I’ve been writing to friends behind the scenes, trying to put sense to what I’m thinking and feeling. Wondering how other people cope with this situation. (Thanks to all of you, and especially Anna, who listens to me vent.) The bottom line appears (to my befuddled brain) that I’m actually overwhelmed. The system is overloaded; it can’t process any more. No more info … no more emotion … no more fear … no more requests for paperwork, forms, appointments, tests. The whole morass is juuust reaching a tipping point where, on the other side of a certain line, nothing makes sense anymore.
Let me put it another way. For a quarter of a century, Dave has been my strength, my rock. Now it’s my turn to be the strength, the rock … it feels as if the ground has been snatched out from under my feet, leaving me spinning in freefall … falling, falling … trying to find my wings. When you’re in freefall, you either find your wings and fly free, or you crash. And I can’t afford to crash.
To cap it all, Dave has fallen ill. He has an upper respiratory infection and has spent two days coughing his lungs up. Everyone at work has it, so it’s no surprise. But when you’re trying to keep your head above the rising tide of MND, this is no joke. He won’t throw it off as easily as he once would have. His energy levels may be noticeably lower after this.
What about the next infection? And the one after? A large part of me wants to tell him to walk away from work immediately, get out of the roiling stew of infection that is a residential aged care facility. Residents, care workers, nurses, caterers, visitors ― this is the mass of humanity, and every one of us is a walking biology lab, incubating everything imaginable.
We don’t have the means for him to quit so soon, but we can at least shut back the number of shifts back … lengthen the odds on him catching something else. And then ― he’ll be home, in a little quarantine bubble where he won’t be at risk.
To keep you posted: the application for Disability Support will be lodged on Nov 26, and we understand that no matter how long it takes to process, it will be backdated. So … credit cards to the rescue in the short term, and hope Centrelink processes the claim fast. If it starts going wrong, a lovely lady at MND SA has invited me to keep her posted. Her organization has some highly-placed contacts that can advocate for us. It’s also been suggested that I can approach members of parliament, and the Office of the Public Advocate. If it gets to this stage, I’ll need to have a social worker or case worker appointed to this struggle, because ―
Spinning in freefall. Haven’t found my wings yet. Not even sure if I can and will find them, or if I’m actually going to crash. Thing is, if I do, who’ll pick me up? I wouldn’t allow Dave and Mike to even attempt it … not fair. Mike is the last one to be there for Dave, and Dave has enough on his plate without me making a right, royal mess of this. So ―
No crashing. Crashing is not allowed. Next ―
We’ve managed to get Dave into acupuncture, starting Nov 27,, the earliest available appointment. Great results have been achieved overseas; I read a white paper out of Taipei and my radar turned on. There are no guarantees; reputable practitioners will say only that this therapy *can* slow it down. Like the Riluzole. Like the “magic potion” of nutrients that are recommended by researchers across the world.
Slow it down, buy us time. Let me get my brain back into working order. We’ll be seeing the GP, Tim, in six more days, and … well, I don’t usually hold with drugs, but this time around I’ll be asking for something. Meds, to take the edge off, make it possible for me to get through this. As Clara pointed out, if I were diabetic, I’d take my damned insulin, and there’s nothing wrong with asking for help and taking the meds.
So … Dr Tim first; forms going in ten directions; Disability Support claim lodged on time, acupuncture the day after ― the first of many ongoing sessions. With all this done, we’ll have reached the end of what we can do, must do … then we wait. And wait. For what?
For a 2025 lease, so we have a home next year. And in the midst of this housing crisis ― where firefighters, school teachers, ambulance crews and policemen can’t afford rents on their wages!! ― that’s actually no mean feat. So …
There’s a reason I’m overwhelmed. A bloody good one. Spinning in freefall, trying desperately to find my wings. Valkyrie wings. She’s in here somewhere. She needs to break free, and then we’ll fly. Not crash.
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