I wake up exhausted, and to be honest it ruins my day. I can’t concentrate, and I spend every spare second sleeping. It’s a busy day as well, which doesn’t help. I’m also frustrated as I’ve looked forward to this programme so much – hoping to learn a lot on it, and feel annoyed at myself when I feel I can’t fully take part in it.
The first session as always is stretch. As you remember lots of new people joined yesterday, and we’d all got to know each other the week before and feel comfortable, so there is an air of slight awkwardness. Throughout this session my nausea is playing up, and I take an anti-sickness pill. I tend to find my nausea (common with Ehlers-Danlos Syndrome) gets much worse when my fatigue is particularly bad. The other thing that gets worse is dizziness – so throughout feeling with the mixture of dizziness, fatigue and nausea – the session isn’t particularly fun and I have to keep taking breaks.
One of the new ladies unfortunately has an even worse time. She suddenly whispered to me she didn’t feel well and was going to get some air. She almost reaches the door when she collapses. The physios rush around her, covering her up and putting screens around her. We’re told to carry on, and when we finish the session she’s still on the floor. We see her a bit later and she says she just got incredibly dizzy and ill. I feel really bad for her.
Straight afterwards I have my first gardening session with Viv. It’s all adapted, with long handled tools, which is really awesome. It’s set out so you can sit at a table to work, and I re-potted lots of Snapdragons. I then watered them with a can you didn’t need to tip, just press the button – which is fantastic for those of us with wrist, arm or shoulder issues (or all!). The underlying emphasis of the session was about posture and pacing, so I had to regularly change position and stand, or walk every 10 minutes. She helped put my posture right, but was nice about it. I come out feeling positive and like I can get this posture thing down. (I struggle as I hold my body in certain ways due to the pain, so while it sounds easy, it isn’t always.) I also really enjoy the gardening aspects and find it soothing.
My next session is Intro to Relaxation and the tiredness just hits me. She says it’s just the theory behind it, and I think thank god, as I’d just fall asleep. The room is cold, uncomfortable and packed, so how we’d relax, I don’t know. She goes on about the benefits of it, and my eyes keep shutting. A couple of times I find myself jumping awake. I just need it to be over so I can lay down, but on it goes. Then she announces we will have a short try by closing our eyes and breathing deeply. I keep my eyes open, trying to read or do anything to stay awake, digging my fingernails into my arm! It was horrible. I hate that feeling when you just can’t fight it, but it’s not somewhere you can sleep!
Lunch is next, but I collapse into bed to sleep, and then eat my salad on my bedside table as I just can’t move. It’s quite all-consuming today. Next I have physio, and I was looking forward to playing on the Wii, but someone else’s physio had the same idea – and decided to use it for the hour, rather than share it. Instead I work on the shoulder strength and core work. She asks me if I feel whether we’re missing anything out. It’s want to say that I feel it would be nice if it was more hands on, trying to relax some of the muscles as well as just exercises, but I don’t feel comfortable enough to do that. I tell her my wrists are very sore, and she gets me to try on a wrist support, but it’s no good unfortunately.
Straight after I have Occupational Therapy with Lucy, who coincidentally enough has decided to look at my wrists and hands. She tests my grip with a machine and says it’s very weak, particularly on the right. We try on lots of supports, and pick one with wrist and hand support to order in which feels really comfortable and gives support without being too tight, and another which is like a tight glove. People with EDS often have trouble with their joints as their brain can’t quite tell where their joints are (called proprioception). After putting it on immediately my grip improves. It’s a ugly thing though! She is also going to look for something to help my elbows which keep locking in hyper-extension, particularly overnight, which is very painful. Finally, she is going to write to my employer to say I need a phased return.
Next up is Arts and Crafts and I’m not so keen – which is ironic as I love crafting. Again, they look a posture – which I’ve kind of had enough of today. Every time I move she makes me move back into the ‘right’ position, even when it’s painful. She goes to ridiculous and patronising extremes, and hasn’t a clue about pain and how it impacts on your posture. I come away wanting to sit slumped for the rest of my life just to spite her, rather than earlier that day with Viv when I felt inspired. A terrible way to go about it.
