40. I Need A Hand

Lindsay began seeing me every week for washing and dressing with Kerri, the therapy assistant (therapy assistant = physiotherapy + occupational therapy = double the demand). Kerri and I used to set each other off giggling, and Lindsay would have to tell us off. The three of us had some great bicker-banter going on. Combine my difficulty in sitting up, getting used to washing with one hand, and my tendancy to be easily distracted, it was no wonder it would take me over an hour to get ready in the morning with them.

Kerri also started seeing me to help me with stretches. We found out I laughed, rather than screamed, when a stretch became too much. An occupational therapist's job is also to look at hands, so Lindsay saw me every week to look at the movement in my hand. Lindsay also saw another patient called Dean, who befriended me. Dean was about my parents' age, and had right-side weakness. We discovered he had had a stroke on exactly the same day as me, just a few hours before. When I first came onto the ward, he'd been lent the ward's electric wheelchair, so he used to carefully creep down the corridor like a snail. He was put back in a manual chair though, because it encouraged him to have a better posture. Lindsay told him off for teaching me how to scoot, which he sneakily did when the therapists weren't looking. He didn't really teach me though; scooting is common sense.

I also used to be taken off-ward to see an occupational therapist called Marie in a special workshop. She was parent aged, very experienced, and her job was specifically to look at patients' hands. Initially, she had a kind of strict teachery demeanour that developed over time into a wry repartee. Marie looked a lot at the sensation my arm. My sense of touch, even now, is not localised. For example, I know my fingers are being touched but I can't tell the exact specifics, like which one. A standard thing that is done to work on sensation is to immerse the hand in containers of materials with different textures. So, Marie used to dunk my hands in bowls of pebbles, of popcorn, of buttons, of hammer-beads, of rice etc. This was funny, as I told her.

We also did other hand tasks like the mirror test, where you hide your stroke hand behind a mirror and look at the reflection of your moving other hand, trying to trick your brain into believing it is seeing the inactive hand move. In theory this helps the neuro-pathways mend. It didn't really do anything for me, but was still interesting. Marie also had a lego-piece-sized sensor that worked for computer controls. She would stick this on my twitching thumb and the miniscule twitches would control a computer game. I could make a monkey go up and down a tree to fetch a banana. The games were very simplistic, and the graphics awful, which I used to complain about. We also played games where I had to put a stick in holes in a board. She would basically have to hold the stick in my hand to do this, as I had no grip, but it was all about stimulating that brain.

The therapists also ran a therapy group each week, where they would gather all the relevant patients and do appropriate exercises with them. In the run up to Christmas we had one where we made the ward a giant snowman out of plastic cups, using staplers. I wasn't much help practically, but provided vital moral support. Another week we played Christmas charades. I was by far the most enthusiastic (and vocal) player, and I tried to use my left arm, but acting when seated, with an arm down, and not being allowed to talk, is a trial.

Eventually, my hand started curling up. This is because the muscles tighten, and fingers are pulled inwards. I was trialled with botulinum toxin injections (more commonly known by the brand name 'Botox'). I got Kerri to write this on my schedule as 'stabby stabby'. Rachel gave the injections to me in February, under the eye of one of the doctors (who obviously didn't get the memo that we were going to inject my shoulder as well, and so was surprised when I fluidly took my top off). This injection into my wrist, as well as shoulder and leg, wasn't permanent. It paralysed certain muscles to give my brain a chance to utilise that muscle more. After 2 weeks, my fingers were lying flat again, Botox giving them respite.

Rachel made me a badge for my injections (not the bear).

39. Unfortunate Young Girl

This week I've had some things go well, and some not so well. I sorted out appointments, and bought equipment with my Disabled Student Allowance. I sorted out buying a physio hand glove using my Stroke Association grant. However, our electric wheelchair plans have been pulled up short.

