Preparation to move on ๐Ÿคฉ

SORRY THIS ONES REALLY LONG. ๐Ÿคฆ

I found out sometime around November that I’m going to be moving to a supported living placement in the same town as my dad. I’m really looking forward to it. I went and visited it in December and I love it. I got to pick my favourite of 2 flats. The first was a lot more open plan it had a huge living room/ dining room. But the kitchen was really small. It was nice and there was only a couple steps to get in and out of the building. But it wasn’t perfect.

The other one was amazing. It was up two flights of stairs (small flights but about 30-35 steps) which is going to be hard with my legs and when I’m having a tough day I’m going to be stuck in all day but it’s perfect inside. There’s a little enterence bit after the front door like a hall. (The other one was straight into the living room when you walked in.)

The lounge is still really big and has some big windows to let the sun in (although I normally choose to sit in the dark, I’m trying to get more sunlight to help my mood).

The bathroom is a wetroom and has a heated towel rack which is cool, it’s got a big bathroom cabinet with a mirror on which is a nice touch. Its got a side like shelf thing which will be good for storing stuff and for helping with balancing me when walking. And it’s also a wetroom! This is amazing for me as it’ll mean me being able to showerย  when I’m having a hard day. At the moment I do find it really hard getting in and out of the bath/shower in the bath. It’s hard to lift my legs that high and I can’t stand long enough to shower but also find it hard to pull myself out of the bath. ๐Ÿ›€ With this new wetroom I’ll be able to get a shower chair so I can sit down and wash. This is making me quite excited.

The bedroom is a really good size as well. It’s all amazing. ๐Ÿ›Œ

Finally the kitchen, I’ve saved the best til last. It’s the kitchen of dreams. It’s got built in appliances eg: oven, fridge freezer (not built in but included), washer/dryer, dishwasher. Omg so good.

It’s huge! It’s over 3x bigger than the other flats kitchen. It’s god a red gloss splashback panel in the middle above the sink. It’s amazing. I love it! Lots of storage too. There’s floating cupboards above the sink that’s split into 2 cupboards and the right one is my meds cupboard with a lock on it. I’ll either have the key and do my meds independently or more likely in the beginning the staff will have the key and I’ll do my own meds but be watched take them.

Chicken ๐ŸฆŽis coming with me (or I wouldn’t be moving in) and I can get pretty much whatever pet I would like (within reason), so I can get a cat or dog or something like that to wander round. I’m looking forward to that. ๐Ÿฑ๐Ÿถ

The staff all seemed really nice. There’ll be someone on site 24/7, they go to sleep and 10:30pm so after that until 7:30am it’s emergencies only. Which is fair enough.

I can have my candles๐Ÿ•ฏ๏ธ and incense there (at my current placement it’s against the rules- but I do it anyway). I can drink there.๐Ÿบ๐Ÿท I can have visitors, including overnight ones. ๐Ÿ˜‰๐Ÿ˜๐Ÿ›๏ธ

It did make me laugh because we were all talking about visitors and them signing in the visitors book (which I’m used to) and one of the women came out with but if you come back and 2am and you’ve pulled they can sign it in the morning. It made me laugh so much, the visual image in my head of my bringing someone back and being like, now before we get down to business we need to wake up the staff anounce to them that I’ve brought you back to shag so that you can sign the visitors book.

Lol.

Overall I’m really looking forward to living there. And y’know moving on. It’s going to be scary but I know I can do it.

See attached photo of my new kitchen in my flat.

With love and dinosaur hugs ๐Ÿฆ–

Alanis x

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My new wheels

So I didn’t tell you guys this, I ended up getting a wheelchair. I know I spoke about the idea of getting one on here before. Just after I got back from Canada I had a sudden nosedive where my mobility, tics, pain and all that stuff. I’m thankful that it happened after I got back from my trip though.

So yeah things became unmanageable and so I went to my GP and he agreed that it would grlh me to have one. He also perscribed some pain medication, codine.

Im really glad I got it as it’s beginning to slowly give me the ability to do stuff that before I simply didn’t have the choice to do.

It’s not all been plain sailing though as we’ve encountered a couple minor issues…

1) It takes a lot of strength and energy for me to push myself in it. Sometimes I simply don’t have that.

2) My carers have been told they’re not allowed to push me in it because they haven’t got the training to do it.

