’t need anti dandruff shampoo, the dry skin is just because I don’t get it washed or brushed very often.
  • Upstairs neighbours are no longer there. The circumstances were very much not good, but I’m grateful that I don’t have to listen to the arguing, music and noise anymore. They seem to be clearing the flat out today.
  • Brain is still refusing to work properly. Making silly mistakes when trying to do online shopping, and needing Johan to help me with online forms. It’s very frustrating as I used to be good at that stuff.
  • My body is still evil. I sleep a lot. I need a lot of cyclizine. Nothing much has changed there.

Games stuff separate as only I’m interested:

  • When I can get on puter, I’m playing WoW still. Loving the patch 7.2 stuff, though annoyed I miss invasions, buildings being up and stuff. Finally ran my first heroic this morning, and only only one other person died (I missed a mechanic that one shot me due to not having done the dungeon before). Maybe I’ll get those quests I’ve had for months done at some point.
  • I’ve stopped playing a lot of my mobile games as wasn’t enjoying them as much. Picked up a few replacements. Mostly playing 1010!, Fishdom, Godville, I Love Hue and Neko Atsume. Godville is the best as it’s a zero player game so I don’t need to do anything if I don’t want to (though I can do stuff to try and influence my heroine if I want). Also playing Word Cookies but Johan is so much better than me, and it overheats my tablet so it turns off.
  • I played a bit of Stardew Valley on puter, but put it on hold again until I’m caught up a bit with WoW stuff. It’s fun but I had to use a mod to make fishing much easier as it was impossible before.
  • I miss playing any first person games. I really hope they stop making me dizzy soon.
 Posted by at 10:00 am

Goals for 2017

 Autism, Danni, M.E., Physical Disability, Real Life  Comments Off on Goals for 2017
Jan 182017
 

I’ve decided not to set new year’s resolutions, as my health means that I’ll struggle to keep them and it might not be my fault. What I’ve decided to do instead is make a list of goals for the year, and hopefully achieve some 🙂

  • Have a shower at least once every 2 months. That would be 6 showers this year. Last year I managed 2 in 5 months (how long I had my shower chair) so will require me to work on being well enough. I’ll continue having bed baths in between and hopefully might get a bath when I go into respite (baths are amazing but our wet room isn’t big enough for one).
  • Use the toilet/commode. Around the time I became doubly incontinent, I also had to stop using the normal commode I had as I kept fainting while using it and Johan got fed up of picking me up off the floor. My current shower chair doubles as a commode and tilts, so hopefully that won’t be a problem this time. Getting me on it at the right time is going to be the big challenge, as I don’t get much notice. Even better if I can manage to use an actual toilet, but that’s possibly too optimistic.
  • Go out with Sammie somewhere. I managed this last year and would love to do it again. Preferably somewhere a bit more interesting and less wet. As I’m restricted in how far I can travel, and can’t predict how my health is going to be in advance (though resting for a week beforehand helps it doesn’t guarantee I’ll be able to get out of bed) it’ll require a lot of thought. I’m determined to do it though if Sammie wants to.
  • Create and keep to a rough daily routine. This will have to be adaptable (what I can do when in payback is very different to what I can manage on my best days) but we should have the care agency issues sorted soon (have direct payments ready to go once we’ve found an agency that can take me on) and it’ll help reduce my anxiety a lot if I know at least some of what I’m going to be doing each day. It won’t have set times (my sleep is far too erratic for that) but more guides for what to do soon after waking/once my brain switches on/after meals and such.
  • Read at least 20 books. I bought a Kindle Voyage yesterday as my Paperwhite has been missing for months and I promised myself I’d get it if I read 50 books in 2015, which I managed. The number might be lower than the last two years but that’s so I’m more inclined to read longer books. I’m not buying new books until I’ve read some of the ones I’ve already paid for unless they are personally recommended to me, but since I have nearly 1000 unread books available on my Kindle (mostly free, but a decent chunk paid) I don’t think I’ll be short of reading material for a bit. If I’m doing well with this I will increase it later in the year.
  • Sort out my clothes. They’re a mess. My drawers are full and I have piles of clothes otherwise. Many had been buried for a long time in the cupboard and were only rediscovered when Johan got the old dryer out of there. I’m going to sort through them and reduce them to what I need now (so anything uncomfortable goes) so I know what I have and what I don’t. I’m also hoping to photograph what I’m keeping so I’ll be able to pick clothes easier as I can’t remember what I have.
  • Sort out our letters. I used to have a great system for organising letters, involving an in-tray (for new ones), an expandable folder for important ones, and a box for older ones. Then I got ill, we moved to our new flat, and Johan is not organised at all. I’m hoping to implement a system I can remind Johan about so once I’ve sorted it it doesn’t get bad again.
  • Spend more time in the living room. My ultimate goal is to go in there every day I’m not in payback, and spend at least some time on the daybed. I’ve worked out the daybed we currently own isn’t suitable (I want to use an overbed table with it and there’s no gap underneath) so I’m probably going to give that one away and buy a more suitable one. The fun bit will be getting it built, but once that’s done I’ll only need to be well enough to go through there.
  • Sort out computer stuff. There is a list of computer stuff I want to sort out. Most of it is small jobs that only take short amount of time each, but together it’s quite a big job. Included in that is updating the blogroll on here 🙂
  • Go out with Johan somewhere that isn’t shopping or for a meal. Now I have my hoist and on good days can go out, I want to go somewhere with Johan. Up to now most of my trips have been shopping or meals, but I’d like to expand on that. At the moment my best times are evenings/night (I’m typing this in the middle of the night) which does complicate things, but sometimes I’m able to go out in an afternoon and I want to take advantage of that. Ultimately I’d like to manage being on a bus or taxi long enough to travel further, but until then Johan is able to push me into Gateshead and I can cope with short Metro journeys so I’m not completely stuck.
  • Create a guide to looking after me. A friend has given me a copy of their version, and I already adapted some of it for a personal information sheet that was useful when I went into hospital. I previously failed at creating a health book but with an example it’ll be much easier. I also found a leaflet on how to use my toothbrush which will also help with that.

