Regent’s Park yesterday was filled with over a thousand people running and walking 5km to fundraise for loads of different charities. I took part to raise money for Arthritis Research UK. Quite simply, without clinical research, I wouldn’t be on a biologic drug (Enbrel) that is starting to make a difference to my joints. From the start I knew that I’d walk, rather than run, the five kilometres. It was a baking hot day (25 degrees Celsius) but more importantly, my body isn’t up to running as I’m not in remission (yet).
Everyone taking part was entitled to a free Superhero costume such as Superman or Wonderwoman. You could either turn up and collect a costume on the day or make your own. I dressed as an old-fashioned Superhero – namely a Suffragette, complete with a white, green and purple sash, a hat adorned with ribbon, and a double-sided placard proclaiming ‘Votes for Women’ on one side and ‘Arthritis Research UK’ on the other.
As I’ve been doing regular training walks for the past three months (and the Enbrel is kicking in now), I managed the route in about 45 minutes. I deliberately walked quickly (despite having very painful hips and knees), partly due to the heat, but also because I wanted to complete the course in less than an hour. Along the route, I chatted to several typical ‘Superheroes’ who recognised my outfit. One excitable 10 year old boy shouted out, ‘You’re a Suffragette!’ Don’t get run over by a carriage’, which made me smile. Lots of people beamed in my direction and wanted photos, but there was nothing unusual about that as lots of us had snaps taken. Even though it was an exhausting walk and tough on my hips and knees it was an exhilarating feeling to cross the finish line. Apart from fundraising for Arthritis Research UK and raising awareness of rheumatoid arthritis/disease, the walk was about setting a challenge for myself and achieving it. Now it’s time to think of a new challenge!
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?!
Last week, air pollution in London got so bad that I escaped to East Anglia to stay with relatives. Needless to say, it wasn’t much better there. Apparently it was ’10’ on the Met Office’s Air Quality Index – i.e. the highest rating. Having a lung condition (bronchiectasis) means I get more breathless easily. Every time I ventured outside it felt as if a hand was pushing hard on my chest, making it impossible to get enough air. My eyes smarted, throat burned and the air tasted foul and metallic. I had to get an emergency inhaler because having ‘flat lungs’ is a frightening sensation, and spent most of the three days’ smog episode indoors.
On the positive side, not going out meant that I could concentrate on mindfulness training. I doubted its benefits initially. It’s getting easier. I find it useful to listen to a guided exercise while focusing on my breathing and relaxing any tension in the body. One phrase really stood out for me: ‘Your thoughts are not facts’. It sounds straightforward to apply this to your thoughts but it isn’t always the case. I’m doing mindfulness for health reasons, and it is easy for my thoughts to get carried away with ‘What Ifs?’.
I started a new osteoporosis medication two days ago, Actonel (Risedronate Sodium), and before doing any mindfulness my first thought would have been: ‘What if this drug gives me a horrendous reaction?’. Thanks to doing mindfulness regularly, I was able to take the tablet without a whirlwind of negative emotions rushing through my head. Instead, I thought: ‘This is a well-tolerated drug; lots of people take it regularly with no problems; although there are serious side-effects they are rare; I’m taking anti-histamines to prevent side-effects happening.’ In the end, I have had some palpitations and breathlessness but recognise that a) this could be due to anxiety and b) due to the bronchiectasis and recent bad air quality.
‘What Ifs?’ can hold you back if you get sucked into their downward spiral. One ‘What If?’ quickly leads to another, as I know from having health anxiety as well as rheumatoid arthritis, Ehlers-Danlos and more. It’s hard when you have health problems mixed in with health anxiety to separate the two. But mindfulness is allowing me to achieve that, and to leave the ‘What Ifs?’ behind.
For my second Enbrel injection, I spent a night in hospital so doctors could observe how I reacted to the drug. As expected, I was the youngest on my ward by 30 years, with the oldest patient being 56 years older than me. I arrived at 9am last Thursday and left at midday the following day. My specialist nurse arrived to administer the injection around 2pm and then it was a question of waiting to see if anything happened. A student doctor turned up and wanted to chat about my experiences of rheumatoid arthritis and Ehlers Danlos Syndrome. He was especially interested in the reactions and side effects that I’ve had from other drugs, and asked permission to write an essay about my case. I said it was fine. It was impressive that he asked intelligent questions and showed a real interest in what it’s actually like to live with chronic illness. It got me thinking of some doctors who could actually learn a lesson or two from this student.
The next morning, still in bed on the ward, a consultant (accompanied by a handful of student doctors) turned up and insisted that I could go home, seeing that I didn’t have a significant reaction to the Enbrel (at that point). I spent some time saying goodbye to the women in the beds next to me. They were all very friendly and we had got on well, thrown together due to our shared (but different) medical problems. I was touched that P (the 92 year old lady lying in the bed opposite me) and one of her visitors offered me some yellow tulips, seeing that the hospital wouldn’t allow them for ‘health and safety reasons’, which seems ridiculous to me. I scrabbled around for a suitable gift in return and plumped for a crossword book I’d only bought the day before but hadn’t had the chance to use. Then, another of her friends helped take my bags downstairs and got me a cup of peppermint tea. A kind gesture that meant a lot. When you’re struggling with your health, the smallest things that other people do for you make the biggest difference.
Two and a half hours after leaving the hospital, I was back in A & E with burning lips and small blisters forming on the inside of my lips, as well as a hot sensation in my throat. I had phoned my specialist nurse who urged me to come back. I was pretty distraught and had to drag myself there. The rheumatology registrar knew I was coming so I didn’t have to wait too long. I took an anti-histamine (but no steroids this time) and had observations taken at regular intervals for the next hour or so (blood pressure, heart rate, oxygen saturation levels). Several hours later I was free to leave as they said I was experiencing side effects rather than a serious reaction. I was relieved but not entirely reassured, as who knows what will happen after the third injection?
