by The Chronic Chronicles | Feb 1, 2012 | Daily Life, Employment/Work, Hospitals
I have a job interview next week, which involves a presentation (eek!). My work situation at the moment is dire, and this job seems perfect for me. I could have written the description myself. It involves planning a new service for older and disabled people – something I’ve been focusing on for some time in my current job and at Fair Access. I’ve spent weeks planning out and writing my presentation over and over. I have to map out how I’d carry out the project, my plan for sustainability and all my ideas.
But I’m due back to work next week, and both parts of the interview are on days I have to work (although luckily in the morning, when I’m due in at work in the afternoon.)
I’m dreading going back, it makes me feel sick. My employer hates me, and makes it obvious at every turn – because when they try and do something impacting my condition I don’t just say yes.
I’m fighting a battle with my local hospital as well. I’ve asked them to look into my lower back issues – as most other people with the same conditions I do, don’t have the same issues with walking that I do. Don’t get me wrong, people with Ehlers-Danlos or Fibromyalgia frequently feel pain on walking, or exhausted – but generally don’t have that strict oh my god the pain cut off point. There is an underlying issue there. My MRI (that took seven years of begging to get a) a couple of years ago showed some degenerative facet joints and arthritis, but both at a moderate level. At that point I could walk about 15-20 minutes. I can now stand for less than a minute. So my GP and I thought it very reasonable for them to look into it, maybe look at some treatment options (usually injections). But after a very dismissive assessment, they discharged me. I put in a complaint, and I got back the most ridiculous letter, once again dismissing me. So I need to keep battling them.
And finally, for a few days there seemed to be a bit less pain in my lower back, and thought it might be improving a little. And then it decided to say haha, you’re funny, and has been on fire for three days straight. I mean it always hurts, but this is just ridiculous.
by The Chronic Chronicles | Jan 28, 2012 | Hospitals
I wake to find my pain on the ridiculous side. My right arm is in spasm and I can’t move it much. My left knee is also being difficult, and generally the rest of my muscles are all moaning at me. The pain is a lot higher than my usual constant pain. The weather is miserable, which I guess it apt, but I worry about my wheelchair as I’m never quite sure how waterproof it is!
First up is stretch, which is okay. I would enjoy it if it wasn’t at 9am, and I tend to be quite dizzy for the first few hours I’m up. Straight afterwards I have a gardening session, which I enjoy. Viv, the lady who runs it is really nice and chatty, and I re-pot some interesting looking plants that are going to be put into baskets to be sold later in the year to raise some money.
Credit to: Colin Broug
The next session is Maintaining Change, run by one of the psychologists. We talk about reasons to keep going, and what may sabotage us. One thing that’s discussed are lapses and relapses. Lapses are where for example if you’re giving up alcohol, you have a drink , but then get back to it. A relapse is where you have one or two, think oh bugger it, I’ve ruined it now, and start drinking every day. Someone then suggests if you miss a gym session, but then rearrange it for later that day, it’s a lapse. I think bloody hell, I’ve got no hope if you’re going to be that stupid about it! (To me that’s rearranging, not lapsing.)
I then have a physio session with the student assistant, as my physio hadn’t left enough space for my session when booking them. I’m have to say I’m hesitant. She’s not qualfied, very quiet and unsure. It’s nothing against her personally, but it’s my last week I for some reason only two physio sessions have been booked, and one is being used as a training session. To me, the physio sessions are some of the most important. It’s not often you get to work with someone who has an understanding of your condition – and physios usually just give out exercise sheets.
My session consists of her trying to get me to walk around the gym, although I have to explain I’m having a flare up and it’s not going to be the best day for it. She spends much of the time with her head in my file with her plan for the session. I have to say I’m glad when it’s over and I hope my final physio session is better.
I also notice that my usual timeslot had been given by my physio to the older lady that had been causing a lot of problems in the ward. She doesn’t have a chronic condition – she has arthritis in one hip. It had been a cause of friction on the ward, as she’d been making comments to people when they’d had to rest after physio sessions or sleep during the day, along the lines of accusing people of being lazy. We’d all very patiently tried to explain to her that having one painful area is very different from a chronic illness where you’re constantly juggling tiny amounts of energy, and having to pre-plan everything you do. She’d reduced a number of people to tears.
