The boss meets the negotiator from the personnel dept. who meets the negotiator from the government agency (who will partly fund my assistant if the boss pays the rest) who turns to me with that cheery social worker smile (no offence) and asks me: in a nutshell, how do you notice a flare up of your what was the name of your chronic disease?
Well, I imagine I answered, it starts with this feeling of utter tiredness washing over me. You know like the time when I was breastfeeding for nights on end. No sleep until I lost all sense of time. But this here is without the exhilarating happiness. More like something fierce holding me down and pushing against my chest. Like walking through deep wet snow. Or trying to swim against a strong current too scared to let go but knowing I will have to.
When the stuff that's been clogging up my sinuses for the last couple of weeks turns out to be crusts of blood and it takes longer every morning to clear. When the tinitus bass quartet in my ears (ok I know it actually is in the brain but) has become a full orchestra with cymbals and trombones and a massive percussion section.
When I count every blessed hour without vertigo - keeping fingers crossed but knowing it can happen any minute because my ears are throbbing and aching ready to explode.
Basically, I could explain, basically this is just the beginning. Those weeks when my head packs it in because you know, everything is too noisy too fast too much even my own miserable voice. By then usually my stomach and my liver and my intestine begin to act up which can be rather painful and tedious because food becomes a problem and sometimes the heart cuts out for a bit on and off and I wake up about 100 times at night soaking wet and shivering and wondering what the heck and I could go on.
But no. You want it in a nutshell. Microvessels get inflamed anywhere in my body but mostly in my inner ears, lungs, throat, stomach, guts and heart due to a programming error of my immune system.
Which is why I am going to hospital on Wednesday for another round of monoclonal antibody infusions. The miracle therapy - here's hoping.
(The boss BTW is going to cough up the money and recruitment for my assistant has started today.)