Finally, a break! Once again I collapse in bed. I hate these day-time sleeps, as I’m trying to get better sleep at night, but it’s impossible not to. I’m just leaving for my final session when one of the ladies in the ward faints. God, it’s the day for it! I’ve never seen the nurses move so fast. If you’re wondering why so many are fainting or dizzy – we all have a condition called Postural Orthostatic Tachycardia Syndrome, which is linked to Ehlers-Danlos Syndrome. It causes your blood pressure to rise as you stand, causing dizziness and sometimes fainting.
The final session is on Pain – why it happens, what it is, etc. Again, I would be interested normally, but I’m fighting to stay awake. It wasn’t a session I was originally down for, it was just for the Pain Management patients, not the Rehab, but my physio said she thought I’d be interested. They finish the talk, and the two patients point out they’d heard exactly the same talk the week before. They’re told they do the same talk each week, and they have to listen to it three times. How weird! I won’t be going next week anyway.
Tea isn’t great. Afterwards a few people have to walk to the nearest shop as they were still starving.
I set my jewellery out in the evening and make a couple of sales. I also start work on a bracelet commission. Just as we’re settling down, the grasshopper (or cricket or whatever) reappears again. Someone manages to grab it and saves another sleepless night. Yay!
I don’t know if today is meant to be day eight, but I decided to ignore the weekend!
Although having previously booked a hotel for Sunday nights, I didn’t have my first session on Monday until 10am, so we decided to stay at home one more precious night. I love being at home, but it’s a sacrifice of sleep! We were aiming to leave at 7.30am, but it was about 8 before we left, and by 9.30 I was getting worried as the traffic was pretty bad.
I arrived to a very full ward, with lots of new people. Some had replaced those that had left, plus we’d had some empty beds last week. I felt like the new girl, and very awkward to go and speak to everyone!
My first week I bought some of my beads to make jewellery, and I’d got lots of requests for different things, so I packed all my beads and some pre-made stuff. My pile of stuff is ever-growing! (See next week when I attempt to smuggle my cat in and hope no one notices.)
I suggested to my mum she stay for a couple of the sessions and see what they’re like. Family members are invited. My first session is the Weekend Review, where we discuss how we met the goals we’d been set. I did 5 out of 6 – the only one I struggled with was getting up early! But I still got up a lot earlier than I would have done normally.
The second session straight after was Anatomy and Healing. It was run by my Physiotherapist Rachel, and I found it quite interesting. I never, ever found science interesting at school, as my teachers seemed to have this awesome habit of taking a fascinating subject, and wringing out the dullness of it. It was interesting to have an overview of what makes up our joints, and what exactly goes wrong for us. One of the group members however, decided to be really interested in the session, and interrupted with a question after every one of Rachel’s sentences. Rachel tried to hint to her to leave it to the end, but it didn’t work.
Skeleton anatomy Credit: Melodi2
We then had lunch, where a spider (massive phobia!) decides to appear. A few people are scared, including me. The older lady in the ward, who caused a lot of problems the week before picked it up, but decided to wave in a few of the scared people’s faced. No one is impressed.
Afterwards my mum headed off and I had a physio session next where we worked on core strength. She said the next day I could have a play on the Wii fit and work on shoulder strength. She asked if I’d found the Anatomy session interesting, and I said I had – when questions weren’t being fired. She responded that she’d tried to hint, but some people just don’t get it. It’s the first time a staff member has commented on a patient, they’ll usually deflect, but you could see it had annoyed her!
Our final session is Foiling a Flare Up. I have a feeling I know exactly what they’ll say, and I’m right. They make the usual suggestions of heat, ice, distraction, relaxation, massage, etc. I explain that I use those techniques to get through every day. To me, a flare up is when nothing will help. They’re quite vague with a lot of their answers – someone explains they were once in a car crash and they developed severe pain afterwards. When the ambulance arrived, they were concerned until they heard she had Fibromyalgia and Ehlers-Danlos, and their attitude became ‘well what do you expect?’ They were asking advice on how to explain when they feel something is seriously wrong. They answer was ‘just be assertive’. But they clearly had been trying to explain and was dismissed. Someone said her doctor often ignores pain as part of her condition, and sometimes it had turned out she’d been injured and what could she do. The answer was ‘ask your GP.’