She is also a very fit and healthy lady, who can walk miles at a time and even the pain in the hip was intermittent. So I have to admit I was frustrated it was her session mine was forfeited for, although it’s obviously not something you can say.
Next I have a dreaded cooking session with the one instructor on the programme that not one person ever had a good thing to say about. She’s patronising, and rude and takes things too far. She has no idea about EDS, and where as my OT is trying to build up my posture slowly – she whines if I move out of place once.
The cooking session is meant to give me strategies to help overcome the pain and fatigue is causes, but I end up really fed up. She keeps telling me how to cook, instead of looking at ways to help me (I know how to cook, thank you!) When I finally finish – having had to use just my left arm all the way through, which isn’t very easy when you’re right handed, and my pain not great – shaking with pain and fatigue, she says well you’ve got past the barrier you have against cooking now, so you’ll be able to do it from now on. Oh yeah, problem solved!
I crawl into bed straight after, but struggle to sleep – probably because I slept between every session I could as I felt so rough. This means tomorrow will be a bad day, as I just flounder under a lack of sleep.
The last few days blur together in a sea of fatigue. My final physio session ends in disaster as I spend the whole session in tears, due to the fact the walking issue keeps being pushed.
The programme wasn’t quite what I expected. Had I gone on it ten years previously the strategies may have been helpful. But now, ten years later – when I’ve had to put my own coping mechanisms in place I find the tone quite patronising and a lot of the staff unhelpful.
The major flaw of the timetable for me is that at home I’ve come up with ways that mean I can function at times – by resting at others. For example I don’t tend to do things in the morning, and if I’m doing something physical like an appointment or event, I rest the day before. The programme turned this on its head – with early starts, and a lack of rest times. This meant that I spent a lot of the time coping with flare ups, which goes against the principal of the skills taught. It also meant my attitude became quite negative and ‘moany’ as I couldn’t deal with the amount of energy needed just to be there.
The two things I loved about the programme is that I met some really awesome, inspiration people who I can count as friends. They got me through the bad times, and I hope I helped them through theirs. It was the first time in my life I’d met people with the same condition as me – something really hard to explain to those with no condition, or a more common one. You feel less alone in the world. The second thing I loved was the fully accessible swimming pool! I miss swimming a lot.
by The Chronic Chronicles | Jan 24, 2012 | Hospitals
The day begins with a weekend review. This is everyone taking it in turns to say how (or how they didn’t) meet their goals we have to set each week. I didn’t meet a couple of mine, but I imply I did, as I don’t want to start the weekly with a lecture! I spent most of the weekend doing absolutely nothing, but hey what’s wrong with that after such a packed week?
Next up is Anatomy and Healing. It’s almost exactly the same talk from the week before. I hate it when they do this – they repeat some of them and they are mandatory to attend. The session runs better than the previous Anatomy one that ran though!
New people have arrived for their programme, and we meet them better at lunch. They’re all a bit older and quieter than the last two weeks. After lunch I have a Wii Fit session, looking at balance. It’s really hard and I’m crap at most of the games but the Wii does make it more interesting than a balance board. I find standing very painful, but I have a chair next to me so I can keep sitting down.
Later on I have physio. We do a lot more core work, then she decides she wants me to do some walking tolerance. This makes my heart sink, as I’m quite walking intolerant, thank you very much. This is something I’ve explained to her at length. I get a feeling when some doctors/physios see you in a wheelchair, they believe you’re using it all the time. It isn’t the case – I try my best to walk when I can – even just a few steps. If I go over my limit I’m in agony for hours. This limit can differ – some days any walking is too painful, other times I can walk very short distances As part of this walking tolerance she encourages me to walk my limit, sit down, and then walk it again. We go to the gym based at the swimming pool, as the equipment in the physio room is very poor. (It consists of two broken exercise bikes!)
