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.
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!
Today is finally the day I go into hospital for Intensive Rehabilitation. It’s a multidisciplinary affair, so lots of people try and help you all at once over the three weeks, instead of the normal few physiotherapy sessions here, a nurse visit there which doesn’t tend to work.
I wake up at the hotel at 6.20am. We’ve been here twice before as it’s close to the hospital, and will be here each Sunday night. It’s the first of my early starts of week, and I feel sick and exhausted. Breakfast is at 7am and I need to eat something, despite the way I feel, as it’s going to be a long day.
Traffic is bad on the way to the hospital and I begin to worry. We arrive at about 8.15 after being told to arrive at 8.30 and a nurse shows me to my bed – which is on a sectioned bit of the rehab ward, opposite another 24 year old with very similar conditions to me, who has had it for two years.
We’re kind of left to it. I have four small drawers – the top one has a lock, which I’m glad for so I can put my valuables. There is a higher cupboard next to it for some clothes. I find out since I had the introduction the hospital has put in WiFi, so I pay for a month and am very relieved!
The female ward
A nurse then tells me I need to put all my medication into my drawer with nothing else so they can lock it. I need to ask every time I need my medication. I understand why, but find it frustrating as it means I have to remember before every possible session whether I need to collect my painkillers. I also feel like a bit of a child. “Please nurse, can I have my medicine?”
The first session is a Welcome Session, which just goes over the basics. There is one man on the programme, and four other women. Three of us have Ehlers-Danlos Syndrome, which is nice – I’ve not met anyone else with it. They tell us you must attend all sessions. The different teams are Physiotherapists, Occupational Therapists, Consultants, Health Psychology and nurses. Our timetables look a little sparse at the moment – but we’re told our individual sessions still need to go in, and we will have one-to-one physio daily. I see we only have one swimming session a week timetabled in and am disappointed, as I love swimming and don’t often get the opportunity. We’re told if the physio agrees you can have access to the pool and gym alone. I write it on the back of my hand so I don’t forget to ask the physio this afternoon!
A nurse nabs me for a blood pressure test, just as the health psychologist arrives for our session. He asks that the nurse does it afterwards. I HATE blood pressure tests as I find them incredibly painful, so I’m relieved. I hope to get away with it!
We have the session with the Health Psychologist. He goes over behaviour and how we act to one another. He says they often have problems with two people on the female ward falling out. On the male ward they often get two men competing and pushing themselves too far. Afterwards I request some sessions with a psychologist.
Finally, it’s lunch time. Today they just bring out sandwiches, and some fruit juices. Someone grabs the only apple juice, which leaves the orange I’m allergic too, or pineapple. I take the pineapple, and find it causes a reaction anyway. I ask the catering lady whether she can put aside an apple juice for me in future, but she doesn’t seem to grasp my request due to a language barrier. I consider it lucky my allergy is not life-threatening, just an annoying asthma attack.
The nurse pounces on me after lunch for the blood pressure test – damn. Then he says he needs to do it twice as I have Postural Orthostatic Tachycardia Syndrome. My arm throbs for ages after.
We have free time afterwards, with my first Physio and Occupational Therapist (OT) session at 2pm. I have a porter booked, although I can use my chair to get there to show me the way. I am told he will be there at 1.50. Luckily I decide to get dressed early, as he turns up at 1.25. I have a panic over getting the wheelchair to work, before I find the stray plug that’s come out.
My physio and OT are both nice. They both seem the type I could say if I wasn’t comfortable with. The OT says she wants to discuss my problems at work in-depth. I ask the Physio for permission for using the pool by myself and she says of course. She asks me to wait for my first session on Wednesday, to ease me into the first couple of days, and then I will be free any time. It’s heated – yay!
My final session of the day is Pacing. It’s all about finding your baseline level – which should never be measured in pain, but in time, distance of number of activities. So taking housework as an example, if you can just about dust one room then your pain increases, you should dust half a room at a time. When you’ve done that for awhile and feel comfortable, you should add 10% to that. Again, get comfortable with this – and try and add a bit more.
I think it’s something most people with chronic pain do – break tasks down to manageable levels, although many stop when it actually hurts rather than before which I suppose is key.
I just find it quite impracticable for day to day life. You can’t do it as work properly, or avoid things that hurt all the time. The one guy on the programme said he doesn’t have constant pain as such, but very intense short bursts in certain positions. Uneven ground causes his foot to go into that position. However, you can’t avoid it all your life. Sometimes you need to go to a hospital, GP, wedding, friend’s house – anything! You can’t just say no, there is an uneven floor.
