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!


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


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