The occupational therapist, Cyprian, filled in all the forms for me a while ago and had to send them off to the GP to sign. He then chased up the GP for a while until the forms were signed. I then got sent a short form to sign, and he sent it off. Since then, he has been chasing up the company  which provides the electric wheelchair. This week, Cyprian was told the application had been rejected. This was because in the short form we had filled in, he had ticked that I could self-propel (push myself with two hands). Even though he had ticked that the electric wheelchair would be needed for mobilising at university, and that I couldn't push myself outside. I'm addition, he had filled in all the preminary forms explaining my disability. We both rang and each of us explained that I couldn't self-propel, I could only scoot, and could not possibly do that outside, up and down hills. There just isn't a tick-box opinion for propelling yourself using your feet. We have appealed, and they have re-opened the case.

I also received the report from the neuro-surgeon I had seen at Queens Medical Centre. It detailed a report of his findings to my hospital consultant, the request to the hospital for an MRI and a genetics test. It was everything I had expected, but his cover letter called me an 'unfortunate young girl'. It angers me to be patronised like that. Is a disappointing stereotype of doctors. I don't really leap at the thought of being called a 'young girl' by an older man. I'm clearly not a patient from the children's hospital. And I don't really consider myself 'unfortunate', more like 'fortunate'. Fortunate to have survived, to have recovered so well. If he described me like that to well up pity and convince the hospital to fast-track me, I still don't really appreciate it.

Today, I went to an inclusive cycles event, where bicycles are adapted for disabilities. This involved a lot of tricycles and bikes which can push wheelchairs in front of them on a platform. This was aimed at people with learning difficulties, those with physical impairments, as well as those who are wheelchair-bound. It was nice to go to an event that was mainly for children and  young people. It was my first taste of events for disability, and not just rehabilitation. I went on a tricycle I could cycle with my legs as well as on one for my hands. I could mainly cling on with my left hand and foot, and was able to cycle quite successfully. Despite the seat of the leg tricycle being set back as far as it could be to suit my height, I kept banging my knees against the handle bars.

I went with Becca, the occupational therapist assistant, and made her push me ahead of her on the wheelchair-platform bike. We also rode on a together on a quadracycle, where two bikes were attached next to each other, and one of these controls the steering. Becca let me steer. For someone who can legally drive, I am terrible at checking my blind spots. Becca was good at reminding me to turn. It felt a bit like we were riding some dodgems. We both found the event very exciting and novel, and one we can definitely recommend to other residents and their families. We were both definitely too thrilled by the whole thing.

Down to ride.

38. How The Tilt Tables Have Turned

One day early Decemberish, Laura decided to try me on a tilt table. Now, I'd been put on a tilt table before, way back in neuro intensive care in Sheffield, so I knew exactly what to expect. It's like a normal physio bed-table thing (plinth), but it has a rest for your feet to go on. You lie on your back, and are strapped down, then the table has a remote control to move it from horizontal to vertical. In the end you are standing upright, the straps holding you in place. Whilst this is done, your blood pressure is taken at regular intervals, to check you aren't panicking, or about to pass out. (This can happen if you've spent too much time lying down.) Every time I was tilted, my blood pressure was rock solid. Sorry, but I've been on way scarier rides in my time.

To put me on the tilt table, Laura was helped by another young 'senior' called Rachel. I feel like any first impressions she had of me were fairly accurate: trying to crack any joke I could, and trying not to giggle (at my own jokes). I was alternately comparing the experience of being tilt tabled as to being put on a torture table, wearing a straight jacket, and being a vampire rising from its coffin. It must be so tiring being a physio; they must have heard all the jokes a million times. The aim of a tilt table, by the way, is to see how a patient can bear their own weight. I think I had to practise shifting my weight, standing centrally, and trying to hold my legs straight without my knees buckling. My left-side weakness meant I was rather lop-sided. I liked to close my eyes to concentrate. Rachel thought I was fainting.

It was about this time as well, all the soles of my feet started peeling off. My hard-earned finger calluses from playing the guitar had peeled off a month before, now it was the feet's turn. It was sole destroying. It was an unpleasant reminder that I wasn't walking around, and quite an unexpected impact of this. It was genuinely one of the saddest things of the year. The thickness of my soles, testament to years of activity and hiking around, gone in a matter of weeks. Don't take those toes for granted. I had a surreal conversation about faith with some physios whilst lying flat on my back, as cream was being rubbed into my cracking feet.

