There can be a lot of surprising and unexpected emotions that come with having M.E., guilt, self doubt, anger, sadness, self pity but the most surprising thing about them is the volume and intensity with which they wash over you.
So, you know when you are really, really exhausted, like I’m thinking sleep deprived parent level exhausted and you get a bit delirious? One minute you are laughing, the next minute you are crying and you feel totally incapable of holding it together enough to stop yourself from doing either of these things or just having some sort of outburst?
Well that’s what it’s like with M.E., well for me it is anyway. I am so physically, mentally and emotionally fatigued that I have no emotional resilience at all, EVER. If someone’s kind to me, I cry. If someone’s mean to me, I cry. If it’s too loud or bright and it hurts, I cry. If I see a baby on tv, I….. well you get the picture.
Mr M.E finds this quite endearing most of the time and calls me a soppy old tart, a big softy and a delicate flower, all of which I choose to take as signs of affection…that also make me…yes, yes I know, you get it.
My point is that, not being able to control my emotions can make existing in the real world, which is quite a harsh place, very difficult. There are many things about having M.E. that make it difficult, if not impossible to work but I don’t think people talk about this one much.
Before I had to give up work I had several embarrassing situations where I cried in front of people inappropriately and to them seemingly inexplicably, I’m sure. I’ve also had several situations where I have been unable to deal with everyday stresses because of the emotional impact and aforementioned onset of tears or extreme anger followed by tears.
When people look at me and think or say “but you are still bright, capable and articulate, you could be working?!” I try to take it as a compliment, frustrating though it may, be but I’d like to explain to them. I’d like to say that what they don’t understand (apart from all the other pain, headaches, dizziness, nausea and exhaustion that make dragging my carcass about extremely difficult) is that at any given frazzled moment I could embarrassingly lose control of my emotions and cry on them.
Employers don’t tend to like that and in my experience are not at all tolerant or supportive of it.
Worst true story – after a lengthy bad relapse a few years ago, I felt well enough to have a stab at the interview market and one lady was so nice to me, saying what a great attitude I had and how brave I was that the tears just streamed unbidden down my face in the interview. Needless to say that I didn’t get the job.
So even if you think it can seem that I can do certain things at certain times, the truth is, I cannot do them consistently. If I get myself to the point of gainful employment, I am very unlikely to be able to deal with it emotionally (or physically) on an ongoing basis. The more tired I am, the more my other symptoms flare up and the more emotionally vulnerable I become. Then it is only a matter of time before I crash.
The only answer, longer term, will be to be able to fulfil my ambition of doing something that I can do quietly at home with lots of rest and very little ‘over stimulation’. #dreamsandambitions.