I first noticed a small patch of what I thought was eczema on my right leg. I was not too concerned even though it did not respond to any of the normal applications. The condition seemed to come and go so it didn't affect me unduly.
When I started work, I noticed that the patches became larger and started to spread to my elbows and face. I thought this may have had something to do with products I used at work. The doctor diagnosed psoriasis. I was prescribed a thick zinc based paste, this had little effect other than to soothe the itching.
The condition spread to my chest and knees. I continued to use the zinc cream with no improvement. Further patches appeared on my left leg and scalp. The treatment was extended to using medicated shampoo and wrapping cling film over my legs and scalp.
As time went on the condition erupted more often, especially at times of stress. Then I noticed white deposits under my toe and finger nails. At first they did not hurt, but as the nails became thicker they became really painful. The doctor told me there was no treatment for this condition. I have to cut my nails as short as possible but can only go as far as the quick, the remaining deposits feel as if I have splinters under all of my nails.
About eighteen years ago I started to get pain in the cushions of my heels, I put this down to standing for long periods. The pain got worse and spread to my ankles, knees, hips, back, neck and jaw. My psoriasis also worsened and had soon spread all over my torso, hands and ears.
I mentioned the pain in my joints to my doctor who dismissed it as "getting older". However, he did send me to hospital for PUVA treatment for the psoriasis. This required taking a drug which makes one susceptible to UV light. So susceptible in fact, that even after the three to ten minutes PUVA treatment I had to continue to wear goggles for protection against sun light for the entire eight hours that the drug remained active. The treatment had little effect on my psoriasis and was discontinued.
I then pressed my doctor into sending me to a local rheumatologist. I had blood tests and x-rays on many of my joints. The blood tests and x-rays revealed nothing and I was put on a course of physiotherapy, which had no effect other than to induce pain. It was during this treatment that I noticed a fly sheet on the hospital notice board promoting the PAPAA.
I was diagnosed psoriatic arthritis (PsA), something I had told my GP I'd been suffering from for years!
But just how does PsA affect me? The psoriasis on my face and scalp can be embarrassing, especially when wearing a dark jacket. The flakes on my forehead often get in my eyes and cause irritation; I'm always cleaning my glasses. Flakes from my chin stick in my beard or fall onto my chest. I am constantly brushing off flakes or scratching lesions. As well as all this I have to take drugs every day to control the pain and use a multitude of skin creams and special shampoos.
I am always concerned about what may be going through the mind of a person who finds themselves opposite someone suffering from psoriasis. I usually try and mention what it is before the tell tale signs of inquiry appear; it is often inappropriate to launch into an explanation when business is on the agenda, however I usually do as it makes both parties feel more comfortable. I'm sure everyone who suffers from psoriasis knows the feeling of someone desperately trying not to be rude but finding themselves staring at the scaly patches. You can almost hear them saying to themselves "I hope whatever it is is not catching".
Beaches, swimming pools and sauna baths are places which can be uncomfortable. I have had concerned people ask me if I should be using a public place. Once again, I have to launch into a short profile of the illness to hopefully assure them, and make it a little easier for myself.
If psoriasis is a constant irritation which can be temporarily relieved by scratching, there is little that can relieve the insidious pain of the accompanying arthritis. I liken it to having toothache in all the joints. Things like walking and driving can induce searing pain in my hips, feet, back, arms and shoulders and I often arrive at my destination in a great deal of pain.
This type of handicap has had an adverse effect on my family, the walking and camping holidays we used to enjoy have been curtailed. While on a recent holiday in America and Canada, I found myself in such a state of exhaustion that most afternoons I would have to give in and go to bed. As a result there is a feeling that one has spoilt the occasion for others. It is a rare occasion when my sleep is not interrupted by pain in my feet and hips. When I get up my joints are stiff for about an hour.
Household tasks can be arduous, picking up kitchen implements can be difficult and painful, opening plastic and cardboard milk bottles sometimes takes ages. Other activities like turning the pages of a book and counting bank notes are difficult, especially if the notes are new. Many of the other daily tasks like mowing the lawn or using a screwdriver result in my hands swelling and remaining like that for days.
Coming to terms with an incurable condition is not easy, not knowing how the artful disease will treat you. I have often been fooled by a period of remission only to be brought back to reality by a disease which lurks in the shadows like a stalker.
In the last few years I've learned to adapt and all in all I'm better off than many of the members of PAPAA, but there is always the thought of ending up in a wheelchair.