The food for our evening meal was very mixed. I had a lasagne, which was okay. Edible. Others had congealed pasta, rice pudding with a skin on it, and other lovely things!
The one man on the programme asked at pretty much every meeting where he could get takeaways from, and how to get to the nearest restaurant. I kind of get his point. Hospital food may be better than it used to be, but I started struggling for options when choosing for day two – so in three weeks I won’t be impressed!
It went very downhill come night time. I was very tired, so decided to get an early night – which I thought would also help come morning. Mum had bought me an eye mask and earplugs, as I have been terrified about not sleeping. I really struggle to sleep unless it’s pitch black, and totally silent. Even so I figured it wouldn’t be that bad. The girl in the bed opposite was snoring so loudly the whole next section could hear her, although she was nothing compared to the noise from the rest of the ward. They had no concept of talking quieter come night time, even when people started drawing their curtain to sleep. Others had on films. The lights were really bright. I turned off the light in our section, so that became not too bad with the mask on, but my earplugs barely blocked anything. People were going in and out of the doors to the toilet and letting them slam shut.
I was finally drifting off to sleep when a nurse pulled back my curtain, making me jump. She informed me she was on night duty, and to let her know if I needed anything. I had clearly taken my eyemask/ear plugs out, so she must have known I was asleep. I mumbled I didn’t, but thanks, and was just drifting off again when again she opened my curtain again and asked if she could photocopy my timetable. I said yes, then asked if she was going to wake us up every night. She seemed surprised, and she said wouldn’t.
Not taking this massive hint, twenty minutes later my curtain opens again and she brings it back, again, without any concept of quietness. Why an earth would they decide they needed copies of something they gave us is in the first place when we’re asleep?!
Overall, a slow, tiring day, with not a lot done. Just lots of introductions, and assessments. The hard work starts tomorrow.
Next week I am going into hospital for three weeks, for intensive rehabilitation and pain management.
My Ehlers-Danlos Consultant recommended it and I’ve been on the waiting list for a year. Traditional pain management can be quite sporadic – a session of physio here, looking at medication there and seeing a therapist when it all gets too much a few years later – but on the programme they try and cover everything in the three weeks. They even have craft and gardening sessions as additional sessions.
I’m half excited, half terrified – although the scared bit is about all manner of stupid things. I’m looking forward to learning the proper way to exercise that doesn’t cause damage to my joints, and spending time with people like me. Someone I know with Fibromyalgia went on a similar programme and can now stand longer, and has reduced her medication. So I’m hopeful.
However, the thing I’m worried about most? Sleep. I know, I know, it’s pathetic. But sleep to me is one of the most important things in the world. Because of my exhaustion, I tend to sleep for a long, long time – 12 hours or so, even if it’s not all great quality sleep. My room needs to be pitch black, and completely silent – no clocks allowed, lights covered up. I wake easily, and if I don’t get those 12 hour sleep – I’m a mess. I haven’t been up early, except on a rare occasion since July, when I had to go onto sick-leave, and the programme requires 7am starts. The thought makes me feel sick, because when I get that tired – I struggle to concentrate and my energy depletes, and this is my one chance to try my hardest to get better.
My lovely mum has bought me earplugs and a sleep mask to try and help with the noise/light, but I’m not sure I can sleep with earplugs as they make me feel very vulnerable. But it’s worth a go! My other big worry is about pain. I pay for two treatments a week from a McTimony Chiropractor who also does deep tissue massage. It has been the only thing to ever help with pain relief. And I have to give it up for three weeks. What if I can’t do anything as everything hurts too much? When the pain gets that bad I can’t concentrate, and focus on things. I also hope I’m not going to be the only younger one there – which isn’t a big deal, I suppose – but it’s always nice when you feel a less of an anomaly.
So they are my worries. I hope they are silly and come to nothing, and I really hope this is the start of something really positive. This year I wish to have condition improve lose weight, and get a job I love. That would be a perfect year.
Hope. Credit to Robert Michie
I haven’t updated in awhile, because I think I’ve been in a bit mentally exhausted. I seem to have something on every day – whether it be medical, or the voluntary work I do for on disability access – I could do with a break, but the show must go on!
I had an assessment at the Royal Orthopaedic Hospital to see if they will accept me for their three-week inpatient pain management programme. It was a bit of a nightmare with my electric wheelchair wheel dying just as we got to the hospital, only for them to say we’d been sent to the wrong building anyway. I had to wait for a porter to get me – who came half an hour after my appointment time. I have to say my anxiety levels hit the roof and exploded through.