Moving swiftly on. Soon it was the end of Laura's student placement with the end of term  in December. I was off-ward when she finished, but she left me a nice note. Rachel started to become the physio that did the most sessions with me. (The physiotherapists tag teamed, unlike the occupational therapists, so I had sessions with all of them, but Rachel was my main boss.) I think we entertained each other. I remember how unfortunate it was when I could first start moving my elbow. I could only ever bend it when lying supine. It would be straight, and I could floppily bend it up to slap my boob. It looked ridiculous.

I'll never forget one festive session, with Christmas in the air. I was practising my sitting balance. I think some of the other physios were about, and probably the occupational therapist Sarah (she always seemed to be gravitating towards the gym, i.e. the fun). Rachel hid behind a curtain and burst out to the track 'Rockin' Around The Christmas Tree', wearing a Christmas tree balaclava/hat. I fell over laughing. Then I wanted to wear the Christmas tree hat, and wiggled my head whilst the therapists all rocked around me. We were definitely in the spirit of the season.

Upshot of a massage bed a.k.a physio plinth

37. Parties, Pools and Parrots

I have been doing lots of fun things lately. Here's some of what I've been doing.

I went with my family to the wedding of my friend, my parents' godson. It was great to make it, seeing as I've known him my whole life. I stood for all the standing parts of the wedding, which was in Hammersmith.  Everything at the reception had so much effort put into it, with beautiful decorations. There was a ceileih I didn't join in with, despite offers to spin me around in my wheelchair.

I also went to Birmingham for a gap year reunion. (As part of Action Teams program of BMS World Misson, I was in a team with two other girls, where we worked in a school in Mizoram, a state in North East India.) Whilst there had been about 30 other young people in teams in my 2015/16 year group, this reunion was for Action Teamers for the last 10 years, so about 60 people were there. Everything had been made very accessible for me, and I was given the chance to share some of my story one evening. It was a great way of catching up with many people, who I probably wouldn't have seen individually, at the same time. There were some valiant wheelchair pushers who braved pushing me to a bonfire.

Yesterday, the physio, Dee, and Becca, the occupational therapist assistant, took me to the swimming pool. The main counter was closed, so we went to a counter which was so high, I couldn't see the person sitting behind it from my seated position. Dee explained that she and Becca wanted to take one of their residents to use the pool. The receptionist blandly said we'd need to get a carer card by applying online. I clocked on she probably didn't realise I was sitting right there, so I stretched up and waved, "I'm here!" She changed her tune and let me pay to use the pool, whilst the other two got in free as my carers as a one off. I gave my new friend a big "Thank you!" as we left, and she said goodbye benevolently. Smile and wave.

To get in the pool, I was sat on a little wheeled chair, which was lifted up by a literal chair-lift, rather like a small forklift. It lifted me up and I was slowly swung over the water, then it lowered me down into the water. It was the kids' pool, so the shallow end was 0.9m. Dee and Becca were fine, both about a head shorter than me, but I was told to try and stop wobbling when I stood. Not my fault I'm about 1.7m. I did some walking in the water, as well as some supported swimming on my back. At the end, I had my splash time. We all ended up joining in. I think splashing is a bit infectious.

I've also been taken on an outing, kind of like a school trip, but really not. The staff at my centre recently took 3 other residents and me to visit Tropical Birdland in Desford, Leicestershire. I think the staff were more excited than we were. It's like the zoo, but just birds. This was actually a great trip, as it wasn't very long, and was very inclusive. At the end of the visit there's a free-for-all where the parrots aren't caged, and you can handle them. An incident form did have to be filled out as a parrot started chewing at a resident's mouth, and took some small chunks out of his ears. At one point, I managed to have 3 parrots on me at once. I was thrilled, even if they did destroy my hoodie string.

So I can always remember it.

