13/01/2017

2014 RNOH Inpatient Rehab Pain Management Programme

RNOH stanmore



I was referred to this programme by Prof Rodney Grahame after he diagnosed me with EDS. Then I needed to have an assessment by the team at the RNOH before I could go on the programme, to see whether it is suitable for me.

There were only 5 of us in the room waiting for an assessment, we had a discussion first from the team before we went off individually. They told us about the programme and what is involved, they said we had to attend all the classes and the exercise part as well, which worried some people in the room. I had a lovely OT doing my assessment, she went through my forms and it was decided I would go on the hospital ward due to my mobility issues, some people can go to a nearby hotel if they can manage without medical interventions. We were told there is a 3 month wait to go on the programme but if we can be more flexible there could be a chance we could come earlier, if there were cancellations.
I received a phone call saying there had been a cancellation so I could come a lot earlier. I was excited when I got this news and was ready to go.

Week 1 of the Pain Management programme

Day 1

I was a bit nervous about going, as it was the first time I had been away from home. When I arrived everyone was really friendly on the ward, I met one of the girls and then I was given my locker key and shown where my bed was, all the new people had a talk from the head of the ward about rules and regulations, we also had to be weighed by the nurses and our BP taken, then we had our first class on Making Changes. They explained how we obviously want to change, as we have come on the programme but how are we going to do it? the different stages involved. I found this a bit hard going when I had only just really arrived.
We had lunch in the conservatory together, the food was selected previously from a menu left on our table at the end of the bed, you had to mark your choices. 
In the afternoon I met with my OT and Physio who were very nice, they had a chat about my problems, then we went back to the ward to chill out and get to know each other before we had a talk on Pacing and the rules of this and the importance of not getting into the 'Boom or Bust' cycle. I felt really rough with a migraine in the evening as it had been a busy day. 

Day 2 

Had a really bad night due to pain, heat, noise. Porter came with a wheelchair to collect me and take me to stretch class, which I found hard going on little sleep. Went back to the ward and had a nice rest on the bed as pain wasn't very good. I started to chat to a nice girl who was next to me but on a different programme.
I saw my OT, she talked a lot about home and problems that I had with bathing, dressing etc. I saw my Physio who did a thorough examination, watched me walk, balance and commented how active my neck muscles were, she tried to get me to relax them, my pain was bad afterwards. I went back to the ward and had a rest before we had a talk on Hypermobility, as I had only just been diagnosed this was very interesting and I learnt a lot from it.

Day 3

Woke up not feeling great, heart beating fast, nauseous, lightheaded. Didn't want to bother the nurses so just tried to manage. Porter came to take me to stretch class which was hard going. I saw my physio and told her how bad my pain had been, she said we would do things slowly and gently. We went over my exercises, she could see how much effort it was for me, they were so basic as well.

I had a talk on Lifting and Handling next which was with my OT, there were only two of us so it didn't take very long, she explained about moving correctly and lifting but also aids that you can buy to help with making things easier.
We went back to the ward for a rest before our talk on Coping Skills, which I struggled to stay awake for, I had a lye on my bed before we went to the hall for sports. I had a go at table tennis and a hoop game, which was good fun and got to meet some of the other people on the programme staying in the hotel .

Day 4 

Stretch class first thing, then had a one-one session with a clinical psychologist, which was arranged beforehand. We had a talk on posture and got to try some of the products, I really liked the back friend as it keeps your spine aligned properly. After lunch I saw my OT and we looked at my weekend goals and then she got me to pretend I was in the kitchen getting something from the fridge, so she could watch my posture. 

The porter took me to the swimming pool, my physio came as well but stayed on land. We were given a zimmer frame for safety and escorted to the water, I had a lady in the pool with me, when I got out my legs gave way and my physio had to escort me to the changing room, my balance went a few times luckily she caught me. She helped me dress and then got me out of the area as I felt nauseous and a bit faint, the porter took me to the physio department so they could keep an eye on me before I went to the ward. I had my BP, temp and oxygen checked. My legs were not good for the rest of the day.

Day 5

Last day of the week, I can't believe I have made it! My body is struggling though and it has been a busy first week. I have met some lovely girls on the ward and we are all in similar situations but have different conditions. They are so caring and supportive.


Week 2 of the Pain Management Programme


Day 1

We had a weekend review to see how we had got on with our goals. Then we had a talk on Anatomy and Healing by a physiotherapist, this was really interesting as it is an area I have always been interested in.
After lunch we met with our therapists to set our new goals, I went over mine with my OT, then she watched me how I use a knife and fork, these were plastic and she gave me a plate with some putty on and got me to cut it up and observed how I did it, due to my hypermobility, I am putting strain on my wrists and fingers, this was pointed out. She also gave me a pen and saw how hard I grip. I took on board what she said but felt a little intimidated. I nearly fell afterwards luckily my OT caught me. We had a talk on foiling a flare-up, this was very important as is relevant to chronic pain conditions, they said about helpful techniques to use and we also did our own individual plan. You may be interested in 

Day 2


We had a stretch session first thing, then went back to the ward for a rest. We had a talk on the importance of relaxation by an OT and she got us doing some breathing exercises, then we had lunch.
In the afternoon I had physio, we worked on balance and sit to stands , she had to hold me for these and then I went on the bars and did some small step ups, I was very tired afterwards. She said to work on function rather than exercises with me and gave me two crutches instead of one as my balance was poor.
I had a sleep when I got back to the ward, in the afternoon we had a talk on pain. I was sore in the evening.

