Wednesday 20 May 2015

Getting through

Just get through it.

That's what I thought on Wednesday. And what I thought last week. And yesterday. And likely next week. Just get through it. Expect the payback. The recovery. The preparation for the next step. The next event. The next appointment. Get through that. Then payback, then....

I'm stuck in the loop.

The calm time. The inbetween time. The time where I can just sit and breathe. The time where I can process things. Or fart around doing nothing. Or everything. Doing something I want. Without worry that it'll be too much and I wont be recovered and prepared enough for the next event. That time is missing.

Chronic illness is a fine balancing act. And I'm fumbling.

My recovery time is longer. My preparations often interrupted by flares of symptoms that seemingly have no rhyme or reason.

A few of my doctors have mentioned that I have the crappy honour of becoming a complex chronic patient where my body is so off kilter it just keeps throwing things in for kicks. Those kicks aren't huge but enough to make life that little bit harder. That drain just a little bit more of my already reduced energy. The pain that radiates from my pacemaker pocket and wakes me, stabbing into my chest and down into my breast one of the latest. A rare complication. More common in women but rare all the same. Like my surel nerve biopsy, the nerves that were cut so my heart could keep beating, howl their displeasure and rage against my body. Something else to put in the "live with it" pile. Pain everlasting, poorly managed, ever increasing, and ever exhausting.

The concern face as my heart throws up a new problem. An unexpected problem. More tests. More fiddling. More uncertainty.

And so the breathing space that was once there between events and flares is merging. My resources fewer. My prioritising even more ruthless. There are things that must be done and the rest doesn't even get consideration.

The emails pile up, just like the messages.

Phone calls not returned.

Appointments are scrutinised and prioritised.

Which body part is most in need of tending?

Which appointment will give me the most bang for my buck?

And outside that, life.

Children, husbands, families and households.

The needs that cannot be abdicated. The needs that trump my own. The needs that I am also fumbling.

In the midst of it all an appointment that is easy. So easy it doesn't register until after. When I'm sitting in the car and realise that it was both fruitful and pleasant. There was no antagonism. No fight to get what I needed. I sat with a collection of referrals, for specialists and tests. Break through meds, and understanding. I was too busy getting through, so used to expecting a fight, that I fail to register the gift that is a doctor who gets it.

I sometimes wonder what it must be like for a doctor to be landed a patient like me. Complex and weird. Only there when the going gets bad. Only there when the problem is a mess. So busy getting through it that I wait too long. So busy getting through it, so used to expecting to beg and argue, I didn't give her the thanks she deserved.

I need to focus again. To not just get through. To move beyond ruthless existence. I think I might use up some of my precious resources for a quick note of thanks. A few words to say thank you, I noticed, it meant something. It was an easy spot in the midst of hard.

And then I'll start prioritising again. Shave off this need, cut off that. Distill it all and keep saying No, until it all becomes manageable again.

Because it will. It always does. And I'll rejoice once more in the breath-filled moments.


I've been listening to a lot of Sara Watkins of late and this song in particular. Short and simple with perfect lyrics. (I've written about it before here  when I needed a reminder that I always drag myself back.)


  1. I'm sorry there are more complications. I'm sorry life is so tough. It's a shame that there is so little respite for you. You are an amazing woman and I'm glad you keep writing in this space, keep sharing what it's like, because your voice is important and needs to be heard. Big gentle hugs to you.

  2. ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥
    ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥ ♥..•°•..♥..•°•..♥

  3. Thanks Dorothy. I am hopeful that things will pick up again, just sometimes it seems there is no let up at all and it all just merges. And I'm pretty over it at the moment. The writing keeps me centred. If I can write it out then I can process it, drop it and move on. I am grateful for that aspect of blogging. Plus illness isn't all positive and inspiration, there's a lot of crap mixed in with it all, as I'm sure you're well aware. Honesty means sharing it warts and all xx

  4. Just wanted to say Hi, just found your blog and was diagnosed a few months ago after getting the "all in your head" runaround. (complete with hospital stays and ambulances)

    While my bob isn't as bad as yours, I'm still going through the regular doctors appointments (spending a fortune), the stress of having an illness that changes, the uncertainty, the anger at having lost my former life, the lack of understanding that "yes, I'm still unwell and no, I dont know when it will be fixed, and neither to the doctors".

    Currently on the lookout for a gastroenterologist that can try and help me work out whats going wrong with my digestive system - feel like I'm being squashed and can't breathe.

    1. It's a hard road Cookies. A lot of it is the issues that go around the illness itself and that can be hard to navigate especially at the start. Finding a good GI can be hard so I wish you luck. Gastroparesis is a really common comorbidity with the Dysautonomias, as are a wide range of other gastro issues and food intolerances and allergies. Can make life really hard. I'll keep my fingers crossed for you. xx


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