Three Weeks in Rehab – Day Seven
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.
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Three Weeks in Rehab – Day Six
I don’t know if today is meant to be day eight, but I decided to ignore the weekend! Although having previously booked a hotel for Sunday nights, I didn’t have my first session on Monday until 10am, so we decided to stay at home one more precious night. I love being at home, but it’s a sacrifice of sleep! We were aiming to leave at 7.30am, but it was about 8 before we left, and by 9.30 I was getting worried as the traffic was pretty bad. I arrived to a very full ward, with lots of new people. Some had replaced those that had left, plus we’d had some empty beds last week. I felt like the new girl, and very awkward to go and speak to everyone! My first week I bought some of my beads to make jewellery, and I’d got lots of requests for different things, so I packed all my beads and some pre-made stuff. My pile of stuff is ever-growing! (See next week when I attempt to smuggle my cat in and hope no one notices.) I suggested to my mum she stay for a couple of the sessions and see what they’re like. Family members are invited. My first session is the Weekend Review, where we discuss how we met the goals we’d been set. I did 5 out of 6 – the only one I struggled with was getting up early! But I still got up a lot earlier than I would have done normally. The second session straight after was Anatomy and Healing. It was run by my Physiotherapist Rachel,... read more
Three Weeks in Rehab – Day Five
On Thursday, I was talking to some of the people in the ward and was shocked at all the resources they didn’t know about. One is an older lady who uses a wheelchair, and pretty much stays at home 24/7. She can walk for small distances, and uses a manual chair to get about the rest of the time. The day before we’d played table tennis and bowling (a rough version of tenpin bowling) and had really enjoyed herself. For years she’s been locked in her home, watching people out of her window, feeling like they had a life and she did not. I asked her if she would now consider going out, and she said she would. I said it was a shame she didn’t have an electric wheelchair/scooter, even just to go to the shops and have some independence. She said she did own one, but it was so bulky her husband couldn’t get it out of the house very easily, so they didn’t bother, and while she would love to look into local clubs that perhaps ran sports for people with disabilities, she didn’t want to have to rely on her husband to take her. I asked her if she’d ever used community transport – our local one is called Community Voluntary Services (CVS) that have cars or buses that pick people up for a small cost. Others have Dial a Ride. She’d never heard of it! I also told her our CVS Shopmobility rent out scooters and chairs, which she could borrow to visit a place. She had also never heard of Disabled Facilities Grants,... read more
Three Weeks in Rehab – Day Four
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... read more
Three Weeks in Rehab – Day Three
I wake up feeling wrecked. Despite having slept, I feel like I shouldn’t have bothered. After a breakfast of cold, hard toast, we have a Stretch session. The physio that normally leads it is off sick, so it’s led by Marta, who normally runs the Arts and Crafts. She had made a girl in the ward cry the day before. She has never led one before – she’s very hesitant and a bit patronising at times, explaining things to a ridiculous degree. Almost straight after we have Handling and Lifting, which looks at lots of ways to manage around the house. I really begin to flag, and I get a massive attack of noise sensitivity, particularly due to some of the loud voices in the group, but it’s hard to explain to people, so I just try and concentrate on getting through. We got lots of tips to help with housework and around the house. We learnt never to bend over to pick something up, or to get something from a low cupboard, but instead to stand as if your feet are in a box, with one foot on the top right of the box, and the other foot on the bottom left. This gives you a stable base, and improves balance. When you go to bend, you should lunge forward on your front knee. This takes the pressure off your spine. We also learnt that the spine is in the shape of a lazy s, and the most delicate part of your spine is the top. Your lower lumber area has much thicker bones/discs, and is where all... read more
Three Weeks in Rehab – Day Two
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... read more
Three Weeks in Rehab: Day One
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... read more
Mis-behaving buses
I found out today that a group of people in Darlington have brought legal action against Arriva bus company for disability discrimination. The buses have been refusing to allow people in wheelchairs on because pushchairs are there; not putting the ramp down for them; telling them they will be too heavy for the ramp; not stopping for them; or giving them abuse for trying. In one case a young man waited in the snow for the last bus of the evening, which refused to let him on. When he started to challenge it, the bus driver turned round to the passengers and told them if they let him on the battery on his chair could explode. Pushchairs do NOT have priority. I know it’s not easy, but parents should fold their pushchair should a wheelchair need the space, as a disabled person can’t jump out of their chair and the wide space is put in specifically for disabled access, not for prams. (The exception is of course if either the child or parent is disabled themselves and so cannot do this.) Lothian buses in Edinburgh have actually now banned non-foldable buggies (prams) and insist on them actually being folded if they get on. I can’t say I like the thought of people being left at a stop in any case, however hopefully once the policy is known about, people will make sure they purchase a foldable chair. Certainly buses should be doing all they can to make themselves accessible for people with disabilities. Good on Darlington Association on Disability and Unity Law for fighting... read more
They tried to make me go to rehab, and I said that would be quite helpful actually
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... read more
Trying to Step onto the Spinal Pathway
This month makes it a year since I was finally diagnosed, and brings me up to nine and a half years since my symptoms began. My lower back has been getting worse and worse, and I believe is the cause for me not being able to stand up long. I went to see my GP and said that I would like to have an updated MRI. My previous MRI in 2009 showed three or four slipped discs, facet degeneration and arthritis. And at that point I could be on my feet for about 15 minutes. I’m now down to under a minute (or so, depending on the day. Sometimes it’s far less, sometimes a bit more if I push myself and ignore the pain.) My GP said she didn’t have the power to order an MRI unless I was having an operation or something. She asked me when the last time I saw a spinal specialist was, and I said i hadn’t ever. I’ve seen plenty of Rheumatologists and Pain Consultants, but that’s it. She said there was an NHS scheme set up called the Spinal Pathway, and she rolled her eyes and said what a ridiculous name it was. It was for people who had long-term back pain, who hadn’t been able to be helped by their GP. They would assess me – probably by a physiotherapist, and then hopefully send me on for an MRI or to the consultant. Well, that was the plan. To be honest, as soon as she said a physio was assessing me my heart sunk. I don’t mean to be negative about a whole... read moreAbout Me
Hi, I'm Jade.
I'm in my early thirties, and live in the UK. I have multiple chronic illnesses with my main condition being Ehlers-Danlos Syndrome. This blog is about finding hope amongst the frustrations.
You can contact me at: info@chronicchronicles.co.uk
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