CFS isn’t an easy thing to live with. I guess that’s not really all that much of a surprise. Having a body that doesn’t seem to want to function in the way it should is never going to make things easier. Losing my independence wasn’t easy either. I had always thought that when I left home it would be for good. The idea of going back was never considered, even when I got ill in Canada I knew I would be able to cope on my own.
Leaving home gave me the space I needed to come to terms with a lot of things. It allowed me to stop being angry and start to understand why somethings had happened the way they had. I’m autistic. It’s not a big deal, not anymore. I’ve learnt to understand what it means for me and for other people around me. It’s all I know and I wouldn’t change it for the world, but that doesn’t mean it made growing up easy.
Misunderstandings made me fiercely independent at quite a young age. For a long time, I believed the only person who could look after me or understand me or even like me was me. Growing up feeling different, wishing that for just one day I could be like everyone else, hating myself for not being able to understand other people took its toll. It’s hardly a surprise I have had depression for over half my life.
I don’t want to dwell too much on the past. Those things happened a long time ago. I’ve come to understand why they happened, and I don’t blame anyone, not anymore. Shit happens, it’s a fact of life. There is no point trying to find someone to blame or holding on to anger from the past.
I do sometimes wonder what my life would have been like if I never got ill. If I had been able to run as far away as I wanted too and not look back. Would I be happy? Would I have forgiven my past? Would I be in contact with home? I don’t know, but as harsh as it sounds I don’t I would be.
I don’t believe in fate, or that things happen for a reason or anything like that. I believe in people and in making the best of things. I believe in not giving up and looking for the good in every situation. And I think I have got quite good at that. Sometimes I worry that I have got too good.
Since getting CFS I have perfected my ability to smile when I really want to scream. I have become an expert at telling people I am fine and wittering on about all the good things because I know that’s what they want to hear. I don’t like to admit when I’m struggling. I don’t want to pick up the phone and just cry because life isn’t fair and I’m fed up. It doesn’t seem fair to subject anyone else to that.
And often getting overly upset about things doesn’t help me either. I know it’s important to allow emotions to come and be felt, but I also know dwelling on them just makes things worse. As much as I don’t want to subject other people to me when I’m upset, I don’t want to let myself feel that negativity either.
I hate the feeling of falling apart, of not being able to cope. I have always been proud of my ability to cope with shit. I have always seen it as a strength but maybe it’s not. Remaining positive is one thing, forgetting that it’s ok to not be ok is another. And recently I think I have been forgetting.
I know why, I’m scared my depression will come back. I have been able to enjoy almost two years of feeling good and being happy. Something at one point I didn’t believe would ever happen. And when I tell myself I’m happy, things feel ok. When I push aside the uneasy feelings and paste on a smile, I can kid myself into believing things are good.
But sometimes it’s not. Sometimes I do need to cry. Sometimes I need to let myself no be ok for a few hours. Sometimes I need to pick up the phone and cry. I need to remind myself it’s ok to not be ok.
It’s not an easy thing to do. I have to psych myself up for it. One of the things about being autistic is emotions come all at once. I’m either fine or totally overwhelmed. And the feeling when too many emotions are coursing through me is horrible. There is often a physical pain. I feel like I am drowning in feelings and I just want to push them out. This is why autistic meltdowns often are loud and violent. It’s also one of the reasons I’m so keen on being fine all the time.
But recently, I was able to get it right. I knew the feelings where coming, I had that uneasy feeling in my stomach which is my early warning system. A red light was flashing and I knew unless I did something soon I was going to implode.
So I did the thing I hate to do. I picked up the phone and I cried. I talked to one of my best friends about how I felt and she listened. I put my pride to one side and admitted that it’s sometimes necessary to let those pesky emotions come out. And I felt better for it. We talked and I cried until we talked and we laughed. I knew what I needed but I have always been scared of reaching out and asking for it.
I knew what I needed but I have always been scared of reaching out and asking for it. I don’t really know why. If one of my friends was upset and needed to talk to me I would want to be there. But for some reason, I feel bad about asking it of them, even though I know they don’t mind.
It’s something I’m working on. Something I know I need to do. CFS has taught me a lot but also made me forget a few things. Now I’m getting better I need to start remembering them again.
I hope this makes sence, it made sence to me when I was writing it!
The girl with the braid in her hair xxx