Photograph by Maria Falconer – Maria Falconer Photography – www.mariafalconer.co.uk
Carry on Dancing choreographed for PRIME by Steinvor Palsson.
I discovered along the way through many types of dance, particularly holistic practices such as 5rythms and Open Floor, that the determination and the love that I had for movement was almost enough! Sure, I am misaligned, malformed, twisted and sometimes stiff, but, given the right circumstances, movement can be beautiful and graceful if one can find the authentic mover inside and not try to become something one is not. I have to believe that. Movement after all is part of life. It is a definition of Life! Of being Alive!
I was never a ballerina! Too tall to dance my mother said and took me out of classes when I was just a kid. But … There is a delight in the different! And I came back to Dance!
Misalignments of the bones, I think, have an effect on not only the Body, but the Mind and Spirit also and this can work both ways!……
I am sure there is more to be learned here!
Arthritis is not a disability that commands respect and admiration
There are no Arthritic Olympians!
It is a twisting dark nagging pain
That drags down posture and restricts movement.
It has no place to hide!
It comes from a deep and shameful place
Where a stubborn ego resides!
Where deep resentments and fears are held
Through generations long passed.
Whose normal place was formed by their suffering.
They did not know what it is
To feel whole and Free.
My chosen career is much involved with my love of how bodies work and finding good alignment. But not simply this but how body mind and spirit work together and how alignment is intermingled with that.
This time around, 2018, the NHS is in a very different condition. My left hip is a very different story! I started noticing my left hip flexion pain and loss of movement in April 2017 whilst cycling in Los Alcazares Spain. I must admit it took me a few months to accept it and go to the GP. This is partly because it is with the GP that the first problem with the NHS in Scotland now lies. At that point my GP surgery was Eskbridge in Musselburgh East Lothian. The way they worked was that one could not make an appointment to see a GP in advance. The only option was to phone from 8am on a morning and wait for an answer. When you got through to an answer, which could take an hour or more, someone then decided if it was necessary for you to see a doctor, and, if it was necessary, he or she would call you back. In my case I never saw the GP who called me. She simply asked if I wanted to have an X-ray and I said yes. After the results of that came back I was asked if I wanted to be referred to an orthopedic consultant and I said yes. The GP could not tell me how long I would wait for an orthopedic consultant appointment. After many phone calls and letters, I got through to someone in some office of the NHS who was able to tell me the waiting time was up to 42 weeks to see an orthopedic consultant! This was in November last year. I was in increasing pain and loosing range of movement fast. 42 weeks was going to take me well into the summer when I needed to have the operation for work reasons as before. As I still had a mortgage to pay, I still had to earn money. There was no way of finding out how long after seeing a consultant, an operation would be offered.
The law says 12 weeks, but in many hospital departments, that is not adhered to. I had also heard from other people that after the consultation there was no guarantee that one would be referred for the operation and if one was, one could wait another 12 months!
This picture shows that I have become really quite troubled by pain and lack of movement in joints as well as weight gain!
Photograph by Amy Sinead – Amy Sinead – amysineadphotography.com. Courtesy of Dance Base Edinburgh
SO, here is the first problem with the service that was offered to me by the NHS. I was becoming unable to work through pain and lack of movement. Needless to say, it is not the best advert for my skills to be walking with a limp and unable to perform exercises to demonstrate. I was unable to get up and down from the floor easily. It was becoming embarrassing and I could not expect people to pay money for classes taken by me in this way. I was given co-codamol by the GP with no discussion or follow up. I knew from the previous time that these and many other drugs used as pain killers did not agree with my stomach easily. There is the second problem! These drugs were also making me very tired thus further contributing to my inability to work or to work well. As a self-employed person who is passionate about the work I do, to work well is very important!
Being unable to take dance class was depressing and making me gain weight. Both of these things are not good for arthritis sufferers and can exacerbate the condition!