That’s plenty of things to be getting on with. Some are bigger than others, but I can work on them slowly throughout the year. Much of my payback at the moment is due to panicking about care agency problems (I don’t know who is coming on a weekend so by the time they arrive I’m too anxious to be touched, so even if they’re nice I can’t have anything done) and the times aren’t right so getting that sorted will be a big help. Johan is doing most of that though, I’m just reminding him of what needs doing. We’re in contact with one potential agency at the moment and will be looking into others if they can’t do it, so hopefully it won’t be too long until that’s sorted. I’m also hoping to get someone to help me organise stuff and do little jobs like put proper curtains up and similar.

I’m getting over the dental surgery last week. My right side (wisdom tooth removal) is now pain free, and the left hand side (back molar removed) it’s just the jaw that’s painful if I accidentally lean on it (while sleeping) or forget and try and chew on that side. Ibuprofen is keeping the pain under control though so I doubt it’s anything serious. I’m still needing a lot of sleep and rest, but have managed several hours on my computer this evening and if I keep going at this rate, I might be able to get into my wheelchair at the weekend 🙂

 Posted by at 11:05 pm
Jan 112017
 

Yesterday I went into hospital to have my teeth sorted under a general anaesthetic. Considering I have severe ME, it went about as well as it could have.

The ambulance with the stretcher was late, but we were expecting that and I was second on the list because we knew I’d not be getting in for 8am (I probably would have been first otherwise). The journey was horrible but I listened to music to help cope with the noise (along with wearing my earplugs and ear defenders) and used Google maps to see how long it would be. Got there and was put in a side room which was good.

Not too much later we went through what was going to happen, consent and stuff. Johan filled in the forms and signed for me (I gave verbal consent for him to do everything) and they took my blood pressure and heart rate. Blood pressure was normal (higher than my normal but I was anxious) but my heart rate was bouncing around, but only between 99 and 120ish bpm so not too bad for me. When I say my heart is doing funky dances, that’s part of what I mean. Once I told them that was normal for me they accepted it.

I’d made up a personal information sheet that was two sides of A4, that we laminated as we could only find A3 lamination sheets and I was also making a communication board so put them in the same sheet 😛 I based it off a friend’s version and I think it really helped them understand me. It explained my normal difficulties, medication, what to do if certain things happened (if I go nonverbal, if I have a panic attack, etc.) and what not to do, especially sitting me up (which is normal procedure). It’s generic enough that it’ll be useful as a normal emergency sheet, and will just need updating if anything changes.

After that stuff we had a little wait, then got told off for my chocolate consumption (I think keeping my weight up is more important, and the acid reflux is probably more damaging in the long run). Johan struggled to get compression socks on me (I ended up doing one and hurt my hands, he managed the second after being shown how) and I had a gown put over my pyjamas and it was off to theatre. I took Po with me as I knew having a penguin there when I woke up would help. I also wore my sunglasses as it was really bright.

In theatre it was the usual confirmation of who I was, and then I was asked if the signature on the consent forms was mine. When I said no the guy jumped backwards and some of the other staff laughed. Then he confirmed that it was Johan’s signature and that we both knew what was happening, the risks and stuff. Next everyone but the anaesthetists left and one of them started looking for a vein in my hand. Because I had already hurt my hands earlier, the tapping on the back of my hand was absolute agony. I think it hurt more than the canulla being inserted and that’s bad enough. Fluids and meds were given, then they gave me some oxygen, then they told me they were putting me to sleep and injected a stinging liquid. Not too much later I was asleep.

Waking up I was very groggy. I remember feeling Po under my hand which helped with my anxiety, then being very shivery and then had warmed blankets put on me. That felt really nice as I became aware of it. Johan came in, and I asked for my eye mask because it was too bright with just my sunglasses. He was talking to me but I can’t really remember anything of it. They removed two teeth and filled 4 more, mostly at the back. I’m down to two wisdom teeth now.

