I was at the busy biologic clinic at the hospital today, along with a huge number of others being followed up or hoping to start on one of the anti-tnf drugs. I was there for a follow up, we debated whether my injections are working or if I should swap to try a third biologic - the decision was to keep going for a few months as there have been a few slight but good signs of response. I was very happy with the consultation, I said what I wanted to, asked my questions, felt listened to, understood what the plan is...all good.
However, I am perplexed.
Apart from a couple of others, it seemed that everyone else in the clinic (including the new biologic patients) was walking with a normal stride and normal or near-normal gait, sitting down and standing up without hesitation, pushing doors, standing in queues, taking off coats... and then there's me, rolling gait, short steps, walking slowly, shoulders and hips screaming, ankles and knees giving way, in pain and wincing at everything I did.
Don't get me wrong, I'm delighted for everyone else, but is there really such a difference between how this disease and the medication affect us? People talk about flares but I don't know what that feels like, my inflammation has never subsided so I've not known life without 'flare' for 3 years, only progression and unremitting pain. I hear some of you talk of exercise, walking the dog, going on holiday - all far off dreams for me.
I've had a huge wake-up call today, I think I'm a bit shell shocked. My occupational health doctor told me I was at the 'extreme end' of this disease, I don't think it had sunk in until today what that means.
Or, am I being a drama queen?