Sunday, 28 May 2017

Week Two: Stanmore Pain Management and Rehabilitation Programme

If you read my last blog post, you will know that instead of my usual Sunday Snippets posts, I will be telling you about what I’ve been up to at The Royal National Orthopaedic Hospital Stanmore Pain Management and Rehabilitation Programme. Before I went into hospital, I spent ages searching for blog posts and YouTube videos from other people who have done the programme, but the only one I could find was by the lovely Sarah in Wonderland. I found Sarah’s posts really helpful to read through and they helped me feel a little less nervous and understand a bit about what I had in store. So I decided to write about my experiences on my blog in the hope it will help others going through a similar thing. They’re going to be pretty detailed, as I don’t want to miss anything out, but I understand that these are fairly specific posts and probably won’t interest everyone. I would also like to do some other posts about my initial appointments and referral process, and will also be uploading some videos to my YouTube channel once I’ve done my three weeks. So if there’s something you’d like to me post about, please let me know. I hope you will either find them helpful if you’re waiting to go on the programme, or find them interesting if it’s not something you’ve experienced before.

Day Six – Monday 22nd May 2017

I was up at 5.30am so my Dad could drive me back to Stanmore. We set off a bit earlier than last week, as the traffic was so bad and I didn’t want to be late. But this time the traffic was OK and I got to the ward really early, just after 8am – typical! I got unpacked and rested on my bed until the other girls arrived.

Weekend Review – 10am:
As a group we each went through our weekend goals and discussed whether we’d achieved them. I got on fairly well with my goals:
1.    Practice new walking technique à I did practice it, but found it hard with my right hip and shoulder pain from dislocations
2.    Physiotherapy exercises each day à I only managed to do them on the Sunday. I was too busy and tired on the Saturday
3.    Trial a relaxation activity once a day à On Saturday I used the Headspace app to do some deep breathing and on Sunday I used the Calm app to do a guided body scan to music. I found them both really relaxing and it’s something I would like to try and keep up
4.    Reflect on my weekend using the traffic light pacing system à I paced a bit better on Saturday but on Sunday I had way too much red and not enough green

Foiling a Flare-Up – 11am:
Greg, my physiotherapist, led this session. We talked about the things that can trigger a flare-up, such as a new injury, stress and over-activity. Then we discussed what a flare-up actually is, as it can be easy to confuse an increase in symptoms after using muscles we don’t normally use with a flare-up of pain. We also chatted about the types of symptoms you might get during a flare-up. Greg explained that there are passive and active ways of coping during a time like this. Some passive ways of coping include:
·      Taking medication
·      Resting
·      Seeing your doctor
And some of the active ways we can cope with a flare-up are:
·      Correcting posture slowly
·      Setting new baselines
·      Pacing rest and gentle movement
·      Relaxation
·      Distraction techniques
·      Stretching
·      Ice or heat
·      Communication
·      Identifying triggers
·      Staying positive (much easier said than done!)
We also talked about some strategies for moving on from a flare-up including:
·      Re-setting our baselines
·      Moving gently
·      Negotiating restarting activities e.g. with work, friends, family
·      Pacing up

Greg advised us to each come up with our own individual flare-up plan with our therapy team, so I hope to do that next week. He also suggested we could make a flare-up box with things we might need during a flare-up, for example our favourite drink/food, a flare-up plan, medication, distractions, relaxation tools etc.

Goal Setting – 1pm:
After lunch we had a group led by one of the psychologists. She started by asking us ‘what is a goal?’ and ‘how is it different from a wish?’ We thought of some reasons why we might need goals:
·      Help us to focus
·      Increases motivation
·      Makes things seem achievable
·      Increases confidence
·      A sense of accomplishment
·      Gives us a purpose

She then explained that they are split them into short- and long-term goals and must have value for the individual, otherwise there will be no motivation to achieve them. Long-term goals can include:
·      Something to achieve in the future, e.g. a new skills or something you used to do
·      Self-care e.g. dressing independently
·      Physical e.g. exercise class
·      Social e.g. go to the cinema with a friend
·      Relationships e.g. involve your partner in your flare-up plan
·      Educational/Work e.g. start a course
·      Emotional e.g. challenge negative thoughts, mindfulness, relaxation
To turn these into short-term goals you need to:
·      Break down long-term goals into smaller, attainable and manageable chunks

In order to set the best goals, we should ensure they follow the SMART principle:
·      Specific – be clear about it
·      Measurable – how will it be measured?
·      Agreed – with anyone involved
·      Realistic – achieveable
·      Timed – target time to achieve the goal