I pointed out my issue of having no tools when I’m flaring up as I use everything else to get through normal days. Their answer was to listen to music. Look, I’ve had this nine years. If music helped, would I bloody well be here?!
The girl in the bed opposite me decided to buy a jewellery set from me – a green heart with a spoon for The Spoon Theory. (Google it if you haven’t heard of it, it’s an excellent way of understanding how people live with chronic pain.) She’s been a fabulous promoter. I don’t think there is anyone in this hospital that doesn’t now know I make jewellery and she loves it! It’s really sweet.
Carrying on the usual Monday night ‘let’s make Jade not sleep’ fun – a grasshopper made itself at home next to my bed. While this may sound funny, it was horrible. The little bugger was so incredibly noisy every time we turned the light on, and although we saw it many times, it vanished down a hole when we tried to catch it. It woke me up throughout the night and early in the morning. We were also joined by two new loud snorers. Dontcha just hate ’em? I gave out all my spare earplugs, then managed to lose one of mine in the night! It turned up in the morning, but it was a very disrupted night.
On Thursday, I was talking to some of the people in the ward and was shocked at all the resources they didn’t know about. One is an older lady who uses a wheelchair, and pretty much stays at home 24/7. She can walk for small distances, and uses a manual chair to get about the rest of the time. The day before we’d played table tennis and bowling (a rough version of tenpin bowling) and had really enjoyed herself. For years she’s been locked in her home, watching people out of her window, feeling like they had a life and she did not.
I asked her if she would now consider going out, and she said she would. I said it was a shame she didn’t have an electric wheelchair/scooter, even just to go to the shops and have some independence. She said she did own one, but it was so bulky her husband couldn’t get it out of the house very easily, so they didn’t bother, and while she would love to look into local clubs that perhaps ran sports for people with disabilities, she didn’t want to have to rely on her husband to take her. I asked her if she’d ever used community transport – our local one is called Community Voluntary Services (CVS) that have cars or buses that pick people up for a small cost. Others have Dial a Ride. She’d never heard of it! I also told her our CVS Shopmobility rent out scooters and chairs, which she could borrow to visit a place.
She had also never heard of Disabled Facilities Grants, that can pay a full or partial grant to make changes around the house like level access showers, stairlifts – but the one that would benefit her is door widening and a ramp.
The other lady I was speaking to was desperate to reduce her hours at work, but was worried about the money. I told her I’m pretty sure she could get Working Tax Credit – if you get DLA your minimum working hours is 16, not 30. I also thought she may get some housing benefit and council tax benefit. We use the website http://www.turn2us.org.uk/benefits_search.aspx to have a look, and she will get them. Excellent! She can walk okay on a good day, but tends to faint and get dizzy a lot due to her POTs, a heart condition we both have, but affects her quite badly. I believe she may have a chance of getting a blue badge, as she struggles to walk on a bad day – and needs to be able to get back to her car quickly. She should also then be able to get a free bus pass, and a Carers Card, which allows you to take someone into a cinema, theatre, and many other entertainment places for free.
The older lady tells me I should run a session for people about all this practical help! I don’t know about that, but I may try and write a quick check list for people over the weekend.
Some of them seem to also be on a very low rate of DLA, when they should be higher. The difficulty is that by asking for them to look at you again – they can come back and take it all away. So the stress of that risk would put most people off, as you can imagine.
I wake up Friday morning, unable to move my right arm at all. The muscle is totally in spasm and locked. I spend half an hour unlocking my elbow, which is ridiculously painful. I can put up with most things silently, but it’s one of those that makes me want to scream but I can’t! I get it in a bent position, but it remains in spasm. I’m so shattered, and for the first time we don’t start until 9.30, so I decide to sleep in until 8.30 and skip breakfast.
We had agreed to give the birthday girl her gifts over breakfast, so I have to give her presents to someone else to give her while I sleep. I feel bad, but it makes me feel so much better. After getting ready, I see the birthday girl who says she loved her gifts. I’m so pleased, as it’s not nice waking up in hospital on your birthday, even if it is her last day.
Our session is all about reflecting over the week. We each have to say something we’ve learned that we will carry out over the weekend. A couple of people say it’s already been life changing. I want to say that, but I can’t yet. My pain and exhaustion are worse, even though I understand why they have to be. I’ve picked up a few tips from the sessions, but the main sessions start next week.
