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.