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.