Got wheeled back to the side room (the movement was horrendous) and the light was turned off which helped. Was still very fuzzy and I think I drifted off to sleep a few times. Was asked about pain, said my face was okay (it hurt but not too much) but my body was really bad. Was told I could have my normal tramadol and a drink and that helped. After a bit more time I was able to swap to my sunglasses and talk to Johan a bit. Asked about my teeth pain again and it was okay, so they called for the ambulance and they turned up.

The journey home was not exactly fun. They kept the main lights off in the back of the ambulance, and I listened to music with my ear plugs and defenders on. I also watched the map so I could tell how long it would be before we got home, which helped as I don’t like not knowing what is going on. When it said 1 minute from home I started feeling really nauseous, but was able to cope knowing it wouldn’t be long.

Ambulance guys got me back into my room, and Johan hoisted me back into bed (the hoist sling had stayed under me the entire time, which isn’t too bad if I’m not sitting on it). One of the ambulance guys asked us to let them know when I next need them so they can take the day off (the path and ramp from the road to our flat is very steep- everyone who has to push me up it complains) then they left. Johan gave me some more water and some jelly which helped me be a bit less hungry and thirsty, then some cyclizine a little later as the nausea wasn’t improving.

I spent the rest of the day on my tablet as so long as I didn’t move, I didn’t feel too bad. The worst pain was in the hand the canulla had been in, which I took as a good sign. It also seems my contact allergy to adhesives has improved, as the sticker around the canulla was fine (unlike last time where it was a horrible itchy rash). The ECG pads were still a bit red and itchy but not too bad.

I woke up a few times during the night, and my main problem was thirst as I was too tired to call Johan and as I’m not allowed to suck I didn’t have my hydrant (or can be used without sucking but we were worried I’d forget if tired, and I really want to avoid dry socket if possible). I was able to ask Johan eventually for some water (plus electrolyte tablet as the salts are good). He gave me my meds and once they kicked in my pain levels were back to Danni normal, which is still really bad pain but bearable.

Ended up sleeping again for a bit, then woke up as the carer came in and got annoyed that she put the washing machine on as it was too noisy. (To be fair to her, if the doors are closed it usually doesn’t disturb me too much, and she hadn’t been told not to put it on). Put my ear defenders and sunglasses on (my eye mask has ear muffs but they don’t block as much noise as my ear defenders) and that helped. I didn’t feel up to having any personal care done and wasn’t allowed to have my teeth brushed yet, so just said a few words and I’ll see her this evening.

We had our new dryer delivered this morning, after the guy who came out to do the repair due to the big fire risk thing said it would still be a fire risk after. As I wasn’t feeling too bad once I’d woken up a bit and stuff I told Johan he could test it, and though it’s pretty noisy for the first couple of minutes it then goes really quiet (to the point where the wind was disturbing me more). As I can put ear plugs in and ear defenders on we’ll be able to use it so long as I’m not in payback or relapse. It has a wetness sensor and seems to work faster than our old one, so I’m looking forward to soft warm towels and pyjamas again.

Other than a bit more tired I’m not too bad right now. Have been eating jelly, soup and milkybar desserts, and finally tried out my new cup which is designed for use lying down, has two handles and needs less tilting. I can manage it myself if I’m passed it so I’m really happy with it. Once I’m over the worst of this recovery I think I’ll be using it for hot drinks as I don’t really like using a straw for them. Until then it’ll be sugar free juice with electrolyte tablets.

I read that tomorrow will be the worst day as that’s when the swelling kicks in, and is also when my payback tends to start. I’m hoping it’s not too bad, but need to ask Johan to get some ice packs in the freezer in preparation. I’m also getting rather tired now so might nap again.

 Posted by at 4:06 pm

Happy New Year!

 Autism, Danni, M.E., Penguins!, Physical Disability, Real Life  Comments Off on Happy New Year!
Jan 062017
 

Happy New Year!

I hope everyone had a good winter holiday season, and that this year will be good to you. I had a lovely time just before Christmas and on Christmas Day, but overdid it a bit and so it’s taken me a couple of weeks to recover. Annoying but nothing I’m not used to.

It’s been a busy time the last month or so. I managed to go out again a few days after my last post, going to Nando’s and then Tesco (couldn’t really go into Newcastle as the Metro was off), and lots of WoW for a bit. I did most of my Christmas shopping on Black Friday and then got payback from that so rested lots.

Tuesday 6th December I managed to go to Enchanted Parks with Sammie (and Johan and Sammie’s grandparents). The event itself wasn’t very good this year (based on Shakespeare, but there was less to do and see than last year and it was hard enough for the adults to understand) but being able to go out with Sammie made it worth it, even though it was chucking it down with rain. It was the first time I’d been able to do that in years, but next time maybe I’ll find somewhere a bit better (and less wet).

The next morning was attempt number 1 at going to the hospital for the dental surgery pre-assessment. We got there, and they couldn’t see me because I was on a stretcher (the previous week Johan spent a long time on the phone trying to tell them I was going to be coming on a stretcher, but kept getting passed around until finally arriving at a dead end). Attempt number 2 was meant to be the day after, but just before I was due to be picked up the lift on the ambulance broke (it’s kinda needed to get the stretcher in and out.

