Monday, 10 July 2017

Week Three: Stanmore Pain Management and Rehabilitation Programme

If you read my last few blog posts, you will know that I’ve been writing about my time at The Royal National Orthopaedic Hospital Stanmore on their 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. As you’ll know from my previous two posts, they are 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 am also planning 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 got them sorted. So if there’s something you’d like me to post about, please let me know. I hope you will either find these posts helpful if you’re waiting to go on the programme, or find them interesting if it’s not something you’ve experienced before.

Day Eleven – Tuesday 30th May 2017

As Monday was a Bank Holiday, I had an extra day at home and didn’t have to go back until Tuesday. This meant that our programme had to be squashed into four days, so my final week was going to be busy! I was up at 5.30am again so my Dad could drive me back to Stanmore. Luckily the traffic wasn’t too bad, so I arrived at about 8.15am. I was shattered already, so unpacked my things and rested on my bed while the other ladies arrived.

Greg (Physio) – 10am:
As we missed out on having our Monday at Stanmore, things had to be moved around to ensure everything could be fitted in. So I wasn’t able to go to the normal weekend review group, but instead saw Greg (my physio) and we went through my weekend goals to see what I’d achieved:
1.     Plan what might be in my flare-up box à I wrote my ideas in my notebook, so just need to put the box together now
2.     Write down things that I do want for my life à I found this quite emotional because I struggle to see a lot of it happening, but I managed to write some things down that mean a lot to me
3.     Read the article ‘Six Points for Success’ by Arnold Swarzeneggar à It was actually quite an interesting article, so I thought I would share a summary of the six points he made: 1. Trust yourself. 2. Break the rules. 3. Don’t be afraid to fail. 4. Don’t listen to the naysayers. 5. Work your butt off. 6. Give something back
4.     Choose physio exercises to do each day (but not all of them every day!) à I managed to do a couple each day but really struggled with my right shoulder, after it dislocated
5.     Browse equipment discussed in my second week e.g. pillow, knives à I looked online at some kitchen bits I’d been recommended. I also had a look at different pregnancy pillows and found the following, which looked good: Kit for Kids Cuddle Me Pregnancy Pillow or By Carla Heat Regulating Cuddle Me Pregnancy Support Pillow

After going through my weekend goals, I told Greg about my right shoulder and how I couldn’t feel my arm and hand properly. He didn’t really give any advice apart from not to do a couple of my exercises. We decided to work on stairs after that, so Greg watched me walk up and down their stairs first. He then gave me some advice for the best way to do it. I need to remember ABC when going upstairs, which stands for Able leg, Bad leg, Crutch – this is the order you should go up in. Going down is the opposite, so Crutch first, Bad leg and then Able leg. I also did a couple of gym ball exercises to help strengthen my core muscles.

Chloe (OT) – 10.30am:
Straight after, I had a session with my Occupational Therapist, Chloe. We had a chat about what I wanted to focus on this week and decided it would be a good idea to think about how I will cope and apply things practically over the next three months when I go home. We looked at what I’ll be doing for the next three months, which turned out to be no real plans other than hospital appointments and a week in Ireland. Chloe seemed to understand that having no plans can be just as scary as having lots to do, because it can feel very difficult to find motivation to fill your time. She talked to me about occupational balance and gave me a sheet she’d put together with different types of activity. The idea is that you should try and do things from each section over a day/week to help you feel fulfilled. The categories are: Productivity, Leisure, Social, Relaxation, Movement and Me Time. We finished the session by thinking of a few things to put in these categories that I already do.

As I was finished by about 11.30am, I went back to the ward and had a nap, which was much needed after my early morning. I had my Fortisip once the other girls came back to the ward.