Being aware of my body and my alignment, the next problem came pretty quick behind. That was that I was becoming very unbalanced and my alignment was becoming worse. These problems were only going to get worse and take longer the fix. I had spent a lifetime working with misalignment and keeping it in the best alignment possible! There is a lot to be learned here! The next problem goes back to my beginning statement – I have arthritis.
Other joints are affected, particularly my back and knees and shoulders. How long could I leave it before these joints would not support the extra strain of the severely arthritic joint but also how long would they be strong enough and mobile enough to support the rehabilitation!
Something had to be done!
Here I am at an Authentic Artists workshop
Attempting to make a theatre piece about moving with arthritis – photograph courtesy of Kath Burlinson Authentic Artists workshops
Still teaching with the help of painkillers. Photograph by Lucie Vilderova- Vilderova Photography-lucievilderova.com
I started my search.
Could I move to another area of Scotland, another health board, another area of Britain? there is a post code lottery in this as there is many other areas of NHS. I was told NO
£10000 or more to have it privately! This was not affordable for me even with a loan.
Google searches on the subject reveal many options for having the surgery abroad. There is even an office here in Lothian area dedicated to EU Cross border health care. They were helpful. The Safe haven office looked at my X-ray and told me that there was a good chance I would be reimbursed by the NHS. But no, it is not that easy. One has to find the right hospital, one has to choose whether to go public or state. The forms that one has to fill in are different depending on which of these options one uses. There is no guarantee one will get any money back or how much. This is flawed for several reasons. The money you would have to pay up front would again most likely by near to £10000 for a private treatment. With many of the countries one could go to, there is not the same distinction between private and state funded health care. This is particularly true in Europe which to me seemed to most accessible place to go. It seemed impossible to know which form to fill in. This office gives no advice as to where one should look, no help or encouragement. This is completely mad! The NHS cannot cope but neither will it help you to find somewhere that can, AND, in that way take the burden of off itself!! Are we already in a Brexit situation as far as the NHS is concerned or what is their problem. They are letting people down.
I read recently that one hospital in Calais France was treating people from Britain who wanted to avoid the waiting lists.
And Why Not!
Adverts and slogans bombard us with how it is beneficial to stay active as one gets older and yet arthritis is one of the biggest causes of inactivity in older people in Scotland!
In Europe they have the capacity to treat you much quicker! BUT
The bureaucracy is such that I could not find my way through it. I was told that the operation would have to be the exact same as would be offered here down to the type of prosthesis operation etc. So, for that information one would have to wait 42 weeks to see a consultant before going abroad! I was just going around in circles and getting nowhere.
Now I have some good friends who were very sympathetic and were helping me in my search. One in particular, himself a GP was interested in why this was so difficult. He came across an article in the Herald/ Guardian newspaper about a man form Glasgow who had gone to France. So, I become more focused on France and trying to find this man.
In the course if this search, I found Surgery in France and it turned out that was how the man from Glasgow had gone to France. His name is Colin McIntyre.
Enter Laurent Locke and Surgery in France
An email came back from my enquiry telling me about how the system worked, the hospital, the surgeon etc. and the price. The price quoted was affordable for 4 nights in a hotel prior to surgery for various pre-op tests and X-rays, up to 7 nights in the hospital, meals, drugs, nursing care necessary, anesthesia, everything except flight cost and spending money. This was a ‘no brainer’ as they say. For me it certainly was! I could plan my work around it so that I was not taking too much time off at the wrong time, and I could afford it! I could get it done sooner so that I didn’t became less able to work and more misaligned. Also, my other joints did not become unable to cope with the extra strain of the severely arthritic joint and could cope with the rehabilitation. Many people have thought that I was very brave but I just saw it as a solution. I am quite at home in Europe and love to travel there and spend time there. Perhaps braver would have been to wait here and cope some other way with the consequences.
I was given contact details for people who had done it before me including Colin McIntyre. I was able to get first hand experiences. They were all great and couldn’t say enough about how well looked after they had been and how caring Laurent Locke was! Of course, I was aware that they were not going to put a potential new client in touch with people who had not been very satisfied, but all seemed very positive.
