Yesterday, I called the autism helpline (Autismetelefoon Flanders : 078 152 252).
You may think : 'So what ? Big deal.'
For me it is a big deal. It's a huge deal.
I'm an independent person. I hate it when I have to ask for help.
But I have been feeling so ... isolated.
There's no one to talk to, no one to ask if this or that is 'normal'.
And after a while, you start to doubt yourself and the things you're feeling.
You start to think that you're lazy and a freeloader,
that this is what the rest of your life is going to be like.
When I talked to the person from the autism helpline however, I had the feeling -for
the very first time in my life- that the other person understood me completely.
It was wonderful. Like coming home after a very long travel.
The thing that has been bothering me the most, since I got the diagnosis (and the many years before that), is my lack of energy.
The social isolation, I can live with. But this god awful lack of energy ...
It is horrible.
Most of the time I feel as if I'm only half awake. My brain is buzzing, and my body feels heavy. On some days (usually a couple of times a week), I can't do anything but sit on the sofa and wait until it's time to go back to bed. On those days my joints and muscles ache, and I'm beyond exhausted. (This is not me complaining, or looking for sympathy. I'm just trying to describe what it feels like for me.)
When I asked the person from the helpline about this, she said that many people
with autism complain about a lack of energy.
She explained that this happens because there are just too many stimuli for us.
Sometimes we are aware of this, and sometimes we try 'to process' everything
subconsciously. And that's what makes us feel so tired most of the time.
I told her I had already been home for almost a year, and that I had expected
to be feeling a lot better by now. I mean : I'm not doing anything.
She said this is not unusual. Sometimes people do too
much for too long (especially if they are undiagnosed), and their body and mind
are simply exhausted. It can take a long time (years) before the
energy is somewhat restored.
The only thing you can do, is rest, and be very careful not to overtax yourself.
I became a little emotional at that point, so I thanked her, and put down the phone.
I was thinking about people (with autism, or 'experts') saying that autism is a
curse and a blessing. That people 'on the spectrum' have talents that
'neurotypicals' do not have.
But all I can think about is, how many things I could have done with my life ...
if only I would have had a little more energy.