36. Food

When I was nil by mouth, my PEG tube was attached to an all-in-one nutritious feed bag, for about 12 hours each evening/night. The feed had a brand name, but was just referred to as 'a bag of feed'. The connecting tubing was called a 'giving set', which I thought was a ridiculous name, and I took the mick out of it every time it was mentioned. The speed of the feed was controlled by a pump that beeped insesantly when it was done until someone came and turned it off. This could take a while. They would also pause it when I used a bedpan. It would be a woefully short pause until it started beeping at me again. Peer pressure... more like pee pressure. It was when I knew how to reach across and re-press pause to let me relieve myself in peace, that I knew it really was time to get rid of the machine.

Now I was in neuro rehab, Katie took over from Charlotte as my main speech therapist. She soon decreed that staff could give me half a pot of yoghurt 3 times a day. I tried to convince staff to just let me have the full pot. I asked if I could eat with the other patients at their mealtimes. One nurse just put an apron on me and let me make a mess with 2 pots. Because of the shakiness of my right hand, and having a choking risk, I was still officially being hand fed, but one student nurse used to give me the spoon and I never once spilled any down myself. Katie also tried me with water, which would make me cough most of the time. I always liked what I was given, and was keen to have more. I didn't particularly want food, I just wanted to eat normally.

Katie and Charlotte organised for me to have a videofluroscopy. This is an x-ray video taken whilst you swallow. It shows if any particles are going down the wrong pipe (aspiration). They wanted to do this before they tried me with foods of different textures. I'm not sure why this was necessary, as I wasn't having too much difficulty. I guess my laid-back attitude made them worried I had a lack of feeling in my neck, and so wasn't noticing I was aspirating. Personally, my main cause of coughing was keeping a straight face whilst being spoon fed.

I tried so hard on the day of the 'vf' to maintain calm. I was firmly instructed it was serious. I was taken to an x-ray room.  Both Katie and Charlotte were there, and a radiologist. Katie fed me foods of different consistencies, and little x-ray videos of me swallowing were taken, which Charlotte watched. I kept quiet as I was ushered into the room. I even managed to keep quiet when Katie appeared in a zebra print lead apron (to reassure kids, which I never understood as it wasn't a children's hospital). The food tasted tangy as it had a dye in it so it would show up on the x-ray. I managed the first few spoons fine. So far so good.

Then I sneezed. You could see this on the x-ray, so I saw my skeleton rocked forward and my windpipe expand massively. It was very educational. Then I burst out laughing, probably releasing all the tension of trying so hard not to. The findings of this endurance test was that a I was basically swallowing food particles fine, but a tiny amount of water leaked into my lungs. Afterwards, Katie trialled me with bananas, cakes, Quavers etc, and soon I was put on a soft food diet. (It tasted like normal food, just mushed up.)

I was still spoon-fed for safety, and had to drink thickened water. This was done by adding a powder, making it look, as my dad said, like wallpaper paste. It really wasn't as grim as it sounds, but did make water taste dusty and stale. In flavoured drinks  and tea though, it didn't have a taste, and in my view even improved the normally-watery hot chocolate. Now I was eating food, I could go to the breakfast club which the occupational therapists ran every week. The aim of this club was to achieve independence at breakfast, where patients made their own food, and did their washing up (lots of grumbling from the old men). I wasn't expected to do this, but happily sat there eating soggy weetabix, and insisted on attempting to do my washing up in a washing up bowl.

I also demanded that the dietitian stopped my feed. She cut it down, then stopped it all together. The relief; no more beeping. Soon my PEG tube was just used for liquid medication, and flushed with water to keep it clean. (I was soon given medication as shots to drink. Some tasted quite nice, but some tasted so bad I ended up sneezing it all over another patient, so was put on tablets.) Because I was drinking as well as recieving plenty of water through my tube, I was doing massive pees, which were commented on excessively. ("How am I meant to not spill this brimming pan down the corridor?")

I was on a normal diet (and feeding myself) by Christmas. Charlotte had said to me at the start of November that I'd be eating Christmas dinner by Christmas, she just couldn't promise what consistency it would be. I chose not to hear the last part. Hitting normal fluids took a bit longer, as water was hard to control in the mouth, but I got there. When my feed was stopped, I was put on protein-rich milkshakes for a while, as a precaution. I tell you, the hardships I went through.