Almost decided – a plan is made.
It was planned for 11th July 2018 at Hospital Prive Toulon Hyeres.
I travelled to France on 6th July form Edinburgh to Marseille and was met at the airport by Laurent Locke. He seemed a very open friendly person who cared about what his was doing and his clients. He handed me a bottle of cool water and we set off on the journey to Toulon. This took far longer than was expected due to heavy traffic but we easily fell into conversation and got to know each other a bit. When we got to Toulon, Laurent took me immediately for my X-ray which felt difficult because I was so very hot and sweaty! The temperature was around 30degres!
X-ray done and off to the Hotel Amiraute which was to be my base for the next few days. The laboratory where I was to give blood for the pre-operation tests was just around the corner and I was to go there the next day, Saturday before breakfast- easy!
I then had Saturday, Sunday and Monday to explore Toulon. It is a very interesting city with a huge bay that holds the biggest French Naval base. Taking boat trip out around the bay I was able to see how big this bay was and how big the Naval base with its many grey vessels. The Charles De-Gaulle aircraft carrier the biggest towering over the bay. Although it does not have a beach close to the town there are several beaches nearby dotted around the Rade or Bay.
On the Sunday I took the small tourist train to one of these, Mourillon. This was not a good day. I was very tired and in quite a lot of pain. I felt out of sorts and that continued to the evening when I couldn’t find what I wanted to eat! The evening before I had found a lovely little French bistro. I ordered Beef tart. This turned out to be an almost raw beef cake made with pesto and tomatoes. I was really delicious accompanied by great tasting spuds and salad washed down with a small glass of red wine! I loved the little squares and fountains in Toulon and its Provence style buildings. I am always at home in European settings. Wandering the back streets sitting in café bars watching people!
On Monday I had an appointment with the anesthetist and on Tuesday, one with the surgeon, Dr Michaut. These were both very good and all seemed to be going very well.
Like eight years ago, my general health seemed to be good and everyone involved seemed to think I was a good candidate for the anterior minimally invasive procedure. Slim, fit and active. Good recovery was expected. I would have a ceramic ball with a plastic cup and metal shaft similar to the right hip. I was 65 years old.
On the Tuesday Laurent took me out for lunch before I was admitted to the hospital Saint Rock Privet for my surgery the following day. This surely was above and beyond what was necessary! It was very enjoyable as again he was easy to talk to and we found no shortage of conversation.
Hospital admission was around 4pm and I had a lovely room overlooking the convert. I ate a good dinner and then was to fast until surgery the following morning. It was very similar to my experience at the Jubilee hospital in Glasgow. I had to shower including hair with the special soap that night and the following morning putting on the gown and hat. Laurent provided towels, soap, tea in many varieties, biscuits, water, tissues and even things to watch on the big screen television in my room. I took arnica 30 as I had on the previous surgery.
I was taken to the operating area at about 10.30am.
There I was seen again by the anesthetist and surgeon Dr Christophe Michaut.
I particularly remember DR Michaut squeezing my foot as he passed by. There seemed to be a gap between the first patient and myself. I could see across a corridor into what looked like to operating room. I had the needle inserted, saline drip and oxygen mask on when I was taken through and lifted onto the operating table.
I remember warm paper blankets over my legs as the anesthetist smiled over me and said “you will be asleep in a second “and sure I was.
I awoke in the recovery room and glanced at the clock – 3 pm? Is that right? Dr Michaut appeared and told me there was bad news! There had been a small calcar fracture at the end of the procedure. He had no idea why but it had complicated things. I had a hematoma with a drain inserted. I was still a bit groggy then and for most of the night and next day so it didn’t really sink in. Even now it seems a strange time, like some sort of bad dream. But happen it did and I was nursed in bed for the next full day. No weight bearing on the left leg for at least three weeks! This was going to delay things a bit!