Day 3


We had stretch first thing but my back wasn't very good from yesterday. I had a break before I saw my OT, she got me playing a game of connect 4 against an assistant, which was fun but wasn't sure why I was doing it. She was looking at how I moved my arm and at my posture. I was given a wobble cushion which made it even harder. I saw my physio afterwards she got me doing sit to stands and step ups. I was put in a corset, which made me look really funny, so I could learn what muscles to use as my pro-prioception is poor. She wants me to practice over the weekend. 

I had a relaxation class but my head wasn't very good. In the afternoon we had a Coping Skills talk and sports in the hall. I had a go at table tennis but struggled with my back. When I got back to the ward I had a lie on the bed, my head was still not good.

Day 4  

We had stretch first thing, my back was not that good from yesterday, I saw my OT afterwards and we talked about my goals for the weekend. I had a one-one session with a Psychologist, this was arranged beforehand. We had a talk on nutrition by a nurse, which was very interesting. After lunch we had a talk on work support, my back was spasming badly so I wasn't able to go swimming in the afternoon, I had a lie down but the pain wasn't improving and needed painkillers but I had to wait for a Dr to issue them, which took hours. The group was very supportive.

Day 5

We had our last session together with the people who were from the other groups and said our goodbyes. We had a relaxation session but I found it hard as my back wasn't good and there was too much noise. 

Made it through another week but my body really struggled with pain, it has been intense at times and very tiring.



Week 3 of the Pain Management Programme

Day 1


We had a weekend review then Anatomy & Healing class, which was very interesting. I had physio after lunch, she worked me hard with posture exercises using a wobble cushion to make it more challenging,  which was really hard. We had a talk on Pacing You may be interested in  which was really interesting and something I need to practice more.

Day 2


We had stretch class then I saw my OT, she talked about work and pretended she was one of my students and asked me how I am going to pace when I get back to work.
I thought I could have a rest next, but I had a talk on Maintaining Change which I was a bit late for as I was lying on my bed.
I had physio in the afternoon, she worked me hard again getting me on the ball then wobble board which was hard. I was told if I don't use my muscles I will lose them, I need to work on functioning better rather than exercises as my body is really deconditioned. I need to work on my core and posture for short times each day.

Day 3


We had stretch class then I had physio but not with my usual therapist, an assistant instead, she kept commenting about my posture on the ball, as I find it really hard to stay up straight, due to my core being weak. I had a rest on my bed before lunch then had a talk on coping skills.
We went to the sports hall in the afternoon and I played table tennis sitting on a perching stool, which I wasn't very good at and the staff had to keep chasing after the balls and picking them up for us, I also played skittles, which was good fun. The staff really encouraged you to try new activities within your physical capabilities but they always reminded you to pace by looking at the clock and after a certain time would remind us to rest. We went back to the ward afters and chilled out.

Day 4


Stretch first then I did my goals with my Physiotherapist, she told me to work on function. After lunch we had a talk on medication by a nurse, which was very interesting as she talked about the various types of drugs that were suitable for pain, some I didn't know about so I learnt something new.
We went swimming in the afternoon, but my knee wasn't good causing me to lose my balance. I had a physio with me all the time luckily.
As it was our last evening together as a group we decided to order a pizza, this was a nice treat from the food we had been used to having.

Day 5

We had our last talk together which was sad as we had become close as a group. Mum and Dad came to pick me up and I said my goodbyes to everyone which was emotional. I was relieved to be going home to my own bed but was sad to say goodbye to some of the staff who I had got to know really well in the time I had been here and also I had met some lovely girls throughout my stay and will definitely keep in touch with them.

This has been a hard 3 weeks especially physically, as I wasn't very good before I went on the programme. I learnt about so many useful topics such as, Pacing which I will try to put into practice daily, as this is so important to reducing flare-ups and managing pain better. I will work on my core as I am so weak in this area, this should also overtime help with my pain. I will try to be more assertive especially with asking for help and not assume people know what I want. The staff have been fantastic and really know their subjects well.
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6 comments:

  1. Love this post. Having done this programme nearly three years ago it takes me right back. Pacing - The hardest thing to master but gives the best rewards long term. I did a look back at the programme a year later, I think it helps to reflect on how far you've come - keep up the hard work it's worth it. X http://mystripylife.blogspot.co.uk/2015/06/rnoh-stanmore-rehabilitation-programme-review.html

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  2. Thank you Sarah for your very nice comment. I agree pacing is probably the best skill I learnt from the programme. Unfortunately for me I wasn't really fit enough in the beginning for the programme so went down hill afterwards. x

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  3. Good luck going forward; sounds like you put in a lot of hard work and effort. Thanks for sharing with us at Together on Tuesdays.

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    1. Thank you and that is a pleasure to share this with you.

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  4. Wow! That sounds like an exhausting week. I'm sorry that you suffered with so much pain and headaches. It's great that you learned a great deal about EDS and how to help yourself :) I have EDS, and I would love to learn all of these, too.
    Thanks for sharing at Together on Tuesdays :)

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  5. Yes Lisa it was exhausting for me. I learnt some great things but my health found it too much unfortunately.

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