My grandad and dad are already asking me if I’m better now. The trouble is this isn’t a cure – it’s a genetic condition that I was born with. You can’t turn that around in a week. What I want to get from the programme is how to learn how to exercise without putting myself into bed afterwards or making the muscle pain worse. I also want to build up my sitting tolerance so I can go back to work. Get some strength into my shoulders, core and lower back. I don’t expect to be cured, just hope to improve.
A man on the other ward keeps giving me pep talks. Telling me I need to be positive, and that I have my whole life ahead of me. It has crosses over to annoying and patronising multiple times. I am trying to give the programme my all, while still being realistic. It then makes me feel like I’m being negative. He tells me a story about a family member with MS. She could walk short distances, but chose to always use a wheelchair and generally felt sorry for herself (as he put it.) He kept telling her she should walk when she could, even a little a day, as those who couldn’t walk at all would resent even that little bit of mobility. She kept refusing, so he picked her up out of her chair and kicked it away. She dropped to the floor and crawled back towards the chair, only for him to kick it further away. She finally reached it, sobbing and climbed back in. He told her she needed to walk, and she said she would, but he should never do that again. She however remained in her wheelchair, and within a few months lost her all of her ability to walk.
I really wasn’t sure what to make of this story.
So in the session, instead of getting into the life changing territory, I talk about posture, and wanting to carry on my stretches and things at home.
The takeaway lover is once again is incredibly negative, a theme throughout all our sessions. First of all his target for the weekend is sitting in a neutral sitting position for an hour. It’s totally unrealistic. You can’t go from having to sit one way due to pain, to jumping to an hour. My target is thirty seconds. It still hurts to sit that way for thirty seconds, as I have sat in a certain way to compensate for many years, but it’s much easier to aim for, and easier to build up slowly.
He’d been told by his physio his walking stick is too short for him, and he was given another one that enabled them to slowly build up the notches. It’s brand new, and has a smell of plastic. It’s been pretty much his only topic of conversation for two days – the fact it smells weird, and the handle is uncomfortable. People have suggested wrapping something round it, even getting a new stick with a derby handle – which are much more comfortable than straight ones. But he does nothing about it, and continues complaining instead. He also complains about the fact it’s a three week programme, because he normally does he shopping and clothes wash during the week. He said it would be much more convenient to him if it ran for a week, had a week off, ran for a week, etc.
The lady running the session said she felt a week away was too much, people would begin to forget what they learned, and a weekend is enough to get an idea of where help is still needed, without getting out of the rhythm. He disagrees, as it massively puts him out having to shop at the weekend.
Straight after I am meant to have arts and crafts. I can still barely move my right arm, and while the session says it’s about arts and crafts, it’s actually about posture while doing it. It’s the first time I’ve ever felt like I just didn’t want to go – for a start, I couldn’t see painting with an arm I couldn’t lift up much fun. I’m drained after the week, and while sessions are mandatory, which I completely understand, this isn’t a normal group session or one with my physiotherapist, it’s one I had opted in to. So I went to a nurse and asked her to give them a call. The nurse wasn’t impressed, saying I would be in trouble. The arts and craft lady said it was fine, and I saw her later when she bought down a piece of equipment my occupational therapist had recommended, and she just said she would see me the next week. I still felt bad.
Glass painting Credit: Sumi
That would have been my final session, so I slowly began to pack with my left arm while waiting for my mum to come and pick me up.
This week went really well in terms of the patients on the ward. There were the three shoulder patient who were all lovely. Two of them finished that day, and I will miss them both. They were very easy to talk to, and calming presences on the ward against some of the other stronger personalities.
While driving home I was telling my mum about the take-away saga from the night before, explaining how I’d paid for the pizzas on my card, and then they’d come and… oh my god! We gave them the cash again. I was standing right there, and just didn’t bloody well think! That £60 was all my money. We pull into a service station and I call Dominoes, but the manager isn’t there.
I sleep the rest of the way home, find my way to the sofa, and fall asleep again! I get a call from them to say they will look into and ask head office to refund me. Let’s hope so!
