All pain and no gain

Rheumatoid arthritis is a degenerative and incurable auto-immune
disease that, while not generally a killer, causes intense,
bone-deep pain and crippling disability. My doctor once described
it as “the body’s turning on itself”. Indeed, someone with the
condition is their own worst enemy.

I was diagnosed in 1953, aged nine, having spent the preceding few
years in an out of hospital with periodic attacks of fever, vicious
pain, extreme fatigue and such severe joint inflammation that I
could barely move for weeks. Although the disease was possibly
triggered by a viral infection such as chickenpox, there is an
inherited tendency: with few exceptions, every maternal female
relative and ancestor had rheumatoid arthritis, often from a young
age.

Late childhood and early teens were characterised by interrupted
schooling, frequent confinement to the house and hospital
admissions for treatments, including penicillin therapy. The
preferred management was prolonged rest and immobilisation of
affected joints. Some clinicians, however, advocated the contrary,
believing that inactivity crippled. An aunt had followed the first
course and was soon confined to a wheelchair. I was encouraged to
be as active because, whatever I did or did not do, pain would be a
constant companion. By waging a 50-year war of attrition with my
own body, I have remained relatively mobile, but with countless
limitations and accommodations and I stand firmly on the far side
of that unbridgeable gulf between the sick and the well.

Rheumatoid arthritis is often accompanied by other auto-immune
disorders, including asthma, colitis, eczema and an unpredictable
tendency to potentially fatal reactions to medications, of which I
have had so many that I now wear a Medic Alert bracelet.

Last year, I went down the alternative route. On the principle that
magnets have proved successful with difficult-to-treat equine
afflictions, it seemed logical that they could equally benefit
human beings. I have been amazed by their capacity to relieve pain
without side-effects and found that aerobic oxygen damps down joint
inflammation. However, magnets and aerobic oxygen are expensive, as
were my visits to the osteopath.

The condition reached my spine many years ago but, by early 2001, I
was thoroughly alarmed by the extent and recalcitrance of the pain
and accompanying disability. After waiting eight months for an
appointment at Bangor’s district general hospital, I was told that
I possibly had compression in the lumbar spine which needed
examination in a different department. This was not an internal
exercise; I was removed from the waiting list and my doctor had to
make a new referral. Facing another long wait, and with symptoms
also suggestive of osteoporosis, slipped discs, even a tumour, I
went private. Consultants’ fees, an MRI scan and travel to Salford
in Greater Manchester (north Wales has no specialist spinal unit)
cost more than £1,000.

I made a complaint to the local hospital. As ever, the initial
response was discouraging, but I persisted and obtained an
independent hearing. The hospital has now reviewed and amended
several policies and procedures.

The scan showed that my spinal cord is being squashed by calcified
deposits. The only treatment is hazardous surgery to open the spine
(using a hammer and chisel), retract the cord, scrape out the
deposits and reconstruct the spine with bone grafts and implants.
The recovery period is at least two years and, assuming I would
need practical assistance, I applied for disability registration.

Before surgery, specialist physiotherapy is given at the hospital.
I asked the Benefits Agency for assistance with travelling costs (a
200-mile round trip): nothing doing – I have money in the bank.
Having to travel out of the area for essential treatment, I
approached the local health authority and was referred back to the
Benefits Agency. However, by keeping myself as mobile and
self-sufficient as possible, I fall outside the draconian criteria
for disability allowance: in other words, I have shot myself in
both feet. Nor, as a self-employed writer, can I claim incapacity
benefit while I can still lift finger to keyboard, no matter how
difficult the struggle.

According to popular wisdom, social security is a wide-open purse
ripe for plunder. But, in my experience, the Inland Revenue and
Benefits Agency, through national insurance contributions,
regularly raid my own purse but then clutch hot fists around the
money. Still, part-funding my own treatment will eventually leave
me sufficiently broke to qualify for income support and associated
benefits. So much for thinking I knew my way through the welfare
labyrinth.

Alison Taylor is a novelist, a former senior child care
worker and the winner of the 1996 Community Care Readers’
Award.