The first private specialist I saw in the early 1990s, believed that I probably had “M.E.” from an early age as during puberty, I had developed symptoms that could possibly have indicated the start.
I tended to collapse with low blood sugar levels. I also suffered from what, at the time, was described as “Nerves”, which today would probably be described as severe anxiety problems. Although my symptoms were physical, I felt they were exacerbated by psychological distress.
In my twenties, I suffered from three quite serious consecutive neurological illnesses, and this was when the first suspicion of MS was made. I was treated for this, with Vitamin B injections.
I also had symptoms of muscle weakness, nerve disturbance, and excessive exhaustion, which would not recover with efforts to “get fit”. I began to lose confidence in my health, became anxious, and progressively unfit exacerbating the situation. I also felt abnormal and kind of ashamed trying to hide these “weaknesses”.
I did have periods of respite, where I felt more normal, and was able to manage more exercise. At one point I joined a modern dance class. I managed well until I suddenly became ill during a class. One half of my body suddenly became quite numb and weak, down the whole length of my body. This was the beginning of the second neurological illness – the first was a very serious bout of Labyrinthitis. The following two neurological illnesses were also related to muscle weakness and a strange muscular sensation.
I was in a terrible marriage and the stress didn’t help my health.
An artist trained in sculpture I eventually had to give up as I was welding without enough proper ventilation, contributing to my poor health.
My work is of paramount importance, and even today, in my eighties, I use every available ounce of energy on it luckily managing to have enough support to facilitate this.
My illness management is poor, I do overdo it and have to spend days in bed to recover. I had a mitochondrial function test previously which was very poor, and I was advised to take several saunas to sweat out the effects of copper poisoning!
Today I find muscle weakness and pain have worsened with age and I worry about my mood swings. I am usually hyper-responsive, mentally, emotionally, and sensually, but find I lack my usual sharp, intense responses.
I had 3 covid vaccines into my thigh muscle, which was very painful, and this has continued, unabated, ever since. Any flare-up of my M.E. makes the pain worse in that exact spot which I think is interesting.
I am an artist and conservationist.
In November, this year, I am putting on a one-man show in London – an exhibition of oil and watercolour paintings and drawings of Big Cats. I have been building up this collection of paintings over some years.
For this exhibition I am donating all of the work – about forty paintings and drawings.
One of Penny's ‘Big Cat' watercolours ready for her London exhibition.
You can imagine that the responsibility that this all entails hangs much heavier than it might on a younger and healthier person. Because I am bearing the financial costs of this wild – in more than one sense of the world! – venture, I am also working at another art project – this time of paintings of various birds – Air and Water.
The exhibition in November is a terrifying proposition for me as, at now 84 years old, I am struggling with increasing ill health and I am limping towards this dat. I am working with two wonderful charities, who are doing all they can to make this exhibition a success.
So, now, I am struggling, not only with a deadline, but with the fear and uncertainty that I will even be able to get the job finished in time. Fear equals adrenaline, and I have a particular problem with adrenaline, which was discovered during a “Tilt test” which was done in hospital to assess my orthostatic intolerance. I produce excess adrenaline and this exhausts the meagre quantity of energy available to me. It is a stop and start operation, and I am now having to say to everyone that I will have to isolate myself, once again, for fear of covid infection, which seems to once again have become fairly active – I had Covid once before and, although fully vaccinated, I was very ill with it.
As I write I am recovering from a very nasty bacterial infection, which has, once again, eaten into my precious time, and has warned me that I may not make my deadline unless I give up everything and devote every rare ounce of energy to this venture.
I would dearly love to have the support and sympathy of other M.E. sufferers to give me strength to see this vitally important event through to the bitter end.