Friday morning was my PIP assessment. I was having payback from going out that week, and was non-verbal. The assessor tried to say she couldn’t assess someone who can’t speak (it’s a benefit for those who are long term disabled. And I have an appointee.) but she spoke to her supervisor and I dunno what they said but it was able to happen. Johan answered the majority of the questions for me, and I typed when I had something to add. By the end of it it was obvious to Johan I was struggling (kept hitting the wrong buttons on my text to speech app so it was saying things randomly) but I’m not sure if the assessor picked up on it. At least she seemed to understand that trying to get me to sit up was a bad idea, and I think she might have got an idea of how much help I needed by the end of it? The decision hasn’t been made yet so I just need to wait.

A week later the council came and cut down my tree 🙁 I am still sad about that, as the last few years I’ve been watching the birds out my window and seeing how the leaves change, and now I won’t be able to do that. On the 15th we had attempt number 3 at pre-assessment appointment, and though it was meant to be around 11.30am and ended up being nearer 2pm (they were in surgery longer than expected) it ended up being successful. I’m getting my teeth sorted under a general anaesthetic on the 10th of January, and I warned them about the things that I needed them to know (don’t sit me up, don’t give me paracetamol, being non-verbal isn’t anything to worry about).

Sammie came over to get her Christmas and birthday presents on the 22nd, which made me very happy. I love speaking to her. It feels weird being the mother of a 13 year old now. I also spoke to her on Christmas Day for a few hours via video chat and she showed me some of her presents. I am slightly jealous of her VR headset 😛 Our neighbour insisted on making us Christmas dinner (even though Johan tried to tell her he was cooking for us) so we ended up having one from her on Christmas day. It was nommy, even after reheating (I was asleep when it was made). Johan made ours on Boxing day (Sammie’s birthday) and that was also nommy reheated. Johan wins on potatoes though 😛 I wasn’t well enough to talk to Sammie that day but I did email her and she liked the email 🙂

For Christmas I got several penguins and penguin items (yay penguins!), a couple of new looms for loom knitting, chocolates, a handmade photo frame (from Sammie, with a photo of us two from when she was a toddler) and some smaller items. I also got so many cards that my 20 card holder wasn’t big enough so we had to find other places to put them. With that and two Christmas dinners I was very spoilt. I managed to watch the CBeebies version of the Nutcracker (which I really enjoyed even though I’m not the target audience), then the Christmas church service on telly. It was a good day even if I did end up sleeping a lot of it.

After Christmas I crashed a bit. I spent a lot of time sleeping, and when I was awake I was feeling rather rotten and out of it. New Year’s Eve Johan gave me a wash, and we had a cuddle while watching the fireworks as 2017 came in. I paid for that afterwards but it was worth it. Today is the first day I’ve been feeling well enough to do anything productive, though even this morning I was non-verbal. On Sunday our dryer will finally be made safe to use again after about a year (it was one of the ones affected by the fault that can cause lint to end up inside it and go on fire. We don’t want a fire). With having a general anaesthetic on Tuesday we’re expecting that I’ll need a lot of rest so are planning to keep things quiet for a bit afterwards. I’m hoping the payback won’t be too bad and that I don’t end up relapsing. We’ll see though.

TL/DR: I saw Sammie (twice!), there was Christmas and I spent most the time asleep or poorly 😛

 Posted by at 10:54 pm
Nov 122016
 

Physically I have got better. Cognitively I have got worse. This is not unexpected but very annoying. I am struggling to understand even simple things like my bank account and emails.

Because of this, Johan is now my Appointee when it comes to the DWP. This means he’s responsible for contacting them, filling in forms, and my money now goes into his account (which he then sends to mine because the bills come out of it, but when we’re able he’s going to be added to my account so he can manage it as well). We were worried that they’d say I didn’t need an appointee but instead they asked why it had taken so long. It was very hard for me to admit that I needed that help, and as soon as I’m consistently well enough to manage it Johan is going to hand control back to me.

Johan had his PIP renewal. We were a bit scared as it was only a 6 page “has anything changed” form and then we didn’t hear anything for weeks, but it’s been renewed again at the same rates so we don’t need to worry for now. My DLA to PIP transfer is in progress- we’ve now got the form that Johan needs to fill in. He says it’ll be easier than filling in his own, and he even managed the phone call to initiate it okay. We’re going for our usual tactic of sending tons of supporting evidence (mostly my care plans, where it says they’ll find me in bed both calls) and hope it goes smoothly.

