As I mentioned last Sunday, my next three Sunday posts
will be a little different. Instead of the usual Sunday Snippets, 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 on Monday, 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. 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 One –
Monday 15th May 2017
I had to be up super early on Monday morning, as I
needed to get to the hospital for 8.30am! My Dad and Richard drove me there but
unfortunately we were a bit late because the traffic was terrible. Luckily it
wasn’t a problem though, and when I arrived a volunteer showed me around the
ward and took me to my bed area (Bed Five if you’re interested, right next to a
window). I unpacked a bit, and then had my weight and height done before a nurse
took me through lots of paperwork.
Welcome meeting – 10am:
There were a few of us newbies starting the programme
this week, and also a couple who were just coming in for a week, so we went to
one of the conservatories and had a meeting to welcome us. They introduced the
programme a bit and gave us timings for things like getting up, meal times,
visiting etc. We were given a welcome pack, which included some earplugs, a
sleep mask, paper, pen, socks and a badge that says ‘I delivered great care.’
At the end of our stay we give this badge to the member of staff we believe
really stood out to us, which I think is a lovely idea. We were also given a
big book, which has our timetable and all the information from the talks we
will have in it.
Back at my bed, I had to fill out a meal form for what
I wanted to eat that day. The selection for a limited diet (e.g. gluten and
dairy free) is, well, limited! So my first piece of advice would be to make
sure you bring plenty of snacks with you! I started chatting to a few of the
other ladies on the ward.
Psychology group – Making Changes – 11am:
Myself and the other new starters had a group with one
of the psychologists about making changes to try and prepare us for the three
weeks ahead. We were told to think about the reasons we are at Stanmore and why
we need to change. We then talked about resistance, so things that stop us
changing, and the different ways we all learn things. We were told to have a
think about any specific things we wanted to focus on during the programme.
Lastly, the psychologist went through something called the Five Step
Behavioural Change Model, which are five stages you go through when making
changes (you don’t necessarily go in a straight line, and you may go backwards
and forwards too). The five steps are:
1. Precontemplation
2. Contemplation
3. Preparation
4. Action
5. Maintenance
After the group I chilled out, read some of the
programme and chatted. One of the nurses came round with a leaflet about their
family group, but it’s too far away for my parents to travel to.
Physiotherapy Group – Pacing – 1pm:
The physio running the group talked to us about what
pacing is and why we need to pace. I must admit when I heard the word pacing I
started to switch off because I’ve never really got on with it, but the physio
was so understanding of EDS and how hard it can be and explained everything so
well. We talked about the boom and bust cycle, which I know is something I’m
very good at, and avoidance and how you can end up in a vicious cycle of
increasing pain, avoiding activity, deconditioning and further increases in
pain. There was then a group discussion about how exactly we are meant to pace.
Basically, you’re meant to find your baseline for a certain activity and start
with this. Your baseline is what you feel able to do without too much increase
in symptoms. When you’ve managed your baseline for a few weeks you can then
start to build on it very slowly – it’s definitely not a quick process. We also
talked about flare-ups, which can happen even if you are pacing perfectly. The
physio made sure we were aware that having a flare-up does not mean we’re a
failure.
Review with my Occupational Therapist and Physio –
2pm:
I met up with Chloe, my Occupational Therapist, and
Greg, my physio, for an initial meeting. We started by going through an
activity safety questionnaire, so they could work out anything I shouldn’t be
doing or may need help with. Then we went over my initial assessment forms and
I explained things in more detail and updated anything that has changed. This
led us to setting some goals that I would like to work towards over my
three-week stay:
1. Get
my head around a relatively new diagnosis of Ehlers-Danlos Syndrome
2. Learn
to manage my conditions
3. Address
my tendency to boom and bust
4. Explore
‘normal’ forms of exercise that I could manage
5. Open
discussions about living more independently – concerns, barriers etc.
I was shattered after all this, but luckily we then
had some time to just rest and relax. Dinner was at about 5.45pm and I had a
jacket potato with tuna mayo – I can see myself eating a lot of these over the
three weeks! There was an art group with an art therapist from 6.30 – 7.30pm,
which was a really nice way to chill out, be creative and chat to some of the
other ladies.
