Asking for more help

When I first admitted to myself that I needed care, it was after having spent 3 days lying in my own filth, unable to get up. This time it was the realisation that the only thing I had cooked in the previous week was a bowl of popcorn. And admitting the only things I’d eaten other than that popcorn for the entire week was a couple of muesli bars and some hot chips.

I reduced the amount of care I required in the last couple of years while Aimovig made the world wonderful, but now that I’m off it and have so rapidly returned to crap, I’m now having to ask for more help. It’s hard and humiliating, but I am blessed to have a good carer who is really happy to do more.

Asking for help is hard. Asking for help with basic adulting is really hard. But that’s where I’m at. I can’t clean my house, I can’t prepare a meal more complicated than toast, and I’m no longer walking the dog every day.

The extent to which I’ve been unable to deliver on things for Migraine Awareness Month has been really difficult for me to deal with. I look at some of those videos where I’d pushed through to get it done and think ‘stupid girl, you should have been in bed!’

I don’t like to let people down, so I did push through. But the cost of that is that my house is a mess, I haven’t done any washing in a month, and I haven’t been eating. Oh, and I couldn’t read for a week, I’m in nine different kinds of pain, I struggle to sit up, I’m vomiting every day, and my concentration is shot.

I’m doing everything that we do when we’re not good. Back to strict elimination diet, pacing like it’s the only option even though I bloody hate it, And a *lot* of makeup for any videos or photos to (fail at) hiding how amazingly ill I am.

I have a referral to a new neurologist, whom I can’t see until October and it will cost me $400 for the privilege, but given the last one refused to ask for compassionate access to Aimovig I don’t really see that I have a choice.

Universal health care in this country is a myth. And I was rejected from the NDIS despite needing this level of care and support. I live in Queensland, rather than NSW, because they still have State level disability supports for people that don’t qualify for the NDIS (I should qualify, but the NDIA thinks migraine – a genetic sensory processing disorder – is not a life long condition).

And I am angry.

I’m angry I can’t get the care I need, that I can’t get the medication I need, and no one seems to care.

I am angry that my body continues to fail me,and there is nothing I can do about it because I simply don’t have the cash.

I am angry that I can no longer continue to fight the fight for other people because I didn’t win the fight for myself and the drug I need.

But at least the Queensland Government will do their bit to ensure that I am fed and my house clean.