Tuesday 2 October 2012

Harvest

It's autumn and that marks three years since I first visited the rheumatology department at Ipswich Hospital. If they ever move the pictures that adorn the corridors around I'd be wandering around in there forever! I have absolutely no sense of direction...up until May this year I have been every six months since that first appointment. Now I seem to be up there every week, recognizing the number of the hospital on my phone despite not entering in my contacts list.

Reading through my notes I see that I was presenting classic symptoms of Rheumatoid Arthritis which through most of the last three years has been raging through my body causing pain and inflammation - my feet were described as 'little trotters' once as they were so swollen...

I know it's hard for people to understand that every part of me hurts most of the time, I wear splints on my hands when my thumbs need support not because they hurt more than my feet, knees, back or hips...it is quite upsetting when people assume it's only the part of me I'm supporting at that moment whether it's with splints or a stick. This happened yesterday, last Friday, last Wednesday...a very good friend assumed that just because RA is now thought to be on the scene it's somehow, all of a sudden become so very much worse than when it was thought to be PsA. The usual suggestions of a change of diet and Chinese herbal supplements then followed....it's hard at the moment not to cry out and show people just what it's like to be permanently tired and in pain.

I know that they are merely trying to help, to try and find a quick fix, to get me back to how I was before this happened...

The programme on Channel 4 called 'Food Hospital' featured RA in it's list of conditions that can be cured with food - I'm not denying that there are some conditions that are affected by food but trust me if I could run again if I never touched another crumb of bread then do you not think that I would find the will power to resist?  Programmes like this, articles in the newspaper all citing lower ESR levels as evidence of a particular diet working give false hope to all the well meaning, thoughtful people around us.

My ESR levels have never been high, have always been unremarkable and yet there is no denying that there is always inflammation there. Celebrex has become my favourite drug - hope that they keep me on it, the swollen feet have gone down, my fingers no longer resemble sausages. The pain I have now is not from inflammation as the damage has been done, the bones are crunching against each other and I remove myself from that with Tramadol.

It's breakfast time, I'm here at the kitchen table, waiting for the pills to work and trying not to think about food, the Tramadol has taken away my appetite and as anyone who knows me in real life or via Twitter I live to eat, love to cook and feed people. The Fella and I are taking it in turns to cook nice healthy meals for each other, my parents cook for us once a week and we're struggling through...

Nic x

PS. I get the disc with Friday's MRI scan on it today! The really helpful lady in Diagnostic Imaging has posted it out to me and the nice lady at PALs is trying to find out why the Radiographer's notes were removed from my X-ray images...two painful steps forward and then one back!

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