Category: Autism

Danni

Ah Bah La La Bah

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

The title is what I’m able to say without massive amounts of concentration. My brain is a bit fuzzy so English is a tad hard 😛

Physically I am doing good today. I’ve been practising my sitting up and haven’t passed out or gotten silly dizzy or anything like that. My pain levels are bearable with medication (I’m trying to take just one tramadol again at the moment). I can transfer to the commode without falling off, which had been rather difficult the last few days. Yay 🙂

I’m very dozy and fuzzy and tired, but I was awake about 28 hours before getting to sleep around midnight/half past midnight. I woke up sometime after 10am so I’ve slept, just need a bit more to catch up with the bit I missed. Staying awake all night and all day happens sometimes so I don’t worry about it, I just try to get plenty of rest when I can sleep again.

Lovely carer is leaving the care agency :'( She is a good friend now so I will still see her, but it means I’m going to have a different main carer. I hope whoever it is is nice and can understand us. I am planning a party for lovely carer on Friday as it’s her last day and we’re her last call 🙂

Vicky was here until yesterday, and it was nice her being here. We spent Sunday night talking until silly o’clock in the morning as we lost track of time 🙂 We used to do that a lot and so it was good.

Johan is currently on my bed next to me, giving me the occasional squish and making me feel safe and happy. It is nice, even if my spoken English is a bit disappeared.

I am sending Johan to the cricket on Sunday. We are now about 25 minutes from Durham Cricket Club, so we have been intending to go since we moved. I’m not well enough yet, but Johan is going to see Durham beat Lancashire (I did put playing against but Johan made me fix it). It is Twenty20 so it’s very fast and only lasts 3 hours. I will see if a sibling can sit with me for it, but if not I should manage if everything is sorted beforehand. I could always try sleeping 😛

I am wanting to go to Leeds. It probably won’t happen this week, but I’m going to build up to it. New wheelchair means it’s just as easy as travelling to South Shields (at least until we reach Leeds train station) and I want to try my mum-in-law’s cooking (I’m not sure if she knows this yet so we should probably tell her :P). Johan’s family are really nice and I feel very at home with them. I think if I plan it well we should manage it okay 🙂

—

I have looked up the travelling to Leeds and if money is okay I should be able to manage it, with travelling with my wheelchair reclined (the Transpennine Express trains have wheelchair users in a separate bit- normally I dislike the segregation but it does mean there’s plenty of space) and a hotel right next to the station. We probably won’t do anything other than see Johan’s family while there, and I can rest lots so it will be good.

As my brain is being silly I’m not really keeping up with Twitter or Facebook, but that is okay. We are thinking of taking another week of respite in August so Johan can go see his friends at this open house thing. My social worker has found a care home so Johan just needs to check it’s suitable. We were originally going to stick with the same one as last time but the travel there is harder for me than travelling to Leeds so not the best idea ever.

Otherwise I’m just playing Bejewelled and Draw Something every so often, reading and immediately forgetting blog posts, and having lots of cuddles in bed. I like being able to have cuddles 🙂 I’m definitely improving, even if only a little bit.

Danni

Noise is Bad

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

The last couple of days we have had workmen in to sort out our new bathroom. It’s mostly done- the shower has been moved, as has the sink so there’s now more room in there and it will mean it’s easier for a carer to wash me. The toilet has also been moved back, but not quite far enough as when I tried to sit on it, I flopped so far back I nearly fell off and Johan had to rescue me. There’s just the floor to do we think. The new pump is noisy, but nowhere near as loud as the old one and I can cope with it fine with my door shut, and should manage in the shower okay with ear plugs, so that will be good. Johan can cope with it okay without anything 🙂

Johan has contacted the OT about the toilet, and also about the shower seat I’ll need (the closer to horizontal the better) and about a full assessment for things that will help me. I don’t mind buying the stuff I need if necessary (I’ve already bought loads that apparently could have been provided for me) but it would be helpful to know what would help.