Really not bad.

35. Emoji of a Wheelchair

My physio was having big ideas the other day, about cutting out my wheelchair in the next few weeks, and the staff using my walking frame to walk me to breakfast and to the lounge, going with me down the stairs in between. I easily managed to do the stairs with her this week, so it's a technically feasible plan. The main issue is, it would involve training 20+ care staff, who have not signed up for being physio assistants, and who just don't have the time to be at my beck and call. Then there would be the issue of me having to sit in place all day in a normal chair, with physio sessions maybe for half an hour. What do you think I'd do all day? Then I'd need the toilet, which I use in my room. I firmly put that plan to one side. While physically it wouldn't be a problem for me, socially it would be a disaster.

I'm at a paradoxical stage at the moment where it would be great for me to be practising walking all the time, but I'd prefer to be in a wheelchair. I can nip about then, minding my own business, undisturbed. When I've looked up wheelchair meme pages, there's always a post saying, "Who else hates being in a wheelchair!" I totally get it, as I'm all high and dry with my escape from the chair planned. I can make jokes, knowing I won't be in the wheelchair for ever. Fankly, it's a lot better than lying in a bed. (Even if the bed can go up and down.) Scooting around in a wheelchair can be quite empowering, especially when a venue goes out of its way to be accessible.

The wheelchair (it's called Hermes, by the way), sometimes cuts me up. Like today, I wobled in standing, because the wheelchair moved. Joanna caught my keel forward, but I had to be lowered to the floor because we were in a tight space, and the wheelchair was in the way.  I easily knew how to kneel and get back up, just the wheelchair was being awkward. The brakes on wheelchairs are such a pain. The chair still manages to move around with them on, but also the chair is impossible to adjust once they are on.

Another awkward thing I find is that in all disabled toilets, the drop-down bar for holding onto is always way too low down for me. Too tall, I don't even bother putting the bar down as it will let me down physically and emotionally. It's tough when a place is trying so hard to be accessible, but will still fail for me. I've really become a toilet connoisseur. I was very impressed by one that had a large ceiling hoist in it, and one which was a family room, so had a little loo next to the big one for someone's child to use.

Other news...I recently realised that there isn't an emoji on my phone of a person in a wheelchair. I'm shocked, I must say, given the unecessary number of sports and vehicles emojis. All I found was the accessibility symbol ♿ . Apparently, new accessibility emojis have been proposed for 2019. What a time to become disabled.

An introduction to my auto-biography written by my 14 year old self. I thought it would be good to start the book early incase I was hospitalised later in life. It's absolute self-infatuated drivel.

Interlude pt. 1. The Haemorrhage

Today mum, dad and I drove to Queen's Medical Centre for an appointment with a neurologist. I had had a repeat MRI done in March which the Leicester neurology team referred to a specialist who we were visiting for feedback.

On Saturday 22nd September 2018, at 11:00am, I got up and went to the bathroom. I'd had a drowsy morning after a week of early starts that Feshers' week, where I had been flyering for the International Café which our Christian Union runs. My third (final) year of university started on the Monday. I'd made sure my weekend was free, so I had plenty of prep time, and I had nothing planned for that day. Whilst sitting on the toilet I began to feel a bit sick. 'What was in those brownies I ate yesterday?' I thought. I'd had migraines before, and this sick feeling felt a bit like that but not in my stomach, it was a feeling in the centre of my brain. Migraines had always been behind my eyes. I went to brush my teeth, and got as far as squeezing out the toothpaste and raising the brush to my mouth, when my left arm just fell down by my side.

I put the toothbrush down on the edge of the bathtub, toothpaste and all, figuring I was going to be sick, and might as well brush my teeth after that happened. I went back into my room and lay down on my bed, left leg clomping along in a very strange way. On the bed, my right arm and leg started convulsing, but I remember still being able to grasp my left arm and thinking 'thank goodness I can still use my right!' I'd managed to put my paper bin next to my bed for when I was inevitably sick. I rolled to the side and threw up in it, then couldn't roll back onto my back. Then I had the worst throbbing pain I'd ever felt, deep in my brain. My vision went patchy kaleidoscope, but I didn't pass out. Next thing I knew, I was on the floor. I was somehow facing the other way from when I'd been lying, so I was flat on my back facing the door.