Maintaining Change – 1pm:
My psychologist, Declan, gave this talk to the three of us who were in our third week. It was a relatively quick and ‘easy’ talk. He reminded us of the stages of change model, which we were introduced to in our first week. We then discussed some of our motivations to keep going. I found this quite difficult to talk about, because I was feeling very low and when I feel that low it’s hard to identify reasons to keep going. Declan then spoke to us about the things that make it difficult to maintain change, for example, life getting in the way, our health throwing up curve balls etc. We also chatted about the difference between a lapse and a relapse. Basically, a lapse is more of a blip, where things go a bit wrong but you quickly get back on track again. Whereas a relapse is much bigger, so things go wrong but you then find it harder to get back on track again. He talked to us about how to get back on track after a slip-up, so, for example, by using them as an opportunity to learn or by reviewing events that triggered them and making changes to stop it happening again.

Relaxation – 3pm:
Elaine, the therapy technician, led this relaxation session. She talked us through a progressive muscle relaxation exercise, which I found quite relaxing, although I struggled a bit with my painful shoulder.

Pain Talk – 4pm:
For some reason this was the same talk we were given in week one about understanding and communicating pain. I’m not sure if it was deliberate, or whether we were meant to have had a different talk, but we had a few new patients in with us so had slightly different conversations to the previous time.

Declan (Psychologist) – 5pm:
I had another session with Declan, which I really needed, as so much was brought up in my time at Stanmore. A lot of it was completely unrelated to what we were doing, but apparently that can happen when you’re in a safe space with a lot of support. Declan seemed to be able to read me so well and knew exactly the right questions to ask. I cried a lot during our session and he said he was going to see if a Psychiatrist at the hospital would see me before I leave.

After dinner, I went down to the lake behind our ward with one of the girls (Lydia). It was a really nice distraction after a difficult psychology session and is such a calm hidden gem. I struggled to sleep after my talk with Declan and had a pretty bad night.

Day Twelve – Wednesday 31st May 2017

I woke up feeling really terrible after a bad night. I was really tearful and felt very wobbly. I went over to the physio department to do Your Move but was struggling to hold back the tears. I went back to the ward afterwards and had a bit of a nap.

Greg (Physio) – 10.30am:
We started by having a chat about how I was feeling, which helped a bit to just get out some of my thoughts. I wanted to work on my shoulder, as it was still really painful. Greg got me to do a couple of exercises lying on the floor with a gym ball first. Then I lay on the bed and Greg very slowly moved my arm back and forward – it was such a tiny movement but hurt so much! It did seem to get my shoulder feeling a little more stable though. He told me he thought all the muscles around my shoulder had gone into spasm because of the dislocation, so I was given some stretches to try and relax them slowly and gently.

Chloe (OT) – 11.30am:
When I saw Chloe she could obviously tell how much I was struggling and told me it was OK if I needed to have a cry. So I did – it was good to have a professional to cry with who actually understood and didn’t judge me for struggling. Once I’d had a cry, Chloe got a blank schedule and we tried to start planning what I was going to do the following week, as I was finding the thought of leaving very overwhelming. We put in all my appointments and talked about trying to get into a good routine of when I get up and go to bed. She also printed out a big list of leisure activities to try and give me some ideas to think about. I struggle to do many leisure activities, so hopefully it might give me some things I can try out.

Coping Skills – Managing Mood – 1pm:
The last of our ‘Coping Skills’ groups was led by one of the psychologists. We started by talking about the difference between thoughts and feelings, and why they are important - They are part of how you cope with a chronic health condition. We then talked about the relationship between thoughts, feelings and behaviour using a CBT model, so thoughts affect feelings, which affect behaviour, and it all goes round in a big circle with them each having an affect on each other. This model was used to look at relationships with regards to depression, anxiety/worry and anger/frustration.

We then identified some typical negative automatic thoughts, and came up with ways we could challenge them. I didn’t find this massively helpful to be honest, as I’ve never got on very well with CBT methods. The psychologist did also talk about mindfulness strategies, which is something I’m trying to investigate further for my own personal coping mechanisms. We identified the following unhelpful thinking styles:
·      Catastrophising
·      Mental filter
·      Black and white thinking
·      Personalisation
·      Extreme statements/rules
·      Labelling and overgeneralizing
For each parts of the CBT model cycle, we then thought of exit strategies we could use to get ourselves out of that negative circle.