As I’ve been doing better physically I have been out of bed a bit. I’ve been in the living room and to Newcastle (I went to the yarn shop! I bought yarn!). I saw Snow Dogs and they are awesome. I also went to the local park for the fireworks display and it was good, though people kept climbing over me while we were in the queue for food (we think they didn’t realise how long the chair was so thought there was a gap when there wasn’t). I wore my penguin onesie and was nice and warm. I’m definitely glad I managed to go, and hope to go next year. We’re planning on putting lights on my chair and skipping the food queues though 🙂

I have a shower chair now so I’ve had two showers! Showers take a lot out of me and the chair isn’t quite supportive or padded enough but person from CFS team has suggested using towels to make it better and we’re going to try that. I am so glad that it’s here now though. The main thing stopping me using it is not being awake and well enough at the same time Johan is available to shower me.

Last week we finally got my new hoist slings with head support. I’ve tried them and they make it so much easier and mean my head no longer flops backwards and my neck doesn’t get sore! We’re not sure if one will fit in my normal going out changing bag, but if not I’ll just get a bigger one.

I saw mental health team. They can’t help me because I’m not at high enough risk. Blegh. I’m both glad that I’m not that ill mentally, and frustrated that they couldn’t help even with suggestions. Last night fireworks going off made me really out of it, but I was also able to describe what was going on to Johan (he was with me at the time). I think it’s the first time I’ve been able to do that, explain what’s going on in my brain while it’s happening, but I don’t know how to stop it and I was exhausted afterwards and slept all night then all day. That was not in the plan.

I went to the local hospital for a smear test and coil change. Was funny the first time I went as they didn’t know I’d be in a stretcher, most of the information they had was wrong, and they didn’t know where to put me. They figured it out though (they had a second waiting room that had a curtained off bit- they put me there with a guard nurse at the door) and the doctor took my smear. I went back a few weeks later for the smear to be repeated as the first one didn’t have enough cells, and this time the doctor changed my coil as well as he didn’t want me having to go back there again. The second time they had two rooms ready for me- one in case I could stay on the stretcher like the first time, and since I couldn’t (the ambulance guys needed it for other people) they kicked a doctor out of his office so I could go on the only bed in the department that lies flat. It wasn’t exactly fun, but the coil change went about as well as it could have and I was in less pain than the day before, so I appreciate that. My second smear came back normal so I don’t need to worry for 3 years now, and 5 years for the coil. I’ve been a bit crampy and moody since but hopefully that’ll calm down in the next few weeks.

I have a hospital appointment at the beginning of December about my dental surgery. It’s going to be at a further away hospital, which will be the furthest I’ve travelled in over 4 years. Hopefully it won’t take too much longer after that to have my broken teeth removed- one of them has had a temporary filling in for over a year.

I’ve been playing a lot of World of Warcraft since Legion came out. I’ve done all the current quest lines, got all three artifacts for my Priest, and am concentrating on levelling my Discipline one. I’m okay doing most World Quests, LFR and normal dungeons. I’m too scared to try heroic or mythic dungeons yet, though since I have a 853 item level I am geared enough. Part of the problem is that I don’t really know how to heal with the new Disc system- in LFR it doesn’t matter too much if I’m not sure what I’m doing as there are other healers, but in a dungeon I’m the only one. I’m considering learning Holy for it, but I think I need my brain to work better first. WoW is a lot of fun though, and I’m glad I’m able to spend a decent amount of time in it (mostly at night while Johan is asleep).

The biggest problem my cognitive issues is causing is I can’t initiate conversation now. I can know what I need to say and who I need to say it to, but without a prompt I just can’t do it, and I don’t know how to explain that. Replying to someone is easier but still really difficult, especially if I don’t know the person that well. I’m also muddling up or forgetting words and stuff much more these days, which if nothing else gives Johan something to laugh at (as he hears most of them). It’s so frustrating needing to do something but not actually being able to do it, even though I technically know how.

Johan is now very busy. He’s in Newcastle 3-4 times a week now, and he’s taken up running so does the 5k park runs most Saturday mornings, and goes to the gym when he can to do more running. If I’m asleep at the wrong times, I sometimes don’t see him for more than a few minutes while he sorts me out in between stuff and sleeping. Both the exercise and being out regularly is helping him a lot, and what he’s doing now might lead to a career in the future. I struggle quite a bit if I’m awake while he’s out, but it’s mostly feeling vulnerable- if something happens, I can’t do anything about it. It also means my pads leak more which isn’t fun. We’ve asked our social worker to change the call times so I’m not left alone for quite as long (the morning call moved to lunchtime so Johan can sort me out before he leaves then the carer can sort me out a few hours later) and also for the evening call to be made much later so I don’t need to cancel it whenever I’m able to go out. He’s put the request in but I don’t know how long it’ll take.

The agency finally stopped trying to send the bad carer in October. It took my social worker putting it in the contract not to send her before they’d stop. I’ve had several carers say they’d happily do those calls if asked, so it’s not that no-one wants to deal with me, but they kept insisting she was the only person available. I’ve still not heard anything about my official complaint (that I put in during July) so once everything else has calmed down we’ve got that to chase up. It’s the usual problems we’re having with the care agency now- most of the carers are lovely and do their best, but there’s a complete lack of organisation and communication, and I still don’t get rotas so get panicky every weekend as I don’t know who’s coming.

