Thursday, 12 June 2014

My Diary of the Royal National Orthopaedic Hospital Rehabilitation Programme (Hotel Based) By Clair Louise Coult

I've just arrived at Mercure Watford hotel to start my Stanmore rehab programme tomorrow.  I'm pretty nervous about it all but I know I'm lucky to be here and I'm determined to make the most of it.

My room is OK, a little tired and dated but it's quite big and has everything I need (although more storage space and power sockets would be nice).  The only problem I've encountered so far was actually getting to my room.  The hotel layout is a bit strange with the reception and dining room on the ground floor and rooms on the lower ground floor.  I arrived on my mobility scooter but and was given a room on the lower ground floor but the lift was broken so I was taken around the back of the building only to find there was no ramp to get up the kerb to the pavement.  So I went back to reception and eventually they found someone to take me around the other side of the building to get in a side door and I made it to my room.  Reception gave me a courtesy call just to check everything was ok, which was nice.

I was pretty nervous this morning but today has been a pretty good day.  I had to make my way through the Mercure Watford car park to get to the restaurant for breakfast.  I hope they get the lift fixed soon!

Breakfast is from 6:30am until 9:30 am on week days.  It's a self service buffet and caters for most diets.  Fresh bread, toast and pastries, cereals, yoghurts and fruit juices, then the hot buffet with fried and scrambled eggs, bacon, sausages (and vegetarian sausages), mushrooms, tomatoes, beans and potato rosti plus a selection of fresh fruit and of course tea and coffee.  There are also specials available, porridge, kippers and eggs Benedict.

The welcome meeting was a bit chaotic as we everyone had been given different times.  We ran through a few things, had the chance to ask questions and get to know each other.  Our group is all ladies and we all have EDS.

I asked a few questions and mentioned my personal budget being reduced.  The psychologist said they may be able to help me by writing to social services and explaining my condition and why I need support to manage my health

We had a session on pacing.  It was very interesting but it's going to be difficult to implement as my baseline is below the everyday tasks that I need to do so it's going to involve some creative thinking.

Lunch was quite impressive.  They put on a buffet of poached salmon, humous and crudités, rice salad, pizza and potato wedges and salsa, followed by chocolate mud cake.  Two of the ladies had special dietary requirements and the chef made them up platters.  The hotel is really accommodating and the chef can make anything we want as long as we order it the day before.

I had a rest in the afternoon before going to my physio and OT assessment.  I was really nervous about it, I don't have the best track record with physios but they were really nice.  We talked about what I'd written on my assessment form, talked about my goals and discussed the hydrotherapy sessions.  I was a bit anxious as I always feel ill when I get out of the water and it takes a few hours to recover but we're going to take things slowly and see if I can manage a few minutes.  That's the great thing about this course, it is tailored to you personally so you're not pushed into doing things that might make you worse and you can concentrate on the things that matter to you.

The restaurant opens for dinner at 7 but our decided that was a bit late so we're arranging to eat at 6.  There is the option of room service too so basically you can have your meals whenever you want.  I've not decided what I want yet but if it's anything like lunch I'm sure it will be delicious!

Day Two Week One


Had a lovely breakfast with the ladies on my course, then went to stretch class, which for me was a bit of a disaster :(

Yesterday we were given a pack with our timetables and all the information about the course, which included 23 different stretches.  Some sitting, some standing and some laying down.  I started to come unstuck at the sitting and raising one leg as my right hip wasn't keen on me doing that.  I tried the standing on tiptoes, supporting myself on the back of a chair but my posture was awful and I went dizzy so sat down and skipped the next couple of stretches.  I really started to hurt when I laid down on the mat.  They asked us to stretch out our arms and legs which really hurt.  They said stretch less but I found that hard to do too as there seems to be a switch point between not feeling anything and pain.

I felt like a failure watching everyone else making the effort while I nursed my sore neck.  I know I have to try but everything was too hard for me.  I spoke to the physio afterwards and she said I was doing too much and she recommended speaking to my own personal physio about it.

I took my muscle relaxant as I was in a lot of pain and I had my OT appointment next.  My OT is lovely and we talked about what I need help with in my daily life such as personal care, managing household tasks, shopping and socialising.  I signed up for crafts and gardening as my functional activities and showed off pictures of my hand spun yarn and knitting projects.

