Before I was accepted on to the Pain Rehabilitation Programme at Stanmore I knew that something had to change. Life was getting gradually harder, pain was steadily increasing. I was doing everything that I could to be strong, Pilates, walking the dog daily, stretching but life was slipping away. I didn’t have the energy to socialise and if I did then I couldn’t sit in the evenings without subluxing something just by trying to be upright. By 8pm every night, if I made it to that time, then I really couldn’t manage to do anything. It was seriously 6 months since I’d managed to go out for dinner with my husband. I was getting the essentials done, kids to school, to clubs, hospital appointments, physiotherapy, homework but that is where life stopped.
I had reservations that the programme would help. I knew it wasn’t about offering pain relief, providing a magic pill, I knew that that didn’t exist but pain was having the biggest impact on my life, what would they do? My husband wondered if they could teach me anything at all. But I had to try.
The date finally came, the organisation to get me out of the house between Monday and Friday for three consecutive weeks was no mean feat. Dave had to juggle work with school trips, flower festival, sports days, shows. He knew, like me, if my situation could improve just a little bit then the disruption to out lives would be worth it.
It was strange being away from home with no one to depend on me. Even breakfast was made for me, not quite the way I like my porridge but made none the less, I only had the responsibility of getting washed and dressed. I had to be at sessions on time but was safely portered to each and every appointment around the hospital site. It was strange to have time to myself, to read, to chat, to rest.
Don’t get me wrong the programme was intense but compared to being a busy mum of three children, one still in nursery, with all the demands that they bring it was also extremely uncomplicated. The days were broken up into a combination of stretch classes, individual physiotherapy and occupational therapy sessions and group sessions about pain, pacing, posture, nutrition, anatomy and healing, flares, assertiveness, family, coping skills, relaxation, work support, maintaining change and future medical management. Also included in the programme was a weekly session in the pool where we could do our hydrotherapy exercises or swim. Another took place in the gym, which we called ‘PE’, here we got to take part in a range of activities from table tennis to badminton and darts.
The individual physiotherapy programme was brilliant. They physiotherapists at Stanmore know and understand EDS and its limitations, they had less experience with CMT but were aware of the implications of having both conditions and they listened. I built up slowly to an overall whole body programme that focused on functional activities rather than just sitting and performing rep after rep in isolation. An approach that has not really been taken with me in terms of physiotherapy before. I have studied biology to degree level so the anatomy classes were a little simplistic, my physiotherapist used some of our sessions to do some more complex anatomy lessons of the shoulders, knees and feet which have helped me at appointments for myself and my children since leaving the programme.
The group occupational therapy sessions were more of a challenge for me. Some of the things that they tried to teach were unrealistic for me in my particular family situation, like picking up everything off of the floor with a grabber to save my back, really, there is nothing wrong with by back I struggle more with hand function. Or loading and unloading the washing machine with a grabber, umm! Sometimes we have 4 loads a day and on some days my hands can’t hold a pencil, how am I going to manipulate the grabber? The crouching that they encouraged was impossible after the surgeries I have had on my knees. The general ideas were sound but idealised and not necessarily adaptable to different lifestyles, it’s not a one size fits all. So I had to keep an open mind in these sessions and take away the little hints and tips that may make a difference. If I had come home and put everything into practise then I really wouldn’t have had enough time in the day to sleep.
We could also have individual sessions with a therapist for cooking, craft or gardening. These sessions focused on function and posture. I learnt a lot about posture at Stanmore, when a therapist walked on the the ward or someone mentioned the word posture you would see us all sit up straight. One morning I insisted on walking to therapy instead of taking the usual porter service, to give me a chance to practise walking with correct posture. Head up, eyes forward. A sprained foot and bruised knee later I realised was how much I rely on my eyes to walk. I had no choice but to take the porter for the next few days.
The individual OT sessions were also challenging, pacing was my enemy from day one. How would I ever be able to pace my days when I had so much to do and so many people relying on me? How could stretching while standing in a queue in a shop help alleviate pain later on? We had to colour code all our activities over a week, green – easy, amber – a challenge and red – hard work. The task was to spread out our ‘red’ activities over a day, with no two red activities next to each other. The principle was fantastic but all my red activities were between 3pm and 7pm when the children are home from school and we do homework, reading, dinner, clubs, bath and bed. The whole evening becoming a blot of red, not because each individual activity was hard in isolation but the sheer amount in a small space of time. How could I spread them out? Sorry kids no dinner tonight, mummy can’t have another red activity! I also hoped that OT would help with my hands, functionally they are poor, I have pain often, dislocations and subluxations of the joints in my fingers, thumbs and wrists due to the muscle wastage and loose ligaments supporting the joints. I did have the opportunity for some sessions with a specialised hand OT but apart from exercises to prevent further muscle atrophy treatment was limited. Splinting unstable joints was not really an option which was disappointing.
Psychology is an integral part of the programme, it surprised me how many of us said that we didn’t need this element, many EDSers. I wonder if it’s a rebellion against the years of doctors telling us our symptoms are all in our head. One session however was compulsory and most of us gained from it, perhaps we needed it more than we would like to admit. In my session the psychologist challenged me to say no and do something for myself.