On the second day, the physiotherapist arrived with a Zimmer frame and crutches and I was to start walking practice without putting weight onto my left leg! I found this very difficult and even at that early stage I think I was putting a little weight through the left leg. I just did not have the upper body strength despite all the planks and press ups!! SO, the pattern was that the Physio came in everyday to give my thigh a little bit of a massage and then practice walking. He took great care to ensure I had the technique correct so that I did not use the left leg.
It seems strange to me now that I went through all of that alone apart from Laurent and the hospital staff. I just did. I seemed to sort of allow it to happen or accept it. Of course, I had excellent care and many people sending me messages of good will and support. I found out I had some very good friends both older and newer. Many of the dancers in PRIME sent me messages of support and asked for updates etc. I had met an older friend a couple of months before. I hadn’t seen her or years and now here she was sending me much love and support when I especially needed it!
Seven days in the hospital and every day Dr Michaut came to see me as well as the anesthetist and the physio. The staff were all fantastic and looked after me very well.
I had a really bad day on the Friday, two days after surgery. I felt really ill and low, tears coming easily. I found out later that this was quite usual after general anesthetic and major surgery.
I was again not too good on the Sunday when I was dizzy. I was much reassured as the nurses immediately gave me instructions to lie down. My blood pressure was taken and then they kept a check on me until I felt better.
On the Tuesday I went back to the Hotel Amiraute and that is when things got very much more difficult!
Just looking after myself even when meals were made was difficult! Getting the TED stockings on and off. Going out to buy water and lunch. Going out for dinner with my four-legged friend the Zimmer and alone! I was channeling my grandmother’s courage, I think! Interesting to think that perhaps alongside the arthritis passed down is also the inner strength to fight it and cope with the challenges.
Doors were difficult because they were so heavy. I had to ask the hotel staff to bring my breakfast food to the table as both hands were on the Zimmer. I don’t think I managed to have no weight on the leg at all! This worried me.
I smiled in public but on about the third day I was at breaking point and crying a lot of the time from frustration but also being alone – my situation felt that no one cared. The situation I had got into! The situation I also had the strength to deal with!! Though it was hard. I was learning humility more and more. Maybe that is one of the things that any disability teaches.
During this time, I met other people who were there with Surgery in France to have hip replacements.
It was good to talk with them and compare notes.
Now that I realized I would be a few weeks behind my original schedule, I wanted to move to a hotel by the sea. I have always loved being by the sea and find it very healing a restorative. Laurent was able to book me in at the Hotel Rives D’or in Les Sablettes, one of the beaches of Toulon Rade. It is a beautiful hotel with fabulous caring staff. Again, like the hospital staff, nothing seemed too much trouble. The people everywhere in fact were always happy and smiling a “Bonjour” It felt like a blessing for the day to me! I had about 15minutes or more with the Zimmer to walk to the sea as the hotel stood on a strip of land with the Rade on one side and the sea on the other.
Within a few days I started using crutches outside. I was mindful that when I returned home, I would not have the Zimmer! I had various pains and sleeping problems persisting. I don’t know even now if these are from the hip replacement or from the fracture.
One day the lift was not working! Forced to take the stairs or have to miss breakfast, I took the stairs! Good training and I was slow but got there using one crutch and the stair rail!
Aches and pains persisted in groin and down outside of my leg. I took painkillers in the form of paracetamol and sometimes the stronger tablet with opium powder. Sometimes my legs just ached in no particular place just very uncomfortable and kept me awake.
I had a follow up X-ray on 26th July and thankfully all was well. I felt relieved that these aches and pains did not signify anything harmful had happen to the prosthesis.
The sun and sea were glorious but sadly I could do no swimming! The wound would not be healed enough for showering or swimming for another few weeks at least and the TED stockings had to remain on for six-week post-surgery. A new fashion accessory for the south of France!
The journey home.
This was I felt a bit of a stressful experience. It could have been a lot worse if it was not for Laurent’s care and attention and my partner who came out to spend the last week with me.