At some point I need to see my GP as my antiemetic has started causing tachycardia and palpitations, which stops me sleeping and is very uncomfortable. I can reduce my heart rate manually for a bit (by holding my breath and tensing my muscles- I discovered it myself years ago when I thought I was panicking but was actually having POTS attacks, and it turns out it’s an actual treatment) but it eventually goes back up and the palpitations stay. I’ve been on it for several years without problem so I’m really annoyed this has started now, as it was the third one I tried and I really like not vomiting. Hopefully we can fit it in around Johan being out all the time.

I’ve now written a blog post that’s too long for me to read. That’s probably a sign I should publish it. Hopefully there aren’t any massive mistakes in it.

 Posted by at 7:12 am
Aug 262016
 

It’s been a busy couple of months. I currently have an actual social worker, and he sorted out a care home (which went well) and is helping to try and sort out the care agency problems I’m having. They’re still sending that particular care worker that I can’t cope with, so I’m now panicking a lot and not having stuff I need doing done. My main care workers have complained, I put in an official complaint (which I’ve heard nothing about) and my social worker has complained, but they keep sending her. I’m not sure what to do as I’m spending all my energy on panicking instead of useful or fun stuff.

Johan went to Sweden and he had a very good time. I went into the care home I requested (as the previous one couldn’t take me due to renovation work) and though there were a few communication issues overall it went about as well as it could. I even managed two baths which was amazing! I managed to make a pair of slipper socks while in there, watched the ESA Marathon that Johan was in Sweden for, and went to a open day for the floor upstairs from where I was staying and stole two helium balloons. I also slept a lot and had to reassure the staff that was normal.

Since then I managed to go out for my sister’s birthday, which was the same day as our 6th wedding anniversary. We went for a meal in Newcastle which was nice. I had Chinese starters and a couple of desserts as I was too slow and full for a main 🙂 It’s the first family event I’ve managed to make in a long time so I’m really happy I was able to go out for it.

I bought a Haribo cake for our anniversary, which we started yesterday. It is rather yummy and doesn’t have icing on that Johan doesn’t like, but does have sweets on top. Haribo Starmix are Johan’s favourite sweets at the moment, so it works well for both of us. 

Since I got home from the care home I’ve seen my social worker again, and have got dates for changing my coil and seeing the community mental health team. For the CMHT I got a bit worried when they said it was in a clinic, as I wasn’t sure I could manage talking for an hour and a half at the same time as sitting up (both use energy and mine is limited). Luckily they phoned Johan and told us that it was going to be at home so I don’t need to worry about not fainting in my chair, just on being able to manage an assessment for 90 minutes. I’m hoping they have some ideas on how to cope with stuff that affects me but I have no control over, because panicking and having meltdowns (they’re different) are both extremely exhausting even when you don’t have a chronic illness. 

The best thing that’s happened this month is seeing Sammie today 🙂 She came over to bring me presents from her holiday and chatting to her is amazing, as is being able to cuddle her in real life. I’m so proud of how she’s doing so well. Johan worries about her, especially when she stays up past her bedtime. It’s quite funny how he’ll keep reminding us what time it is. She’s still growing and is visibly taller than Johan now. I don’t think it’ll be too much longer before she’s taller than me.

I enjoyed watching the Olympics when it was on. I mostly saw some of the artistic gymnastics as I wasn’t well enough to watch all I wanted to see, and I was really impressed by Simone Biles and how she flies through the air. I’m looking forward to the Paralympics and hoping to watch a lot of that. Just need to have the energy to manage it.

When I get on my computer I’m mostly playing World of Warcraft. I’ve pre-ordered the Collector’s Edition of Legion, and if I’m going to be awake and well enough for launch I’ll get the digital version so I can play immediately, but if I’m not I’ll wait until the box arrives. I’ve been enjoying doing the prelaunch invasions and quests, and hopefully I’ll figure out how to DPS heal as a discipline priest before I get too far in. Johan has been levelling loads of characters through invasions and he’s not sure which one will be his main, or his first to level 110.

On my tablet I’m mostly playing Minesweeper. It’s slower and a bit harder than on PC as you don’t have separate buttons for flagging and uncovering, but I’ve managed to get under 200 seconds on expert which makes me happy. I’m still playing most of my other mobile games but only in bits and pieces. I’m also reading a lot of Reddit when I’m not feeling up to much, as it doesn’t matter if I lose track of what I’m doing. I hope to get back to reading books when things calm down. I’m still happy though, and have many plans that I’m working on 🙂

 Posted by at 10:40 pm
Jul 092016
 

I somehow can’t quite believe that I’m now 30 years old. As my life basically went into standby 5 years ago, I don’t feel much older than I did then.

Had an up and down month. Body misbehaving. Another period (I think there were 2 weeks between them). Neighbours fighting at night. Care agency problems. Meltdowns. Hypersomnia. Talking to awesome people online. Watching lots of penguins. Finally watching Star Trek: Into Darkness (a present Becca got me yonks ago). Overall I’m doing okay, but I still wish I could be doing better.

