Summer 1988 - The Beginning

My daughters Carley and Lucy who are now 28 and 23 with Granddaughter Ellie

Summer 1988 and I was a 32 year old healthy young woman with my whole life ahead of me, my daughter Carley was 5 and my new born, Lucy, was just 6 weeks old. When the first pain started deep within my hip I brushed it aside,  but within a few days my wrists started to hurt and my whole body felt stiff when I woke in the morning, not thinking it was anything serious I just carried on.  My left knee promptly followed and was swollen to twice its normal size but strangely I still didn’t visit the doctor. The pain and stiffness continued but the penny didnt drop that it was anything to worry about until a couple of  months later whilst visiting my Father, he said ‘oh you’ve got travelling arthritis’ he said he’d had it for years (obviously not very bad) and it was called travelling because it moved around the body!  I promptly visited my Doctor, who smiled at the word ’travelling’ told me he meant Rheumatoid and then said of course he’d do the blood test but was sure it wasn’t 
RA.  My blood test came back with a positive Rheumatoid Factor – I had RA.

An appointment duly followed with a Consultant Rheumatologist, whose name I can’t remember, he abruptly told me the diagnosis but not the implications, there were no further tests and I wasn't given any treatment choices or advice.  He simply said you must give up breast feeding and take XYZ, I can’t even remember what it was.  In tears, I was still hormonal having only recently given birth and desperately not wanting to give up feeding my baby, I left, refusing treatment.  I felt, alone, scared and very vunerable. I had no idea what to expect.

I must add at this stage that 23 years ago there was very little information available on RA, there was no internet,  and the few books that were written were medical and in a language I did not understand.  None of the new medications were available so treatments were limited. There was no monitoring I did not have any follow up blood tests to check ESR, in fact I didn't even know ESR existed. Patient education was nonexistent and I had no idea that an untreated disease would lead to joint destruction and disability, I just had Arthritis – didn’t lots of people?

My painful joints increased, progressing to fingers, toes and shoulders as well as my already painful wrists and knees, strangely my hip didn’t hurt and to this day it’s the only place that doesn’t seem to be affected. Morning stiffness left me shuffling to the bathroom to run a hot bath to try and ease my joints.  My Doctor prescribed Ibuprofen 600mg 3 times a day and I hobbled through the next few months, trying homeopathy and infra red lamps and anything else I thought would help, crying through the pain but not knowing what to do.  I didn't know anyone with a chronic illness and certainly no one with Arthritis.  I didn't understand that there were different types of Arthritis and no one ever explained how RAD attacked my joints and body.  I then came across a book called Curing Arthritis the Drug Free Way by Margaret Hills who advocates a regime to ‘rid’ yourself of RAD.  It involved lots of honey and cider vinegar, protein drinks, vitamin supplements, black molasses and Epsom salt baths as well as eliminating many foods from your diet.  I was a woman on a mission, I saw this as my answer, and threw myself into this regime wholeheartedly…did I feel better? did it work? -….I don’t know is the honest answer, I doubt it, in my ignorance I believed at this stage that I could get better, that just given time this could work. I persevered but for years pain was my constant companion, I was still taking the pain killers, spent many night nursing painful joints in tears with bags of frozen peas acting as ice packs, still couldn’t lift my arms to do my hair or reach into top cupboards, cried as I drove to collect my daughter from school from the pain in my shoulders as I turned the steering  wheel, I grimaced as I picked my baby daughter up from her cot instead of smiling with joy….life was hard ….but I was ‘doing’ something, I wanted to believe it would work.  My right wrist gradually lost mobility and I was given a wrist support.  I developed chest pains , I thought I was having a heart attack, a trip to A and E and I was told I had Viral Pericarditis ( I now know that this is probably connected to RA and not a virus at all) and to this day have a slight pericardial effusion.  Whilst there I was given and ECG and was told I also had a condition called Wolfe Parkinson White Syndrome (it’s basically a deformity of the heart with two pathways for electrical current) could life get any better!  But, when you have children you have to carry on regardless and that is what I did, kept going through the pain as best I could,trying to protect my family from the reality of a chronic illness…..then gradually something happened.  I realized that I wasn’t taking the pain killers as often and the pain in my joints had lessened. Things continued to improve, very slowly, but by the time my youngest daughter was 5  - I didn’t have Rheumatoid Arthritis – Did I?

I’m going to add here that in no way do I advocate that any kind of diet regime can ‘cure’ RAD I think we are all educated enough these days to know that it is a chronic autoimmune disease for which there is no cure.  But of course a healthy diet always helps!