I tried the no rinse shampoo. It’s brilliant for in between full washes, and makes my hair a lot cleaner than normal dry shampoo. I also bought some bath in bed wipes which are awesome- they contain moisturiser and one wipe does my entire body, so the pack of 8 for 99p is really good value. Much easier for my carer as well 🙂

I’d had to buy a new shampoo basin as my old one broke (the tube to drain it fell off) and went for the deluxe version instead of the cheapest one like last time. It’s well worth the extra £5 (£19 instead of £14, excluding VAT as I don’t pay it). It has an inbuilt cushion that I can rest my head on so I don’t have to hold it up myself, making it much easier. It feels a lot more robust and my carer said it was easier to wash my hair in it. All good for when I’m bedbound and until I get my shower seat 🙂

I’ve been doing really badly during the day- lots of pain, nausea, fatigue, brain fog, muscle spasms and such, but when night time comes I’m doing much better and can even watch stuff on Netflix. This is a problem as Johan needs to sleep at night, and really I do as well but I want to use my better time.

The workmen being in has been horrible, though I’ve just about coped using a combination of ear plugs, ear defenders and music. The hardest bits were when Johan was out (as I couldn’t block the workmen out completely in case they needed something) and when I had to concentrate on what someone was saying.

The new cleaner came Wednesday lunchtime, but as the workmen were here she couldn’t do anything. She’ll be back next week, as Wednesday will be our regular day. As she’ll be coming 2 hours a week hopefully I can look forward to a nice clean flat 🙂

In the meantime, the untidiness of my bedroom is really getting me down. Since I rarely leave it, and I’m unable to do any tidying myself (if I tried not only would Johan yell at me but I’d make myself really ill) I’m relying on other people, and Johan doesn’t seem to get how much it’s depressing me. He has promised that when lovely carer comes in the morning he’ll do some tidying in here with him. I hope he keeps to that. I know how I want my room to be and it will make it easier for Johan as well as make it more bearable for me.

I got my communication cards and my Media Mount for my Trabasack. The communication cards are awesome- just the right size, and on a keyring so I’ll be able to attach them to my Trabasack. I’m thinking of getting one of those stretchy keyrings to attach it with. The Media Mount uses velcro to stick to the surface of my Trabasack. I’ve only been using it to hold my tablet in place up to now, but it can be used in lots of different ways. I bought one but somehow ended up with two- going to try putting one on top of the other to see how that works 😛

I’m still hoping to get to the prom next week. I’m not well enough right now, but I’m going to rest and rest and rest and see if I can get there. I’ve just ordered a tiara as I really want to wear one, but the estimated delivery date is saying it might arrive afterwards. Not good 🙁 I need Johan to go into the college and sort out my locker, so he can buy the prom tickets at the same time. I thought I had no money left but it turns out I’m doing better than I thought I was- must have doubled up on a bill or something.

Johan picked up our clothes from Asda Wednesday evening. It turns out they’d been delivered to the store on the 6th June (estimated date 8th June) but apart from a note that one item was out of stock, they forgot to send us a text message or email to say they were ready for pick up. I was really brave and phoned up to ask what was happening. The guy on the phone had to ask me to repeat a few things as some of the sentences I was coming out with didn’t make any sense, and I had to ask him to repeat things a few times as I couldn’t hear properly, but I got there in the end. I even arranged a refund for the delivery cost of my trousers as they were supposed to be next day delivery but took three days. Using the phone is slowly getting easier, but it’s still not reliable.

I got a purple tropical sundress, a white long sleeve top (to wear under other tops/dresses when it’s a bit cooler), a pink skirt, and a 2 set bikini. It’s been years since I last had a bikini but I want to try hydrotherapy at some point and my swimming costume will be massive on me now. I’ve also discovered I’m a size 12 now, though I’ve bought a few items in a size 14 they shouldn’t be too loose hopefully.

I also bought Johan two pairs of black jeans, a black t-shirt and some socks as he needs them. Apparently the black jeans are his favourite type, as they feel really soft. That should be good for him 🙂

I’m finally accepting that I’m probably not going improve a lot any time soon. I’ve been mostly bedbound for nearly a year now, having pushed my way through college but damaging my health to do it. I’ve been unable to walk for about 18 months. I’ve reached the point now where I’ve stopped deteriorating, instead I’m bouncing up and down the severe end of the functioning scale.

Even at my best I can’t sit up unsupported for more than a minute or two, can’t hold a pen or cutlery, can’t answer questions for more than a few minutes (thanks, autism), can’t dress myself independently, can’t crawl or self propel my wheelchair, can’t wash myself. I often need to be fed as I can’t manage it myself. If I can get in my wheelchair at all I need it tilted and slightly reclined to be able to manage it. Johan has to help me with most transfers. I lose speech often. I struggle to follow conversations even in text, which is normally my strongest method.