My birthday was really awesome. The best present I got was Sammie coming over for a visit! That couple of hours talking to Sammie in person has kept me going through all the bad bits. She’s so amazing and I’m incredibly proud of her. She also gave me light up penguins and a holographic penguin card that I’ll have to put up somewhere more permanently. I also got a Fluttershy soft toy, a colour changing egg light, a massive Candy Chaos box (that was from Johan- he knows how to make me happy)  and so many really awesome cards and good wishes. It was really an amazing day and I feel so lucky to have so many people care about me.

Another thing I got really excited about was the Post Pals party. I never thought I could get so excited about a party I wasn’t going to 😛 Post Pals is one of my favourite charities and it was awesome seeing all the planning and then the photos and videos of the Pals enjoying themselves. I’m not able to send letters or gifts very often (writing letters/emails and choosing gifts are often too much for me) but I am able to bug other people to do so.

Saw the district nurses. Told them my pads are leaking, but as I’m already on the highest absorbency they can prescribe they’re not sure what to do. The same day they came out I got a new delivery and it turns out the company has changed them to be even worse. I’m now buying my own more absorbent ones to use while Johan’s at his day service and at night in an attempt to not need to change the bedding every day.

Was meant to see the community mental health team about coping with meltdowns since I can’t use my normal coping mechanisms (movement/loud music) but they couldn’t find a psychologist to come out so they didn’t come. I’m not sure what’s going on there now.

Saw CFS team. Told them have been up and down and other stuff, including that I still don’t have the right hoist slings or a shower seat yet. They’re going to try and chase things again and I’m to keep doing what I’m doing until I start improving.

Have been watching loads of penguins. The chicks are getting so big now! There’s even been a couple of rockhopper intruders recently (kings are visible lots but I’ve only seen rockhoppers a couple of times).

I’ve started loom knitting. It’s like loom bands but with yarn 🙂 I’ve made a hat so far and I’m working on a matching scarf. The acrylic that came in the set I bought is quite scratchy, but I’ve read it’ll get softer in the wash so I’m hopeful that’s the case. I’m very slow at it and I have to take lots of breaks, but I’m so glad to have found a craft my hands don’t complain too much about.

I’ve also started on Duolingo. Concentrating mostly on French, but also learning German and Swedish for fun. Some of the phrases it gets me to say are interesting: two that are memorable are “Nous avons vingt enfants!” – We have 20 children in French, and “Ich bin eine banane” – I am a banana in German. Since “I am a banana” is one of the phrases I repeat when my brain is being silly and I’m trying to say something else. It’s almost as if it knew 🙂 I’m doing okay at the reading and speaking, but my spelling (especially in German) and listening is terrible. The app can be a bit fussy on the speaking as well- I’ll say something three times the exact same way, but it’ll only accept it the last time. It’s fun and hopefully I’ll get back to being able to read in French and maybe know enough German and Swedish to be able to identify it.

There’s 11 days until Johan goes to Edinburgh, the day before going to Sweden. We don’t have a care home sorted yet as apparently my respite provision ran out in June and they didn’t tell us until after the date, despite us giving them plenty of notice. Johan is getting help from the day service so hopefully we’ll get it sorted soon. He’s definitely going though, so they need to sort something out as I can’t manage alone.

The care agency keeps sending a carer we’ve asked them not to send multiple times now. She hurts me when touching me and needs so much guidance for making food that the only thing I can have done is my teeth brushed, which is a waste of an hour call. One of my main carers has told the agency not to send her multiple times, and I had one of the supervisors come out and she also told them I didn’t want to have her, but she is still coming. It’s in my care plan that the carers will make phone calls on my behalf as I can’t do it. I also still don’t have a rota or my evening calls at the right time. I think we’re going to have to put in an official complaint as my wishes are being completely ignored and they’re making me more ill. Not sure how I’m going to do it but it’s not the first time they’ve done this.

Next week will be mostly sorting everything that needs to be sorted for Johan going to Sweden, and me resting lots so I’m able to get to whatever care home it ends up being. There’s also a church service I want to go to next week but that very much depends on my health. I managed to go vote in the EU referendum, but other than that I’ve not been out since May. (The leave result really scares me, as the EU has given us at least a small amount of protection against the Tory government. I think it’s only going to get worse from here but there’s nothing I can do about it so I’m trying not to worry.) Hopefully my body will calm down and I’ll be able to get out of bed and do more soon 🙂

 Posted by at 10:23 pm

Life Is Better With Penguins

 Autism, Danni, M.E., Penguins!, Physical Disability, Real Life  Comments Off on Life Is Better With Penguins
Jun 032016
 

The following blog post may not make any sense.

For some reason the Edinburgh Zoo Penguin Cam doesn’t work directly with Chromecast, which meant I had to ask Johan to stream the tab when I wanted to watch and wasn’t well enough to go on my computer. I got a bit fed up with that, and decided that I wanted an Android TV stick so I could watch when I wanted. After some investigation, the Amazon Fire TV Stick seemed the best (especially as it was £5 cheaper than normal) so I bought that. I’ve added some of my own apps and it not only works for penguins, but I prefer the Twitch app as well (displays the chat on the telly) and I can sideload basically any Android app I want on there. I’m glad I bought it.