3) At both the front door and the back door to the house there’s massive steps that I can’t get up (or down) in my chair. So if I’m having a bad day with my legs, I have to get on the floor out of my chair and drag myself across the entryway floor, and then pick up my chair over the step.

4) On the drive we have gravel, which if you’ve spent much time in a wheelchair you’ll know, it’s ridiculously hard to push yourself over. You get stuck all the time.

5) Drop kirbs are ace, but not so ace if you’re trying to stay on the path and not cross the road. I’m finding it difficult to not just slide down the ramp. It takes a lot of power to go past it.

6) There isn’t a lot of drop kirbs near where I live, and the ones that are there are in useless places. So when I need to cross the road it’s an issue.

7) The house cars both have boots that are too small. It’s like trying to play a game of Tetris that your never going to win. Normally it has to go on the back seat.

So yeah the whole situation is not perfect, but at least now it’s physically possible to do simple things when my legs refuse to work.

Hopefully this won’t have to happen for long.

With love and dinosaur hugs

Alanis x

 

Back home…

So it’s just gone midnight, I came home from Canada around 12 hours ago. It was an amazing trip. I was so happy to finally see my friend, and to give her a massive hug. Managed my meds well and my mental health was good. Did have a few close calls with binging as I was thinking, your on holiday go for it. I have a very hard time understanding the line between eating what i want and eating everything in sight.

I did unfortunately have a tic attack in public on the side of the road though. Which resulted in an ambulance being called and me being taken to hospital. Only stayed for a couple of hours while it calmed down.

It was frustrating though because my friend told the paramedics I only spoke English and then they continued to talk to me in French. Which made me even more anxious because I didn’t understand what they were saying.

And I also developed some new tics, one being ”I’m a fucking zoo animal”. It’s strange for me as Ive never had a tic involving the word fuck or fucking before. Other coprolalia, yes but I thought I’d escaped that one. Apparently not.

It was an amazing trip though, one that I’ll remember forever. I’ll post some pictures below.

Can’t wait for the next adventure!

With love and with dinosaur hugs

Alanis X

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CANADA TOMORROW!!!!!

So if the title wasn’t a clue I’m going to Canada tomorrow. Right at this moment in time I have 16 hours and 52 mins left until I leave the house.

I’m really excited to go. I honestly can’t wait! I’ve got my case packed and my clothes laid out for the morning. I’ve got my money sorted. My assistance has been booked (I’ll tell you more about that later) It’s all ready. Got my passport, my insurance is sorted. Everything’s perfect.

I leave Manchester airport at 12:20 (midday) so I’m going to aim to get there just before 8:30 because I’m always running late.

Got lots of activities planned while I’m over there but I’m most looking forward to giving my friend the biggest hug ever.

Going to bring back lots of snow globes (I collect them) and souvenirs.

Sadly the French learning didn’t really get off the ground. I learn one word and forget the last one I learnt. Oh well.

I booked my special assistance on the 17th and they’ve put me in a wheelchair and given me one of the disability lanyards you can get at Manchester airport. I asked about what will happen if I have a tic that could create a security alert and she wasn’t too clear about it. She said to let them know when I get there and it *should* be fine. The *should* is worrying me a bit though. I reminded them yesterday that I was coming so hopefully it’ll all go smoothly .

I had a member of staff make a comment about it asking if I really needed it. She was implying that I was just milking it and that actually I was fine. Which pissed me off. I have difficulties which need assistance, just because I’m not paralyzed or missing a limb doesn’t mean that I’m not dissabled. Disability isnt always visible. She really annoyed me by insinuating that I was just making it out to see worse that it is.

I’ve just got the stickman communication cards i ordered. I got one for tourettes and one for tic fits. I’m going to also order some for pain at some point. I also received the boxing hand wrap padded gloves that I ordered. They’re helping with my punching tic that I have and I’m finding the pressure is helping to reduce that tic. And they have gel in the knuckle so if I do tic then it does less damage and causes less pain.

Speaking of pain, I’m in a lot of it. My knees especially these past couple of days. I nearly cried walking up the stairs earlier.

I don’t know if I told you guys but the Doctors think I have fibromyalgia. It would explain the unexplainable pain. I just wish it was something else that had a cure. ๐Ÿ˜ฆ

I also have some sad news, my guinea pig goose died on Saturday. I’ve had cremated and he’s back home now with piglet and bear by his side (My other guinea pigs who’ve passed away). Breaks my heart that he’s not here anymore, the absence of the him is everywhere I look. ๐Ÿ˜ฅ

But remaining positive no matter what. Ecstatic for Canada tomorrow. Cant believe that it’s finally happening!

