Starting Enbrel

After my first Enbrel injection today, I waited for a while in the clinic with a sense of dread, worrying if I would have a reaction. Half an hour later, I left, feeling a bit nauseous and tired but otherwise ok. Later on in the morning I developed a slight rash on my face and chest as well as a sore throat, but this was manageable. Then I had yet another blood test (my last one was three days ago). In the afternoon I heard from the specialist nurse that my neutrophils were low. So I have to miss the next dose, repeat the bloods, and perhaps see a haematologist to find out what’s going on with my blood results. Now I’m up at 2.30am in the morning with chest pain, a racing heart and anxiety about what the future holds. One of the hardest things to deal with when managing chronic illness is the uncertainty: over treatment, over test results, over the prognosis. Having an aggressive disease that is not yet controlled is scary and even more so when the treatment is complicating things, not improving them. Hopefully I will be able to continue on Enbrel if my neutrophils go back up to normal(ish) levels.

I’m approaching this by focusing on what can be done now, rather than in the future. It’s very easy to get carried away thinking ‘What if this happened?’, ‘Maybe this drug won’t work either’. This evening I went out and socialised, despite feeling exhausted, because I knew it would boost my mood and distract me from all of today’s events. And it worked. Taking this ‘living in the moment’ further, I’d like to do a mindfulness meditation course soon to get a fresh perspective on what I need to do to create change in my life and to assess how to reach my goals. Living with a disability (or several) shouldn’t stop you from aiming high and succeeding in whatever you choose. And if it doesn’t work the first time, there’s always another opportunity.

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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

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.