I found the whole group quite difficult with already really struggling to manage my own mental health problems. So I ended up going and crying in the bathroom for over an hour after the group had finished. It’s really scary when you can feel your mental health slipping and don’t feel like there’s anything you can do.

Recreational Movement – 3pm:
I tried to freshen myself up a bit, and then made my way over to the Aspire Gym with a couple of the other patients. I found it quite a struggle to do the activities because my right shoulder was still causing me a lot of problems. I tried to play table tennis using my left arm (which wasn’t easy!) and also did some of the gym ball exercises. After that, my physio, Greg, advised me to stop and rest, which I appreciated. So I sat and chatted to him, whilst watching some of the others play badminton and tennis.

Back on the ward, I had a sleep, as I was feeling pretty rubbish. The lady from EDS UK came in again (she comes every other week, which is fantastic) so I chatted to her and some of the other patients for a while. It feels amazing to talk to other people who completely get what it’s like to have EDS, as well as talking to someone who has so much knowledge of different specialists and support services. Unfortunately, I had to go and lie down because I wasn’t feeling great. I had another pretty bad evening, but Nurse Mary sat and chatted to me for a while, which helped a bit. I was also sent a copy of my brother and sister-in-law’s scan picture, which helped me to keep smiling.

Day Thirteen – Thursday 1st June 2017

I slept a bit better thankfully after my chat with Nurse Mary, and went over to the physio department for my last session of Your Move. I was still struggling to do some of the exercises though because of my shoulder.

Goal Setting with Greg and Chloe – 9.30am:
We started the session by chatting a bit about how I was feeling. I was still feeling very low and anxious, so it was helpful to have an honest chat and they tried to reassure me a bit. Wee then had to come up with my three-month goals, which took us quite a while and I’m pretty sure my session ran over! I managed to come up with the following things to try and achieve over the next three months. For each goal there is a numerical scale to help us rate how well I have achieved each one. It makes it easier to evaluate how well I’ve got on:
1.     Do my physio exercises:
a.     -2 = Least favourable outcome à Consistently not motivated and not doing my exercises
b.     -1 = What I can do now à Already doing exercises and know they are important
c.      0 = Expected level of achievement à Choose a selection of my exercises and do them 1-3 times a week
d.     +1 = Better than expected à Doing exercises 4 times a week
e.     +2 = Most favourable outcome à Doing exercises 5-7 times a week
2.     Do some active relaxation:
a.     -2 à Giving up on it completely
b.     -1 à Practicing relaxation sporadically
c.      0 à Regularly practicing relaxation when I’m feeling OK
d.     +1 à Starting to practice during times of stress/low mood
e.     +2 à Effectively using it when stressed/low
3.     Flare-up plan:
a.     -2 à Not wanting to change my flare-up management
b.     -1 à I panic and isolate myself and don’t feel proactive
c.      0 à When in a flare-up I have thought about my flare-up plan
d.     +1 à Think about my flare-up plan and try and implement some strategies
e.     +2 à Implement strategies and feel more confident to manage and more in control
4.     Use coping skills for mental health:
a.     -2 à Feeling out of control
b.     -1 à Feeling caught up in my thoughts
c.      0 à Developing a coping plan similar to flare-up plan. Look at WRAP plan by Mary Ellen
d.     +1 à Start trying to use my coping plan
e.     +2 à To be using my coping plan and feeling more in control

I was pretty exhausted after coming up with all that, so went and had a rest back on the ward.