At my worst I have to lie completely flat in a dark, silent room, with no interaction with anyone, and struggle to even roll over, or chew and swallow food. Pain is unbearable and even the smallest thing can be too much. Luckily I’ve only had two relapses that have been that bad, with the one in April not being as bad as the one in December.

I have things I like doing. I like reading Twitter, as I can dip in and out whenever I can and the short tweets are easy to follow. I like reading blog posts- it doesn’t matter if I understand them or not. I wish I could comment more on the blogs I read but that is often too difficult. I play Draw Something and Bejeweled Blitz with/against my friends. I listen to My Little Pony: Friendship is Magic music. I cuddle Penguin and Katie. I stim using my dummies (sucking, smelling, rubbing on my face, fiddling between my fingers). I chat to Johan or lovely carer. When I can I like going into the living room and watching television or playing World of Warcraft. I go out in my wheelchair.

Accepting that I’m probably going to be at this level for a while means I can adapt. I’m asking the OT for more equipment to help me manage. I can try and make goals that I can accomplish at this level. I can look into activities that I can do now, rather than ones that require me to have better control over my hands. I can try and stop overdoing it with things that don’t matter (Johan is trying to help with this).

The interaction between M.E. and autism makes life interesting. Not being able to have short bursts of activity with rests in between as I struggle with transitions, instead I have longer periods of activity with longer rests, which isn’t as good but works better for me. Not being able to hold things properly, I hook stuff around my hand or finger instead, or use my arms to hold things. Accepting that I just “phase out” of conversations and that everyone who talks to me is either aware of this or has it explained to them when it happens. Laughing about stuff. Celebrating everything I can do. Taking joy out of small things like colour changing light and penguins. I’m still happy.

Edit: Realised this blog post didn’t have a name. That is wrong so I’ve fixed 😛

Danni

Whee!

Autism, Computers, Danni, M.E., Physical Disability, Real Life
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Danni in New Wheelchair

I won that wheelchair last week for £95 including postage. It arrived Monday morning. It is a tilt in space and reclining self propel wheelchair, and it is much better for me than the old one. I am too tall for it really, but we use a pillow on the headrest and I don’t mind my legs sticking out a bit so it is fine. Went to the local shop and other than really needing a hat as the sun was so bright even with sunglasses (as I was tilted back a bit it was more in my eyes than it otherwise would have been) it went really well. I won’t be able to have it fully reclined when travelling on public transport as it makes it really long, but I can have it tilted and a little bit reclined on there which will help a lot. As I’m tilted I also don’t need the harness to hold me up with it 🙂

New care agency is still working really well. My main carer (Johan is calling her Lovely Carer) is absolutely brilliant. She does have a tendency to stay over time, but it feels almost like having a friend over than a carer (though she does help me with my personal care and any tasks we need her to do). She was off on Friday as she had a funeral to go to and it was her weekend off, so we got three other carers then (that is apparently too many and is unusual- I still think 4 in one week is much better than 15…). All three of them were really nice and lovely and talked to me like a human being, rather than being patronising. I did miss a couple of times as my sleeping pattern threw itself out (one night of insomnia where I didn’t get to sleep until 7am) but the carer then (the manager) was just worried that it was because it was someone I didn’t know. When I did meet her in the evening she was really nice and we were able to tell her how happy we are with things 🙂

Sunday night we did both have a bit of a meltdown due to another new carer coming when Johan was meant to be raiding. Was silly in the end as the raid didn’t happen and the carer was lovely, it was just I didn’t want to have to deal with a completely new person by myself. That was one of the problems with the old agency- there were constantly new carers that I didn’t know so neither of us were comfortable with it. As the new agency thinks 4 carers in a week is too many I know things are going to be better. This week we’re only seeing Lovely Carer as she comes both morning and evening and is working this week. She seemed rather excited about that (she seems to like coming here as much as we like her coming 🙂 ).

Meggy and Martin (my youngest siblings) came to visit last Tuesday, and also cleaned most of the kitchen and living room for us, which was very nice of them. Meggy has said she wants to come back this week to finish it off. This is not a problem with us. She’s very good at it 🙂 Johan was terrified to begin with as he felt really guilty but he was okay after she got here and when she actually did it.