The ward was like home, I don’t know if I was just lucky with the group of girls that I got on my three week stay but they were great. I have honestly not laughed that much in years, proper belly laughs where you cried, it was like being back at school. I don’t know if it’s because we were all in the same boat. That no matter how you felt when you looked around there really was someone worse off than yourself, with permanently dislocated shoulders, popping joints out as they walked or passing out as they stood it really made you get perspective. There was always someone to make a cuppa or make you laugh.
Now not everything was perfect on the ward, some people decided to get up and shower at 5:30am banging around, but then we probably kept others awake past lights out laughing and joking. I was freezing at night (even though I had my duvet) and some people liked having their windows open all night but I got around it with layers and bed socks. The food was edible, just, but as I had a gluten free diet my choices were severely limited. I lived on chili and rice and jacket potatoes for three weeks.
So what have I taken away from the programme one year on?
I am still seeing the physiotherapy team at Stanmore to try and prevent knee surgery for the time being but physiotherapy has become part of my daily life now. I have a go to programme covering my whole body and when the pool is in at home a hydrotherapy programme too.
They say if something is a challenge then you have the potential to gain the most from it. Pacing was my enemy, it was by far the hardest part of the programme for me but conquering it has changed my life. Slowly I have adapted and changed the way I do things at home, pacing isn’t just about doing less it was about spreading things out over the day so that you can achieve more. In the process you stop feeding into that boom bust cycle where you push, push, push CRASH! My mindset has changed, everything is paced in my house without even realising it. We have a walk with the dog and then we come in have a drink and a sit down and a chat at the table, instead of walking straight through the door and getting dinner on for example. My son plays on his x box for 30 minutes then has a kick around in the garden with the football. My daughter rides her bike then has a bed on the sofa with her i pad or a book for 10 minutes. We can all feel the benefit.
It was pacing in conjunction with psychology (although it’s still really hard for me to admit that it has had an impact, it’s like admitting I’m mad) but those elements have had the biggest impact on my life over time. In order to change there is a period of acceptance, moving forward, communicating with other family members and friends. For the change to work and become part of a new daily life there has to be a shift in mindset.
Since leaving Stanmore I regularly meet the girls for coffee. I can’t manage big nights out often but I appreciate that you need to prioritise time for a chat with your friends. I have also become a school governor, and started writing. I didn’t realise that I wasn’t doing anything for myself.
Don’t get me wrong I am still in pain, all day, every day. In fact, my subluxations and dislocations are far worse than a year ago. When I went to Stanmore my shoulder blades were the overriding problem. This last year have seen prolonged problems with my feet, knees, hip, ankle, wrists, hands, and thumbs. It’s not perfect, some days I don’t do my exercises, some days I do too much and pay for it later but I understand why and know how to tip the balance back in my favour. I manage my pain much better than before. I now see pain medication as a form of control rather than weakness. I rarely get to the point where the pain overwhelms me, where I feel I can’t carry on. I can make it past 8pm because I have paced my day, my life. Stanmore has given me my tool kit to survive living with EDS and CMT.
If you have any questions about the Stanmore Rehabilitation Programme get in touch!
I think the stanmore rhab programme at hotel or hospital, gets quite a lot of funding to the stanmore orthpaedic hospital and if you do not go for various reasons there is little other support for us with eds from my experience.
I think that you have a fair point – I have been all over the place over the years trying to find a doctor 1) that knew what was going on with me and 2) could actually help to improve my quality of life long term. So I decided to build my dream team. To get a group of people who knew what they were talking about with regards to my conditions to oversee our families health issues.
We are fortunate to live close to London and have access to the London hospitals so am seen now at Queens Square for my neuromuscular condition (CMT) and my daughter is seen at GOSH, and i'm at Kings for POTS but we are Stanmore for all other things, for rheumatology, pead rheumatology, physio and all orthopaedics. They are fantastic and just 'get' EDS. The rehab programme was a stop on the road to getting better and improving my quality of life.
My daughters local team are also fantastic, physio, OT, orthotics. We work well together, they offer advice when I need it and have in turn learnt from our family by inviting me in to lead a staff training session.
With each new issue that arises I try to research who will be best to sort out the problem so we don't waste unnecessary time chasing hospital appointments – there is nothing more frustrating!!! It has taken me 10 years to build a Dream team I am happy with, that I trust, that actually understand my conditions. I have learnt along the way that it is about managing things myself but sometimes I need the expert help to do that. Don't give up!! X
Thank you for taking the time to write this. Your life sounds very similar to mine, the hours between 330-830pm are crazy, Saturday's too. The part where you talk about pain meds being a control not a weakness struck a cord with me and perhaps I'm not pacing as well as I thought I was! How do you go about getting into this programme? All the very best.
You're welcome. Before I went to Stanmore I really thought that I was doing everything that I could. In fact I was doing too much and not pacing. It's still not perfect but I learnt a lot about acceptance and changing the way that I think about things. I was referred by my GP on Professor Grahame's recommendation. All in all it took about a year.
That was really informative, thank u for writing it, I have been offered this program and was umming and arring, but what u have written may have convinced me it will be worth my while doing this 🙂
I'm glad it has helped. I was the same but while it's not a magic wand it gives you the tools too change if you are willing to. The girls laugh now I have made friends with pacing! x