It’s lovely being home – I love the fact I can wake up without bright lights shining in my eyes, and the breakfast lady wheeling her cart in shouting “wake up Suzy” in the most out-of-tune way you can imagine. I love having my painkillers when I need them. No hospital food! And sweet cuddles from my cat, who I missed a lot. I even don’t mind when he kneads me on my face at 5.30am as he decides he wants breakfast.
I wake up feeling like I’d been hit by a bus, and they didn’t have my pain meds ready…again. I got them only 15 minutes before my first session, which isn’t enough time.
I couldn’t even get out of bed for breakfast (which I’ve been trying to eat while I’m in here as I usually don’t.) My first session was at 8am, which I can’t say I appreciated much. It wasn’t physical though, it was Psychology. We went through a list of some of things ‘troubling’ me at the moment, and she referred me onto an additional Pain Session, and wants to try and look at how stress increases my pain. At the end she asked me if I want more sessions. I find it difficult to answer, as I think we haven’t even touched the surface, but then I feel embarrassed to say that and worry if I say yes I won’t know what to say. So she suggests we don’t book anything next week, and see if anything crops up in week three.
I come back from Psychology with five minutes to get up to Stretch, but I find my wheelchair isn’t back yet. I flail for a moment, until the porter rushes in with it and I make it a few minutes late!
I have a gap before my next session, so I take the opportunity to sleep and finish the bracelet for the birthday present.
Then it’s onto Postural Management. They go over the basics of posture – you should sit so your weight is going down the centre of your spine, keeping the curves at the top and lower back. Ideally, you should sit with your feet flat on the floor, at hip-width distance. This is something I find very difficult. My lower spine is in intense pain all the time – and sitting this way makes it a hell of a lot worse. I have to sit with my legs crossed, slightly leaning one way, which puts my weight through my hip, rather than my spine. I explained this to my physio and she said while the other position is ideal, she understands the mess my lower back is in, and as long as I keep swapping the crossed leg over to stop one side getting stretched and the other ignored, she would be happy.
We then look at different chair supports, from hard to soft. I try them all and decide to borrow a JML Sit Right. It’s slightly springy, which I find better than the hard ones, and when I lean back my back cracks in a nice way! We then look at pillows. Most have the type that has a kind of roll for neck support on them, which I’ve found painful in the past. I try a Putnams pillow which is very comfortable – but everyone wants to borrow it!
I go back to the ward, and by the time I get there my back pain has increased from the back support. Damn, foiled again – I thought I’d finally found a support that may help!
The session runs over a little, and when I get back all the lunches have been served. I ordered a soup, but it’s not there. I go to the kitchen, and can’t find anyone. I wait there, standing too long, and a healthcare assistance asks if I’m okay. I explain the issue and he says they will still be cooking it and he’d sort it out. However, the cook arrives at that point to inform me they were out of soup, and I could have Macaroni Cheese instead. Unfortunately, I dislike macaroni cheese. Eventually she grudgingly agrees to give me a salad. I’m pretty annoyed they wait until after lunch is served to inform me they didn’t have mine, but it’s nothing new!
My next session is with Lucy, my occupational therapist. She sets my goals for the weekend with me, which include trying to sit in a neutral seating position (no legs crossed) three times a day for 30 seconds; doing my stretches once over the weekend and to sleep with a pillow between my knees which is supposed to help ease the lower back.
Our final session is swimming! I’ve been looking forward to it all week. It’s a nice pool, very much set up for people in wheelchairs. I’m able to use my wheelchair right into a changing room, and leave it there. There are a selection of frames and sticks that people can use to get right into pool. There are even wheelchairs that can go right into the water! The swimming pool is big and to get in there is a steady slope from one end to the other with handrails either side, so they’ve throught of everything. Normally I manage quite a few laps, but after one my neck burns with pain. By two it’s so bad I can’t continue. Instead I get a float and cycle through the water, which is a good one as it eases the lower back and works the leg muscles. Then I walk backwards and forwards, and enjoy the freedom of being able to do that.
This is not how we looked like swimming. Credit to plang
Next the saga of trying to order the evenings food begins, and it takes hours! First sorting out everyone’s orders – four of the boys want chinese, everyone else pizza. We get a quote and get the money off everyone for the chinese, but when we try to order it won’t go through online. We phone them, and despite it saying they covered us, they now decide they won’t. We try restaurant, after restaurant, and they either don’t deliver, or not to our area.