To also help, we finally have the council cleaners almost sorted! We’ll be having a cleaner in 2 hours a week to do the main cleaning jobs, and they should be starting next week some time. We’re just waiting for them to tell us when it’ll be. This is a paid service, but at £10.41 an hour it will be well worth it for Johan to stop worrying and for me to be able to have the place clean how I want it. I can pretend it’s because we’re really posh and stuff (my DLA covers it as it’s because of my disability I can’t do it myself). Lovely carer can also do smaller jobs inbetween (washing a few dishes, putting a load of washing in) so between the two services it will work well.

Last week I also sent an email in the middle of the night about the neighbours upstairs while they were making a massive amount of noise fighting. Johan was terrified lying on my bed next to me, but I got angry instead for once, so sent the email. The local estate officer is coming out on Wednesday to discuss this. We’re not exactly wanting to complain, we just want to do what’s necessary to make it stop (though that might require a complaint). We have a simple way of judging if it’s just oversensitivity or actual loud noise- if I can still hear it with my ear defenders on, it’s very loud (and the stuff we can’t tolerate is arguments, stomping, throwing things and slamming doors, rather than normal chatting, television watching or listening to music, though we don’t like the drilling at midnight either).

I’m still doing pretty well. Been on my computer (in new chair!) and though I didn’t play World of Warcraft I did get a message sent in the Ayme forums, which took about 2 hours for me to write because it is very hard work for me. I don’t know why because writing to people on forums used to be easy. I also went on Facebook for a bit.

On Thursday I hope to go into Grainger Market in Newcastle to get some nice food. There is a lovely bakery in there called French Oven and the bread and macarons are gorgeous. They are doing special flavours for the Jubilee so I have ordered two of each flavour for us of the macarons (16 in total) and two high tea boxes. As I have my new chair I am hoping to go there myself but if not Johan will go for me. I am looking forward to it 🙂

I have been enjoying the nice weather but my body has been responding oddly to it. For a while I needed lots of anti nausea tablets which is not like me and my body couldn’t decide whether it was hot or cold or both, but I have finally adapted. I think it was the change in weather. I have been watching the birds outside my window with it open, and it has been lovely. Luckily my window is shaded by lots of trees so it doesn’t get too hot in my room.

I hope things keep going well. I am liking my new chair giving me more freedom to go out 🙂

Danni

Escaped!

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

Today I escaped both my bed and the flat and went outside 😀 It seems that now I’m finally over the cold that was causing me to relapse, I’m not too far off where I was in April before it. Still resting lots and taking it pretty easy, but this is good 🙂

Last night Johan washed my hair, and then I got dressed for my doctors appointment this morning (it may sound a bit odd, but it was a t-shirt and leggings and it’s because I need at least a few hours to rest after getting dressed). I’d slept a few hours yesterday evening (about 5pm-10pm, after waking up at 1pm) and so didn’t get to sleep until about 4.30am, then woke from a nightmare at 5.36am (I looked at my watch) :(. Managed to get back to sleep and was in a weird but not as scary dream when I woke up with the alarm at 7am. (The dream had something to do with having the wrong router and it was showing up on the telly where an episode of the Simpsons was playing- weird but not massively scary :P).

I gave Johan cuddles to convince him to get out of bed, then we got ready and left and actually arrived early! Johan’s appointment was 8.30am and mine was 8.40am, as when Johan made them he didn’t think I’d be well enough to go (I was being stubborn though :P). Saw the doctor who was the nice one Johan saw the first time, who apparently is rarely there. She is brilliant- wanted lots of details to help Johan (he’s being referred back to the psychiatrist to help stop him getting so depressed again, as she doesn’t feel primary care has enough knowledge on how to deal with his particular type of depression), then I said hello (she asked if it was that type of appointment when I told her I’d not been well enough to go to the last appointment either), asked for some more tramadol as I’d been taking loads during the relapse, and for some lactulose to help prevent me getting as badly constipated again, which she was happy to do. We also discussed my M.E. care (she’s impressed that I get home visits- as am I) and how my consultant had been asking GPs for the numbers of M.E. patients a few years ago as he was wanting extra funding.

