The Fog

 

Posts have been tough to write lately. I am not in the mood to re-start my telling of Kate’s Story. I am dealing with enough ‘of the moment’ medical drama. I also don’t feel verbose let alone coherent and it is hard to be wordy when one is very tired.  The stress, worry and lack of sleep of the past few weeks…months has put me into a fog. The stretches between hospital and home seem to meld with one another as Kate has never really recovered to her ‘baseline’ since September.

The Fog is hard to describe, it almost feels like those early weeks of new parenthood with your baby at home and absolutely no sleep. My fog also has the stress and worry about Kate, and the result is an almost comically absent short-term memory, moodiness, and a lack of consistent clear thinking in my everyday life. It’s a horrible feeling, heavy-lidded eyes, sallow skin, unsettled stomach, inability to focus or attend to the things that I should be focussing on to keep my family’s life running smoothly.

The fog also affects my social filter. It is harder to return phone calls and email, or to have conversations, and to connect to the people in my life who I want to have conversations with. I find that things that should be important and grab my attention don’t. I am annoyed by the mundane. It’s only the immediate and the absolutely important that I can attend to, and even then I need to be sure I check myself with how I am receiving and sending information.

Even my running, when I can get to it – what I rely on for me, to reenergize me to keep me going mentally and physically – isn’t cutting through the fog. And that is hard.  My endorphins are my drug of choice for coping – all natural and organic – and while they are helping me cope, I am taking my good sweet time to recover and my energy and desire to run is low.

I know how to address the fog. I am an intelligent adult who can lay out a plan which includes proper nutrition, adequate hydration, good sleep, minimizing stress, reducing tasks for the short-term – but I feel like I need a caregiver for myself to come and implement the plan. It feels exhausting to nurse myself back to a state where I feel poised. I am so tired, that is hard to do the things that are good and right for me to get me back on track.  (Drink a glass of water?  It just seems to take so much energy to do it). I wonder if someone can be hired to coach you back (I think that is called a therapist 🙂  Or maybe it’s a ‘mom nanny’ I need. Someone to look after my needs.  I imagine many – maybe all – caregivers of chronically unwell children feel this way often. What do they call this state?  What do they do to feel strong and ready for the challenge again?

What I fear most about circling in the fog is that I won’t adequately recover my reserves in time for Kate’s next episode. They are frequent and aggressive and the in-between recovery time is also very difficult. A tired, irritable, ataxic Kate is hard to care for when the caregiver is still trying to recover herself, and I dread having to return to CHEO already feeling exhausted.

I dream of deserted tropical islands where there is no fog, only beautiful blue skies and sunshine. Where I can laze on a beach wriggling my toes in the sand, or lazily stroll along the shoreline with not a care in the world.

I imagine being there for a least a month. I clearly need a better plan.

This morning I ran with the girls, trying to get back to the things that I know work for me. I walked out the door, and guess what? It was the foggiest morning I have ever seen.  How ironic.

 

Julie

 

9 Comments

  1. Julie, one day you will look back on these days of Kate’s illness and this fog. You will wonder, “how on earth did I do this, how did I manage to get up each day?” Be kind to yourself – you are in a huge battle for life and you are still winning. Good luck with the fog tomorrow.

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  2. Irony! For sure.
    I get it on so many levels. It really is life one moment at a time. Have faith! You will regain your energy in the between times, as long as you use the time for regain instead of straining to fit back into the ‘normal’ routine too quickly. (( hugs))

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  3. I think sleep deprivation is the hardest thing to cope with — it totally affects how you feel physically and mentally. And I don’t think you can just bounce back from these acute episodes Kate has — especially because you are still involved in heavy caregiving. It’s not like the episode ends and you have a break. And there’s all of the emotion to deal with. I can’t remember if you’ve told us about respite. Do you have respite workers who spend time with Kate? I realize that may be really difficult because she has such unstable medical needs. But I think without respite, you can’t repair. xo

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  4. It’s like the mind is smart enough to know that some buffering is required to cope, and the outside world needs to have its edges softened. There is so much emotion and fear to process every day, not to mention the physical demands and limitations, that a foggy state of mind is a necessary outpost from time to time. While it swirls around you, be gentle with yourself.

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  5. Hi Julie,
    I completely know what you have gone through in my similar yet different experiences, I myself have a complex child, who has an extremely rare chromosomal disorder. She is just writting her story as she goes along day by day. I love how you put exactly what I have gone through into words.
    That being said, I would love to offer you some tools to help with regaining your energy and mental clarity back. I happen to be an energy coach, and my focus is coaching moms who find themselves too depleted to carry out daily tasks and find themselves in the “FOG”, with no energy to get out. If you are inerested or have any questions email me at erinvennard@gmail.com

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