I look "fine", I have normal social skills, and I'm writing this blog so I can't be mentally incompetent or illiterate. Surely there's a job I could do? Well here's the thing:
On that basis, would you give me a job?
Some days I can manage to come to the office to do my voluntary work because the journey is easy and I can always get a seat at the bus stop and on the bus. Other days I don't have the physical endurance to commute or manage the office environment but I can still do a little work from home. In the last few months I've been able to attend my place of work about 60% of the time I was expected to.
With that reliability rate, would you give me a job?
I never have the stamina for a full eight hour day. On a good day I'll manage about six, but only by taking long breaks throughout the day to recharge my mental and physical batteries. I don't feel bad doing that because I'm not being paid for my time at work. But for considerable amounts of time I need to sit back in a reclining seat and gaze out of the window while my brain is out of action.
Would my colleagues think it was fair that I'm paid for long stretches of non-productivity?
I often need to recline horizontally in order to accommodate my orthostatic intolerance. Otherwise not enough blood goes to my brain and my cognitive symptoms of short term memory loss, brain fog, and poor concentration get so bad that I can't do anything that could be meaningfully called work. Sometimes it's enough to lie for short periods at a time to recharge my brain as it were. Other times my brain won't work at all unless I'm reclining.
So ideally I'd need to be able to lie down at work. Now I'm so keen to work that I've even resorted to lying down in the middle of the office, among the bags, under the desk. But that felt really wrong. There is something about professional boundaries and conduct at work, I've learnt, and lying down among your colleagues' feet definitely breaks that code of conduct.
So really I would need a room just for myself to be able to lie down in. I don't need a bed; a yoga mat would do. But somewhere private.
Would your workplace be able to accommodate my need for a private resting area?
In the voluntary work I do I'm sometimes invited to attend meetings. I keenly accept. Yet I have only been able to attend about 40% of the meetings I've committed to in the last few months because of unpredictable fluctuations in my illness.
I wouldn't give me a job.
Couldn't I just learn to manage my illness better so I would be more reliable?
Aren't all my ups and downs just stress-related? Couldn't I get a better grip on things?
Actually, it is only by managing my illness as well as I do that I function at all, that I manage parenting plus a bit of voluntary work. My eating and sleeping are regimented like clockwork. Stressful emotions are kept at arm's length. Partying, alcohol, late nights, in fact most forms of spontaneity, are out. My "spoons", or units of energy, have to be carefully measured out and allocated for the day so that I'm not collapsed when it's time to put the children's dinner on the table. You couldn't lead a more restrained lifestyle than I do. Despite that my body's energy-producing mechanism is inherently unstable, like an active volcano that erupts periodically, sometimes sporadically and sometimes in violent clusters.