Chocolate voice

Every year London’s Chocolate Festival is a real treat, for its combination of high quality chocolate and creative designs.  I didn’t forget the chronic pain and fatigue completely but I did get totally absorbed in marvelling at and enjoying the chocolate on show. On Saturday, old-fashioned irons and horseshoes jostled with spanners and lightbulbs, all made out of ‘rusty-looking’ chocolate! This year though, the main draw wasn’t the confectionary, it was the chance to see my friend Tanya Cristina perform self-penned British soul from her album ‘Small Woman, Big Voice’, with an occasional cover thrown in. Uplifting, smooth, powerful vocals were given emotional intensity that I feel is often lacking when others sing. With Tanya, you can tell that she really is singing from the heart and it’s all she’s ever wanted to do. My sister and I were touched that she dedicated her version of ‘Hallelujah’ to us.

Tanya Cristina will be performing with her band at Kings Place in central London on 31st May to fulfil a promise she made to her mother Beatriz, who passed away last year.  Tanya and her band are declining payment to is raise money for Macmillan Cancer Support, who work to improve the lives of everyone with cancer, with practical, medical and financial support. Unfortunately, like many people, I can count on more than one hand the number of close relatives who have passed away after living with cancer. I’d like to shout out from the rooftops about Tanya’s concert. Not only will it be an amazing experience hearing Tanya sing, accompanied by a fantastic band, it will be a wonderful, heartfelt tribute to her mum. So if you love soul music and are around in London on 31st May at 7.30pm, what are you waiting for?!


Self-injecting success


Not long ago, self-injecting Enbrel was out of the question. I was traumatised by previous bad experiences on four other drugs, including hallucinations and broncho-spasms. 18 months after that night, I finally self-injected today! I’ve been building up to this for some time, as this was the 12th dose, and I started the medication at the end of January. To begin with, my specialist nurse administered the drug. Then, over several weeks, I learnt to remove the grey lid (a tricky manoeuvre with swollen fingers!), push out the air bubble, and inject my thigh at a 45 degree angle. Today was the first time that I’d managed to do the whole procedure – even pushing the plunger and removing the syringe. It wasn’t as bad as I thought it would be! It stung a bit, but not massively. I’ve celebrated by having a bar of chocolate (as I don’t drink anymore since being on anti-TNF drugs). I feel an amazing sense of achievement as well as relief. I’ll probably self-inject in front of the nurse for a bit longer before I do it at home. This feels like a real milestone and I look forward to it getting easier with practice.

I’ve also signed up for the Super Hero 5km Run on Sunday 18th Mary at Regent’s Park London (except in my case it will be a walk, raising funds for Arthritis Research UK. Why AR UK? Because they do vital work to find new treatments to tackle rheumatoid (and osteo) arthritis. Without their research, I wouldn’t be on a biologic drug (Enbrel) that will (hopefully) a) give me a better quality of life, with less fatigue, joint stiffness and swelling and b) lead to drug-induced remission. Without them, I wouldn’t have access to valuable information about RA (both the condition and full range of treatments available), helping to demystify everything.

Why the Super Hero Run? (or as I’ll do, walk). I originally wanted to do the Santa 5km Run/Walk in December, but didn’t go ahead for various reasons (the cold, dark weather combined with a flare). Having (temporarily) given up the ukulele, I was looking for a new challenge. I realise that in some ways it’s not a great idea to subject my joints to this kind of physical endurance test but I wanted to give something back. I couldn’t have asked for a better rheumatology nurse and consultant and would be lost without them. Apart from raising money for arthritis research, I’d like to highlight that people of all ages have RA. And wearing the Super Hero costume should bring an element of fun to the whole event. I’ve invested in a pedometer that tells me the distance I’ve walked each day. So far today (bearing in mind it’s only 15.20pm) I’ve only walked 3600 steps or 0.57 miles. That’s a long way from the target. Still, there are 8 and a half weeks to go so plenty of time to reach 5km in one day. If I seem relaxed about this, it’s because it’s not a competition, it’s about seeing what I can achieve, despite having erosive RA that isn’t under control yet. No matter how long it takes, I’m determined to reach that finish line!