Day Two –
Tuesday 16th May 2017
Despite it being really hot on the ward, I actually
managed to sleep relatively OK. And as well as that, I somehow managed to wake
up before 7am without an alarm! I think the fact I could hear other people
getting up, nurses chatting etc. helped with that. I had some Cornflakes with
soya milk for breakfast, but they didn’t taste too great so I also had a piece
of gluten-free toast with jam, which was much nicer.
Your Move – Physiotherapy Gym – 9am:
To start our day we had a group called Your Move. It
was in the physio gym, so some people had to be portered down there, but I had
my electric wheelchair so was able to get myself there. The group consisted of
us all sitting on chairs and doing some very gentle stretching exercises to
music. We were told we could do as much or as little as we could manage. I
found it very relaxing, although I did sublux my shoulders during one
particular exercise.
Physiotherapy – 9.30am:
I saw Greg and a student called Al, who both seemed
very nice. They asked me what my worst problems are, which isn’t a particularly
easy question to answer! But I said that my back, neck and legs seem to affect
me a lot. We decided to start by focusing on my walking. They assessed my
standing, the strength in my legs (not much!) and then watched me walk with my
stick. Al told me that my hips are rolling my knees inwards so I stand and walk
on the outside of my feet. I also swing my legs out sideways when I walk, which
is using up more energy. It’s strange to hear things like that because I had no
idea I was doing it! They put me on the double bars and I had to practice
walking ‘normally’ with regular rests, as I was finding it really tiring and
painful.
Occupational Therapy – 10.15am:
After physio I met up with Chloe and she chatted me
through a long assessment form that looks at different areas of your life that
you might have difficulties in e.g. self care, socializing, household
management and productivity. We talked about my difficulties with meal
preparation and cooking due to my restrictive diet, as well as physical
problems. Once we had finished the assessment, we came up with some areas I
wanted to focus on such as traffic light pacing, meal prep, baths/showers and
independent living.
I came back to the ward and rested on my bed for a
while. I’m so glad I took my electric wheelchair, as some people had to wait
around for porters, so it means I can be more independent and get proper rest
breaks.
Introduction to Relaxation – 1pm:
Chloe, my OT, led this session. We talked about stress
– what it is, why is happens, what happens to our body during a stressful
situation and its link with pain. Chloe then explained a bit about the
autonomic nervous system to us, but it was something I already knew from my
POTS diagnosis. We chatted about how relaxation can help us to cope with pain
and then went through some different relaxation techniques like deep breathing,
visualization, progressive muscle relaxation and mindfulness.
Psychologist – 3pm:
I was assigned a psychologist called Declan, who is
from Ireland and has a lovely accent! He started by asking me what my goals
were for the programme. I mentioned that I would like to learn skills to manage
my illnesses and he asked me if I thought I was ill, which I thought was a bit
strange. He then started talking about failure and asked what I would feel like
if I was asked to leave the programme early. I struggled to answer, as I wasn’t
quite sure what he was getting at, but he then started Googling Olympians and
failure to find some quotes. He said that I need to embrace failure and that I
need to put my condition in the background and not just try to get through
things but live my dreams. I couldn’t quite work out whether he understood what
it’s like to be chronically ill and struggle with every little thing. Putting
your condition in the background isn’t as easy as it sounds! At the end he told
me that if I wanted to see him again then I needed to ask. I assumed I would be
offered several sessions over the course of the programme to try and work
through some issues, so I found it all a bit strange.
I felt exhausted and had a splitting headache after
all that, so had a bit of a nap on my bed.
Psychology Pain Talk – 4pm:
A psychologist called Kelly took this session and she
seemed really understanding and lovely. She talked to us about how we
communicate our pain to others and why we need to communicate it. She also made
it clear that they are in no way trying to tell us that our pain is
psychological – it’s a Biopsychosocial issue, which means that the biology,
psychology and social aspects all interact and affect each other. We then went
on to talk about primary and secondary suffering, which isn’t something I had
heard of before. Primary suffering relates to the actual sensation of pain,
whereas secondary suffering is the thoughts, feelings and memories associated
with that pain. Finally we talked about acceptance, which can really help with
secondary suffering – it is not giving in though!