After a little break I had a meeting with my personal physio.  She'd been told about my problems in stretch class and said it was beyond my capabilities at the moment but we could try a different technique - mindfulness.  She recommended at the next stretch class I should get into the starting position for each stretch and visualise doing the stretch if I can't manage to do it.  We had a really good chat about things, my expectations of the course and finding the right starting point for me.

We also talked about the hydrotherapy.  All classes are mandatory but she told me not to go to the group hydro session, she would arrange a one to one session on my own and just get in the water, float for a few minutes and then get out and see how that affects me.  She explained how the heat, humidity, water pressure and physical exertion all affect my body causing me to feel ill after being in the water because of my EDS and POTS and she took me on a tour of the hotel pool.  It was incredibly humid, which makes me feel quite breathless even just sitting down, but there are gentle steps (and a hand rail) that go down into the water so at least I don't have to haul myself up a ladder to get out of the pool.  After the feeling upset at stretch class I felt much more positive about things.  The physio also explained it's taken many years to get to such a poor state of health and there are no quick fixes, but once we find my baseline we can begin the long road to improving my fitness and health.

Lunch was amazing again, grilled chicken, broccoli quiche, humous and crudités, salad, sweet chilli chicken wraps, new potato salad and a fruit platter with melon, watermelon, pineapple and grapes.

After lunch there was a talk on joint hypermobility syndrome, what it is and why it affects our joints, then we had our functional activity meeting where we had a balance test, which was basically standing on a sensor pad which indicated if our balance is dead centre or over to the right or left.  Mine was 1 to the left, which is probably because my right hip is hurting me today.  We also talked about pacing and correct posture and we arranged our activity sessions.  I'm doing crafts next week and gardening the week after.  We get to learn how to pace our activity and achieve things without causing pain or overdoing it.

It's been a very long and quite emotional day so I'm going to rest for a while before meeting up with the others for dinner.

Today started with stretch class again, but this time I didn't end up in severe pain.  I got into the starting positions and visualised the stretches rather than doing them.  I know it sounds a bit daft but it's the first step on the road to being able to do the stretches and I felt much better being able to participate in the class, albeit in my limited capacity.  We are all different and this is very much embraced on the course.

Next was OT and we talked about pacing, writing an activity diary and using a traffic light system for activities, red for things that cause pain and fatigue, amber for things that are slightly less taxing and green for easy things.  My homework is to fill out an activity diary for a typical week so we can see where I can make changes to pace my life better and aim to make it to the end of the day without collapsing in a heap of exhaustion.

I had physio and we worked on my sitting posture and I was given a couple of simple exercises to try, very similar to pilates, tilting my pelvis back and forward, coming to rest in a neutral position.  We also discussed how I sit in a terrible position with my ankles crossed and my right ankle hyper extended so I'm going to make an effort not to do that!

Lunch was fab once again, quiche, chips,  pasta salad, tomatoes and cucumber, chicken goujons, boiled ham and carrot cake.  I am going to go home a few pounds heavier!

After lunch we had lifting and handling in the specially adapted kitchen.  We talked about safe ways of doing tasks in the kitchen and around the home, being aware of our joints and moving in the right way.  We also discussed aids and equipment such as kettle tippers, using chip pan baskets so we don't have to drain heavy pans of potatoes or pasta, and using a long handled dustpan and brush.

I was a little disappointed as I had to miss out on the trip to Stanmore hospital to do the sport and recreation class because of a transport oversight.  The staff knew I'd be bringing my mobility scooter but a non accessible taxi had been booked for the journey, so rather than risk being stranded waiting for porters at the hospital they advised me to sit this one out and they promised to have something sorted for next week.

Now I'm off to join the ladies for a drink and dinner, and find out what fun I missed out on.

The day started out with stretch, I tried a couple of the exercises this time but my right hip complained at me a bit and I had to modify one exercise as it made my shoulder go clunk.  I survived it ok and I am feeling more confident about it.

We had a talk with the psychologist about the impact of our pain and health problems on our friends and family.  It was really interesting and it got us thinking about how to deal with situations better and how to ask for the right kind of help when we need it.

The rest of the group went to the pool for hydrotherapy but I'd been advised not to go because I always become very symptomatic when I get out of the water.  They were going to arrange for me to have a one to one session where I can just float for a few minutes then get out so we can assess how that affects me but that is likely to be next week now.