I finally get one that says they will, and start to put in the order. Item one – sweet and sour prawn balls. Oh, sorry, they say, we don’t do that. I can’t just pick another item as I have no idea what he likes, so I hang up and send someone to his ward to ask him. I then hit redial, and ask again for a delivery only to be told they don’t cover us! I get annoyed and say that thirty seconds ago they did, so what exactly has changed. He explains they’re actually another branch, and as the original was engaged – it goes through to another. But they’re in another area that doesn’t cover us.
I then manage to get back to the other chinese and put the order in. It comes to £10 more than the previous order. Again, someone is sent back to the ward to ask them for the money. Two of them already overpaid by £2, so they don’t want to put any more in. One did not have any more money on him he could possibly give. The fourth refused. This meant the female ward now has to cover the difference.
Next, ordering from Dominoes. We have a voucher for 50% – great deal! But it’s online only. I put everyone’s order in, and it says I have to pay by card due to the limit. I try to pay, but it says that as it’s come to over £100 I need to call the store to order. So I call them and explain I haven’t put any codes in yet, but it says I need to order through them, but I wasn’t sure how it would work with an online-only code. This causes massive confusion and lots of bad advice, before I eventually manage to get the order through.
8.30 arrives and so does the pizzas. We pay them for them, and head to our conservatory, which is attached to the female ward, and where all meals are taken. We plan to watch films and have the male ward over as well. We’ve had this planned since Tuesday.
We get in there, and an older lady from the ward is watching Coronation Street on her own very loudly. We all sit down and wait for her to turn it down, but she doesn’t. Someone then asks politely if she would mind turning it down as we have an event planned in the room (and she’d been pre-warned). She snaps back, “I’m watching it.”
“It’s just that we all want to talk,” she tries again.
The cantankerous ward mate replies, “And I will just turn it up.”
It’s so loud, it’s painful and I worry, as I wouldn’t be able to stay there with that level of noise, as it directly impacts my pain levels. Everyone decides to head over to the boy’s ward instead, so we all get up, every single member of the ward, young and old alike, and head over there, leaving her on her own. It’s a shame as the boy’s room doesn’t have a DVD player. We can see the girl’s conservatory from the boy’s, and about three minutes into our meal I see she has turned the TV off and leave.
It was very bad timing, and everyone is angry with her, as it was a group activity, planned days in advance. I’m afraid in these situations majority rules – you can’t always watch what you want to watch. It was late in the week and everyone had been pushed all week and was hurting, and tired. It was a good job we left really, as I could have seen a big argument break out, and a lot of us still need to live with each other for two more weeks.
We finish the pizza, and a DVD is put on in the conservatory, but I decide to have a relax on my bed and finish the earrings for the birthday girl. I’m very tired and done too much really.
The girl who had previous dislocated her shoulder mentions to me how bad her pain is. After the dislocation they’d pumped her full of very strong painkillers, so much it was wiping her out. However, they’d worn off – but she wasn’t due anymore. She begins to cry and I offer to go and ask the nurse for her. The nurse tells me she isn’t, but I ask her to come and see Kayleigh, as I hate seeing her cry in pain. The nurse does so, and basically says she isn’t able to have any for an hour, and they’d already pumped her full of stuff earlier, and that’s when she should have gone to bed.
A bit later she goes out for a cigarette with another girl, and begins to act oddly. She slumps over to the side and her eyes glaze over. I notice her weird shuffle as she returns to bed. Very quickly she begins twitching violently, and moaning in pain and getting very distressed. Two girls sit with her trying to help, by getting her to breathe deeply, and try to calm her down. I quickly go to get the nurse again, as this is much worse. The nurse is very snappy with me, telling me she can’t have any medications. I say I’m not there to get meds for her, but that I think she needs help.
The nurse grudgingly goes to see her, and realises something is wrong. She takes her blood pressure and her pulse is through the roof. She starts to gag and her stomach muscles are visibly convulsing. The nurse goes back to call a doctor, but she says she’s going to be sick. Someone rushes off to ask the other night nurse on duty for a sick bowl and I have never seen a nurse walk so slowly, as if she couldn’t be bothered.
