Wednesday 21 November 2012

Thankful despite the murk: Day 21 #NHBPM

The last few weeks have been tough. Hell, the last few days have been really tough. Having a body that's always on the knife edge means that the slightest thing can knock me over. My system is not good when that surprise element comes along. This time in the form of anther popped lower back disc. Despite the worst of the pain being over and being able to start my paltry back exercises once more to climb my way back to my previous level of dodgy, my ANS is not having any of it. Instead it's taken the route of petulant teenager and is refusing to play ball.

I feel like I am walking and thinking through a dense fog. My body is completely uncooperative and has taken to packing it in even when I am simply sitting. I am exhausted mentally and physically and really, if I'm honest, I feel a bit overwhelmed at the moment. I knew it yesterday when I cried reading a chapter of Tim Costello's, Hope. That's just not me. I don't do that. But it gets like this at times. When my body is unrelenting in it's assault. I envy those people who can maintain their brain (and their calm) no matter what their body throws at them, but I'm not one of those lucky ones. I know all the reasons why. I can diagnose my cognitive difficulties and even tell you what neuropsychological tests I'd fail right now. But that doesn't make it any easier. Despite knowing it's a combination of fatigue, general ill health and the simple fact that I am not getting anywhere near enough blood to my brain, it makes me angry. I'm snappy and snarky with a good dose of vague thrown into the mix. I'm sure I'm an absolute delight to live with at present.

The last few days, vomiting for no apparent reason has re-entered the mix and my stomach is still churning and expelling Southwards despite pretty much mainlining Imodium. I feel like someone should be yelling "Thar she blows", to warn the unsuspecting in my vicinity. The unrelenting shitfight (all puns intended) is just plain hard to deal with at times. As my friend Sam and I were lamenting yesterday, we just need a day off, a designated sick day from being sick.

So of course in the midst of all this my son's Year 12 valedictory dinner was on last night. Even better Mr Grumpy was away for work so my main safety net was absent. It's times like this I realise how much I rely on him now. His very presence is comforting. I know no matter what happens he can handle it. I know he worries but he doesn't fall apart with the worry. He's a practical guy and just gets on with what needs to be done. And we have our own sick short hand. If I get a certain look, he knows what it means. If I say we need to go now, he knows it means immediately, no fluffing around. If I say I need a loo he  zooms to the nearest servo or maccas no questions asked. He knows when to ask if I'm okay and when it's just my normal. That knowledge removes more stress from my shoulders than I ever really appreciate until times like this. Without him I have to admit my anxiety began to kick in. It's hard to admit that when I used to be so independent. I think I delude myself that I still am Miss Independent, denial is a wonderful magical thing. But times like this reality jumps up and bites me.

But it's not just his absence that brings on the stress. It's also the fact that the responsibility then falls to my children. A burden they shouldn't have to shoulder. Because I can't just go along as Mum, I am also the person who needs someone to help me up or keep watch or all the other things that have to occur when you have a chronic illness that is unpredictable and of late, more temperamental. They have to tailor their needs and wants around my crappy health and I hate that. My youngest is like a mother hen patting my hand and asking me if I need a drink. My eldest is stoic and practical, driving me up to the front door so I don't have to walk miles from the car park and telling me it doesn't matter that we have to leave early because I'm going downhill fast. They are good kids. I just wish things could be different for them.

This time yesterday I was getting ready, pausing only to throw up repeatedly. I'd tried sleeping, more salt, more water, more meds all with no success. But I pushed through and we got there. I could barely eat and spent 1/2 the time in the loo, but at least I was there. We even managed a family photo. But I can't say it wasn't stressful or that today I have been able to function. I am glad I managed to get there and stay for as long as I did. I know people talk of mind over matter and that's true in a sense. I pushed myself because I wanted to be there for my son. I don't regret the effort for a minute. But it was hard. Hard in ways that unless you've been there it's impossible to truly appreciate.

Half way through the presentations I could feel the downward slide. Anyone with Dysautonomia will know what I'm talking about. That moment when there's a perceivable change in your body and you know it's going to get messy. Sitting up so long in a noisy banquet room is exhausting. It goes against all your body's natural preferences. Being upright so long is counter-intuitive to a body that has trouble getting the blood adequately up to your brain on your best day. There is a running joke that we are allergic to gravity but in a sense it is true. Our bodies can't cope with with being upright. Standing is anathema and sitting nearly as bad for me at the moment. Trying to sit and talk and remain coherent is damn near impossible.

Since becoming ill I've had a slowly declining tolerance for stimulation, be it noise, flashing lights, or just the natural hectic nature of a room filled with a couple of hundred people. It's overwhelming for the senses and simply exhausting, never a good combination and leads to an escalation in symptoms 99% of the time. I remember when I was working in Traumatic Brain Injury (TBI) and we would limit the number of visitors a patient could have or how communication would take place so as to not overwhelm them. I feel like now I need to set similar limits for myself. I simply can't screen out all the background noise and movement to focus on a conversation or even pour myself a drink. It's just too much.

About half way through the presentations I was looking at the world through my own personal sparkly lights and slowly rising head pressure. I could feel the muscles in my face starting to lose coordination, that great time where you sit there going in and out, trying to work the muscles and knowing that you are losing feeling, along with the battle. I know I looked bad because the usual round of "Are you alright?" started. I know we bang on about having an invisible illness, but at times like that it's hard to hide what happens. It becomes all too visible.

We left early. After the last presentation. I feel bad that we couldn't stay longer, though I know both of my boys understand. And woke this afternoon, to find I was still wearing one earring and still had my make up on. I'm exhausted beyond words. But...

...I am thankful for many things. Thankful that I made it to my son's dinner last night. That he and his brother looked after me with no fuss. That I didn't face plant on the table despite thinking I would at any minute. That our friends at the table treated me like a normal person rather than quizzing me about my health. That even today I have the luxury of recovering in bed and not moving because my eldest is picking up his brother from school. And that the ladies of the Oz/NZ Dysautonomia group willed me their luck and strength to make it through last night.

As my wise friend Claire said,

" It may not sound like much to a lot of people but that sure is a lot of great things to thankful for".

Michelle :)

This hasn't really got much to do with this post other than I have been listening to a lot of Angus & Julia Stone of late and I love this song.


  1. So glad you were able to make it to the presentations. Your life of struggle is straight from my life, it seems, complete with understanding hubby and children (even though I know it can be frustrating for them). My hubs and I have those same signals and I'm so thankful that he is so intune to them. Here's to hoping you get a reprieve soon. I too need a designated sick day from being sick:)

  2. Be proud of yourself for the effort you made, I'm sure your son is. Best wishes.

  3. You are very brave and your sons are excellent kids.


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