My right side was still banging about, but I could influence it a bit. I kept it going as a help cry. I couldn't cry for help as I suddenly couldn't move my mouth. I could make a horrible, strangled, dying sound that I didn't want to make, so I didn't. I couldn't move my left side at all, or feel my face. At least I couldn't feel the vomit on my face, or smell it. It was very frothy and not a lot. Maybe it was from my lungs, as I couldn't breathe voluntarily, but kept on taking ragged gasps. I kept wondering when they'd stop. They didn't. I thought, why am I not dead yet? I thought you blacked out if you had a seizure? I peed myself, which was the only relaxing moment. I kept thinking I should grab my phone, as it was literally charging on the floor right next to me. I could hear life going on as normal for my student house. Adam's girlfriend was leaving, then Adam was playing music.

Adam burst in, after about an hour, screaming "Liz!" He heard the awful breathing. I knew he would come, and would do all the right things. He checked me and called 999. I heard him copying my breathing over the phone. Next thing I remember, is the paramedics bursting in, then being in the Ambulance, then being run into A & E on a stretcher. A doctor was jogging alongside me shouting commands to the others. One medic checked my reactions by scraping my feet with something. I remember the tickle in my right foot. Then I was sedated. I woke up the next day in neuro-intensive care in the Royal Hallamshire. I'd had an interparanchyl brainstem haemorrhage. This type makes up 8-13% of all strokes,  and you are very unlikely to survive one. 

Today, the doctor (well, 'Mr.' not 'Dr.' which as dad said, means he's a surgeon), went through the scans I'd had over the last few months. You could see the residual blood had gone down a lot. He said the haemorrage was likely to have been caused by a cavernoma bleeding. This is a clustering of blood vessels in the brain, like a bloodblister, inside which is a cavity which can fill up with blood and overflow. They don't go away. Little is known about them. I have the one in the right of my brainstem which bled, and I was told I have another very small one in my left cerebellum. People often find out they have a cavernoma by accident, when they have a brain scan for something else. There is a miniscule chance of cavernomas bleeding. Where it has bled before, the risk of it bleeding again is increased, but this risk reduces, as time passes. I want to stress again how rare it is that a cavercavernomanoma will bleed.

Medical staff can't offer much help here. The cavernomas are so deep in my brain they can't do surgery without damaging everything else. There is a form of radiation therapy called gammaknife they do in Sheffield which the doctor will refer me too. I'm not keen though. It sounds like a big risk for something dormant. He will recommend a genetics test so I can find out if I could pass it on, as cavernomas are often genetic. He will also recommend a further MRI scan to show progress in my brain since March.

I reflected, I am way more likely to be in a road accident or to hurt myself in the house than I am to have another brain bleed. At least the cavernomas are only near my physical movement centres in the brain, and not my thought centre. If it's God's plan to use me with disability, that has to be okay. He cares infinitely more about the state of my soul than the state of my body. (Of course, he adores the body too.) He wants me to live, he can have me. I want to be okay with that. What a decision; to live each day to the full, or not.

I find the eyeballs funny. Brain scans are always chin shots, so the bleed (that white blob in the middle), is actually to my right.

34. Not A Toy

Soon I was moved out from the side room into the female bay. Maybe it was too disconcerting for staff, walking past and having me watching their every move. I was given the bed with the most wall space as a comprise for moving, as I was loathe to move my by-then heavily decorated wall (we'd made a card and picture display my dad was in charge of). They usually try to put new patients in side rooms, decanting the previous occupant into a bay. I actually preferred being in a bay. The other 3 patients were all seniors, and didn't really chat, but staff were always in and out (a nurse and health care assistant is assigned to each bay). That was a shade more interesting than looking at the toilet all day.

