Hard Days

I posted this earlier on FaceBook (AspieHouse)

So if you have ever wondered what having Aspergers has to do with Ehlers Danlos Syndrome and why don’t I just have two different pages??? Here is your answer…

I can’t separate the two. I have both and they play with each other.

Today, I got in “the zone”. The Aspie zone. The zone where I decided that I was going to do something and so I did. I finished decluttering and cleaning up the house (not cleaning, but tidying, putting away clothes etc). It’s done. The house is now done inside and hopefully this is the start of a new life of more ease and simplicity.

Tonight, I am paying for it. I had trouble feeding myself dinner, even though it was already cut up for me. I couldn’t lift my fork with my right hand at all. I had a lot of trouble using my left hand. By the time I was done (well, not really but my left arm/hand stopped working too), I couldn’t even give myself my pills. BJ had to give them to me. Literally put them in my mouth and literally put the glass up and tip it so I could swallow the Solprin with them. A first for us both. We both know it won’t be the last time.

Maybe if I didn’t have Aspergers, I wouldn’t have pushed past my point of no return today. I know plenty of determined people who do not have Aspergers – but it seems different. Being Aspie determined seems different. I think that maybe my friends would have noticed the signs their body was giving them and would have pushed through anyway.

I didn’t notice the signs. I was in “the zone”.

And now none of my limbs are working properly, if at all. Even typing this is hard (though, thank goodness my mother insisted I learn to touch type!!!).

I knew intellectually that I would pay for pushing through today. But I was determined. And I didn’t realise the price would be this high. I just didn’t notice the signs!!!

Having Aspergers affects how I have a physical disability. Just as having a physical disability affects how I have Aspergers.


Which partly explains why I feel like shit.  Other reasons include our new Prime Minister, the fact that I can’t see any solutions to the multitude of problems that we currently have, that my last hope – my scrapbooking business – is dead before it even got started, and that people have been screwing me over by stealing my ideas and generally treating me like shit.  Instead of getting the services we are eligible for but not getting, instead we have had some we are receiving cut.  The kids aren’t doing too well at kindy/school – both are being bullied.

And it seems like everyone just wants me to shut the fuck up already about it all.

The thing is – I don’t want much.  Health care.  Therapy.  Enough income to keep our modest roof over our heads and food in the cupboard.  I am eligible for 20 hours of support a week, but if we only got 10 – 2 hours a day to help with dinner and baths – I’d be happy as a pig in shit.  An extra couple of hours once a month to go to the hairdresser maybe.  I just want the basics.

And I am willing to put in volunteer work time as compensation to my community for these “luxuries” *cough*.  Actually, I am already.  In order to get my taxi-voucher subsidy card thingy, I needed to add up the hours I work – and I do more than 30 a month.  Much more some months.

I keep thinking of suicide.  But I don’t want to die.  I keep thinking of packing up and just leaving and starting again somewhere else – but my kids are settled here and I love this house!  Maybe I need to leave for a while.  Leave the kids here with my husband and just have a month away somewhere.  Gain some perspective.  Have a good long term break.  My family would hate it, but maybe they would hate it less than moving themselves.

I don’t know.  I really don’t know what the answer is.  But we need one.  And fast.  And that is why I keep talking about it.  To try and find that all elusive answer.

Disability consumer and activist. Pissed off since 1995... Mad as a hatter since way before that.

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Posted in Autism, Disability, Ehlers Danlos Syndrome, Personal

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Pissed off since 1995. Mad as a hatter since way before that.

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We are raising money to cover the boys medical and disability expenses. ALL funds raised go into their own account, to pay for these expenses. Things such as speech therapy, occuptational therapy, psychology, chaperoned sport and social activities, and special equipment etc. I hate having to do this, but hey, if you don't like it, then give me a job ;-). Please click on the photo to go to their GoFundMe page, and thank you for your time (and I do hope, your generous donation *cheeky grin*)!!!

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