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I give up fighting – I need help

Five years ago whilst on staff at Dechen Choling, a Shambhala retreat in France, I sat a Dathun – one month meditation retreat. During that retreat one of the things I learned was that there was a problem with my shoulders. I had for some time experienced lower back pain but the shoulder was repeatedly pointed out to me by the Meditation Instructors and group leader.

When I left the centre I started paying a lot more attention to the shoulder to try and find out what was wrong and heal it. It was somehow related to the lower back, that became clear. I had no luck on my own so went to my doctor who referred me for physiotherapy.

The physio set to work on my shoulder. After a couple of weeks I pointed out that it was making the problems with my lower back worse and asked if we should get a scan of my back before continuing. “No we don’t waste money on unneccessary scans”, she said, “we’ll fix the shoulder then start on the back. I continued for fear of being labelled hypochondriac but after a year and significant problems emerging elsewhere the physio discharged me as non-responsive and a worrier. I went back to my doctor who reluctantly referred me for a second opinion.

I had been working to strengthen the muscles in the pelvic floor and hips and last April had the strangest experience. One day I was pulling everything in and my legs both twisted in the hip as several muscles engaged I did not know I had. Then my pelvic floor engaged and my sphincters, I was an inch taller. Ten minutes later as I walked down the road my body swung round to the left so I was looking behind me, then I swung round to the right. As I did so, some muscles in my back engaged, my shoulder went right, my head and neck entirely changed position on my body and my abdomen lengthened. I was another inch taller, and taller than the friend I was walking with which I never had been. My legs swung under me as I walked with seemingly no effort. I was tall! My chest was open and I was breathing easily. Without knowing what I had done or how I was standing in a proper posture. There were areas of muscle I could tell were very weak but I stayed like it for half an hour before everything went south again. At least I knew my destination, or so I thought.

So I learned through my own awareness that the root problem was in my pelvis and this was causing the trouble with my lower back and putting my shoulder out. I did not know what I had done. I was not able to repeat this. Then in August last year my lumbar spine spasmed and then collapsed, whiplashing my neck and stopping my trapesiuz from working. I had clearly been overlooking an important part of the problem. The doctors told me this was all rubbish, that they could see nothing wrong with my shoulder and that I was imagining the whole thing. They MRI scanned my back looking for arthritis, which I told them was not the problem, then discharged me back to the same physiotherapist.

This time it was identified that on the right side I suffered a weakness in the Psoas muscle, no function in the trapezius or Gluteus maximus and on the left no function in the Gluteus Minimus. I was given three excercises to do and sent home. My lumbar spine was too unstable to do any of them properly. I went back to my family doctor and asked for another referral which she reluctantly gave. This was to the Royal London Homeopathic Hospital who admitted (after I had waited 17 weeks to see them) that they did not have the expertise to help me. They recommended I be referred to the Royal National Orthopaedic Hospital. Having waited another 12 weeks for my first appointment there I was seen by a Doctor who recongnised the extent of my problems. “It’s the NHS Mr Jee”, he said “it won’t be quick for us to help you”.

Three months on and I am still waiting. All this time my body has deteriorated in condition. Since the whiplash last year my body has been so twisted out of shape that the muscles in my hips and pelvis that control my legs and body posture have slowly wasted. The most recent stage was that my right leg twisted in the socket and lead to a further collapse in my lumbar spine. The muscles in the left side of my back which had been holding me up and together for a year gave way. Both my shoulders rolled over my chest and my diaphragm both sides became trapped making me short of breath. The muscles in my back have lost all co-ordination as the pelvis and lower back have lost their ability to support me properly.

The original injuries, at least until last April were fully recoverable. The doctors do not to this day understand what is happening with me. They therefore call it imagined, psychosomatic or say things like “our perceptions of our body are not accurate”. This gives them an out from treating me. Why would they behave this way? The original injuries were sustained I have learned from very early child abuse. In fact I was repeatedly raped when I was one year old. I have experienced flashbacks to this though not yet the full memories which I dread. My pelvic floor and some muscles of the right hip stoopped working. My right diaphragm was trapped and my abdomen shortened as my pelvis was twisted. The right shoulder, the first issue was just compensation. My neck, as the final compensation or perhaps the cause was twisted round to compensate the twisting in my body and has a great big bend in the top of it. I learned to walk and grew up with these injuries, mimicking the posture of those around me so at first glance looked “normal”. However, in every photo of me as a child the problem with the shoulder is obvious. I feel very let down by my parents that they let this happen to me and that nothing was spotted.

I now can not walk properly, can not breathe properly and am pretty scared that if I do not get help soon I will be in a wheelchair at best. It is going to take intensive assited physio and probably some permanent or temporary steel in my back for me to recover. If the first physio had done as I asked and not destabilised my body by working on my shoulder a lot of my time and anguish would have been saved. Now the doctors are just taking things as slowly as they can through disbelief that things are as I say. The only tests they do are one’s which confirm their opinion. I have been refused an MRI becasue it is a waste of money. Meanwhile, pulled out of shape, my muscles are wating and bit by bit my body falls apart. The pattern of dysfunction is seemingly too complex for me to fix without help.

I need this help soon if worse is not to come. I will have to resort to private medicine to get it and do not have the money to do this. If anyone reading this knows a good orthopaedic surgeon who can help me or is willing to contribute towards or pay for private medicine for me please be in touch.

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