Just Because I Can

I’d like to note straight up – this blog is about acceptance, not pity.  Things are what they are, and I am SO lucky to have an awesome family, and awesome sense of humour.  In this blog, I am trying to accept that I am broken, and the reasons why that is OK, for now (as well as show people what it’s like to be a disabled parent with disabled kids).  But – I also know that I’m going to be OK – some time in the future *grin*.

This is a blog post that I am writing just because I can.

I haven’t been feeling too good lately.  Emotionally, physically, emotionally.  Things have been building up to the point where I can’t think straight.  Or at all.  BJ asks me a question and my mind is literally white when I try to think of an answer.  It’s really weird.  And disconcerting.

Last week, I rang Lifeline and copped a bad one who started with “well, you can always call us back” while I was in the middle of saying something.  I obliged her obvious need to get off the phone, and found the courage to call the Suicide Call Back Service (1300 659 467).  The woman I talked to there was more than awesome.  By the end of the call I had a plan.  It wasn’t much of a plan, but it was a start.  I was over that particular hump, and also finally got some sleep.

My enthusiasm however, didn’t last, and yesterday I cried at my son’s kindy.  His teacher reminded us that we needed to remember to put his MedicAlert bracelet on and I snapped something back at her before bursting into tears.  I felt like a terrible mother, and I felt as though she was just confirming that fact (she wasn’t, and she was actually really nice to me about it all, bless her!).  The truth is, we have left his bracelet on the counter so that it is RIGHT THERE, but sadly, it is still forgotten.  We are now leaving it on our car keys.

There have been a hundred other things going on as well – but I won’t bore you with all that.  I mean, I know people aren’t interested you know?  But still, I am tempted because it is becoming more and more obvious to me that people do not understand what it is like to live like this – with a household full of disabilities and complications.

Screw it.  Read on if you want.  Don’t read on if you don’t want.  It’s up to you.

Here is a quick rundown of things I currently have to think about and “sort out”:

* Respite/carer.  I am technically the kids carer and BJ is technically my carer, however we all need a break every now and then.  BJ needs time to himself.  I need time to myself.  The kids need to go out every now and then and be “normal”, instead of being stuck at home all the time with a mother who doesn’t have a wheelchair yet.  This is where respite/carer comes in.  Unfortunately, we have had trouble finding someone to do the job.  Many are good with the kids for certain hours a week, or can spend an hour or so with me a week, but finding someone who can do odd hours, and be either with the kids, with me, or with all of us to go out (BJ can’t look after the three us together on a day out – it’s just too hard to deal with 2 kids on the spectrum while pushing your wife around in a loaned wheelchair that has seen better days)  – has been nigh impossible.

We may have found someone now, but she hasn’t started yet.  Fingers crossed it works out!!!  Until then, it is a struggle.  I never go out.  The kids never go out.  BJ is going mad from never having any time alone (a MUST for an Aspie!!!).

* My wheelchair *sigh*.  After years of not having a diagnosis (because as one GP put it – why would I need one when there is nothing they can do anyway *grr*) – I finally achieved that golden piece of paper that states “Linda has Ehlers Danlos Syndrome”.  I am now eligible to access the Medical Aides Subsidy Scheme (MASS) so that I can have a wheelchair of my very own (and can go to more places than just the shopping centre who have loaners).  It has taken a meeting with a physiotherapist and the supplier to work out which one to prescribe, and then the prescription had to go to MASS, which took around five months to process.  I was given approval (yay!), and the supplier said it would be ready in a couple of weeks.  I waited, and then waited some more, and finally called them yesterday.  As the QLD Government has cut health jobs, and my physiotherapist was one of those to go, I no longer have a prescribing physiotherapist who can be there when my wheelchair is delivered.  MASS rules state that she has to be there.  I’m still unsure of what we are going to do about that.

* We have had a few issues with religion at my son’s school, which involved the writing of emails and general uneasiness and conflict.  I think we are past it now, but it wasn’t pleasant.

* We had to pull Q out of daycare and put him in kindy.  Not before we spent a couple of weeks trying to have his needs met though, obviously to no avail.

* I have been physically more ill than usual and so my volunteer work has fallen behind.  The emails however, have not stopped, and I feel incredibly guilty for not being able to do what I need to do.

(((These last three things may seem like everyday stuff, but for an Aspie that hates conflict, and hates not living up to her position – it is really stressful and it takes an awful amount of energy to get through it all.)))

* I have had many many forms to fill out.  My Companion Card required two passport photo’s.  It took me a couple of months to get them taken as several things had to line up in order for me to get to the post office.  I also had to see my GP (twice because I didn’t realise that she also had to sign the photo’s until after the first appointment), and fill out a fairly bulky form.