Lunch was awesome, spicy chicken salad, chips, spring rolls, vegetable wraps and chicken skewers with fruit for dessert.

I had my goal setting session with the physio and OT in the afternoon, it was probably the hardest session of the week.  It was quite challenging and I got a bit emotional.  I had to come up with goals to try and achieve over the weekend but I really don't like goal setting as no matter how good my intentions are something always happens beyond my control and I fail.  The weekend is going to be a mad whirlwind of catching up with my children, getting all the laundry done, visiting my mum and a 3 hour car journey back to the hotel.

I explained that whilst I understood the principles of what they were teaching us on the course it was going to be very difficult to implement them at home.  They questioned if I was ready to do the course if I wasn't prepared to make changes. The problem is I have so many health issues that are undiagnosed or not under control, too much responsibility as a wife and mother and the very real threat of my social services support being cut by a third means I don't know where to start.

In the end we decided on setting four small goals.  I aim to watch my posture sitting watching TV, be more mindful of my movements in the kitchen, discuss the friends and family class with my husband and kids and visualise the exercises from stretch class.  It might not seem much but Im going to make the effort.

Unfortunately this course is not going to address some of the problems that my doctors back home expected it too.  They can't diagnose the neck problems, or investigate my numb little fingers but I am finding the classes very interesting and I'm taking some ideas to try and implement in my life.

I was disappointed to miss two classes this week.  I have a one to one swim session planned for next week but they still haven't resolved the transport to the hospital for the sport session.  That is very disappointing considering this course is supposed to cater for the physically disabled and I'm not the first mobility scooter user to participate.

It's been a busy week and I've enjoyed the company of the group but I'm looking forward to going home tomorrow.

Today is our last day before the weekend break.  After breakfast we had DIY stretch in our own rooms then two classes in the morning.  The first was posture management which got us thinking about the stresses and strain we put on our bodies in different positions such as sleeping, sitting and working at a computer.  We got to try out some wedge cushions and back supports to see if they helped us.

The second class was sleep bingo.  It was a fun way of looking at sleep hygiene and we talked about all the good and bad things that might affect our sleep, such as having a TV in the bedroom, having a milky drink or doing exercise.

After lunch we were free to go home but there was a small hiccup as our room key cards stopped working at 12pm and all our bags were locked in our rooms and we had to go to reception to ask for them to be opened again!

So that was the first week on the Stanmore hotel rehabilitation programme.  It's been very educational and I've really enjoyed speaking to other people with the same condition.  I've just about coping being on my own for the week, the hotel staff have been great apart from a few niggles with the lift.  The hotel isn't totally wheelchair friendly but I have managed to get around.

Next week is going to be pretty busy with lots more group session and personal OT, physio and psychology sessions.  It's not going to be easy but it's going to be worthwhile.  I also have to remember to take a few extra things, a four way mains adapter because I can't charge my phone, tablet and mobility scooter, and watch TV with only two plug sockets, plus I need an umbrella in case it rains on my circuit through the car park to the restaurant.

A super busy start to the week.  After a weekend review where we discussed how we met, or didn't quite meet our weekend goals, we did a stretch class, which due to a timetable mix up we weren't actually scheduled to do so we had to rush slightly through foiling a flare up and anatomy and healing before lunch,

Foiling a flare up was interesting.  We discussed what a flare was, what it wasn't (i.e. new symptoms which should be investigated), what can trigger them, accepting that sometimes they just happen and when they do, what we can do about it.  We are going to formulate our own flare up plans and a copy will be sent to our GP back home so we can work together with them to deal with it.  We talked about the physical and emotional aspects of flares, what makes them worse, such as pushing through, or confining ourselves to bed, and what helps, such as using pain management techniques, tens machine, heat, ice, medication, pacing and distraction.

Next was anatomy and healing.  I've always been fascinated by human biology and I found this really interesting.  We looked at what our bodies are made of, bone, ligaments, muscles, tendons etc. How they work to help us move and the processes our bodies go through when they are injured.