I’m just coming out of a bad patch. I was confused by it at the beginning, as I’d been doing okay and then I couldn’t get into the living room and couldn’t even have hugs as I was too ill. I was also experiencing more abdominal pain than is normal even for me. The explanation arrived on Tuesday- my period had arrived. I’m not sure how long it had been since my last one, but I didn’t cope with it very well. Luckily I seem to be nearly done with it, so I’m hoping to go back to how I was at the beginning of May again.

I’m slowly replacing some of the stuff I use daily and is becoming raggedy because of this. This week it’s been my penguin pet cushion (used to support my arm in bed and my head in my wheelchair). I’d forgotten how big and fluffy they are when new. I’ll be keeping the old one as a spare, as they’re the exact right size and shape for me (and folding them works great for supporting my head) but it’s nice to have a new clean one. The other advantage of having two is I can have one in the wash while using the other one.

Poseidon also demanded a new body as his feathers were scraggly. The super soft fluffy fleece most of my penguins and cushions are made of is great, but when they spend all their time in bed with me they’re less soft and fluffy after a while. Since I was ordering the Fire TV on Prime Now and they sold the exact baby emperor penguin body that Po has, he got lucky and I was able to get him one (penguin magic was involved). He’s now big and fluffy and is very happy.

I managed to fix my tablet! I don’t know why the camera wasn’t working in Marshmallow, but I did a factory reset and reinstalled everything and now it all works. I’m so happy as it means I can now use video chat again and take selfies when I want to.

I’m a bit scared now there’s just over 2 weeks until my 30th birthday. I’ve got no idea what I want to do for it, though if I’m well enough to go out that would be amazing. Johan keeps asking what I want for a present and I don’t know that either. My life is very different to what I thought it would be, but I’m hopeful my 30s will be better than my 20s. I hope I’ll stop being mistaken for a teenager then as well 🙂

I’ve been reading the Young Wizards series by Diane Duane recently. I’m currently partway through A Wizard of Mars. I’ve got the New Millennium editions on ebook, which I’m glad about as in A Wizard Alone there’s an autistic character that was portrayed really badly in the original book, but in the new edition it’s actually really good and he chooses to remain autistic when given the option of changing himself. I’d read a couple of books in the series years ago in the library, but it’s really good to be able to read them all in order. Dairine is probably my favourite character, and displays many autistic traits herself (though these aren’t identified as such in the series). The world has been a great one to escape into and I’m trying not to go too quickly as I think I’m going to be annoyed when I run out of books.

Feeling really bleh and drained now, so I think more rest is needed. Until I’m doing better, I think it’s time for more penguins. Penguins make everything better.

 Posted by at 5:10 am
May 022016
 

This is a post for Blogging Against Disablism Day 2016. Please visit the website to see the other posts. It’s a day late as it’s my second attempt at a post (thanks brain fog).

These are things I want to see. It is not exhaustive.

I want to see more people like me in fiction, as normal characters. Disabled, different, maybe chronically ill, but that being only part of what the character is about.

I want to see more progress in making things accessible for more disabled people. More ramps, lifts, alternative formats for information. More changing places toilets (toilets with a hoist, adult changing bench, plenty of room for a wheelchair and carers and other facilities for severely disabled people). Less blocking access, displays making it impossible to pass in a wheelchair, less unnecessary noise and strobe lights.

I want to see disabled people accepted for who they are. Not used as inspiration porn or pitied. Disability is a normal part of life so should be treated as such.

I want less overt and covert discrimination against disabled people. Less refusal to make reasonable adjustments. Less making disabled people jump through hoops non-disabled people don’t have to do.

I want to see more access information provided on websites, and the websites themselves to be accessible. I want that information to be easy to find, not requiring looking through layers of menus to discover.

I want people to see disability equipment to be seen for what they are, tools that enable people to do what they want easier (or at all). Wheelchairs and scooters are awesome and allow so many people to do more than they otherwise could.

I want people to be valued for who they are, not what they’re able to do. We all deserve a full, peaceful, dignified life, making our own choices as much as able.

I want variable disabilities to be understood better. Just because someone can do something at one time, that doesn’t mean they can do it the next time, or in different circumstances, or more than once.

I want the harassment of disabled people to end, especially by governments and the media. I want benefits to be easier and quicker to claim, without the presumption that we’re all frauds. We’re not to blame for the financial crisis.

I want to see disabled people living where they want, with the help they need to do so. I want to see hospitals only used when absolutely required and for the shortest period that’s needed. I want carers to receive the help they need to care for their loved ones if they want to.

I want people to be seen as individuals. We all have our own life experiences, likes, dislikes and thoughts. We’re not just a collection of diagnoses.

I want to see a nicer, more equal world. I believe it’s possible.

 Posted by at 1:20 am