It does involve a shared ward which is quite a worry, as I can’t deal with light or noise and sleep very lightly, so other people snoring is a big worry and not being able to go to bed when I’m shattered as we have to be up at 7am which is going to cause loads of problems for me!
Credit to Melodi2
In other news our local council are making plans to make the High Street buses, taxis and motorcycles only. This is causing a lot of concern as this is the road a lot of blue badge holders park along to access the town. It’s also going to cause mayhem in all the rest of the town, as when one part closes it causes deadlock.
I’m on the committee of the local access group – just become acting Chair, in fact. I’m trying my best to get the council to reconsider, or even just to respond to my emails – without much luck. I was feeling a bit alone, until yesterday when there was a flurry of supportive emails from people including councillors. Then yesterday I made a speech at the local cabinet meeting on the issue – which is quite funny, as I’m the person that skipped most of English in year 9 to avoid giving a talk, but it went pretty well.
It seems to have made some difference with the right people getting involved now. So here’s hoping we can make a bit of a difference here.
Most suffers of a chronic illness will tell you how difficult it is to get a diagnosis. The first difficulty is often the doctors, who simply may not know. So many conditions have overlapping symptoms and tests don’t always get to the root cause quickly. Often it takes a doctor that will look at the whole picture, not just run a blood test here and there. I recently heard of a woman whose local doctors wanted to take her thyroid out, believing it to be the cause of her issues. It took a consultant in London who finally ran the correct scans to find out the problem was with her heart, and could be corrected with medication – scans that could have easily been done previously.
Other doctors may be unwilling to commit to a name of condition – perhaps through fear of being incorrect, or other reasons. Some think giving a name of a condition is branding the patient with a ‘label’.
When you’re so unwell it’s impacting your life, the vast majority of people want to know why. They want a to find out what’s wrong with them so they can research their own condition, or join a support group, or simply so when people ask what is wrong with them, they don’t have to shrug and say ‘your guess is as good as mine’.
Woolly symptoms like ‘pain’, ‘fatigue’ (and I’m sure you can name a million of your own) are hard to explain to people, when you’ve cancelling a night out for the fourth time in a row, or taking more sick time from work, or even applying for benefits. Everyone has those symptoms at times, and it’s hard to understand what it’s like when they become an every day occurrence, or never go away. Or when the pain or fatigue become so crushing you can’t function.
Another problem with chronic illnesses is making sure you’ve got the right diagnosis. Due to the aforementioned intersecting symptoms, it can be hard to pin down exactly what’s wrong with you.
For example constant pain, fatigue and cognitive impairment could be down to a virus, or ME, Multiple Sclerosis, Sleep Apnoea, Hypothyroidism, Lyme Disease, Lupus, Fibromyalgia, Depression, the Flu, or something else entirely!
In an ideal world a doctor would come up with a list of everything it could be and then rule each one out with tests. But it isn’t an ideal world, and doctors are often constrained by time, budgets or equipment. Their personal prejudices may come into play. If someone who is slim presented those symptoms, they may take an entirely different approach to someone who is overweight. Many of my grandads’ ailments have been dismissed with ‘it’s your age, it happens to everyone’ and similarly doctors point at my weight as the problem – rather than seeing someone who has put on weight from being unable to exercise and comfort eating due to pain.
If perhaps I’d been listening to when I was ten years old and complained my limbs hurt, and my knees and ankles kept giving way, they would have discovered I was hypermobile, and given me the correct treatment to strengthen my joints. Then it may have been I wouldn’t have developed chronic pain and Fibromyalgia. Or perhaps I was destined for Fibromyalgia no matter how many stretches I had done as a child. I don’t know.
It took me until the age of 23 until I finally saw a Consultant Rheumatologist who spent time thoroughly looking at my history and symptoms to diagnose me with Ehlers-Danlos Syndrome, Fibromyalgia, Myofascial Pain and Postural Orthostatic Tachycardia Syndrome.
I have seen so many other consultants who were dismissive, or shrugged their shoulders. One doctor even said I was Hypermobile, and then a year later forgot he had done so and declared I was fine without reading my history.
Finally, I’d like to point out that many people in England do not realise that they have the right to be seen at any NHS hospital in the country. You do not have to go to the nearest, or the one your GP decides to send you to. If you hear of department in a specific hospital that seems to do a better job than your own – you can choose to go there. You cannot demand you see a specific doctor, however, but you may request to do so. I’ve often found I can see the doctor I’d like by simply waiting longer.
Please keep fighting for your diagnosis if you think something is wrong. Don’t give up.