Anyway im gonna go finish little bits and pieces that need doing for tomorrow.

With love and with dinosaur hugs

Alanis x

Wheelchairs, hair and pride

So It’s 7:35 in the morning and I’ve been up for hours ticcing like mad. I am tired and I am in a hell of a lot of pain. To distract myself from all of this I’ve decided to write to you guys.

Not a great deal has happened this month since I last checked in, I fly out to Canada on the 27th of this month (September) I have 23 days to go, not that I’m counting or anything.ย  (I’m 100% counting, lol) Then I go to Scotland for my tourettes weekender from the 12th-14th October, 2 days after I’m back from Canada. That’ll be amazing.

I’ve been struggling with walking recently. I get tired super easy, like I have to take breaks when I’m getting dressed. And walking also has been causing me a lot of pain. So for emergencies I’ve been considering getting a lightweight self propelled wheelchair. I would only use it for emergencies and when I can’t walk. I have a tic where my legs give in on me and I can’t get back up. Times like then it’d be super helpful for. And it’d be nice to not be holding people up and having to cut days out short all the time. It’d give me more independence, be safer for me and allow me to do things that right now I just can’t do. For example it’d give me more confidence to go out on my own.

The most difficult thing with it will be knowing how to broach the subject with my carers, I was considering leaving it until I move into adult foster care and then getting one. I figured that way would be easier than having to deal with the bitchy comments and talking about me behind my back that the other girls would do. (the residents) And have to deal with the staff thinking I’m being dramatic or that I’m just attention seeking etc. I think because I usually put on a brave face when I’m dealing with pain or because I usually push through as much as I physically can, then they don’t get how much I’m struggling. Physically my body isn’t the best, there’s some things my body just simply can’t do. I mean I don’t want to be spending time in a wheelchair at 18. Even just the idea of it sucks. But if this is what I need to do every so often to get the most out of my life, then fuck it. So no, I don’t think I’m going to take the easy option out. (Which would be easier emotionally in some ways but harder physically) I think I will look into getting one while I am in my current placement. It’s going to be hard but it’ll be worth it in the long run.

I just hope things physically improve soon. Because I can’t deal with this at the moment.

In other news, I got my hair cut short. It’s the first time I’ve had it cut in 6 years. It was a big step but I love it. Got the left side shaved on a number 3 and the right side’s in a long fringe. Like a pixie cut length. And it’s still purple.

Oh I went to Manchester pride. That was amazing. Had the best time ever. Saw the parade, went to the silent disco, went into the clubs for the first time, danced, partied, drank, got my face glittered, and we also lit up a candle in memory of those/ we’ve lost. Got slightly too drunk on the Monday night when I got back (I blame the gin) and had the hangover from hell the next morning but it was so so worth it. Rainbowed it up. Loved it. And I got to see Lucy spraggan on the main stage, I love her and it was great to finally see her live. Going to hopefully book tickets to see her in Manchester in October. This year is going too quickly. It’ll be Christmas soon. My mum’d kill me if she heard me saying the C word this early in the year. LOL.

That’s about it from me. Will keep you all semi updated at least on the walking situation.

With love and dinosaur hugs

Alanis x

Sensory overload

Saturday 4th August

10pm ish

Bonjour! I’ve been *trying* to learn some phrases in French for my trip to Canada, at the moment it’s minimal what I know but I’m trying. I’ve made an appointment to get my passport sorted in Liverpool on Monday. And then it’ll be delivered within 8 days. Can’t wait to get the last bits of major planning issues sorted for Canada.

Did my medication competencies, so I should be able to start doing my own meds now as up until now the staff have had complete control over them. It’ll be nice to take some more responsibility for them.

The main issue I’ve been having at the moment is sensory issues. I’ve always had issues with certain things, like the sound of scissors next to my ears when having a haircut, the feel of velvet and silk, buzzing noises, and many other things. I’ve also had overloaded senses for as long as I can remember. But recently it’s been sending me into complete meltdown when I get overloaded. It’s like everything is happening at once and I’m still not 100% sure what my meltdown triggers are. It’s really difficult, it’s hard to describe what it feels like, sort of like everything feeling more overwhelming. Like you know when you get an itch and eventually the itch is the most giant thing, the most consuming thing in the world. You can’t think of anything but the itch. Well it’s like that but with everything. All the things I can see, hear, feel, smell and taste. But the things I struggle with the most when I go into overload are bright lights (well any light), any noises and the things I can feel.

