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!
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.