She also mentioned that she feels that GPs react badly to M.E and other illnesses that they can’t cure especially when there’s no-one more specialist they can refer to, but since they have my consultant in this area they feel better able to deal with it. She also said that’s probably why some doctors deny it exists, because they’d rather it didn’t exist than accept there was nothing they could do for it (even referring on to a consultant). That actually makes some sense, so I’m very grateful that I live in this area. I explained what the CFS clinic actually do and where they’re based (information she didn’t have) and then we talked a little bit about my oversensitivity to medication (Johan mentioned it first for the lactulose as I didn’t know dosages as only had it in hospital before, then I explained there’d been some research into it regarding autistic people and things which she was interested in).

I can see why Johan came home not anxious last time- she’s very friendly and professional at the same time, is confident in what she knows and also in what she doesn’t know, and wants to do the best she can for us. She’s also put in a referral for Johan to get a social worker to help him with his autism related issues, as mine can’t do much for that.

Afterwards we went to the chemist to pick up my prescription, then went into Gateshead as it was nearby, we needed some toothpaste (and a drink to take a painkiller with as we’d forgotten to give me one before I went out- whoops) and I wanted to go into a shop! Went into Wilkinsons, I looked at makeup for the prom (and decided I best go back with my sister Meggy who is doing my hair and makeup to pick what I need, as mine has gone walkabouts), picked up the toothpaste, facecloths (we needed a couple more) and a drink, then went to the checkout where Johan’s card was declined and he’d forgotten mine (and only had about 40p in cash on him :P). We figured out why it had been declined, said we’d come back and went to the bank.

It turns out the bank hadn’t changed his address properly and the new card for his new account (he upgraded his to a proper adult one :P) had been sent to the old address. Not sure it wasn’t picked up last time he mentioned he hadn’t received the card (he’s asked twice) but the man there found the problem, fixed it, ordered another new card to be delivered to the place we now actually live and gave him some money (out of his account). We then went back to the shop to pay for our stuff, I took a painkiller (I was really feeling it by that point as it had been about 1am when I’d last had one and it was now 9.30am) and we got the bus home.

The carer was due at 10am, but we got home at 9.55am. The woman with the paperwork arrived just after 10am, and started on that while waiting for the carer. Everything was fine and we realised that things were different almost straight away. I’m going to have one main carer, and then they’re going to get a couple of others to meet me and to be available for those times the main carer isn’t working. That means only 3 people to get to know! There may be emergencies when they’ll need to bring in someone new but they try to avoid that and stick to those three. Then the carer who is going to be my main one arrived, and we got on straight away 😀 She was late because she’d just walked about a mile, which is fair enough (we’re fine with lateness, it’s earlyness that I can’t cope well with).

New carer is American, very eccentric, and has a very similar sense of humour to both me and Johan. The woman doing the paperwork (who is also a carer) was very lovely as well, but she was a little bit left out as the three of us started talking about all sorts of things. We did all chat about how the agency works a bit, as we explained what happened with the old agency (they were horrified, and the paperwork carer was wondering how they managed to run anything that way) and they were able to reassure us that they weren’t like that. They’d already been told a bit about me by my social worker (including the main carer!) and we were able to clarify things. We let them know we’re very flexible on times so long as we know in advance, and main carer said she may need to move the morning call a little earlier because she sees someone else just afterwards and wants to get there on time. Okay with us 🙂

My social worker did get the timings a bit wrong (morning calls were meant to be 45 minutes, but are now an hour, and evening calls are meant to be 30 minutes or 1 hour depending on if it’s a “bath” night (we no longer have a bath. Boo!) or not but is now 30 or 45 minutes, but we’ll work with that now and we can change them if it’s not working right.

When the paperwork carer was finished, the main carer wanted to get started. As I was already dressed and stuff, there wasn’t much for her to do except brush my teeth (as Johan is too scared to do it and I’m not able to, it had been a while) so she did that then we chatted a bit longer. In the end we had to remind her several times that she had another client to go to for 12pm (only around the corner, but she kept chatting longer). She understands that I might not always be up for talking and that’s okay with her. She did listen to what we say and wants to work with us, and says she looks forward to being here. She comes back tonight between 7.30pm and 8pm, and I’m actually looking forward to it 😀

It has been a very good day. The carer situation seems a lot better than than the last one, and they understand our requirements and are quite happy with them. The doctors went really well and according to Johan the other doctors he has seen there are really nice as well. We’re on the way to getting Johan the help he needs and I feel like they will help me if I need it. I got to go shopping and go on a bus and though I’m in bed now I’m very very happy. We’ve also bidded on a tiltable wheelchair on eBay which ends tonight and if I win that going out should be even easier (my friend Elmo found it for me- he’s awesome).

