With a lot to tell and the hope I'm able to tell it all.
It started a while ago.
I wasn't feeling well, had problems breathing and felt I had to prepare my autistic son for living in a protected environment outside home.
The last is almost impossible after the whole caresystem has changed due to the recession, but the whole idea of having to take care of him untill my death frightnened me to bits. I assumed that would be untill my 80ties and I saw myself repeating every daily activity year after year in the same way, without any change than his beard getting grey and I growing a terrible curved back.
On the other hand I worried about him being left alone when i wouldn't be on this earth anymore.
I was tired of fighting all those people who know everything so well about the lives of others without being able to manage their own, and seeing even uglier fights in the near future.
Ofcourse I have my friends, but I felt alone for some strange reason.
Then I got pneumonia, which was rather nasty and more troubling then the 5 times I've had it before.
It was like something had taken my breath away and left me like a night candle, trying to stay on.. barely.
When the antibiotics were gone I still felt ill.
My doc send me to hospital for a bloodtest to see of there was still an infection.
The nurse said I would get his call in about an hour, but it took him all afternoon so I assumed he had to speak to the lungspecialist.
I was right.
She wanted to see me. I would get a mail the next day which would tell me when to call for an appointment.
It came the next morning, thursday, and stated the department would have the paperwork ready on monday after 14.00 o'clock so I could call after that.
Then the phone rang: I had to be there on monday.
She showed me the x-ray with the pneumonia and a lot more that was ugly, listened to my lungs and told me she thought I had a lung embolism.
I smiled. Told her I didn't have one, but that something else was seriously wrong and went on trying to breathe.
Then I got paperwork and was ordered to have bloods taken and to have an ECG.
I had to walk through a large part of the hospital, even had to go back because the secretary had mixed up names, and could hardly make it to the ECG.
To my surprise I got the transcript straight with me including a computerized diagnosis and it scared the hell out of me. I sat down, wrote it all down and handed the transcript over to the doc.
She told me I didn't have a lung embolism and was allowed to go home, but with a referral to the cardiologist.
It looked like something was wrong.
I had to wait 6 weeks before I got an appointment.
By then I had deteriorated badly, could hardly walk, had difficulty breathing every day for hours on end.
Here you'll find impressions of my life as a mother of a few children with autism spectrum disorder and a person with heartfailure, some critical reviews of what going on in the world, including medical issues and political subjects. And everything else that keeps me busy.
I'm very honest about my experiences with autism, because only that way I can show how much of a struggle daily life with autism can be.
A series of posts
about lack of knowledge,
lack of concensus between disciplines
and the need for a formal diagnosis
with a psychiatric label
to get support for a unique individual
autism and (no) school.
One of our true autism stories Click the image.
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Don't comment on my english
when you can't write my Dutch.