Part 1
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.
Part 2
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.
![](https://i0.wp.com/meassociation.org.uk/wp-content/uploads/Penny-tiger.jpg?resize=300%2C300&ssl=1)
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.