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I dismissed my aches and pains, stiff joints and slightly swollen fingers as the start of the menopause, or simply getting older. It went on for some time until, sitting in the waiting room to see a physiotherapist about my painful shoulder, I picked up a leaflet on arthritis.
Discovering arthritis
I was not even sure why I had picked it up, apart from that the only other thing to read was a dog eared copy of Reader’s Digest. Didn’t arthritis gnarl and twist little old ladies’ hands until they were no longer able to knit?
Towards the end of the leaflet there was a single line about another leaflet on rheumatoid arthritis (RA). The joints in my hands were by then becoming alarmingly stiff – especially in the morning.
I entered rheumatoid arthritis into Google and words such as ‘chronic’, ‘disabling’ and ‘incurable’ had me reaching for the phone to make a GP appointment. I told my husband that I thought I had RA, but that he shouldn’t look it up because it was too terrifying.
A diagnosis
Neither my GP or rheumatologist told me that I had RA. They both asked me what I thought I had as if they would rather not enlighten me. I wondered if it was NHS policy to not give out bad news but to leave people to work it out for themselves. I was diagnosed and, after I had picked myself up from the floor, I went into overdrive to research RA.
I was treated timidly with a low dose of methotrexate, but after five distressing and painful months, my DAS [disease activity score] was bordering on severe. I was then given a succession of additional drugs.
Looking for a treatment
While these doctors fiddled around trying different drugs and, it seemed, weighed up the cost of treating me properly, my life was crumbled around me. My hands and wrists had become so stiff and swollen that I was unable to paint and I was so overwhelmed by fatigue that I could not work in the gallery.
I couldn’t lift a mug of tea to my lips, cut up my own food or walk without assistance. Just getting out of bed was a major undertaking and getting dressed was an agonising and slow process. I couldn’t bath because I couldn’t bend my knees to get in or out and my elbows and shoulders were so painful I couldn’t lower myself down.
Some days, all I did was lie in bed, wishing I could curl up and die. My joints felt like smouldering volcanoes waiting to erupt and the nausea from the drugs was unbearable. I was taking pills to ease the side effects of other pills. My treatment was fast becoming as debilitating as the disease.
A new treatment
After almost a year, I was offered adalimumab (Humira) and the difference it has made to my life has been astonishing. I am slowly getting back to work and I can even go swimming occasionally to keep my joints mobile. I do not know where my journey will lead me, but at last some treatment is giving me some hope for the future.
Alexandra Dickens
