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.

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Insomnia

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It’s 3am and I can’t sleep. It feels as if a mobile is vibrating intently and relentlessly in the middle of my chest, I can hear my heartbeat pulsating in both ears, my right arm feels heavy and numb like it’s anaesthetised, my head is pounding with migraine, my wrists are burning and my right ear feels like it’s filled with water.

For 8 days my rheumatoid arthritis has been raging without treatment because I had to stop Sulfasalazine last Friday due to raised liver enzymes and low white blood cells. This was devastating because my joints actually felt better and I felt less like a zombie due to the extreme fatigue and brain fog that has returned with a vengeance. I won’t see the consultant for another week so have to live with all these unpleasant sensations and cloud of pain and exhaustion til then.

One of the reasons I have insomnia (apart from the untreated RA) is that almost exactly a year ago, 5 September 2012, I had an extremely rare, severe allergic reaction to hydroxychloroquine sulphate involving hallucinations and broncho-spasms over 2 days. As it happened around 2.30am, I keep getting flashbacks to that time and that exact feeling that I was going to die comes flooding back. It took months but I was finally diagnosed with Post Traumatic Stress Disorder and Health Anxiety on top of Rheumatoid Arthritis and Ehlers-Danlos Syndrome. I recently started therapy for the PTSD and hope I can manage to banish it soon.

Dealing with RA is tough and depressing in itself but for some people (and unfortunately this has happened to me three times with Disease-Modifying Anti-Rheumatic Drugs) the drugs have scary side effects. It is frustrating that there isn’t just one treatment that suits everyone, rather than feeling like I’m taking a gamble each time I try a new drug. Right now I’m just going to try and relax, listen to classical music (Mozart in particular has a calming effect) and will try once more to sleep.