Mindfulness training

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.

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Things have to get better

Since coming off Sulphasalazine in the summer, my rheumatoid arthritis has been uncontrolled. Not only that, but I’ve been struggling with panic attacks and flashbacks for some time directly linked to an extremely rare reaction to hydroxychloroquine sulphate on 5th September last year, where I thought I was dying. This summer I was diagnosed with Post Traumatic Stress Disorder and Health Anxiety, which is unsurprising, as it feels as if that night happened recently rather than over a year ago. Having specialist treatment for PTSD has helped up to a point. But fast-forward to Friday 5th September this year, and my lungs felt as if they were being flattened. I ended up in A & E with what I thought was a panic attack, but it turns out I had a lung infection which happens a lot with having my lung condition (bronchiectasis). What amazed me during the anxious wait for treatment was the support of a complete stranger who had walked into a glass door herself, causing her to faint. She and her friend did a remarkable job of helping me to keep calm. On another occasion, I comforted a woman who had attempted to kill herself in a different A & E department. She was stripping to pay her way through University but felt ashamed. It was just an idea but I suggested that she could stay with her parents for a bit to save money rather than worrying about rent, and it struck a chord with her. I think hearing a total outsider’s viewpoint helps to have more clarity on your own situation and it can break it down into manageable ‘solveable’ chunks rather than being an overwhelming, swirling mass of panic.

A few weeks later (5th October), I was back in A & E with a very high temperature, racing heart, rash and flu-like symptoms after having the flu jab. I’ve never reacted to it this way before. Looking back, I did panic about feeling like this, but at the time it felt as if going to hospital was the only option. Then, on 24th October, I stepped on a fork, which sounds ridiculous, but it’s true. After dropping the fork I found it impossible to bend down and pick it up as my joints are so stiff, so left it there and forgot about it. It was frightening as two prongs of the fork pierced my left foot, and when I pulled it out it was obvious it would need medical attention. A nurse cleaned the wound and gave me a tetanus jab. I was already on antibiotics for another foot infection so had to take them for another week.

All of this meant that I wasn’t able to start Humira until last Thursday. The pain, swelling and stiffness has got so bad that I feel like an 90 something trapped in a 30 something body. Unfortunately, starting Humira didn’t go to plan either. I went to hospital for the injection, given previous reactions to the last 3 drugs and my sensitivity to them. The actual injection itself was painful but was over quickly. For the rest of the day, I felt a bit dizzy but nothing too serious. However, later on, about 1.30am, I developed a rash on my chest, hands, neck and face, tightening of the throat, difficulty swallowing, pain in the chest. I decided to return to A&E and was given anti-histamine intravenously. They discharged me but the symptoms persisted on Friday, so I reluctantly went back and this time was given more anti-histamine and steroid therapy for 2 days. Now I’m worried about restarting Humira in two weeks’ time, even though it will be a smaller dose. But no matter how tough it is, I’ll get through it.

While wrestling with anxiety, illness and overwhelming fatigue, I’ve also found time to go to a classical music concert, lots of art exhibitions (including two underground), watched two amazing fireworks displays, supported my friend Marianna Zappi’s fantastic gig at a central London museum, and caught up with friends for lunch and coffee & cake. It’s not easy to live with RA but I want to enjoy life as much as possible while getting better. Onwards and upwards!

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Slightly blurry pic of DALeast’s work at the ‘Brutal’ exhibition, held in a disused office building on the Strand in London

A & E and art

Exactly a year after a severe allergic reaction to hydroxychloroquine sulphate (Plaquenil), I was back in Accident & Emergency. My lungs were flaring up due to bronchiectasis. They felt like deflated balloons, my breathing was laboured, and I was coughing up lots. When I got to A & E, following an ECG to check my heart, I was asked to go next door to the Urgent Treatment Centre. This alleviated my worries a bit. Clearly, if it was more serious I would’ve had to stay in the main A & E area. The 1 year anniversary of the time I thought I was dying – and consequent Post Traumatic Stress Disorder – undoubtedly added a level of panic to the distressing lung problem. In the waiting room, as I was clearly distraught, a woman came over to me and started stroking my back to calm me. She was there with a friend because she’d walked into a glass door and knocked herself out earlier in the evening. It’s incredible that she did that despite her own pain. By the time the doctor called out my name, I was less agitated due to their words of wisdom and scribbled recommendations of a trauma therapy specialist and homeopathist. The doctor glanced at a recent CT chest scan and confirmed that my lungs were flaring up, but refused to prescribe antibiotics as I had recently taken another course. He added, rather ominously, “Of course, if it gets worse, you can always come back – I’ll be on duty for the next 2 nights – and I can give you antibiotics then. As you’re going to be on and off antibiotics for the rest of your life, no point in giving them until the infection is really bad.” I asked about taking the inhaler (I’d taken two puffs while sitting in A & E) but he said it would make no difference. So I had to leave, worrying about my lungs getting worse, and wondering how I will manage this chronic condition (on top of the RA and everything else) and prevent it deteriorating if I’m not getting clear advice on how to treat it. There must be something else other than taking antibiotics as and when needed. I resolved to ask the doctor at my next GP appointment.

Two days’ later, I was traipsing round the Tate Modern art gallery when I stumbled across Beninese artist Meshac Gaba’s ‘Museum of Contemporary African Art’, a mish-mash of interactive rooms hosting giant building blocks, an African street market, and a cosy salon area, complete with sofas and a white piano festooned with gold chocolate coins. I wasn’t expecting to see the piano and I’m a bit rusty, but played an impromtu version of ‘Maple Leaf Rag’ by Scott Joplin. One of the only pieces I can remember without sheet music. The first time I played quietly due to nerves. Then I just decided to go for it. As soon as I’d finished, a German tourist came over to say he’d enjoyed listening and his wife offered to take my photo which was sweet. Then one of the ever-present Tate gallery assistants came up to say it was refreshing to hear something that wasn’t Chopsticks, and to marvel at the speed my fingers flew over the keys. She then gestured at the chocolate coins on top of the piano and urged me to take one, so I did! I left the gallery on an absolute high, and Friday night’s events were pushed to the back of my thoughts.

New diagnosis

Another week, another set of hospital appointments – including hand therapy, physiotherapy, hydrotherapy, and blood monitoring. Today (although technically speaking it’s the next day as it’s 2am here) I was in the thoracic clinic for the first time. First, I had a lung test where I had to breathe into special equipment to test my lung capacity and breathing rate. The doctor listened to my chest and my description of the symptoms (coughing up blood and phlegm on a regular basis, feeling breathless).

Apparently I have Bronchiectasis but they need a CT scan of my chest to confirm the diagnosis. It’s a relief to finally put a name to this distressing set of symptoms that I’ve had for 5 years  (although I’ve only coughed up blood since last September). There was no time to discuss treatment options so it’s a question of waiting til the CT scan results come in. To top it off, the area in front of my left hear has ballooned with what looks like an infection. That’s why being on immuno-suppressants is such a mixed experience – although it’s suppressing the disease, at the same time it’s lowering my immune system meaning I keep getting infections. It’s a balancing act – hopefully if I need anti-biotics I’ll be able to keep going with the Sulphasalazine to try and get my health stable.