I have also had to fill out forms for the Pensioner Education Supplement (and provide documentation), disability services through university (requiring a trip to the GP and other documentation), two other Centrelink forms (each requiring a trip to the GP and documentation), extensive forms for Q for Kindy (requiring two trips to the GP and extensive documentation), and I’m sure there have been others but I don’t remember them off hand.  Indeed, for one lot, Centrelink rang and told me I forgot to include some forms.  She asked me if I remembered filling them out.  I explained that I have filled in so many forms in the last month, that I simply don’t remember them all!!!

With all these GP visits, it is worth noting that my GP does not live in town, and seeing her is a 1.5 hour round trip, plus the usual waiting time that one encounters at the GP…

* I need a CPAP machine, but can’t access the free one the government provides and so I am trying to get funding for one.  My AHI score was 57 (severe is 30+).  With a machine I am down to 0.7!!!  However, I can’t afford to rent one, let alone buy one!

* I also need to have the bathroom renovated and a stair chair lift put in, so I am waiting to hear about funding for those.  This has been dragging on for nearly a year.  In the meantime, I am having a shower 2-3 times a week, and often can’t go anywhere because I can’t get down the stairs.

* We had a rail put in for the stairs.  It wasn’t done properly, so now we have had to complain and are in the process of sorting that mess out.  And it has been QUITE the mess (as in, not just for us – we are actually only complaining to back up someone else – not that we don’t have a legitimate complaint ourselves, but with everything else, I’m not sure I could have been bothered if it was just for us), for reasons I can’t go into here just yet.

* University – I mean, what was I thinking, really?  I am behind and finding it hard to concentrate, but I don’t want to give it up either.  I am determined to finish and it’s not like any of this shit is going away, so I am just going to have to learn how to cope with it, or fail trying!

I am also trying to get help from the student support centre, however as my support isn’t “normal”, it is proving somewhat difficult to have my needs met.  It may not happen for a while, so I have extra struggles there too, and am having to keep on top of what is going on so I don’t get lost in the system.

* Health issues.  Q is really sick, N is sorta sick, and I’m a constant mess.  I’m seeing a dietician to try and work some stuff out and am on the waitlist for surgery and to see a neurologist.  I also have my psychologist appointments which are about to run out, so I am trying to find the funding to pay for some more.  I keep having to have appointments at Sleep Screen in regards to my CPAP trial etc (1.5 hour round trip plus appointment time, which is exhausting).

* And last, but certainly not least – the usual “my kids have a disability” stuff – GP appointments and therapy and making sure that they are being looked after properly at school and kindy.  Making sure their footwear is right, and that their lungs sound ok.  Making sure that they are eating properly and pooping properly and that their skin isn’t too dry/bleeding.  IEP meetings with school, constant emails to teachers, getting GP’s to write letters so that kindy will pay for a teacher aide, and making sure everyone has a copy of asthma plans and information on EDS and Autism.

There are also the normal things like going to special events at school, except that each of these things are now 100 times harder because of my mobility and pain issues.  AND the usual household stuff – the air con has mould and needs a service and fan replaced – none of which we can afford.  The car needs a service badly which we have been saving for but it’s going to take everything to align properly for it to happen.  AND the usual parenting stuff – bad behaviour and dates with friends and ensuring teeth are brushed every morning…

And relationships.  I’m not even going into details of how everyone is getting along (or not as the case may be).  I’ve lost friends (I think?) and am not sure why.  I have gained a bestie and it is all exciting, but also draining emotionally as I am not sure about so much stuff to do with friendships!  And just personal stuff, like wanting to work SO badly and not being able to, or not having time (or more importantly, the head space), to write or do art or take a breath!

So yeah, I’m not coping and I am crying in public places.  And if, after reading all that, you can’t understand why, then seriously, there is something wrong with YOU.  I don’t know of anyone who could keep it together with all this going on.

I am thus declaring myself broken.  And I am not even going to be a little bit ashamed of that.

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

Tagged with:
Posted in Autism, Disability, Ehlers Danlos Syndrome, Mental Health, Personal
2 comments on “Just Because I Can
  1. Jude says:

    this made me cry.

    I feel I get the EDS more now. my friend has it, and we’re fairly open about most things but it’s hard to explain in real life (or maybe she just doesn’t want to? that would make sense too…) so I never really got what it all meant. thanks.

    I hope life got a bit easier over the past few months.

    • Thanks for your comment, and I’m sorry I made you cry!

      Things are better now :-). Health is stably crap lol… We have a new bathroom and stair lift and wheelchair :-). I even got to go away last weekend by myself to see the ballet with a friend!

      I hope your friend is doing ok!

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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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