I had a break after lunch before I went to physio in the pool.  The plan was to spend five minutes in the water and do some floating but it was rather busy with preschool swimming lessons going on.  I got motion sickness from floating in the choppy water and I struggled to march on the spot with a noodle float so I said I'd rather just swim.  The physio agreed and I swam two lengths of the pool.  It's a pretty small pool so it wasn't that far and I got out straight away.  I felt quite weak and dizzy when I got out of the water, I sat on the edge of the pool for a while, then walked very slowly back to the changing rooms and sat down again before I got dressed.  I just about survived the experience, I wasn't as ill as I'd felt after previous swimming sessions in my local pool which was good.  We're going to try and repeat it tomorrow to see if two lengths is a reasonable baseline.  If I can continue to do that without making my pain and symptoms worse then I can think about increasing it to three lengths.

So all in all it was a very productive day!

I didn't have such a great day today.  I didn't recover from swimming as well as I'd hoped and the pain and fatigue severely impacted on the very busy day.

It didn't help that all four fire doors were closed when I went to breakfast, which strained my neck muscles a bit opening them all on my mobility scooter.  Then before I'd even started stretch class I reached for my water bottle and got stabbing pain in the back of my head.  The doctors think it may be occipital neuralgia but I haven't been officially diagnosed or treated for it yet.

I only managed visualisations of the stretch exercises then I went straight into a meeting with the psychologist to discuss my problems with social services.  She thought I'd done everything I could but was doubtful that they would change their decision.  I made another appointment to see her about dealing with stress.

Next was my OT appointment. We went through my activity diary categorising all my activities as green for easy, amber for slightly challenging and red for more challenging.  I seem to be pacing my activities pretty well and problem solved a couple of areas where I wasn't. The OT said our next task was to see where I could work in some household tasks to deal with the loss of social services support.  I tried to explain to her that any increase in my activity results in an increase in my symptoms but she still thought I could manage it by implementing pacing and using tools such as a long handled sponge to clean the bath.  I'm not so sure that will be achievable.

I went from OT straight into a physio session. The plan was to have another 5 minutes in the pool but I was feeling too ill to do that.  We talked a lot about mindfullness, the physio said I'm like a swan on a pond, I appear to be calm on the surface but underneath I'm paddling very hard to keep afloat.  I thought that was a good analogy.  She spoke about how my sympathetic nervous system was always switched on, ready for fight or flight but I'm not sure what I can do about that.

Next was lunch followed by an introduction to relaxation.  I didn't find the class very helpful, I was already very tired and in pain from non-stop meetings all morning.  The OT gave a weird demonstration about an Australian guy living in the bush who walked to the lake every morning but one morning he was bitten by a snake and he ended up in hospital.  When he recovered he went back to the bush and one morning on his way to the lake he felt a pain and completely overreacted thinking it to be another snake bite but it was just a scratch from a twig.  I'm not sure what the moral of the story was but I struggled to relate to it.

She talked about the sympathetic and para-sympathetic nervous system a little bit and then did deep breathing exercises, which I skipped as by this point I was feeling pretty awful.  I had to sit on the floor as the blood pooling in my feet was getting unbearable from being sat in a chair all morning.

I had a 20 minute break before my functional activity class, which was like a bizarre game of musical chairs.  We used timers to pace our craft activities, so after five minutes the buzzers and beepers would sound and we'd have to stand up, change position or do something else.  It was supposed to teach us not to get so engrossed in craft activities that we forget about our posture and pacing but it just seemed very artificial and unreal, not really something I could put into practice at home.

The final session of the day was goal setting, not my favourite subject.  I don't personally find goal setting at all helpful, I'm a highly motivated person and if I want to do something I find a way of doing it, but this course almost exclusively based on goal setting and making progress.  The talk covered making goals smart, specific, measurable, agreed, realistic and timed.  Unfortunately I was feeling pretty ill and totally exhausted and the oscillating fan was giving me motion sickness so I spent most of the class sitting on the floor shivering because I couldn't maintain my body temperature.

I went straight back to my room and had a bath to try and warm up but I think a combination of the previous week, the long journey, overdoing it in the pool and spending 8 hours sitting upright in the same chair was a bit too much for me.

I woke up feeling dreadful and shaky - all the symptoms of having done way too much.  I was on a collision course with a full blown relapse but I didn't want to quit.  I dragged myself into the shower but it didn't help perk me up.  It was a struggle to get dressed but I got myself ready and headed for breakfast.  I bumped into the OT on the way and explained how I was feeling.  She arranged a meeting later that morning to discuss it.

I didn't feel any better after breakfast and I pretty much sat out all of stretch class as the pain in the back of my head was too bad and I was feel really ill and shaky.  I also felt really cold, which is a sure sign I've been overdoing it and need to rest.