The occupational therapist in charge of me was called Lindsay. Every week we would do washing and dressing, where I would practise washing and dressing myself. What's that occupational therapy spiel? 'Helping you achieve independence.' Anyway, I was a two-to-one for this as I could hardly sit upright and was very wobbley, and you need 2 for hoisting. The first time I did w+d, it was with another occupational therapist called Sarah. She reminded me of Tigger in Winnie the Pooh. You might have thought he was scary because he is a tiger, but he is, really a bouncy soft toy. I only realised this when I got to know her. Her sterness was probably because I was a bit too excited at the attention, and laughing too much at my own inability to do simple tasks. I fear I provoked Lindsay and Sarah a bit, especially when it was time to be hoisted into my chair and I wanted to see if I could swing from the hoist. Heart attacks all round. You know, I was hoisted for a good few months, several times a day, and I never quite got over how fun I found it.

To be hoisted, a fabric sling is placed under you, by a process of you rolling. The hoist looks like a mini-crane on wheels with a coat-hanger like handle attached to the arm that the sling hooks on to. It's like being in a little cocoon, or hammock, as you go up, NOT a swing. Then you are lowered into the chair. When you're seated the sling is whippef out from behind you. Some people hate the feeling of being lifted, but I just saw it as a game. Gotta get your kicks somewhere. The ward had 3 hoists. I called them Sandra and Philip (married), and Wayne (their son). Wayne kept being stolen by the neighbouring ward, so I said he was off looking for a girlfriend.

My worst hoisting experience was when the staff tried to get me using a She-Wee. For those that don't know, this is like a shoe-shaped plastic container for women to pee into, like how men can use bottles. I'll leave you to work out how to use it. It was suggested because, as I sat out longer, I would have to be hoisted onto the bed to use a bedpan to pee, then hoisted back into my chair, often twice a day. (I became hyper-aware of how often I needed to pee, and timed it to exactly when it wasn't super busy, so 2 staff would have time to hoist me.) Using a Shee-Wee would save the faff, so I was keen to try it. (I had to keep telling staff how to use it, as most didn't know.)

The first time I used one, I used it in the toilet, and it worked fine! I was a bit shell shocked by the novelty, which Laura noticed, and laughed when I told her why. But then came an awful string of days where it kept going wrong. I pooed on it. 3 days in a row. I'm gonna firmly blame the eager administration of laxatives for this. I swear I don't need to poo every day, but not pooing makes doctors suspicious, and laxatives were liberally prescribed. (Laxatives are commonly prescribed for people who don't walk much, as then you aren't churning your guts by moving, so you can get a bit bunged up.) Something was up if it was 3 days in a row though. I kept thinking, surely that wouldn't happen again. It was very alarming to not have known I needed to poo before hand.

I told the staff what had happened and was quickly moved to my bed space. As they were getting the hoist ready, one health care assistant went to get supplies and the other readied the sling. However, the swinging end of the hoist swung forward and lightly bashed my chest. I was fine, but the health care assistant looked so concerned I immediately burst out laughing, and promptly wet myself. What a sight to come back to.

New (and last) bed space.

33. They All Turned Into Birds

It's a hard thing, talking about someone who has been affected cognitively by a brain injury. I've seen films where a character is affected physically by a neurological condition, but never one where it affects them mentally. There are things we simply don't act, and talk about. I won't even go into the fact that people with all kinds of disabilities watch all kinds of films that will never represent them, and the fact that there is no children's TV with a disabled main character.  You've got to hand it to Game of Thrones. It doesn't shy away from depicting disability, even if its portrayal is slightly problematic. Certainly, not a program for children.

It would feel wrong to try to describe how brain injuries affect different people. I am the only person in my centre who's had severe physical disability without mental repercussions.  It goes without saying that we must treat people normally and not patronise them. Everyone wants to be accepted for who they are, and treated like an equal. Lots of the people living here will live here forever, and some, like me, are here for rehab. I tend to fret about the others, especially when the therapy team are a bit overstretched. I need to chill out. I can't help the fact that awful things have happened to people.