It pretty much looks like this.
We walk back from the gym and I really struggle. My hip goes into spasm and I feel awful. My physio then says cheerily that tomorrow we’ll walk further. I believe this to be badly judged.
Our final session is yet another repeat – Pacing. It’s very brief, but still dull. Yes, yes, we get it. Pace everything, except all those things where it’s impossible. I’m getting a bit negative now with this programme. It really isn’t what I expected.
I am exhausted and go to bed at 9pm, but two people on the other side of the wall to me are talking too loudly for any actual sleep to happen.
by The Chronic Chronicles | Jan 21, 2012 | Hospitals
I awake and am horrified to find that her arm is still dislocated. I had heard up until the doctor trying, and had then fallen asleep at about 2am. I had no idea she hadn’t been able to get it back in until she told me what had happened.
She’s now on nil by mouth, in case they need to operate to it get it back on. She’s white as a sheet and looks awful.
At 9am we have a relaxation session – really badly timed. It’s in the conservatory which has no heating and of course is nothing but windows. Everyone is tired, and I think everyone just falls asleep in the session out of exhaustion, not relaxation! It’s run by Michele, who I’m not the biggest fan of!
At the end the girl with the dislocation is swaying on her feet, and we take her back to bed before she passes out.
A doctor comes to see her, and says the shoulder physiotherapist wants to try to get her shoulder back in, and would be down soon. If he couldn’t, then they’d move on to other options. She’s upset, she doesn’t want the physios to continue messing about. Luckily her physio is off today, as she doesn’t get along with her, and the one looking after her is much better. They leave her for ages before coming and collecting her to take her to the main physio room, which is a massive room filled with in-patients and out-patients and only a small curtain for privacy. They make her listen to music for an hour to relax her, before Andre, the physio gives it a go.
He manages to get it in, but tells her the technique she was taught would never have got it in, it could only be done by pulling it outwards, then moving her arm across her chest. We’re horrified they spent the night torturing her with a technique that never would have worked, and encourage her to raise a complaint. Unfortunately she won’t.
The girl in the bed opposite was told the day before they’d messed up and while she thought she had another week, there was another space. A nurse then found her in the morning and tells her there is good news – a bed has opened up, as someone who was on a two-week shoulder programme now only needed one. She’s really excited, and the nurse goes to check with the rest of the team.
However, in the afternoon the nurse comes back and tells her they’re sorry, but someone had already filled the slot so there is still no space. Her emotions have been up and down, and we all felt so bad for her.
I say goodbye to her, as well as the girl who’d suffered the dislocations. I will miss them both. Pretty much all my ‘friends’ are leaving except one, who I really like – but her bed is on the other side of the ward so I feel a bit isolated.
But – I’m homeward bound for a weekend of chilling!
by The Chronic Chronicles | Jan 20, 2012 | Hospitals
I wake up feeling human and I’m not totally shattered, I don’t spend the day collapsing in bed every spare minute I have! Finally!
Stretch first. I get through it a lot better than the last two days, although I still have periods of dizziness and nausea. I can’t understand how I did all three sessions in week one with no issue, then have problems in each session this week.
I then see Lucy, my Occupational Therapist who takes me through to the kitchen to look at different items available. She shows me knives with handles to help support cutting, which are quite good. She explains I need to pick things like cutlery and pens by thick handles. It’s due to the fact my smaller joints are more prone to damage, so I need to put my larger joints to better use and thicker handles help this. She then gives me a catalogue of helpful items to look through, which has some excellent ideas – but I just can’t afford them!
My next session is with Rachel, my Physio and is all about setting my weekend goals. We decide on me practising relaxation at least once, to look at my desk set-up, to look at any kitchen equipment that might help, to do one set of stretches and one set of exercises and to look into getting a gym ball.
We are meant to have Nutrition next, but the lady who does it isn’t there. A nurse takes the session instead and she does it by reading the words on the sparse slides, and then saying she didn’t know the answers to any question asked of her. I’d rather they just cancelled it and put it on when the person was back!