The nurses kick everyone out, which I think was the wrong thing to do. One of them should have stayed with her as she gets very anxious and needs a lot of support. It takes until 2am to get her to stop crying out in pain, after they give her medication to stop cramping. We’re all worrying about her during this time, as she almost looks like she’s fitting at times.
Finally she calms, and the nurses tell her to try and get some sleep. They get the lights off. As soon as the nurses vanish, she jumps out of bed for a cigarette. Honestly!
It was a long day and I almost cry in relief when I can finally sleep.
I wake up feeling wrecked. Despite having slept, I feel like I shouldn’t have bothered. After a breakfast of cold, hard toast, we have a Stretch session. The physio that normally leads it is off sick, so it’s led by Marta, who normally runs the Arts and Crafts. She had made a girl in the ward cry the day before. She has never led one before – she’s very hesitant and a bit patronising at times, explaining things to a ridiculous degree.
Almost straight after we have Handling and Lifting, which looks at lots of ways to manage around the house. I really begin to flag, and I get a massive attack of noise sensitivity, particularly due to some of the loud voices in the group, but it’s hard to explain to people, so I just try and concentrate on getting through. We got lots of tips to help with housework and around the house. We learnt never to bend over to pick something up, or to get something from a low cupboard, but instead to stand as if your feet are in a box, with one foot on the top right of the box, and the other foot on the bottom left. This gives you a stable base, and improves balance. When you go to bend, you should lunge forward on your front knee. This takes the pressure off your spine.
We also learnt that the spine is in the shape of a lazy s, and the most delicate part of your spine is the top. Your lower lumber area has much thicker bones/discs, and is where all your weight should be, and why you should carry objects close to this part of your body.
Straight after that I have my Occupational Therapist. She sees me looking pale and rubbish, and asks if I need to lay down. I am so grateful, and she takes me to the OT bedroom. (They have each room, a kitchen, bathroom and bedroom to show you aids and adaptations to help.) I stay there for ten minutes to try and recover, then she goes through some adaptations she thinks will help me.
I have just under an hour before lunch, and I’m really feeling rough by the time I get back to the ward. I collapse in bed and have a sleep. This helps a lot. I don’t like sleeping during the day, as it impacts on night sleeping, but at the moment which such a new routine, that’s very active, I need to do what I can to keep going.
Lunch is another salad – we’ve all agreed it’s the only safe choice on the menu! Everything else is utter crap. We have decided to have pizza night on Thursday as a treat.
I have my physio session. We work on building up strength in my shoulders, my core and improving my balance, and I enjoy it. My left shoulder is particularly weak, and we spend a lot of time trying to build it up. Weirdly, the right shoulder then spends the rest of the night hurting, which is confusing! My physio is really nice and explains everything she does, and why she’s doing it. Others don’t have quite such good relationships with their physio, but I feel it’s really important.
The exercise balls in the physiotherapy room. Apologies for the fuzziness!
My final session of the day is Sports. They lay on badminton, short tennis, table tennis and bowling. They show us how to adapt sports to our needs – so whether it’s using wheelchairs, or perching stalls. I am as terrible at table tennis as I was at school when I was okay, so I have no excuse! I do quite well on bowling. We all then start a game of catch. It sounds simple, but it was very fun, with all the trainee physio playing, and the ball going everywhere and anywhere. I can feel my shoulders burn, but hopefully it built some strength up!
Afterwards, I find a porter, as my wheelchair is flashing to say it’s out of battery. He said he would be able to charge it, but he’d need it overnight. They take it, and I have to wait about twenty minutes for a porter to take me back (which is why I really appreciate my chair!). Someone who has been using the porter every day moans she can’t be bothered to wait for him to come back, so she’ll walk back to the ward. I think it’s interesting she can suddenly walk when faced with a bit of a wait. When I get back, she’s fine, so it didn’t even seem to impact her.
I spent the rest of the evening chilling out. We watch a film, and I get some jewellery orders – even from a guy on the male ward! It’s one of the girl’s birthdays on Friday, so the ward is clubbing together to buy some jewellery bits from me, as she keeps saying she wishes she had some money to get more than the one bracelet she did buy.
Overall, I think it was a bit too much physical activity in one day, although I enjoyed it at the same time.