For dinner I had Corned Beef Hash, which was a
Wiltshire Farm Foods meal like my Gran used to have! It was quite nice though,
which was good. I was feeling pretty crappy, so one of the girls suggested I
had a shower and a bit of a pamper, which perked me up a bit. A few of us
played cards and laughed a lot, which was a nice distraction.
Day Three –
Wednesday 17th May 2017
I was so hot when I woke up – the radiators always
seem to be blasting out heat and I’m right next to one, which doesn’t help. We
were meant to have Tai Chi at 9am, but the person who usually does it wasn’t in
so we did Your Move instead.
Physiotherapy – 9.30am:
I just had Al (the student) for my physio session and
he looked at my walking again. My hips and legs have been so sore. He wanted to
work a bit on my core strength, as it’s so important for all sorts of things
including walking, so he assessed it and it’s very weak. We then went through
some exercises to try and improve it:
· Off-set
bridge – I have to lie down and tilt my pelvis back and forth
· Part
my knees when lying on one side
· Lie
on my back with my knees bent and apart and hold them there. I needed a
resistance band for this, as my legs shake like crazy. Al told me I have a poor
sense of proprioception, which basically means because of my EDS my brain
doesn’t know where my joints, muscles etc. are and therefore struggles to
control them. It explains my shaking and also why I’m so clumsy.
Occupational Therapy – 10.15am:
Chloe helped me do a ‘typical’ daily schedule using
the traffic light pacing system:
· Red
= Significantly increases pain and other symptoms
· Amber/Yellow
= Moderately increases pain and other symptoms
· Green
= Turns pain and other symptoms down – relaxes/distracts
We went through a normal Uni day and colour coded each
activity. Looking at the colours, it was easy to see that I have way too much
red and yellow and barely any green. We chatted through some of my green
activities such as resting on the sofa, watching mindless TV, having a bath and
even going to the loo for some quiet time at Uni. I need to try and find some
more green activities then plan how to space out my days with red, yellow and
green activities.
Back on the ward I rested for a while. I finally
managed to get Instagram to work, so posted a few pictures I’d been saving up.
Coping Skills – 1pm:
This was another group run by one of the psychology
team. We talked about family and friends, how our conditions affect them and
how they react to us when we are in pain/more unwell. We then looked in more
detail at:
· The
effects of chronic pain on partners
· The
effects of chronic pain on children
· The
effects of chronic pain on family and friends
I found it a bit difficult talking about partners and
children, as there wasn’t really much conversation or material about how
difficult it is to actually find a partner and have children.
Recreational Movement – 3-4pm:
A taxi took us up to the Aspire Gym, which is on the
same site as the hospital and is specially designed for people with
disabilities. When I heard about this session I was absolutely dreading it
because it sounded like it would be like a school P.E. session! But it was
actually pretty good, as each ‘sport’ was adapted so everyone could have a go.
So, for example, I sat on a chair and played a bit of table tennis, sat and
played hoopla and sat on a gym ball and did a bit of stretching. I think I
overdid it a bit though, as my POTS symptoms were bad, my shoulder subluxed and
I had awful back pain.
I had another jacket potato for dinner, this time with
cheese and beans. A lady from EDS UK came to speak to us and we had such a good chat with her. She had so much
knowledge and information and we talked about everything from getting a diagnosis
and accessing specialists to relationships and support groups. I fell asleep on
my bed with my clothes on afterwards because I was so tired. But I woke up to
find a couple of the patients covering me up with a blanket, which I thought
was so lovely of them.
One of the girls on the ward has this Chip purse from
Primark – I’m so jealous that she managed to get her hands on one! He’s so
cute!
Day Four –
Thursday 18th May 2017
I felt really tired and groggy when I woke up – I
think the intensity of the programme was starting to get to me. We had
breakfast and Your Move as usual.
OT and Physio Goals – 9.30am:
I met up with Chloe and Greg to make some goals for my
weekend at home. I came up with four in the end:
1. Practice
new walking technique – either go to Waitrose and walk from the car to inside
the shop to get a wheelchair or a little walk outside
2. Do
my physio exercises each day
3. Trial
a relaxation activity once a day e.g. Your Move, Mindfulness, Phone app etc.
