Belfast: its part in my downfall

[Catwoman66]

I love a Belfast Fry - or I did until I went back to being a vegetarian. Somehow, a plate of eggs, beans and hash browns with a dried-up soya sausage and a heap of brown lumps formerly-known-as-mushrooms isn't quite the same.

But enough of my yelping, what's Belfast got to do with Rheumatoid Arthritis?

Simple; it was in a cafe in Belfast on a writing research trip I first realised - like Apollo 11 - I had a problem.

"Er," I nervously approached my husband as another piece of fat, juicy sausage (locally sourced) flew off my plate, narrowly avoiding the American couple to my left (again). "Do us a favour?"

I indicated my stiff and swollen thumbs and index fingers. "I can't hold my cutlery. I think this arthritis has moved into my fingers."

Oh, how I yearn for thos halcyon days when I, like most people including medical experts, thought I had a 'touch' of arthritis. I knew from experience that with a simple change of diet I'd soon fix it and go back to my party animal self. If I knew then what I know now I'd have drowned myself in the long-suffering Lagan. Like the passengers on the Titanic I was to ever more view Belfast with regret and anger.

Ten years previously I'd moved into my first shared home with my fiancee, now my husband. It was a third floor flat in a block with no lift and fter a couple of weeks I developed red and swollen knees. After a couple of months I was seriously regretting the move. Sick of my moaning my company sent me to a private consultant.

"Bit sore are they?" he asked.

"Ever had ground glass in *your* knees?" I replied, peeling a couple of fried eggs from mine.

After an embarrassing incident involving me removing *all* my clothes instead of my outer clothes I was declared a victim of a 'generic' arthritis and waved out the door.

"Take some cod liver oil - we're conducting trials," he called cheerfully after me as he dictated the invoice.

"I'm a vegetarian," I shouted back as I hobbled down the road in tears.

And there, dear friends, endeth Lesson One: don't assume private consultants know more than NHS ones because:-

1) they're one and the same; and

2) they get paid more if you keep going back.

So I got myself a book on curing arthritis the drug-free way and within weeks I was running around like a hyperactive child with a belly full of Red Bull again. I was cured! Or so I thought. Little did I know that the disease festering inside me like the embroyonic alien in ... er ... Alien, was just biding its time and that it can and will come and go like the seasons.

The following ten years were a smorgarsbord of 'disclocated toes', plantar fasciitis, Meniere's Disease (another story in itself), knee problems, 'RSI', 'carpal tunnel syndrome', hot flushes, shoulder impingements and a host of other random and bizarre ailments I can neither spell nor pronounce.

And then in 2008, during the peak of that hormonal insanity called perimenopause, it all finally came to a head.

In the space of eight months I had recurring 'toe dislocations' and suspected gout, recurrence of my plantar fasciitis, recurrence of the pain in my left knee, I lost nearly a stone in weight, suffered a shoulder impingement and both hands were suddenly and severely affected by stiff, hot and painful joints. The pain was excruciating. This, I told my husband, was very different to the pain I'd suffered previously.

"I am a surgeon," the incapable locum replacing my very capable GP advised me when I enquired whether I could possibly have Rheumatoid Arthritis. "You definitely, without a doubt, do not have Rheumatoid Arthritis. You have no symptoms. Your joints are fine."

I held up the worst affected finger which now closely resembled the fat, juicy sausage (locally sourced) I'd struggled with in Belfast some months previously (I wasn't a veggie then).

"That," he pronounced confidently, "is an infection."

Two days later my GP returned and referred me immediately to the local rheumatology team. Seronegative Rheumatoid Arthritis was the diagnosis four months after that.

I hope, one fine day, to meet that locum and shake him warmly and firmly by the neck. I'd also like to show the same heartfelt gratitude to the ENT consultant who told me in 2005 I was nothing but a time-wasting hypochondriac with anxiety issues. Three months before I got the RA diagnosis Meniere's Disease was diagnosed, an inner ear disease that can be caused by - you guessed it.

So here endeth Lesson Two : just because a medical expert tells you you're not ill it doesn't mean you're not.

That little research trip to Belfast was just under two years ago. A lot has happened since - too much to tell here - but I did learn a lot which will form the third and final Lesson of this evening:-

If you want to get ahead with this rotten disease be like Mulder and Scully - trust no-one.

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A beautiful and succinct piece of prose pussie (please feel free to berate me for being so familiar). You could almost believe it to be a work of fiction by a budding authoress, if one didn't know that it is in fact the horrible truth! You have detailed exactly the sort of trials and tribulations most people seem to have to go through to get a proper diagnosis. You have a great way with words. It is quite obvious that you/we have to be determined in our efforts. I so remember the number of times I came out of the doctors feeling the biggest t***t in town because I thought all this pain must mean I have some horrible disease which is going to kill me in a couple of months, only to be assured by the GP that I have an insect sting of some sort on the back of the knuckles! "It" used to creep around my body popping out in various different places. The number of times I said to my David it feels like in that film Alien!! Honest!! You could be me, or then I could be you. Such a familiar story. But there. Thanks for the blog. You know this site is going to be very useful. Take care x

[Catwoman66]

Thank you for your kind comments!

Regarding the trials and tributions us RA patients go through - why, I haven't even started yet! There's enough for a book, but nobody would believe me.

The amount of times I've been asked if the worst affected finger (which I now can't straighten or bend) is an 'infection' - by medical staff - is unbelievable. I was in a considerable amount of pain when I saw that locum, bad enough to wake me at night if a butterfly flapped its wings in Venezuela. I thought it was going to pop, but this alleged surgeon (who told me he specialised in joints) sent me away with antibiotics.

I'm very lucky to have a wonderful, supportive and very knowledgeable GP who, when he returned from holiday, knew what it was immediately and got me a consultancy within a couple of weeks. There followed a Python-esque farce of ultrasound scans which showed "no inflammation" despite my joints being the size of supersized frankfurters and endless questions about a history of psoriasis in the family.

Originally the knee problem was suspected to be osteoarthritis but knowing what I know now I can't understand how that so-called arthritis expert (one of the UK's finest apparently) got it so wrong. To me it's now plainly obvious it was the beginning of the disease. Had I been treated then I probably wouldn't be in the situation I'm in now.

Hindsight is a great thing, but a mallet in the hand is a better one - especially when dealing with consultants.

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This is a great piece of writing and I am so envious of your writing style! There is so much that rings bells for me and I am sure others will feel the same. I love your Mulder and Scully line at the end, I might just want to borrow that one! Look forward to reading more of your posts.

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yep some med pofessional are star star starr holes,, get it.. I Paid a private consultant who just told me i had fibrommyalgia.. he failed to spot the sero negative arthritis that went with it... i BLAME the nhs.. he was employed by them as wellas private.. the nhs official consultamt and thr creaking groaning nhs of gloucestershire hadnt go round to the ultra sounds of my hands.. I REST MY CASE