Living with HPP 2016
Updated: Oct 6, 2019
As a baby I wasn’t able to sit up without propping until I was about a year old. The hospital put me into traction and used physiotherapy during those early days. During early childhood I had problems with pain in my feet and was given exercises to strengthen and help improve my arches. Throughout childhood I had aches and pains in my joints and would complain and cry with the pain. My earliest memories are sitting on my Grandmother’s washing machine and complaining that my knees were hurting - I must have been about three.
At thirteen I had terrible back ache and had difficulty walking with severe pain in my legs. My peers used to carry me around at school sometimes. X-rays were taken and the hospital was concerned in case I had cancer as there were shadows showing on the pictures. This was a very traumatic experience in many ways and the impact on me was huge. I said at the time I didn’t want the operation but the Consultant assured my parents it was necessary and that he would be doing the operation. I discovered in the theatre that it wasn’t the Consultant I’d expected. The initial pre-op examinations took place with me under sedation but still aware. I was unclothed and manipulated in all directions and to make things worse this all took place in front of a room full of students. The operation was undertaken immediately afterwards and I awoke on the ward to excruciating pain. My parents were unaware that the whole event was going to be experiential to student doctors and they only discovered the change in Consultant once I was back on the ward. I was in hospital for two weeks many miles from home and away from my family. I travelled 180 miles back to my home with all my stitches in. My early teens were plagued by memories of the whole scenario and I actually felt my back was much worse following the operation. The soreness of the scar over my spine and lower back still troubles me today. I live with a prolapsed disc, numb foot and bouts of sciatica. The doctors said that the exploratory surgery found nothing.
Throughout my school years I mostly didn’t take part in sports sessions due to pain and stiffness. I would lie on the floor between lessons to get some relief.
At around twenty-one I began to feel even stiffer in the mornings and would have pain in my joints and my back ache was terrible. I went to the GP and was prescribed an anti-inflammatory drug.
I later married and went on to have two children. Both were difficult births due to the shape of my spine but no one thought anything of it. As the girls grew I trained them to cling to my leg like little koala’s so that I didn’t have to constantly pick them up. Through those years I had terrible back ache and sciatica.
Basically I have just carried on regardless throughout life as doctors all used to say well it’s a bit of ‘wear and tear’ and I felt brushed off. There would be periods when things got terribly painful and I would return to my GP and so I saw numerous rheumatologists and eventually they decided I had fibromyalgia. I just accepted this for a while and tried to carry on with my life. Trying to pace myself and not overdo things.
Over the past twenty years the pain has got progressively worse and I have been battling and being referred to as many specialists as possible to try and get a diagnosis of my problems as I didn’t feel it was fibromyalgia alone. I was given oral steroids which initially made me feel better but after two weeks I became psychotic. I was struggling terribly with pain and couldn’t get anywhere with the specialists so I went on courses for cognitive behavioural therapy, relaxation, reiki, saw osteopaths and learned the Alexander technique — you name it I’ve tried it. These things all helped me deal a little better with the pain and gave me something positive to be doing. Unfortunately because I have a positive attitude I feel I may have possibly given the impression that I coped well with my problem when in reality life is extremely difficult.
In 2007 my GP found I had a low alkaline phosphate enzyme reading. My GP wrote to various specialists but none picked up the baton. At this point I decided to keep my own records of all visits to consultants and their diagnosis. With the support of my GP I collected all my x-rays personally to try and get some evidence together. In March 2011 I had a radical hysterectomy because of a huge fibroid surrounding my left ovary and problems with endometriosis. This operation was pretty painful but it really made me think about the pain I lived with day in and day. So I decided to push for further investigations armed with my evidence. At last in September 2011 a Metabolic Bone Specialist in The Robert Jones and Agnes Hunt Orthopaedic Hospital in Oswestry became interested in my case. He organised bone scans and x-rays which showed calcification in tendons in shoulders and hips. I tried the latest e-SWT treatment on my shoulders but there was no improvement. Still no diagnosis.
In January 2012 the pain in my shoulders was so severe my Mum paid for me to have a private operation on my right shoulder and elbow. I had an arthroscopy and ulna nerve release in my elbow in one operation. The surgeon removed a lot of inflamed tissue, boney spurs and discovered calcification down into my muscles and tendons. After 3 months I began to feel some improvement. I had various tests over this period and on 9th August 2012 the Metabolic Specialist wrote to me with a diagnosis of Hypophosphatasia which is causing Chrondocalcinosis. He said it was as rare as ‘Hen’s teeth!’ Unfortunately there was no treatment available.
Since this time I have had another operation this time on my left shoulder to remove boney spurs – I also have calcification in tendons and muscles on that side too. I have the same pain in my hips and also my feet and hands — so far I haven’t had any x-rays because I know there is nothing to be done. Its also been revealed I have a healed hairline fracture in my right thigh.
I am now 57 years of age. I often awake in pain and often can’t sleep during the night because of the pain. I am very stiff all the time and have pain when moving. There is constant gnawing bone pain which shifts throughout my body. Repetitive movements with my arms are impossible making tasks such as chopping, cutting , etc., nigh on impossible. When immobile even for short periods I feel as if I am seizing up and have difficulty moving. I have over the last couple of years developed problems with calcification in tendons in my feet and heels which has caused chronic plantar fasciitis and achilles tendonitis. Once I have taken a few steps I find walking bit easier but nowadays going for a walk is out of the question.
In order to keep positive I now work with my GP and Physiotherapist to keep me as well as possible. Over the years I’ve had cortisone injections in my hips and shoulders and elbows. I see my Metabolic specialist once a year and have a bone scan to check my bone density. She will also see me if needs be in between times as will my Orthopaedic Surgeon. I take anti-depressants and slow release painkillers all the time. I continue to have cortisone injections about every 6 months for pain relief.
I have known my husband since we were teenagers. We have grown up together and he has seen me at my worst. He is my rock and will automatically just help me out of the chair, the car or bed. He will make a joke as he helps me put my cardigan or coat on. He knows my frustrations and limitations without me saying. Sometimes though I just have to cry to deal with the situation — as you are bound to feel depressed living with pain all the time. He sees on my face how I am before I even say anything. He will encourage me to go out and do his best to help me do those things I want to do.
Throughout my life I have always been self-employed and have followed many different paths as my condition has changed. This has given me flexibility to be able to deal with my condition. I find that I use work as a distraction technique and I mostly find a way to achieve my goal. This has meant getting over the fact that I need help to do certain jobs and not feeling guilty about it. Thinking to myself I am actually helping someone else here and giving them employment. I have trained myself to have the ‘glass half full’ attitude to life. In order to feel that sense of achievement in life I have volunteered to help others with long term health conditions, volunteered to help people with learning to use their computers and creating websites and have been Chair of the Bala Tourism Association for 6 years. For many years I felt frustrated career wise and held back by my illness and through volunteering I have been able to prove to myself that I am actually capable and have that feeling of self-worth.
I’ve always loved painting and have changed my media of choice from watercolour to encaustic art. Encaustic means to ‘burn in’ and this form of painting was used by the ancient Greeks to decorate their boats and the Egyptians to embellish mummies. I use the hot wax and any sharp tools to create unique artworks.
Once again we are at a crossroads and my husband has retired early to help me in my successful self-catering business. I employ people to do the heavy labour whilst I do the booking, website, facebook and all admin tasks.