Laurent drove us to Nice where the flight home was departing at 9.30 pm He. arranged for a wheel chair for me and that was great. We went through the airport via what seemed like that back way! I did have to walk through the scanner. That was difficult without the crutches! I am not sure how I would have coped without with my partner travelling with me. The arrangements at European airports for disabled people are great. A team of fit athletic young men and women arrived right on cue to take us wheelies onto the plane.
Arriving in Edinburgh was less organized. There was a porter short and a wheelchair short. When he arrived, he was very helpful but was older and not as fit! A taxi took us home and then the last hurdle before supper and sleep was getting up the stairs. Three steps outside I took on my bum backwards because there was no rail The Inside was ok as I had been using the stairs a bit at the hotel.
How strange to be back! Was this home? It felt so strange and different.
The weather was still quite warm so I don’t think my joints noticed a big change until a few weeks later when the weather became wet and colder. My knees started to be sore particularly in bad at night when lying on the right-hand side. The left knee was and still in particularly sore on the outside. About this time too, I still had groin pain and now also a pain mid outside thigh when a straightened my knee to get up from sitting. So still taking pain killers of and on, mostly at night.
I had been given an appointment to see an orthopedic consultant! I went along deciding it could do no harm to stay on the system. The consultant was very friendly and helpful. His first comment was “Oh I am sorry – I was looking forward to you”
Sooo, younger than most patients, fitter and with what appears to be good bone density. Someone who would recover well! In short, A Fit Arthritic! Well that was nearly a month ago and there have been ups and downs.
Physiotherapist Bill Taylor(Taylor Physiotherapy Edinburgh) recommended clam exercises and oyster as well as bridging and pelvic clocks. 3 times per day 8-10 repetitions. That was Monday 27th August. I thought I was doing well.
On Tuesday 28th I did that lot very conscientiously and had a bad night with pain in both legs particularly in buttocks and radiating down legs. Ok, so easier next day maybe I just worked a little too hard. I am too impatient to get back to fitness, to prove I am a fit arthritic! In trying to correct my version of a Trendelenburg gait I have also to take a step forward with the left leg whilst pushing into a wall with my right arm. I have to do this for about 2minutes. This is hard so I break it down a little into smaller chunks. I am also starting in earnest, my knee exercises as my knees are starting to feel sore, particularly the left one. I had always done a lot of knee work before the operation because I do not want to have my knees replaced. At the moment that operation does not seem to be as successful and one doesn’t get back good function or flexibility.
A pain on the outside of my thigh on the left was giving me trouble as well as a catching pain in my groin. Physio seemed to think these would sort out in time. I am now about 8weeks post op and the pain in my groin is much better. The careful stretching of the thigh recommended by the physio is probably working and I don’t have the fear of hip extension at that level. The pain in my thigh however has returned and can sometimes be very sore. It can be a searing pain when I get up to standing or straighten my knees. It also can be sore sitting in the car. This is when it started again. I had a longer drive last week and it started again. I had this pain on the outside of my left knee at night if I am on my side right or left. This pain feels a bit like a nerve pain and can radiate down the side of my shin and the back of my shin. I wonder if now after having gone through all that I have, my knee arthritis is now going to be a problem! I calmed it down first by taking 2 ibuprofens at tea time and then co-codamol or paracetamol plus Xarelto before bed. I continue to ice it and use Flexsiq arthritis gel. I also use volterol joint which is diclofenac. I wonder if it could be a nerve problem or a Tensor Fasciae Latae overuse/strain? Seeing doctor tomorrow to ask about pain relief at night for this and a dexa scan for osteoporosis. I feel quite depressed about this and wonder if my gait will ever be back to what it was. The gait perhaps was caused by my way of moving before the op even before the hip was bad?
Today I did on-site chair massage for three people and felt really drained. There was of course carrying the chair and bag, but I think I felt worse than clinic a couple of weeks ago. I did two massages at clinic and although I was glad to home, I did not feel so drained. Maybe the lack of sleep and drugs?
I am teaching Pilates at Multiple Sclerosis center and that is going ok although tricky at times. Tomorrow another test or milestone because I will teach two classes back to back to cover for another teacher. The first class participants are quite disabled and need help in and out of their wheelchairs etc. I hope I am up to the job!