Like for example now I can feel my wrists leaning against my laptop, my fingers hitting the keys on my keyboard, and my right ear is itchy, my right foot is numb, I can feel some pain in my knees and in my back, I can feel my hair resting on my shoulders, and I can feel myself sat on my bed leaning against the wall. I can feel the ache of my eyes and I feel it when I blink. And I feel my stomach rising and falling with each breath.

Now imagine each of those touch sensory things being overwhelming, then imagine that for all 5 senses. Imagine it being physically painful to hear someone speaking to you, never mind hearing and feeling yourself speak back. It hurts to feel yourself breathing because it’s like your brain playing multiple games of ping pong at the same time and focusing on all of the movements in each game at once. It’s also really exhausting, being in the level of panic that it causes for me, it’s super tiring. And when your knackered to start with, it’s not helpful.

I had a particularly difficult meltdown the other day (Thursday), normally I can switch off my music and make my environment the calmest possible with the least going on. Normally after around 20 mins of this calm room environment, I can slowly work back up to the normal level of stimulation. So when after 20 minutes I was at the same level of panic (don’t know how else to describe it) I went and sat in my wardrobe with the doors shut. I had my pink owl hooded blanket with hand pockets on and I had my earphones in my ears, just to try and muffle noise a bit more. I also put my fluffy teal blanket over my legs because then if moved the I wouldn’t feel the clothes hung up in my wardrobe brushing against my skin as much. I pulled my hood down so that I couldn’t see the light from my window through the crack of the wardrobe door.

People came in a couple of times to see where I was and check I was alright, I’d locked my door because I didn’t want one of the other residents to come in and see me like that. Anyway the staff unlocked it and checked where I was (in my wardrobe) and the opened the wardrobe and walked away. Looking back it was strange that they walked away.

I came out of my wardrobe after a couple of hours, I went downstairs and one of the staff saw me and she told the other staff that she’d found me. I think ‘found’ is a bit of a strong word seeing as I wasn’t hiding, they’d came into where I was, and I’d walked down right in front of her. But whatever. Then I got asked loads of times where I’d been, and what I’d been doing and when I got back. Because talking was hard, even them speaking to me was hard, all I could get out was ‘wardrobe’ every time they asked I just said ‘wardrobe’. They kept on saying that I wasn’t in the wardrobe because they’d checked 3 times. They had checked the wardrobe I was sitting in, not seen me and walked away.

So then I managed to say the word ‘meds’ and then I got interrogated about whether I’d taken anything, or if I’d been drinking. I just shook my head, I wasn’t on anything. I was just struggling with the sensory things around me. I took my meds. Every single time I take my meds I have the on the 5th step of the stairs with my feet on the 4th. I then take my meds in the order in which they were prescribed. So for example, my antipsychotic medication is 1st as I’ve been on that for around 4 years, then my antidepressant comes next as I’ve been on that for around a year/ 18 months. Then I have my tic medication next as I’ve only been on that for just over 6 months. And at the moment I’m also taking a vitamin D supplement last because like I’ve mentioned before a blood test showed it was low. But when I took my meds then I took them on a chair in the kitchen and I took them all at once. This worried the staff even more because that’s not like me at all.

So I’d taken my meds and then I was asked if I’d like to sit in the games room and I nodded. I went to sit in there and a member of staff came to sit in there with me. He obviously still thought that I’d taken something because he kept on asking me if I had. He asked me how I was feeling and I couldn’t find a way to vocalise it, or I shrugged my shoulders and then he asked if I could guess or try to say it. So I sat and built up to it and eventually said loaded, he asked what I meant so I said over as an explanation. So then he asked ‘too much going on?’ and I nodded. Then he asked what I needed and he asked if a dark quiet room would help. I nodded again. He left the room a few minutes later, presumably to do some paperwork. I switched my bearded dragon, chicken’s heat light off. And tried to calm down a bit more. Eventually was calm enough to get some food, it was around 10pm by now and I went and made a sandwich with my heart beating hard in my chest.

By the time I was calm again completely it was around midnight. I had the longest meltdown I can ever remember having. I fell asleep on the sofa soon after, I had no energy left to give. I woke up on the sofa around 6am on the Friday morning.

