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 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!
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.
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.