Greg (Physio) – 2pm:
I updated Greg on how I was getting on with my physio exercises so far. I then practiced my walking in front of a mirror so I could see where I’m going wrong. I put a resistance band around my knees to give me some feedback and help with proprioception issues. We then did some work on my shoulders because they keep popping out. Greg got me to lift my arms in different ways and felt what my shoulders were doing. Apparently I’m over-using my pectoral muscles and not using the others so my shoulders keep slipping out. He gave me a few exercises to try and improve my muscle strength:
·      Have a resistance band around my hands and lift my arms up in front of me
·      Shrug my shoulders and lift my arms to the sides
·      Lean on a gym ball with my arms, then roll it away from me and back towards me

Meal Prep with Elaine – 3pm:
I decided to try and make a goats cheese and caramelized onion tart, so Elaine let me try a few different knives with special handles while I chopped up the onion. They actually make things a bit easier. I paced my sitting and standing with the help of a stopwatch. Elaine helped me with lifting and carrying. It wasn’t too hard to make, and Elaine brought it over to the ward for me once it was cooked.

Myself and some of the other girls had the tart for dinner – it actually tasted really nice! I then went to the girls’ conservatory for the art group, where we were working with pastels, which was a bit messy! I started feeling really shaky, itchy, my lips started tingling and I was finding it hard to breathe – it felt like something was stuck in my throat. They had to phone the on-call doctor, who prescribed me some Piriton, as we decided I was probably having a mast cell allergic reaction. It helped a bit with my breathing but I still felt very itchy and tired.

Day Seven – Tuesday 23rd May 2017

I felt really groggy and sleepy when I woke up and was also feeling a bit down.

Your Move – Physiotherapy Gym – 9am:
We had our first session of Your Move for week two. I found it very relaxing again but was finding it incredibly hard with my shoulders.

Greg (Physio) – 9.30am:
We went over some of my exercises from Monday – I told Greg I was finding them painful and my shoulders kept moving, as well as getting pins and needles down my right arm. I practiced my walking whilst engaging my core muscles, which was hard work! Greg then got me to do some other exercises:
·      I stood on a balance cushion then threw and caught a ball with Greg
·      Lay with my knees bent, engaged my core and then lifted each foot a tiny bit off the floor

Chloe (Occupational Therapy) – 11am:
I read my magazine and chatted to the girls while I waited for my next appointment with Chloe. I chatted to her about how my weekend went and she reassured me that it’s really common to feel tearful and get anxious about how you’ll cope after you leave. We decided to focus on sleep for this session. Chloe talked about some of the principles of sleep hygiene:
·      Having a bedtime routine
·      Relaxing
·      Getting away from screens
·      Using your bed only for sleep
·      Sticking to the same sleep and wake times

She then told me a bit about how melatonin works and helps us to sleep:
·      It is a hormone that makes you sleep
·      If light and temperature go down, your melatonin levels increase
·      Your environment can make melatonin go up or down
·      Sensory cues e.g. smells, sounds etc. can induce production of melatonin
·      Routine and habits are important
·      There are also anti-cues, which limit production of melatonin including stress, mental health dip, over-stimulation
We then talked a bit about the sleep cycle and making sure you wake up at the right time.

Anatomy and Healing – 11.30am:
I had to dash back for this session, so was a little bit late. It was led by one of the physios and felt very much like a biology lesson! She talked about blood, bones, cartilage, joint capsules, ligaments, tendons, muscles and nerves. We also then talked about acute tissue healing and also the three stages of healing:
·      Inflammation à Immediately after injury
·      Proliferation à Repair 3-4 days after injury
·      Remodelling à Three weeks – scar tissue is remodeling – this can take up to two years

It was an interesting session, but I found there wasn’t much focus on non-typical bodies, like those of people with EDS. It was all about normal healing, whereas with EDS you take a lot longer to heal, so it would have been more helpful to have more of a focus on that.

After lunch, I fell asleep for quite a while because I was so tired.

Declan (Psychologist) – 3pm:
I thought I would have to ask for another session with Declan, but he came to see me on Monday and put another appointment on my timetable, which was a bit of a relief to be honest. This session was 100 times better than the week before. We talked about how I struggled at the weekend and my worries about going home to having no professional support again. He also asked about my self-harm, so I spoke to him a little bit about that. He told me that he thought I’ve been seriously hurt and let down by mental health and physical health professionals in the past, which I agree with. I then told him that I feel like a lost cause and that there’s nothing left to help me. He said that he wants to do everything he can to help me and offer me hope.

