I can’t drive far, so it means my poor mum has to drive me to hospital appointments, and she HATES driving in central London. She’ll do it, unlike a lot of people, but it’s not fun.
It’s already a worry before we leave that we’ll get to the hospital and they’ll be no parking. This has happened loads of times before, and usually results in madness and mayhem. And that’s putting it lightly.
Picture this: last hospital appointment at the University College Hospital in London, which has six blue badge spaces. We’d been stuck in traffic and were now 45 minutes late for the appointment and of course all six spaces are taken. So we pull up outside, put the wheelchair together and mum sends me on my way while she goes to hunt for a space. Wheelchair battery promptly dies, so I’m having to use my feet to pull the wheelchair along (Fred Flintstone style) at 0.000000000001 miles per hour. I’m given the wrong directions and head to the other end of the department, before being sent back, and arrive at the nurses station way, way past my appointment time and promptly burst into tears and have a mild panic attack. Luckily, they took pity on me and they let me see the consultant at the end of his surgery time.
So parking, and being able to have someone with me? Helpful. Anyway, as a passenger in a car, I have an unfortunate issue of falling asleep. I’m generally close to exhaustion at all times, and there’s something about a car I obviously find soothing, as I can’t fight it and within a few minutes I’m usually out of it.
However, my mum struggles with the whole driving in London thing and trusting the sat nav, so I get woken up every 15 minutes with increasing franticness, “Which road do I take?” I mumble an answer, and then go back to sleep again. This apparently stresses her out, and she’d rather have an awake passenger when going to London. Whoops.
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.
I wake up exhausted, and to be honest it ruins my day. I can’t concentrate, and I spend every spare second sleeping. It’s a busy day as well, which doesn’t help. I’m also frustrated as I’ve looked forward to this programme so much – hoping to learn a lot on it, and feel annoyed at myself when I feel I can’t fully take part in it.
The first session as always is stretch. As you remember lots of new people joined yesterday, and we’d all got to know each other the week before and feel comfortable, so there is an air of slight awkwardness. Throughout this session my nausea is playing up, and I take an anti-sickness pill. I tend to find my nausea (common with Ehlers-Danlos Syndrome) gets much worse when my fatigue is particularly bad. The other thing that gets worse is dizziness – so throughout feeling with the mixture of dizziness, fatigue and nausea – the session isn’t particularly fun and I have to keep taking breaks.
One of the new ladies unfortunately has an even worse time. She suddenly whispered to me she didn’t feel well and was going to get some air. She almost reaches the door when she collapses. The physios rush around her, covering her up and putting screens around her. We’re told to carry on, and when we finish the session she’s still on the floor. We see her a bit later and she says she just got incredibly dizzy and ill. I feel really bad for her.
Straight afterwards I have my first gardening session with Viv. It’s all adapted, with long handled tools, which is really awesome. It’s set out so you can sit at a table to work, and I re-potted lots of Snapdragons. I then watered them with a can you didn’t need to tip, just press the button – which is fantastic for those of us with wrist, arm or shoulder issues (or all!). The underlying emphasis of the session was about posture and pacing, so I had to regularly change position and stand, or walk every 10 minutes. She helped put my posture right, but was nice about it. I come out feeling positive and like I can get this posture thing down. (I struggle as I hold my body in certain ways due to the pain, so while it sounds easy, it isn’t always.) I also really enjoy the gardening aspects and find it soothing.
My next session is Intro to Relaxation and the tiredness just hits me. She says it’s just the theory behind it, and I think thank god, as I’d just fall asleep. The room is cold, uncomfortable and packed, so how we’d relax, I don’t know. She goes on about the benefits of it, and my eyes keep shutting. A couple of times I find myself jumping awake. I just need it to be over so I can lay down, but on it goes. Then she announces we will have a short try by closing our eyes and breathing deeply. I keep my eyes open, trying to read or do anything to stay awake, digging my fingernails into my arm! It was horrible. I hate that feeling when you just can’t fight it, but it’s not somewhere you can sleep!
Lunch is next, but I collapse into bed to sleep, and then eat my salad on my bedside table as I just can’t move. It’s quite all-consuming today. Next I have physio, and I was looking forward to playing on the Wii, but someone else’s physio had the same idea – and decided to use it for the hour, rather than share it. Instead I work on the shoulder strength and core work. She asks me if I feel whether we’re missing anything out. It’s want to say that I feel it would be nice if it was more hands on, trying to relax some of the muscles as well as just exercises, but I don’t feel comfortable enough to do that. I tell her my wrists are very sore, and she gets me to try on a wrist support, but it’s no good unfortunately.
Straight after I have Occupational Therapy with Lucy, who coincidentally enough has decided to look at my wrists and hands. She tests my grip with a machine and says it’s very weak, particularly on the right. We try on lots of supports, and pick one with wrist and hand support to order in which feels really comfortable and gives support without being too tight, and another which is like a tight glove. People with EDS often have trouble with their joints as their brain can’t quite tell where their joints are (called proprioception). After putting it on immediately my grip improves. It’s a ugly thing though! She is also going to look for something to help my elbows which keep locking in hyper-extension, particularly overnight, which is very painful. Finally, she is going to write to my employer to say I need a phased return.
Next up is Arts and Crafts and I’m not so keen – which is ironic as I love crafting. Again, they look a posture – which I’ve kind of had enough of today. Every time I move she makes me move back into the ‘right’ position, even when it’s painful. She goes to ridiculous and patronising extremes, and hasn’t a clue about pain and how it impacts on your posture. I come away wanting to sit slumped for the rest of my life just to spite her, rather than earlier that day with Viv when I felt inspired. A terrible way to go about it.
Finally, a break! Once again I collapse in bed. I hate these day-time sleeps, as I’m trying to get better sleep at night, but it’s impossible not to. I’m just leaving for my final session when one of the ladies in the ward faints. God, it’s the day for it! I’ve never seen the nurses move so fast. If you’re wondering why so many are fainting or dizzy – we all have a condition called Postural Orthostatic Tachycardia Syndrome, which is linked to Ehlers-Danlos Syndrome. It causes your blood pressure to rise as you stand, causing dizziness and sometimes fainting.
The final session is on Pain – why it happens, what it is, etc. Again, I would be interested normally, but I’m fighting to stay awake. It wasn’t a session I was originally down for, it was just for the Pain Management patients, not the Rehab, but my physio said she thought I’d be interested. They finish the talk, and the two patients point out they’d heard exactly the same talk the week before. They’re told they do the same talk each week, and they have to listen to it three times. How weird! I won’t be going next week anyway.
Tea isn’t great. Afterwards a few people have to walk to the nearest shop as they were still starving.
I set my jewellery out in the evening and make a couple of sales. I also start work on a bracelet commission. Just as we’re settling down, the grasshopper (or cricket or whatever) reappears again. Someone manages to grab it and saves another sleepless night. Yay!
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
On Tuesday the DLA doctor turned up at my doorstep – despite the medical being cancelled.
Yesterday the lady from ATOS phoned to give me a new date for the medical at the centre. So they are continuing to go through with the medical despite the fact my claim has yet to be looked at. Interesting tactics.
In other news, I’ve been signed off work for a month. Hopefully it will help, as I’m just so exhausted at the moment.
Credit to Kurhan