Frustration. Credit to Staci Becker
I don’t tend to cry. I mean – give me a sad film, or book and I’m sobbing like nobody’s business. But in pain, randomly when it’s all just got too much? Not that often. (Although let’s take my last year of work out of the equation, because dear god I was a mess.)
But I have cried in my last three appointments, and all three times it was around the same topics. Frustration at the “system” and exercise.
The last few months have been tough for me. My condition seems to have gone into haywire, insomnia has struck big time, my pain levels are pretty damn ridonkulous and I’ve been pretty much stuck in the house. It’s always tough when you have a flare up, because of the fear this is your new reality. This is the next downward slide, on a slide that’s been pretty slippery for the last eleven years. At the same time there has to be hope. Sometimes I pin it on myself – I’m going to try this supplement, and do these new stretches eight times a day until every muscle in my body is strengthened and then…
And then I’m doing the most basic of basic stretches, and put my joint out, and I’m lying on the floor with half my body shaking in spasm, trying not to throw up and thinking if I can just make it back to the sofa and not move for five days, it will be okay.
So then I pin that hope on others. That I’m going to go to the physio and they’ll give me as much Hydrotherapy as I need, and then I’ll see the pain consultant and they’ll read the research I’ve found around a specific new medication that looks really promising and will give it to me without a fight, and then…
And then I’m sitting with the physiotherapy who is giving me the lecture that they don’t have infinite resources, so I can have one more block of hydrotherapy next year, and then that’s it. I’ll have to find somewhere else to go, and I’m trying to explain there is nowhere else, nowhere accessible, nowhere affordable, and I’m crying because I just want them to say yes, no problem, for once.
And then I’m at the pain consultant – the one that’s meant to work with people with Ehlers-Danlos Syndrome a lot, except she’s getting the most basic elements of the condition wrong. She does read the research I push at her, and she turns and says – “Yes, we do this here.” There’s a pause, my heart races. “But not for people with your condition.” And then she’s lecturing me – you need to exercise, and push through the pain, it can’t be that bad. And I’m trying to tell her, explain that I’m not talking about aching muscles the next day after a session at the gym, but agonising and consuming pain, partial dislocations – bedbound for days, and I’m crying because she doesn’t get it.
And then I’m at the osteopath, and she has her elbow in my lumbar spine, and she says, “Have you considered exercise?” And I sigh internally, but politely try to explain the same old issues, that I do exercise – but it has to be extremely limited, and she’s pushing it and pushing it until the tears are there again and then she’s backpedalling, and sorry.
It’s so frustrating, I hate crying – and on their own are such minor things. It’s the build up of it all, the feeling they’re just not listening.
But I need to wipe my tears, because it gets me nowhere, and push on with what I can. I’ll get there.
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.
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.
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.
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.