He’s going to contact my local services to try and get me the right support, but said he can’t make any promises. I cried a bit – it’s strange for a professional to actually understand and want to help. He recommended that I look at Arnold Schwarzenegger’s Six Rules of Success and also that I write down all the things I want out of my life.

Pain Talk with Physio – 4pm:
The physiotherapist started the talk by talking about ‘what is pain?’ We discussed the variability of pain and how nerves can malfunction and send the wrong pain signals sometimes. We also looked at what happens inside the brain with regard to pain, especially when it becomes chronic. It was around a concept called central sensitization. She advised us to look into TED Talks by David Butler and Lorimer Moseley, who are doing a lot of research and talking about chronic pain.

I had such a bad stomachache and nausea by dinnertime, so I tried to chat to the others and relax as much as I could. We had a bit of an eventful evening, as one of the nurses got locked in the staff toilet. So we had security and estates people trying to break down the door, as well as half the patients trying to help. I came up in a horrible rash again all over my chest and face, so had to take some more Piriton.

Day Eight – Wednesday 24th May 2017

I didn’t sleep well at all – I kept waking up every hour in pain and feeling sick. I felt awful when I got up – really faint and dizzy, and my heart was racing. I managed to have some breakfast and tried to drink some water to see if that would help.

Your Move – 9am:
We were meant to have Tai Chi, but as the person still wasn’t here we did Your Move again. I started doing the stretches but could feel myself swaying on my chair – my heart was racing and I felt really faint and dizzy. Thankfully one of the physios spotted me, put my legs up on a chair and got me lots of water to drink, which helped a bit.

I went back to the ward after that and slept for just over an hour. When I woke up I didn’t feel great, but was less dizzy and faint.

Chloe (Occupational Therapy) – 11am:
I chatted to Chloe about my bad night’s sleep and what could have caused it. We came up with a few possibilities including:
·      Increased pain
·      Disturbed by the commotion of people trying to break down the staff toilet door
·      It was too hot
I told her how bad I was feeling earlier and she said it was good that I listened to my body and went and had a nap. We decided to focus on sleep positions to try and reduce pain, dislocations etc. She gave me a few different suggestions including:
·      Lying on my back à Putting pillows under my knees to tilt my pelvis into a more neutral position
·      Lying on my side à A pillow under my top arm to help it not be pulled out by gravity, and a pillow between my knees for comfort
·      She suggested I looked into a maternity body pillow in the shape of an ‘S’

Greg (Physio) – 11.30am:
I talked to Greg about how I’m getting on with my exercises. We chose to focus on my neck, as it causes me so much pain. Greg worked out that I’m using the wrong muscles to hold up and move my head and neck, which could be contributing to my pain. So he gave me a couple of exercises to try and engage deeper muscles:
·      Lay on my back – I had to move as if I were going to make a double chin, but only really gently and I need to make sure I’m not working the big muscles on either side of my neck
·      On all fours with my head hanging down – lift my head and neck as one unit very slightly to work the muscles in the back of my neck

Back on the ward I had my lunch and chatted to the girls.

Coping Skills - Assertiveness – 1pm:
Mel, one of the psychologists, led this group. We talked about the meaning of assertiveness and different styles of communication including passive, assertive and aggressive. For each method of communication, we discussed how each one presented itself and the short- and long-term effects of using them. We then talked about where our communication style comes from, why we find it so difficult to be assertive, why assertiveness skills might be helpful and ways to improve our assertiveness. These include:
·      Body language
·      Listening and understanding
·      Communication
·      Making requests
·      Refusing requests

Recreational Movement – 3-4pm:
I went in my electric wheelchair up to the Aspire Gym this time, as the weather was so nice. It was good to get outside for a bit and have some fresh air. I sat and did a bit of table tennis and badminton, but my right shoulder kept coming out. When I got back to the ward it was really painful.

I tried to sleep but couldn’t, so one of the nurses gave me some ice to put on it and I lay down. We ordered Nando’s for dinner to celebrate a couple of the girls’ final week. I could only eat a tiny bit though because I felt really sick and unwell.

Day Nine – Thursday 25th May 2017

I slept a bit better on Wednesday night, which was much needed.

Your Move – 9am:
A different technician, who had a really relaxing voice, led this – I was almost asleep! Unfortunately I really struggled with my right shoulder though.