When the girl in the bed opposite me saw her consultant, he put her down for the three week course, but when she got her letter, it said two weeks. When she arrived they said it was an error, but they had no beds, unless someone cancelled. Someone did cancel, so early in week one she was told she was okay for the three weeks. Just before we go into nutrition a nurse walks up to her and says ‘we made a mistake, there is no bed, but oh well, you thought it was two weeks anyway.’ She said it so blasé, and then just left. Unfortunately she’s gutted, and leaves lunch in tears. We try to help, but leave to give her some space.
We have work support next and again, I learn nothing new. I’m getting a bit annoyed with these patronising sessions, that says things like do you know about Access to Work? Yes… Oh right, well I have nothing more to tell you. I just expected so much more.
The questions are dominated by our resident grumpy man, who hasn’t worked for nine years. People that do work and are asking for relevant advice, is rudely interrupted constantly by him. The instructor says nothing, so I interject on her behalf. Honestly, he’s like a child.
Half way through the girl who has just found out she can’t stay leaves, and doesn’t come back. After we find she’s locked herself in the toilet and is retching. Her physio comes to see her, and says she’s shocked, but there is nothing she can do. She says they will try and arrange it so she can comes back in for two weeks in about four months time.
Finally, we go swimming. I find it easier than the week before, and my neck holds up longer. I also do walking backwards and forwards, ‘water cycling’ and some leg exercises.
We have another pizza party with some of the boys from their ward over. We head back to the ward, and a group of us are sitting around my bed when the evening drug round starts. The girl who dislocated her shoulder the week before is standing talking to someone when the drug trolley passed her, and the nurse accidently bumps into her. I saw her react, but she didn’t make a noise. When the nurse has moved on she says she thinks her shoulder is almost out, but when we look we can see the bone is out and it’s a full dislocation. It was as easily done as that. L
She says she needs her strong medication to take straight away, so it can start kicking in ready for the bone to be put back in place.
She isn’t actually on the same progamme as us – we’re all on the rehab or pain management programme. She’s in purely for the shoulder specialists to teach her how to put it back in after dislocations, which she finds very difficult. She had a plan in place, which involves the strong medications, and getting her to get her arm up above her head, and bringing it back down in a specific way.
I go and tell the nurse it’s dislocated and she snaps at me, saying she knows, and there is nothing she can do. She couldn’t have known, having left the room, and there was a lot she could have done. They eventually give her the meds and leave her to it. Her shoulder has been dislocating for five years, and she’s never been able to get it in. She waits and hour and the medications don’t help the pain at all.
Medication Credit: Zomb kille
One of the girls who is new to the programme this week, is also an accident and emergency nurse. She’s horrified they have just left her to it, particularly because the doctors put her shoulder back in the previous week it stretched her Ulnar nerve, which left her unable to move two of her fingers, and was already in a lot of pain. She goes to speak to the nurses and asks them to provide her with some gas and air so an attempt can be made to put it back in. She is told there is no gas and air kept at the hospital – which we know is a load of crap as she had it the week before!
One of the nurses – Mary, comes back into the ward, and someone asks her whether she was aware it was the drug trolley being moved that dislocated it in the first place. Mary turned to her and screamed, “No it wasn’t! The trolley didn’t touch her, it’s never touched anyone! Don’t you dare say that.”
She leaves and comes back a few minutes later. The same girl tries again, and says she thought they should know as she thought as report should be filled in, but the nurse responds rudely and sarcastically.
She leaves the ward and she is overheard saying “Do you know what that they’re saying? That we banged into her! I don’t know why she is moaning because she walked into it herself.”
So suddenly the story had changed to she walked into it. Interesting. There were three witnesses, plus the girl it happened to!