The hardest thing in all this was going through some of that time alone. The physical struggles I had when I was in tears with the frustration and the knowing that nobody cared. This is what I made! This is how I coped!
I am now 9 weeks post op and seem to be doing well. The lateral thigh pain is not bothering me as much. I am taking one ibuprofen and one paracetamol before bed. I take Epsom salt baths. My first bath was quite soon after six weeks when the TED socks came off for good. That was wonderful! I am using the Flesiq for my knees as well as peanut oil. I have also been massaging my thighs with arnica oil as well as the scar. The numbness around the scar seems to be getting less. The Trendelenburg gait is getting better I think, but it is slow and the muscles that are weak become tired very quickly when walking outside without a stick. I was on my feet for longer yesterday doing a Moving and Handling course and did not feel quite as tired. Sooo, I think progress is being made although my aim to be at dance class this week did not feel quite such a good idea! One of the physios at the moving and handling course was concerned at first and then saw that I was quite able to do more that she thought I would be able to. She told me that the gait does correct! That was good to hear because sometimes I worry that it won’t ever be correct again. I see that stooping forward when I catch myself in shop windows as I walk by and it looks just like it did before the operation! This can be depressing because one thing I remember from the right hip operation is how happy I was to be able to walk straight!
I have added more exercises to those that Bill Taylor the physio gave me.
I now do bridge as he told me to, oyster and clam as well as standing lateral legs and backward legs. Knee lifts and lateral steps with the TheraBand. The main problem seems to be that the left leg cannot take my full weight without me tilting over to use some other muscles. I can only keep strengthening those later gluteal muscles and hope for the best outcome.
At ten weeks after the operation last time I had a second infection scare at the wound. The first was at four weeks. This time the wound looks fine and I hope so as I am exercising in a swimming pool sometimes also.
I have taken no nighttime meds for the last two nights and side of left knee has been only slightly bothersome
I am now 11 weeks post-surgery and am working two full days doing on-site massage this week! This was tiring.
I am still limping a little due to the weakness of the gluteus medius on my operated side. I am hopeful this will eventually return to normal and I will be able to take weight on that leg and return to dance classes and Prime dance company but the story is ongoing.
Finally, 12 weeks and back to work in Ernest although still with that strange side to side gait. It is getting better but taking a long time. Standing on one leg too is difficult and climbing stairs. I taught three Pilates classes last night in the first night of my autumn term and felt good. I think it actually helped my gait and improved stamina.
The next step is dance class which will be next week!
So finally, I am happy that I will make a full recovery despite the problems. It may not be as good a job as the right hip but it is doing well! I think the two different operations will eventually work together and find balance simply because there is no pain to cause misalignments and I am working to regain the best gait and alignment I can. The trip has been worth it because I am teaching again and money is coming in. My classes are more popular than ever! And I am dancing again!!
For the future I would love in some way to help and inspire other arthritis sufferers, particularly if they are movers as we all really are at heart!
Hip Hip Hooray I am Balanced and Free
Affirmation from Louise Hay for Hip Arthritis
I Move Forward with Grace and Ease – For knee arthritis.
I Love and Approve of Myself – Arthritis.
All the dancers of PRIME 2016 in the work “Carry on Dancing” choreographed by Steinvor Palsson.
Photograph by Maria Falconer
I am back in Dance classes and enjoying moving again. It felt so great to be back! Still a long way to go in recovery of full weight bearing with the left leg and knee arthritis may mean that tiredness prevents me from fully participating in week or two-week long creation residencies but I will do everything I can to make this possible.
The story goes on!
Finding a way to help others to find Joy in Movement is my aim and I am developing a dance class for arthritis sufferers.
There is also the theatre piece which I am hoping to be able to perform in the future.
Photograph by Maria Falconer – Maria Falconer Photography – www.mariafalconer.co.uk
Carry on Dancing choreographed for PRIME by Steinvor Palsson.