Chloe (Occupational Therapy) – Goal Setting – 9.30am:
I told Chloe about the problems I’m having with my right shoulder – she said that I need to keep my arm supported to help keep my joint in place and stop my muscles going into spasm. We went through some goals for the weekends ahead and I came up with five this week:
1.    Plan and think about what I can put in my flare-up box
2.    Write down things that I do want for my life
3.    Read Arnold Swarzeneggar’s Six Points for Success
4.    Try and do a couple of physio exercises each day, but only a couple – little but consistent
5.    Browse equipment discussed during week two e.g. pillow, knives

Health Promotion Talk – Smoking – 11am:
The lead psychologist led this talk about stopping smoking, which was compulsory for everyone. He talked about the dangers of smoking, what’s in cigarettes and how stopping smoking can improve your health. I personally didn’t get anything from it because I don’t smoke and think they should make it a more inclusive talk. They could focus on a range of risky behaviours alongside smoking such as drinking, drugs, addiction etc. He did ask us for feedback on the whole programme at the end of the talk though, which sparked a lot of conversation.

After lunch we went and sat in the conservatory ready for a Work Support group, but it got cancelled, which was a shame, so I had a rest.

Water-based physiotherapy – 2.15pm:
We went to the Aspire Gym again to use their swimming pool. The physio put a chair in the water for me at the start this time and got us a big jug of water to drink. One of the physiotherapists stayed with me and helped me pace my exercises. I felt really faint, especially getting in and out of the pool, but they really looked after me well.

A few of us decided to go to the Aspire Gym café for a cuppa (or smoothie) afterwards, which was a nice social activity. We then walked/wheeled back to the ward and I slept for a while. After diner I was feeling really low and cried a bit. Nurse Mary came and chatted to me and gave me a hug, which helped a bit. The girls then cheered me up by raising their beds as high as they could (it was a lot funnier that it sounds!) We were in fits of giggles, then spent the rest of the evening chatting with the men.

Day Ten – Friday 26th May 2017

After getting up, dressed and having breakfast we were meant to have DIY Your Move. John, one of the patients, came and ‘led us’ in a few stretches, which mostly consisted of as all laughing and not doing much else!

Discussion Group – 9.30am:
I assumed we would be talking about our week again, but in this group we were chatting about the concept of pacing. In small groups we looked at an example of someone’s week and had to work out where they were going wrong with not pacing and how they could improve. We then talked about pacing more generally and how we’re getting on with it.

Relaxation – 10am:
Elaine, the technician, led a visualization session about going to a beach. Ordinarily I think I would have found it really relaxing, but I was really struggling and just couldn’t calm down and relax.

I went back to the ward to do some packing. Declan came to see me, asked me how I was feeling and I just burst into tears. He chatted to me for a while and I opened up a little bit about how I’m feeling, but I’m worried about opening up too much because I know that this time next week all that support will be gone. We talked about how to keep myself safe over the weekend.

Everyone else gradually left but my Dad couldn’t get to me until later, so I ended up being the last one there. I started crying again – the tears just seemed to keep flowing and I couldn’t stop them. Nurse Gwen noticed I was upset so she sat with me and chatted for ages, which helped. My Dad and Richard picked me up and we had lunch at Sainsbury’s café. Traffic on the way home was terrible, probably because it’s a Bank Holiday weekend, but we managed to find lots of back roads. I spent the rest of my afternoon watching Hollyoaks and crying. I haven’t been in a great place for a while but I’ve been trying to bury it inside and paint on a smile. I think starting to try and talk about it has just opened the floodgates and now I don’t know how to shut them. Things just feel very dark at the moment and to be honest I’m terrified of losing the support of Stanmore after next week.

You can check out my YouTube channel here, where I have recently uploaded a few new videos (and hope to continue doing!) I will also be uploading some videos about my time at Stanmore.

I’m also trying to post on Snapchat a bit more, so if you fancy following me, my username is Jennycole44.

If you don’t already, please give me a follow on Bloglovin here - I would love to reach 800 followers and we’re so nearly there! I do have a little giveaway planned for when I get there!

What have you been up to this week? I always enjoy hearing about your news and adventures! I’d also be interested to hear if you’ve ever been to Stanmore or are waiting to go.

post signature


  1. It really sucks that there was hardly any personal accounts out there for you to read before you went in, but at least the next person who looks into it will have your posts to read too!

    Steph -

    1. Thank you Steph - that's what I'm hoping by writing these posts. I've had some great responses from people so far, so it's good to know that other people are finding it helpful :) xx