People begin to head to their beds as it’s getting late, and we advise the girl with the dislocation, as horrible as it may sound to give it a go – and if her pain worsens and she begins to get hysterical so be it, perhaps they will take notice. She does try and can’t even move her arm. A doctor suddenly arrives and closes her curtains. We all have to listen for the next few hours as she tries to coach her through doing it herself. She’s screaming in pain, but manages to get her arm up over her head a millimetre at a time, and then can’t bring it down as she was taught. The doctor goes and magics up some gas and air and wheels it next to her bed. She then says she can use it if she wants – but if she does they will discharge her and not be interested in working with her again, as it’s obvious she isn’t interested in trying the plan. I’m so angry – as she has tried. It’s complete and utter blackmail – let’s put pain relief next to someone in agony and tell them they can use it, but with massive strings attached. I hear her respond that they will work with her, because she is trying, and I’m so proud of her as she doesn’t usually stand up for herself. She uses it, and manages to make her arm go the final downwards motion and nothing. Nothing bloody happens. Hours of torture, and the shoulder won’t go in.
The doctor then goes and phones the shoulder team to ask what she should do – whether she should leave it out when she already has nerve damage. No, absolutely not, they say. Get it in.
She comes back and tries three times using the method the physio said she had to use, and it won’t go back in. They then leave for the night with it still dislocated. She doesn’t sleep all night.
by The Chronic Chronicles | Jan 19, 2012 | Hospitals
Once again it’s not a great day physically. Yes, I know this is a reoccurring theme and it’s dull! I can’t function in the morning though, but drag myself out of bed until one of the girls in the ward tells me I’m mad, and to get back in bed. There is a strict ‘you must attend sessions’ theme, and we’ve all worried all week that if we put a foot wrong they will kick us off, but doing something physical is just completely impossible. A message is sent to the physios running it that I can’t make it, and I fall asleep.
I wake an hour later to the doctor by my bed, checking I’m okay. A bit embarrassing they actually sent a doctor, when this is a quite normal part of the condition.
The sleeping helps, and the next session is relaxation. I’m able to follow it better than the day before and the technique used is called progressive muscle relaxation. You take each muscle in turn from the toe to the head and tense them, then relax them. It’s an interesting taster, but the results would be better at home somewhere in comfort. We’re just on normal chairs – and I tend to need full neck and head support to achieve relaxation.
I then have arts and crafts and continue glass painting. I still find the lady that does it very patronising.
Next up is cognitive therapy, with the theme on stress. No information is given that I would actually find useful on a daily basis. After the session I head back to the ward to sleep again. I wish I could get through a day without this.
Later on I have physio which I enjoy, but straight afterwards we have an hour of sports which is too much at once. My shoulders are in spasm from overworking it in physio, and every sport they have is based on arm movements – table tennis, short tennis, badminton, catch. The physio with us is interested in getting new things, and we suggest more lower limb based exercises (while remaining seated), and possibly something like mini golf which is more of an underarm movement. I play a game of table tennis with a member of the group and it’s much better than the week before! We end with a session of kicking a massive football to each other.
Table tennis Credit: Mishahu
My dad comes to visit me around 5pm, with the idea of going to the friends and family session. I was really pleased they were putting this on, as I hoped they would help explain my condition to him which I have struggled to do. Instead I’m told ten minutes before he arrives “It’s cancelled. Whoops, didn’t anyone tell you?” and so instead we go to the cafe next door for dinner. On the menu they have burger and chips, and that’s it. We order two of them, and are told they only have one. It’s actually worse than the hospital food!
He only stays for about an hour, and I then go straight to bed and am asleep by 8pm. It’s the best night’s sleep I’ve had so far.
by The Chronic Chronicles | Jan 18, 2012 | Hospitals
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!
by The Chronic Chronicles | Jan 17, 2012 | Hospitals
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.
by The Chronic Chronicles | Jan 13, 2012 | Hospitals
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.
by The Chronic Chronicles | Jan 12, 2012 | Hospitals
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.
Not impressed.
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.
by The Chronic Chronicles | Jan 11, 2012 | Hospitals
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.
by The Chronic Chronicles | Jan 10, 2012 | Hospitals
Our first session wasn’t until 9am, so I set my alarm for 7.20am to give me time to get ready and have some breakfast. At 6.30am they put the incredibly bright lights on, that made the eye mask useless anyway.