Health Promotion – Healthy Eating – 11am:
Our final Health Promotion talk was given by one of the senior nurses, and this time was about healthy eating. I was already feeling quite skeptical about it to be honest, as for someone with severe digestive problems, the usual healthy eating advice isn’t very helpful. We started by talking about the challenges to eating healthily:
·      Physical limitations e.g. unable to shop, lift, carry, prepare food
·      Emotional difficulties e.g. comfort eating, loss of appetite
·      Financial problems
The nurse then talked about the six essential nutrient groups:
·      Carbohydrates
·      Protein
·      Fats
·      Vitamins
·      Minerals
·      Water
And also talked about Glycemic Index and how this affects your blood sugar:
·      GI refers to how quickly blood sugar levels rise after eating a particular food
·      Low GI foods make you feel fuller for longer

We discussed the concept of eating your ‘Five a Day’ and the fact that some research suggests it should actually be a lot more than five. We also talked about getting an adequate fluid intake, and us patients talked about how this is a lot more if you suffer from POTS. Alcohol intake also came into this, but I don’t really drink an awful lot. We then looked at the different sources of vitamins and minerals and what you can eat to ensure you get everything you need. As I expected, for someone with my digestive problems it wasn’t any help really, as my gastroenterology team has given me specialist advice. I also found some of the discussion incredibly triggering for my eating disorder, which the nurse didn’t seem to take into account. So I ended up leaving the group having to then deal with worsening eating disorder symptoms, as well as my already declining mental health.

Work Support Group – 1pm:
After lunch, we had the Work Support Group that we were meant to have in week two, led by my occupational therapist, Chloe. She started by asking us what we thought was meant by the word work?
·      Paid employment – Full and part-time
·      Studying/training
·      Voluntary work
·      Carer role – for children/older relatives
The group then discussed some of the challenges that get in the way of working:
·      Physical limitations
·      Unpredictable illness (this is a big one for me! It’s hard to find someone who would want to employ a person who has no idea how ill they will be day-to-day)
·      Financial pressures
·      Lack of work-related health advice
·      Low mood/confidence
·      Lack of qualifications/experience
·      Different perceptions of employer/colleagues
Chloe talked to us about some strategies that may help to overcome these challenges:
·      Communication
·      Pacing
·      Improving posture
·      Lifting and handling with an OT
·      Relaxation
·      Assertiveness
·      Challenging negative thinking
·      Regular stretching/gentle exercise

After talking about work in general, we then looked at steps to take depending on where you are when it comes to work. So for someone who doesn’t work at all and perhaps wants to prepare to start some kind of work, they could:
·      Do a skills test – try to find out what your skills are and the types of jobs that might suit you
·      Job shadowing – try out different jobs first to see what you like
·      Volunteer – Look at a website such as Do It, as sometimes volunteering can be more flexible than paid work
·      Further study to gain qualifications
·      Business grants – if you want to become self-employed and set up your own business
If you’ve already started applying for jobs, and are going through interviews, the following might be helpful:
·      Be realistic when applying for jobs – I’ve learnt this over the years, as I always wanted to be a doctor, but eventually accepted that it wasn’t a realistic career for me
·      Do you want to disclose your health problems before your interview? This is completely up to you, but I’ve always preferred to be upfront from the start so the company can make adjustments
·      How to present a health condition in a positive light – a lot of the time it can feel like being unwell is a massive negative. But actually, you develop a lot of really useful skills when you have a chronic illness, for example, learning how to be flexible and creative when trying to do things healthy people might take for granted
·      Two tick system – this is given to employers who have made commitments to employ, keep and develop skills of disabled staff
If you are already in work and wish to continue to work, there are also things that can help make it a bit easier and can offer support:
o   Disability employment advisor – these are at any Job Centre Plus and are not health professionals
o   Access to Work – a Government funded programme that assesses you to see what equipment and support might help. They also make recommendations to employers
o   Talk to your employer about anything you are finding difficult
o   Occupational Health can help with a lot of things
o   Trade Union – some positions have unions, who can help with standing up for you
o   Equality Act 2010 – it’s important to know your rights, so have a read of this

After our group, we had to make a quick dash up to the Aspire Leisure Centre for water-based physiotherapy. The building was the hottest it’s been in the three weeks I was there, but thankfully the pool was cooler, which helped with my POTS a bit. Greg led us this time, and did some gentle exercises and movements. We were given some free time at the end of the session, but I was feeling very tired so decided to get out and get changed. I found it really hard to get dressed because of the heat. I then went back to the ward and fell asleep for a while.