I just read 'Circe' by Madeline Miller, which came out last year. It's about the witch Goddess Circe in the ancient Greek epic poem 'The Odyssey', and a brilliant re-telling of the story through her eyes. It made me remember there are a lot of permanent transformations in mythology, especially of nymphs into trees and animals. I love how contemporary writers look at ancient stories, and try and imagine what it would actually be like, how people would respond to the change. In my imagination, brain injuries are a bit like that. People change, and few change back. So.e of us are getting there, making life as normal as can be. I wrote the poem 'Brain Injuries' off the back of these thoughts, comparing brain injuries to people turning into trees or birds.

I've just had a study needs assessment for university, as part of getting Disabled Student Allowance. You have to go to a meeting to chat about how Student Finance can best support you (in terms of supplying equipment) in your studies. We worked out all the kit I'd find helpful for studying, which has now been recommended for me. I've also applied for a grant from the Stroke Association, who give general living grants for buying any kit you might want to get after your stroke. (I haven't technically had a stroke, but fall under that category). I've also got my blue badge for parking, a cinema card so my carer goes free, and have just applied for a disabled bus pass. Today I wrote to the council about the lack of drop-curbs around my centre. I'm on it. No Greek myth will happen here.

I can shade those eyes now.

32. I'm Still Standing

My room was one of the ward's side-rooms, not gender-specified. To the left were: the day room (where everyone else ate, meetings were held, etc); a female bay (4 beds to a bay); another side room, and the doors to the ward. To the right were 2 more side rooms, 2 male bays, the gym, the nurses' station and the therapists' office. Straight ahead were 2 toilets and 2 showers. Because I didn't want to watch the TV, I asked if I could just sit at the entrance of my room, facing the toilet. Exciting. One time, one of the housekeepers took me to do a jigsaw with her. I remember making the same corner section 3 times as I kept dropping it on the floor, and slumping onto the table as I couldn't keep my chest and head up.

I was sitting in my chair for about 5 hours a day, and this stretched to 6 and then 7. Thankfully, in neuro rehab they took my blood pressure (observations) at the start of the shift, rather than the end, so it was more like 8-9am/pm (not as disruptive as brain injury's ridiculously early morning starts). I used to have real problems picking my clothes for the day, when presented with the choice. My mum had bought about 6 cheap (but very nice) pairs of pyjamas (to be thrown away if necessary), and every top went with every bottom. Since I was wearing pyjamas all day, you'd think I would mind, but at this point, what I was wearing was the last thing on my mind.

My first night in the ward, I couldn't pee, and was kept awake by this fact from 2-4am, needing to go, but not able to do so. I had several bladder scans that night, which confirmed that, yes, my bladder was full. I found the scan far too interesting. It's exactly the same as an ultrasound, with the jelly and clicky noise and everything. I learned that everyone's bladder is in a slightly different place, and mine was quite low down, and to the left. During the scan, I kept asking if it was a boy, and when was it due. In the end, they drained my bladder by briefly inserting a cathata, then took it back out again. They said this wouldn't hurt, and it didn't. It just tickled a bit. Surprising. At least I was able to sleep then.

The therapy team were all young and cheerful. I met them all gradually. In those early days, I was seen by a senior physio called Nathaniel, and his student Laura. (When physio students go on placement, they are assigned to a 'senior' physio, following them around ike a padawan, or a baby horse). Laura was a friend to me, being my peer, and I loved a chance to have one-on-one gym sessions with her. I did a lot of lying on my back and trying to keep my bent-up knee from wobbling. I loved the opportunity to chatter away to someone. I have definitely talked more than walked this year.

I would be stood up on my feet, and Nathaniel would kind of crouch and hold my knees firmly together. There I would stand, wobbling. My PEG tube used to dangle down from my stomach, probably just a bit longer than a hand-span (I never actually took a picture of it), level with Nathaniel's face. I had real trouble not laughing, as it looked ridiculous. A grown man huddled over my feet looking up at me, with my tube hanging at his mouth, with Elton John's 'I'm Still Standing' playing in my head. Surreal. Good to be finally standing though.

Mum's birthday. So hard to hit a piñata someone's holding.