I had a rest in my room then met with the OT and physio.  It was really hard admitting that I was struggling and couldn't continue with the course.  They suggested I go on the hospital course but I explained that would be worse as I'd not have the quiet privacy of my room to rest.  I tried to explain it was just the second week of the course was too physically intensive for me to cope with, the demands were too great and I had no chance to rest and recover in between sessions.  They said there was nothing they could do about that, it was the nature of the course and we were expected to make improvements.  The problem I had is I never seemed to find that illusive starting point to build upon.

They asked if I understood the nature of the course before I came on it.  It was sold to me as a pain management/rehab/educational course that would look at my individual problems.  My medical professionals back home also seemed to view it as a "get out of jail free" card and they discharged me because Stanmore were going to deal with it.  Unfortunately the course isn't designed to meet medical needs in that way.

With a very heavy heart (and a few tears) I decided I couldn't continue the course and I arranged to go home.  The staff supported my decision and they said they would contact me in a few weeks to see where we can go from here.  I have several options, from seeing the consultant at Stanmore to coming back at a later date to complete week three of the course.  They don't want to leave me stranded and want to help in any way they can.

I feel a complete failure for dropping out but in my heart I know I'm only doing it because I have to.  It wouldn't help anyone for me to stay on and make myself sicker.  I'm really upset about it, I feel like I've let everyone down and I've let myself down for not trying hard enough.  At least I have learned a few things to take from the course and I made it to the half way point.

For anyone reading this who wants to do the course, it really is worth it but I think I've learned you have to be in a good position to start it.  I am suffering with untreated medical issues which made it hard for me to fully participate.  The course is not meant to diagnose and medically treat people, it's to rehabilitate EDS patients who are ready to take the next step.  Unfortunately I wasn't physically in a place to do that but I would highly recommend the course to those who are.

EDIT - After Thoughts

Since doing the rehab course I have spoken to several other people about it and whilst it can be very beneficial for some people it has not proved helpful for everyone.  

The course has some failings, they try to tailor everything to your personal needs but they are not always capable of handling people with other medical problems.  I was told they understood POTS but after I left the course the team wrote to my consultant saying they were concerned about my light headedness.

The course seems to offer set answers for a set number of problems.  If you have a different set of problems they can't really help you.  If you are in reasonable health, don't practice pacing, say in bed/sit on the sofa all day, struggle to cope with your pain due to psychological reasons or you don't know the first thing about joint hypermobility syndrome then the course is great!  

The Mercure Watford hotel was described as being wheelchair accessible.  That is not absolutely true. The hotel has long standing problems with the lift.  It's not a normal lift, it's a platform stair lift.  The only way to avoid it is to go around the outside of the hotel, through the car park and use the fire door.  There are two very steep ramps on other levels of the hotel which a manual wheelchair user may struggle with.  The hotel is also very large so you need to be able to walk at least 200 meters to be able to get around.

The hotel has been described as having air con.  It does have air con in the public areas such as the restaurant but it does not have air con in the rooms, which can often be too hot or too cold.  Apart from small top opening windows and a radiator dial there is no way of managing the temperature of the rooms.  I believe fans and space heaters are available on request but the hotel only has a limited number available.

In hindsight I believe I should never have been put forward for the course.  I was sent to Stanmore to try and unravel my complex medical problems but all they did was confirm EDS and refer me to rehab.  I feel like I was rushed through and the consultant, Dr Mittal, was unable to offer any other advice because "the only treatment is rehab."  

I failed because I was not physically well enough to cope with the long days and mandatory physical activities. Participating in the course flared up other medical problems that Stanmore and my local doctors had yet to diagnose.  I have since been diagnosed with Sjogren's Syndrome and myotonia.

I'm afraid I have not found the course helpful at all.  The only physio exercise I was given was to sit up straight, which made my bottom feel very sore at the time (no explanation was given when I asked why) and it still does. No improvement there.  I have tried to be more mindful of my movements but I haven't seen any improvement.  I have resolved my issues regarding social care and have kept my current level of support, which the staff at Stanmore told me I wouldn't get, which at the time made me even more anxious about the problem.  I am still unable to do any exercises from stretch class and my head and neck pain is still unresolved.  I am waiting to see another specialist about my myotonia but that could take 6-12 months.

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