4. Reflect
on my weekend schedule using the traffic light pacing system
Chloe and Greg were very flexible with them and said
if I can’t do any of them then it’s totally OK.
Elaine the Technician – 10am:
I met up with Elaine to work out my baselines for sitting
and standing, so we timed how long I could do each of them before feeling too
bad. That time was then cut in half to give us my baseline. I then tried to put
that into practice, so Elaine timed me sitting colouring and then I had to
stretch, move or stand up every couple of minutes. She booked an appointment
with me next week when we’re going to try pacing preparing and cooking a simple
meal.
Health Promotion Talk – Managing Medication – 11am:
One of the nurses talked to us about different types
of pain:
· Musculoskeletal
· Nerve
· Inflammatory
The group chatted about how each pain feels, and then
the nurse went through the different types of medication used to manage each
type of pain. It wasn’t really anything I didn’t know already, having tried so
many different pain medications, but there were a couple of new ones on there
that I hadn’t heard of before.
Water-based physiotherapy – 2.15pm:
We went to the Aspire Gym again to use their swimming
pool. My POTS went crazy as soon as I got in the room, and I felt terrible as I
got into the pool. They brought a special wheelchair into the water and got me
a drink so I could sit and pace my activity. One of the physios kept saying it
was OK to get out if I didn’t feel up to it, but I wanted to give it a go. I managed
to do a few gentle exercises holding onto a noodle with lots of sitting and
drinks in between. There’s a slope to get in and out of the pool, so when we
were finished the physio wheeled me out and back to the changing room, then
waited while I got myself ready in case I fainted or anything.
A few of us decided to go to the Aspire Gym café for a
cuppa afterwards, which helped me feel a little bit better after swimming. We
then walked/wheeled back to the ward in fits of giggles at totally random
things, and I lay down for a while. In the evening we all had a little ‘party’
for the girls who were leaving this week. We ordered pizza to the ward and
Lydia’s Mum made us gluten-free carrot cake, which was amazing. We all laughed
so much that my tummy and jaw hurt – I haven’t laughed like that in so long!
It’s lovely to be in a place where I feel ‘normal’ and with people who
understand and can laugh with me at stupid things.
Day Five –
Friday 19th May 2017
I had a bit of a relaxed morning – we were meant to do
some DIY Your Move, but it didn’t really happen! I packed up my stuff – we were
able to leave some things behind ready for next week.
Discussion Group – 9.30am:
This was a fairly informal group where we all chatted
about things we’ve learnt so far on the programme. Some of the things I’ve
learnt this week include:
· How
important laughter and social contact are
· More
understanding of pacing
· The
need to be assertive
· The
benefits of rest and relaxation
Postural Management – 10.30am:
Elaine led this session and talked to us about the
anatomy of the spine. We often end up slouching and our spine goes into a ‘C’
shape position rather than an ‘S’, which puts added pressure on it. We
discussed the benefits of having good posture, then Elaine told us what makes a
good chair, for example, it should be the right height, depth, have the right
height arm rests and support your back. It is also important to pace our
sitting, as sitting down puts more strain on our back than standing or lying does.
We then went through the ideal workstation set-up, which is really important
for me, so I will be looking at that in more detail to see if I can improve
where I do my work. Then we talked about sleeping positions, and how special
pillows can improve your sleeping posture. Lastly we discussed the best driving
posture, which I will be considering when my new car arrives. Elaine then let
us try out a variety of different supports and cushions. I found some of them
really helpful and comfortable, so I’ve asked my Dad if we can go to a local
Mobility shop to try some more out with a view to getting something.
My Dad came to pick me up at about midday and we went
to a local Sainsbury’s café for a spot of lunch. We drove home via the stables
so we could check on Mickey while Rosiie is on holiday. I spent the rest of the
afternoon crashed out on the sofa catching up on Hollyoaks. I felt quite wobbly
and tearful since coming home. I think it’s because coming home is a reminder
that I’m going to go from having such amazing treatment and specialist support
to basically having nothing and having to try and do everything myself again.
You can check out my YouTube channel here, where I have recently uploaded a few new videos (and hope to
continue doing!)
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.