*Penguin Flaps*

Danni

Milkybar and Vimto

Autism, College, Computers, Danni, Gaming, Interface, M.E., Physical Disability, Real Life

I wasn’t feeling well so Johan went to the shop to go get me some Milkybar and a bottle of Vimto squash. I am such a big kid but it did help 🙂

This week has not been brilliant. Seems all the blogging and stuff last week was just a bit too much, so needed to be in a darkened room and couldn’t sit up until today. On Thursday the CFS Clinic peoples came to see me, which we weren’t expecting as we’d forgotten to put the appointment in the calendar. They were nice though- understood that this relapse is one of those things (it’s still the one from the end of April) and just want me to do what I can when I can, and rest lots. They also said I could use heat as much as I like for pain, so long as it’s not so hot it burns me 😛 They’d been contacted by my GP but they don’t deal with medication themselves, so have recommended that he contact the pain clinic. That is all very good. They were not here for very long as talking and processing verbal stuff is the most tiring thing I can do, but they’ll be back in about 6-8 weeks to see how I’m getting on. I likes them 🙂

The big thing for me is that I’ve been invited to the Interface Prom again this year (the old students are normally invited). I really really want to go. It’s in about a month, so it may be possible if I improve enough. The venue is the same as last year which is good, and as the staff and students already know me and my M.E they won’t mind if I need to lie down or stuff (there are some sofas just outside the room the actual prom is in- ideal for lying on :P). I may be being a little optimistic since I’m currently still bedbound, but if I can get back to where I was in April (which is doable) then I’ll be able to go. We’ll have to plan it really well and I might not be able to stay very long, but it would be worth any payback/relapse I’d get as I’d get to see my friends 🙂 We’ll see.

Today I’m doing the best I’ve been for a little bit- I can cope with light normally again, I’m sitting propped up in bed, and I just feel much more with it. I actually feel well enough to go into the living room but I don’t want to push it yet- if I’m still the same tomorrow I’ll go through then. I’m just aware that yesterday I still couldn’t cope with light and couldn’t cope with more than one pillow until the end of the day, so don’t want to overdo it.

Diablo 3 is out and Johan is playing a lot of it. He has a level 55 Monk (level cap is 60) and has completed Normal and Nightmare difficulties. He’s currently on Act 2 (of 4) of Hell difficulty (second highest- the hardest level is Inferno) and is doing pretty well. I want to play it (I got it free with the World of Warcraft Annual Pass) so I’m hoping I’ll be able to go on my computer soon.

I managed to call T-Mobile on Wednesday (I think) to sort out my contact. I was going to move my number to Three (who I got my iPhone with) and they gave me the PAC I needed to transfer it, but immediately after they phoned me back and begged me to stay for £5 a month. I agreed as I was originally going to put it on a £10 a month contract anyway and the 300 anytime minutes inculding 08 numbers is very useful, as they’re currently not covered by my iPhone and I have to pay using the landline for 0845 and similar. I don’t need internet on it as my iPhone contract includes tethering, but having a spare phone is useful and means I have access to all the Android Market (I refuse to call it Google Play- silly name) as well as the App Store. The contract is for 12 months so is only £60 in total, which is less than 2 months worth previously, so I’m happy.

Twitter has been amazing as normal, keeping me sane while I’ve been stuck in the dark mostly by myself. I’m still completely overwhelmed by Facebook, so still only using it very occasionally. Johan’s been coming in and talking to me when I’ve been up to it, and disappearing again when he can see it’s making me (more) tired, as well as looking after me generally.

The carers are starting on Monday. Not spoken to them yet (I’m hoping to do that at some point) but it’s a different agency and they offer a bigger range of help than the last agency, so we’re hoping it’ll go well. If they’re really good we may ask for some extra hours paid privately for some extra help for Johan. First visit is at 10am, then it’ll be late evening (not sure what time- we do have a care plan but I’ve not been able to look at it yet). I’m hoping them washing me, helping me with teeth brushing, hair brushing and when I’m up to it getting dressed will help Johan out a lot. When the shower’s fixed I’ll be able to have one up to three times a week if I’m able to (1 hour calls) which will be awesome.

I think things are looking up 🙂