Monday 31 March 2014

Falling down the rabbit hole.

The last two, three, four months have been hard. My body has decided to do one of those fancy steps down, on the stepwise progression thingy. Or more, screaming, flailing leap, than step. I've tried not to let it affect me but it has. Denial is hard to maintain when you can't do a poo without face-planting on the tiles and being dragged limp and slurring to your bed. Or even better when no one is home and you're lying on the tiles of your bathroom, pants only just covering your sagging butt cheeks and your ever faithful canine companion comes, sniffs your forehead, and then sits promptly on your head. Or when your normally stoic other half keeps coming in every five minutes worriedly touching your forehead. Or you go to walk to the kitchen and end up on your hands and knees behind the couch. Or....

I can walk less. I can stand less. I have less control of my body temperature. And I've started losing weight again. But I have more syncope. And more pain, be it my feet, my stomach, or my head. None of my tricks are working. And as my cardio pointed out last week, I'm out of medical options.

And all of it is beyond exhausting.

I feel like the months have gone past and I missed them. I mean I know I was there. It's not like I have a Delorean or anything. Although that'd be mighty cool if I did. It's just been a fog of illness. A fog that has eclipsed the wider world. It's been one of those times where dealing with my body takes every shred of energy that I have and everything else is shut out into a half-arsed, half done, package of incompetence. Be it blogging, replying to emails, unpacking at our new house, or breathing, it's all been a half-arsed effort.

I find myself picking little bits of random jobs in the vain hope that I'll finish one. I break down the tasks into a hodge-podge of parts that I convince myself are logical. But instead I end up picking such random bits that not even those end up finished. I then of course beat myself up for not doing the important tasks that keep piling up. I want to paint, but feel guilty because I know there are emails to answer. I want to garden but I know there's house sorting that needs to be done. I haven't even allowed myself to catch up on The Walking Dead because I know there are other MUST DO things that are simply falling through the cracks. Not that that prompts me to action. I am out of spoons. Out of energy. Mental and physical. Simply because every last bit of resilience and energy is dealing with the most basic aspects of survival eg staying upright, or laying on tiles and repeating my new mantra "I do not need to go to the ER. I do not need to go to the ER. I do not need to go to the ER".

I've tried to be normal.

Head out for a coffee. Come home head between my legs, be dragged into the house to pass out on the bed. I've been out looking at potential new houses, only to return home a green-tinged blancmange, or simply cancelling at the last moment. I had a lovely visit with my Uncle and Auntie book-ended, by a body intent on expelling everything I have eaten in the last year, out of either of two burning orrifi, face-planting on the tiles in my bathroom, and coma sleep. I saw my cardio in the city last week and am still paying for it today, almost a week later. I have to head back to the city for more neurological tests in less than four days and I have no idea how I am going to manage.

We planned for tea out with friends at an actual restaurant. I prepared for days in advance. But my body said no. I'm not sure if it was the rapid revisit of the plain poached egg I'd attempted earlier in the day or the chunk of perfectly poached egg white that came out of my nose when I sneezed an hour later, that was the clincher. But I was made aware of the fact that I was not well enough to head out into society, or into my lounge. Luckily our friends were willing to do plan B of take away here at home where I could crawl into a ball on the lounge. They even put up with our insane dog who apparently had a snort or 12 of coke before they came. Good people.

But what it comes down to is....

....I'm missing life.

My life.

It's just disjointed pieces of late.

Finding a spot to focus on. A task that I can actually complete in it's entirety seems impossible. Everything is sitting not done, half done, or forgotten in my sieve of a brain.

I waste energy on putting up the good front. I'm coping. It's all good. I can still laugh at it all. Life. I'm playing the part, not really living it. The truth is my body and I aren't doing all that well. Coping with a big deterioration is hard. I should say that out loud ten times. Scrawl it across my mirror and write it on my arms. Because it's the truth. I tell others to that they should speak the truth of illness, the ups and downs, and here am I still hanging stubbornly onto my pride. That message ingrained from my childhood that says "suck it up and be strong, don't be weak." The message I convince myself that I've conquered, until I realise that it's snuck back in and taken up residence once more in that hyper-critical part of my mind that likes to whisper sweet nothings in my ear.

Somehow I lost the ability to give myself the permission for space. Permission to breathe. Somehow I have forgotten that it's okay to say I'm really having a tough time with this crap. That sometimes it gets scary and sad. That I'm tired of being strong. All. The. Damn. Time. And that when you only have a thimble full of energy it's okay to use that thimble for yourself.

Life may be piecemeal for a while yet. But hopefully I'll get better at picking the pieces that are more healing.

I may be falling down the rabbit hole, but even Alice found her way home.