I finished the day with friends at Tate Britain’s late night, which provided a welcome contrast to the past two days in hospital. Dancing digital images in an ‘1840s gif party’ competed for attention with sculpture, DJs, live storytelling and film screenings. A perfect distraction and there was no mention of health or hospitals all evening.
While waiting to leave Cambridge railway station, a woman leant across the aisle to say she could help with my bags when we got to London. I looked at her, bemused. It turned out that she’d overheard me telling railway staff that I had rheumatoid arthritis and asking if my sister could come through the barrier to help carry my bags onto the train. She’d also seen my sister lug the bags onto the train and wave me goodbye. When we got to the other end, true to her word, she carried my backpack to a taxi and I took the other 2 bags. Her boyfriend looked a bit surprised that she was so determined to do this! She didn’t expect anything in return. The taxi driver also gave me a hand with the luggage when we got to the flat. In the old days I would have felt embarrassed but not any more. I’ve accepted that at the moment (but hopefully not forever) some things like carrying heavy bags are more difficult. Today, I asked another stranger to open a water bottle as I’d forgotten my special flower-shaped jar/bottle ‘opener’. She did it straightaway, no questions asked. People don’t usually mind at all when you ask for help, and regularly offer when they see me struggling. It makes city living feel a bit less daunting – especially when negotiating public transport (avoiding rush hour, which is always a stressful experience).
As for Humira, I had my fourth dose today (20mg by injection). I’m going to have 20mg each week for several weeks to ease into it gently. (I had a mild reaction to the first 40mg injection, which was serious enough to end up in A & E yet again). The standard treatment is one 40mg jab once a fortnight. Hours later, I’m feeling slightly groggy, with the usual ‘hungover’ feeling that I tend to have on injection days, but otherwise ok. Fingers crossed that this will be the drug that works for me. I’m very aware that I’m on a ‘sub-optimal’ dose at the moment and am actually keen to get onto the higher dose. It’s amazing how my attitude has changed over the last year. After trying several drugs which didn’t work and gave me terrible side effects, I thought I could get better through diet alone, but developing bone erosions jolted me into realising that drugs were a vital part of tackling this disease, as well as improving my quality of life. At the moment, my health anxiety is so severe that a specialist nurse is administering the injections, but one day I want to have the confidence to self-inject. Here’s hoping that in 2014, I will.
Rather than making resolutions at New Year, I’m thinking of them now. I could wait, but I’m impatient to get started! Top of the list is doing a fun run (or more likely walk!) to fundraise for arthritis research. Finding a new (part-time) job is also a priority, but dependent on finding a new flat. (I’m urgently looking for somewhere new to stay in London by the end of January). I’d like to spend less time in hospital (with hopefully fewer appointments) and have more fun with friends. Most of all, I’d like to get better. That’s not a resolution but I want to keep optimistic. Who knows if I’ll reach drug-induced remission this year? At the very least, it would be amazing if Humira gets the rheumatoid arthritis stable so I don’t develop any more bone erosions. And I’d like to do more painting, jewellery-making, photography and other creative stuff. Finally, I’d like to spend a whole week abroad (something I haven’t done for several years due to illness) and to keep playing the ukulele!
For years before getting rheumatoid arthritis, I lived with Ehlers-Danlos Syndrome (Hypermobility type), which was only diagnosed by a geneticist when I was 15. This means I get tired very easily. Add on another layer of fatigue derived from the RA which started 3 and a half years ago – and it’s a double whammy of tiredness. I know that pacing is supposed to be the answer to this, but it’s very hard when you want to be active and hate sitting still and doing nothing. What usually happens is that I overdo things on one day and then feel totally lethargic the next day. A habit I need to try and break out of. This isn’t helped by my insomnia and current failure to go to bed before 3am.
Today, after a regular blood test at the hospital, I decided to defy fatigue by visiting the Isabella Blow exhibition at Somerset House in London. (She was a unique fashion director who discovered fashion designers Alexander McQueen, Hussein Chalayan and Julien Macdonald, milliner Philip Treacy and model Sophie Dahl). On the way, I got sidetracked by another exhibition (presented by The Moving Museum and The Vinyl Factory) in a huge former office building just one block away. 31 artists were on show with very different styles. I like to be challenged and entertained by art, even if it isn’t always ‘my thing’. One artist I particularly liked was James Balmforth, for his other-worldly abstract art, called names like Scenic Dissolution #57. Here’s a blurry photo (I really must find my camera rather than using the phone camera!):
Then on to Isabella Blow: Fashion Galore! which only opened yesterday. To reach the show, I had to pass the festive Somerset House ice rink, which was heaving with enthusiastic, rosy-cheeked skaters gliding over the ice in time to fast-paced music. I would have loved to join them if a) I actually knew how to skate and b) didn’t have such stiff joints. Once inside, I was greeted by a cornucopia of fantastical outfits worn by Isabella, styled to perfection exactly as she’d worn them. Sculptural, tactile hats by Philip Treacy were teamed with exquisite, form fitting dresses in luxurious fabrics by Alexander McQueen and others. I admire her boldness with style, her experimental vision and contribution to fashion through spotting and nurturing talented designers. It was shattering being on my feet the whole time but the endless surprises such as a hat made of silver kept me focused on the fashion, not my health. Overall, it was a great retrospective, and it is a shame that Isabella Blow is no longer around to see the level of affection for her and permanent impact that her work had on the fashion world and wider culture. Another enjoyable afternoon that took my mind away from RA worries.