I have meltdowns pretty much everyday, it’s like tic fits for me, if I go a day without I’m surprised and grateful. I’m looking at getting some sensory help supplies. For example on my list so far is…

  • Weighted blanket
  • Weighted compression vest
  • Ear defenders
  • Sensory chew – my earphones aren’t a long term solution.

So yeah hopefully I can get some of them soon to help with these times. And I hope and pray that the other nights events when I had that long, long meltdown, isn’t a sign of what’s to come. That would suck.

I really want to go to quiet hour at morrisons, they have the lights dimmed, the music off, the noises lower and everything’s just generally a lot calmer and less stimulating. It would be really helpful for me as I find shopping very stressful. But I’m also thinking would it be okay for me to go? Where there’s less noise it means my tics would seem even louder and I’m worried I’d stick out even more than usual. So I don’t know. I’m thinking it might not be fair on other shoppers who find the noise stressful. I don’t want to make the one hour a week that some people find it calm enough and feel able to shop, stressful and inaccessible. I might try it and if it’s awful then I don’t have to do it again. It would just be good to try. If you haven’t heard of it, it takes place from 9am-10am every Saturday morning. I think it’s a trial at the moment but if it’s popular it’ll be likely to stay.

Anyway hope you’re okay.

With love and dinosaur hugs

Alanis x

Just a quick update

So i posted last time that i’d gone to the doctor’s about my low energy levels aka i’m permenently exhausted. The doctor sent me for a blood test which has come back as low vitamin D. Which reminds me, i need to go and pick up my supplement for it. Hopefully more vitamin D will mean more energy and feeling better.

I also have been to another tourettes support group yesterday and i got a lot of support from that. It was great to go back, especially as last time i had a tic fit which lasted the majority of the time i was there and still hadn’t finished by the time that the group finished. So we rang for an ambulance that said i wasn’t priority and that they’d be there at some point over the next few hours. They never came. I ended up being picked up by the people at the group and my carer and put accross the backseats in the car. It was suggested by the on call nurse from my care home’s company. It didn’t help at all and i was still flailing around like a fish out of water. The fit carried on and when we arrived home i was still convulsing and then the staff had the issue of getting me out of the car and into the house. So they picked me up again and put me in one of the downstairs rooms with pillows around me and left me to it. It was embarassing as the other resident girls saw me, painful as i had been fitting for hours and kept on hitting my head. And i lost all my dignity, i wish they’d left me in the community center where the group was. The people who were with me all said it was fine me being there and that they didn’t mind staying while my body lost it. And it made me angry that the on call nurse had just told my carer i had to be pretty much dragged into the car. And when i got home my carers at first were a bit like, come on then you’ve done your fit now, get up and walk in the house. While i was still fitting in the car, convulsing and not able to control any of my movements. It was dehumanizing and i feel like i was treated like a problem, not like someone who was having physical difficulties and needed support. So it was good to go back and get another good memory of being there. And we found out that the center has a sensory room with padded floors and pretty lighting and mirrors. I feel like the padded floors could be very helpful if me or someone else has another fit there, and also it would be a lot more private. As where i was (in front of the front door and on the same bit where people walked past to go to the toilet) everyone could see me.

So that was yesterday, i’m going to try and get some studying done today and also sort out getting an appointment for getting my passport. I want to do it through one of the appointment centers and not through the post form because it’ll be a lot quicker and will guarentee it’ll be here in time.

I’ve got a few new jaw and mouth tics. Which is meaning my jaw is in pain at the moment, just what i needed – not.

I also need to get some wrist pads ordered because my wrists are hurting me. I have a few wrsit tics, rolling them, banging them together, punching them, and so on and so forth. My knee pads have been saving my knees a lot, the other day i was questioning whether i’d broken/fractured my knees by constantly falling to them because i was in so much pain.

My mum’s bought me some CBD oil for my tics and ptsd to try and help, it tastes god awful and i’ve not noticed any difference. But i’ll finish the bottle and then make a judgement about whether it’s worth continuing it. I’ve heard it’s the THC element that makes it work and without that CBD’s useless. So that might be why it’s not helping. But if you don’t try it you’ll never know. Trial and failure because one day it’ll be trial and success.

I’ve joined a dating site, looking for a boyfriend/girlfriend/other half. Spoken to a couple of girls but nothing major at the moment.

Still considering getting a pendant alarm or something where i can press it when i’m having a tic fit and then someone will come and help.

But generally things are OK. Things are moving along.

With love and dinosaur hugs

Alanis x