  1. It's so easy to fall back into trying to be strong all the time. I think it's a combination of pride and denial - we start off with "today is a bad day but tomorrow will be fine" and it's easy to be a bit proud and a bit strong for one day. And then the next time we look up we realise it's 5 months later and "tomorrow will be fine" has become a clearly inaccurate assumption, but we never had the emotional space and spoons to think about it.

    Don't beat yourself up for it, is what I mean. It just means you're a human being who (like every human being) is not perfect - which I suspect you already knew :)

    I'm having a crappy bad time too, both physically and emotionally. My heart and empathy go out to you.

    1. So sorry that you are having a similar time Ricky. You are right about "tomorrow I'll be fine" being an inaccurate assumption. I definitely haven't dealt with this decline and that in and of itself, aside from being physically sicker, means I am beating myself up for not dealing properly. So much has just slide by the wayside the last 4 months, important and not so important stuff. Just tired and not knowing where to start with it all. Big hugs to you too xx

  2. As an 18 year veteran of severe chronic illness I so relate to this. Let me give you a bit of veteran advice, not that I'm not still trying to figure out the coping thing myself but, go ahead and catch up on your show. I know you have more important things that need to get done but if you keep punishing/denying yourself for being sick you'll get into a headspace where you won't be able to accomplish anything anyway. Sending good thoughts for better times your way!

    1. Argh. My reply disappeared. Try again. I think you're right Jan I have been punishing myself for being sick. You'd think after 8yrs I'd handle it better. But no that doesn't seem to be the case. If I'm honest the deterioration in my health the last few months has made me anxious about what lies ahead. Until I deal with that I don't think the other bits will fall into place. xx

  3. Watching Walking Dead is your top priority. TOP PRIORITY!

    I suggest a mattress on the floor in front of the loo to soften the impact ;)

    Love your face off.

  4. hey michelle

    snap with the crap. oh those little jobs that never get done, they are a pain. i have a little technique. i write a short list each week, really the list is for me to feel useful. 5 items, sometimes more, sometimes less. if i don't achieve them all, never mind they can roll over to next week, or be erased.

    other times i give myself a week off. i know that sounds funny, just a week of doing small things that i enjoy, without the pressure of the sensible jobs. plenty of rest too, which i know that seems all we do, yet without distractions help sometimes. x

    1. Thanks Em. I do write lists. Though I have been losing those. Just so disorganised of late. Must be more focused on that aspect so I can break things down to be manageable. I think because we've had so much on in real life, the move, leaving my eldest back in the city for uni, losing Thor, etc has meant that there's not much time for processing anything. Hopefully as that side of things slows down I can find a bit of equilibrium. xx

  5. Crib mattress or patio chair cushion (hey you can have someone ELSE bleach it) or 6 in the bathroom! Or just let the laundry pile up!

    Life is changing, normal is changing. Summer is coming on here & it's only going to get worse for me. I hope winter's chill (however subtle) aids you a bit. (but my friend who's child has dysautonomia........yeah I'll spare you)

    But life keeps changing, anyone who doesn't want to adapt or even admit something is wrong can keep themselves out of my life. I'm terribly glad (& a touch jealous) that you & your beloved still have good people around. BONUS that they accommodate you!

    Hold Fast, Winter Is Coming! (p.s. The Walking Dead definitely takes top priority if you can count it as quality time with family not dragging you back to bed)

    1. Thanks Anastasia. I do hope your Summer is kind to you. I am glad that Winter is Coming (and that GoT is also starting!). I do think on the bad days I should put some pillows down in the bathroom. Would make things far more comfortable. Have started a mindfullness program to try and calm the old mind and stop beating myself up for all the things I see as 'failures' on my behalf. Who knows it may work :)

  6. I've got no words Michelle, The way you can still write so eloquently through all of this is quite incredible. I hope you can find your way out somehow. x

    PS Game of Thrones is also starting. Not sure if you have seen it yet but above posters suggestion of mattress near loo is a good one.

    1. Thanks Michelle. Words are about all I have at the moment, though even those are a struggle of late. amazing how much even a small drop in blood pressure can take away your ability to think clearly.

      I am looking forward to GoT. Love that show. :)

  7. Oh Michelle you are the only person who makes me snort with laughter whilst making me sad about how poorly you are at the moment. My favourite line of all time was about your dog snorting cocaine before visitors came! Sounds like my mad house!
    I'm really sorry that things are bad at the moment. Xx

    1. Ha Rachel! She can be a good calm dog most of the time but every now and then she loses the plot and gets so excited. Not so bad in a small dog but quite intimidating in a giant breed. Plus when she gets excited she snorts and blows snot all over everyone. Ugh. xx

  8. Big hug... Your beautiful woman ...


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