Declan (Psychology) – 5.30pm:
I had a really difficult conversation with Declan in this session, but it was something I needed to talk about, as it’s something that is massively holding me back. He said he wanted to get my local mental health crisis team involved in my care, so was going to look into that. I haven’t had great experiences with them in the past, so was quite worried about that prospect. A Psychiatrist at Stanmore wasn’t able to see me because there wasn’t enough time, which was quite frustrating, as the ward doctor had promised to refer me to one on my first week but never did. I decided to give Declan the key to my medication cupboard. It was a really hard thing to do, but I was getting a lot of suicidal thoughts and having that key was a massive temptation. He said he really appreciated me being honest with him.

I cried with a couple of the girls afterwards, who were brilliant and sat outside with me and tried to make me smile. We all ordered pizza for dinner to celebrate us leaving. We also toasted marshmallows with a lighter and the girls made me laugh, which I really needed.

Day Fourteen – Friday 2nd June 2017

As I’d given my medication cupboard key in, the nurses had to do my medications in the morning, which took quite a long time to sort out. I was very tearful and felt very low. The thought of leaving behind all the support of the staff and the friends I’d made over my three weeks was horrible.

Discussion Group – Sleep – 9.30am:
Elaine, the therapy technician, ran the discussion group as normal. This time it was centered around sleep. She had a bag of cards with pictures on and each person had to pick one out. The group then discussed how it related to getting good sleep. Things that can cause sleep difficulties include:
·      Pain
·      Eating too late
·      Alcohol
·      Anxiety
·      Noise/light/temperature
·      Napping in the day
·      Poor routine
·      Too much/little activity
·      Technology usage
Some strategies to improve sleep are:
·      Wake up at the same time every morning and go to bed at the same time every night
·      Avoid alcohol and caffeine in the evening
·      Exercise regularly, but not before bed
·      Stop smoking
·      Make your environment conducive to sleep e.g. no noise, not too hot/cold, dark
·      Check your mattress quality
·      Develop a good laying posture – talk to your OT
·      Relaxation techniques
·      Regular daily routine
·      Wind down routine

I didn’t find the group massively helpful to be honest, as I’ve already gone through sleep hygiene with other health professionals, so there wasn’t anything new. I would have found it more useful to discuss how it feels to be leaving.

I did some packing and said goodbye to the other ladies. Most of us exchanged contact details and promised to keep in touch, which is really lovely. I then rested and did some writing until my Dad arrived around lunchtime.

Declan (Psychologist) – 1pm:
Declan wanted to speak to my Dad about what’s been going on with me, so we had a group meeting. He told my Dad how low I’ve been and asked him to keep an eye on me. He said he would speak to my Psychotherapy assessor about what we’ve spoken about. I got very tearful, so Declan then spoke to me on my own. I was feeling incredibly low and really worried about how I was going to cope without any support. We chatted some things through and he said he would ring me the following Monday or Tuesday to see how I was, which I really appreciated. He decided not to get the crisis team involved; as he was concerned they would make things worse. I ended the session by giving him a thank-you card and present, and also my ‘Good Care’ heart. I had a couple of people I was thinking of giving it to, but felt that Declan had really gone out of his way to try and help me.

My Dad then brought me home, where, if you’ve read my recent mental health post, you will see that I continued to struggle quite a lot. Ideally, I would have continued to see Declan to go further into some of the things I am finding difficult, but unfortunately he was leaving fairly soon after my admission.

I think I will probably write a separate post to talk about my overall experience of Stanmore, so I won’t go into it too much here, as I want this to be more of a factual account. But I hope these three posts have been helpful in explaining what the three-week programme is like.

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 recently? 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.

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  1. Read this with interest Jenny. Hope you don't feel unsupported at home x sounds positive on the whole and you came away with some useful information x Declan sounds good. My mummy starts physo soon hopefully on the NHS, she's just waiting x

    1. Thank you Dawn. It was definitely a positive experience on the whole and I learnt a lot from the people around me. Just trying to put things into practice now and cope with being back in the real world! I hope you get your physio appointment soon and that you find it helpful xx