The bathroom is very much like swimming pool type ones. A bit skanky with pools of water everywhere, and you just want to be in your own nice clean bathroom! The sink and toilet were blocked. Yuck. I should actually report that. But I probably won’t as nurses are a rare breed around here.
Breakfast consisted of cold, hard toast and cereal, but I felt incredibly sick anyway. After that we had a stretch class which is a very gentle class to try and help get our joints moving.
Straight after that I had a session with my Occupational Therapist. She discussed any adaptations/gadgets I need that may help, and talked about my work situation. She said she could write a letter of support for me. She also referred me for Arts and Crafts sessions, a ‘kitchen’ session to look at gadgets that can help there, and finally gardening. It’s not something I’m particularly interested in, but it’s something to do!
Back at the ward, a nurse came up to me and asked me if anyone had measured my leg length. I said said no, why? She said she would do it. She went and got a tape measure, and I asked again why. She chatted away, but still no real answer.
Later on she bought me over some support things, to help with pain/stopping clots while I’m in here. They look horrendous. I put on my longest pair of trousers to cover them up! They are quite uncomfortable.
Lunch this time was ham salad, which was really nice. I then had free time until 2pm when I had a physio session, so I got some sleep.
They seem to be very slapdash with medication. Some didn’t get any, and I got mine at random times – which I then hoard until I should take them! We all have a drawer of our medication which they keep locked. Yesterday a nurse forgot to lock mine, so I’ve been keeping it quiet so I can just take mine as and when.
I was just leaving for Physio, when the desperate man rushes into my ward, asking me if I could get him numbers for Chinese and Indian Food. I wrote down four, just in case, as he looked like he would cry if they couldn’t deliver!
I then have my first physio session. I’ve been assigned a trainee who watches my sessions. I find it a bit annoying. She does something, gets it wrong, and is then corrected again by the physio, Rachel. Rachel’s very nice, better than other physiotherapists I’ve had. She assesses me and decide which are the weakest areas we will work on. The main ones are lower back, shoulders and balance.
Annoyingly, after this session my pain is set off – particularly in my lower back and shoulder. I’m up-to-date on every painkiller, so there isn’t a lot I can do.
A bit later on I find the girl opposite me in the ward in tears. She had just had an arts and craft session, and the person running it had spent the whole time criticising her posture, and making her stand up and down to get it right. She was upset by the experience and left in pain.
One thing the whole programme emphasises is that they don’t want to make pain worse. In physio – they don’t want you to push through pain; they want you to stop before it gets there. I am very surprised at this ladies behaviour, and ask my ward mate if she wants to make a complaint. She says she doesn’t, but later on I hear her mumble ‘horrible woman’ to herself. I do wonder what exactly happened. The lady in question had done our welcome talk and was outwardly friendly, but I do remember getting a vibe from her that I didn’t want her to be my therapist. I am now worried about my own arts and craft sessions!
It’s all drama later on when a girl on the ward with bad shoulder problems is getting into bed and hits her shoulder against a table. She was in tears, while everyone rushed around her. The Health Care Assistant (HCA) came rushing in and helped her to take her sling off to see the damage. It was visibly dislocated. She was in so much pain at this point it was making me cry.
The HCA went to find the nurse, who came back to say her dislocation plan hadn’t been sent over, and the doctor hadn’t come over to prescribe her painkillers despite them having been phoning him constantly for two days. So while she would normally have something very strong on hand while she waited for it to be put back in, she had nothing. The nurse kind of stopped there, as if to say so what can we do.
Credit to adyna
I got quite annoyed and said they could in no way expect her to wait all night with a dislocated shoulder. She said she would try and get hold of the on-call doctor. TRY!
We all started causing a fuss, and she upgraded it to an emergency call out. Two eventually came, pumped her full of all sorts, as well as gas and air. We all had to listen to her scream as they put it back in. She was incredibly brave, and spent the rest of her evening swaying on the spot, stoned out on all sorts.
I had a much, much better night sleep. It was quieter and darker, and the night nurse got the hint!
