The last five weeks have all been a bit up and down; some days I’ve felt great and other weeks have been a total disaster. The last couple of weeks have been particularly bad, however, but until today I just couldn’t work out why. I knew I hadn’t been ‘pushing’ myself (no base jumping or tiger wrestling) yet the brain fog well and truly descended upon me and I’ve had the energy levels of a snail.
The reason for this became clear, following my third blood test on Monday. I had a call this morning to say my GP needed to speak to me about my results. I admit I freaked out, just a little. In my experience, doctors rarely call you at home to tell you anything you’d actually want to hear. The last such home call I received was from a different doctor, telling me I had to see a neurologist immediately as my life was in danger. But that’s a whole other story.
A flurry of phone calls ensued between my GP, the rheumatology nurses, the rheumatologist and myself. Apparently, my white cell count and my neutrophils were crazy low, and this put me at a much greater risk of infection. I swear I could feel my chest tightening and a tickle in my throat as soon as she told me.
If you so much as cough or sneeze or feel slightly hot or unwell you must come into the surgery straight away, my GP warned me. But I’ll never get an appointment, I pointed out. Consider this a fast past to get in whenever you need, she assured me, just say you have to be seen as a matter of urgency.
Hmmm, look forward to trying that one out on the
bull dogs receptionists who man the surgery phones. They seem to regard every enquiry for a same-day appointment as a completely unreasonable and unnecessary request. I once had to throw myself, weeping and wailing across the counter top before they reluctantly ‘allowed’ me to see a doctor.
To cut a long story short, my azathioprine dosage has now been cut by 50mg to see if this will bring my bloods in line. I’m also back to vetting all my visiting friends in case they or their offspring are infectious or sick. My melodramatic self is now picturing having to live in a vacuum packed bubble for the rest of my life. Yes I know, I’ve already told myself to get a grip on reality and calm down.
Rewind to Day 20.