Thursday, 10 July 2014

The long and winding road to Acceptance.

(If only the road to acceptance was this straight. 
And the bumps in the road as small as those tiny corrugations.)

I've had a few people message me lately asking how I came to accept being ill and all it brings. I've written about it before, but long-term readers will know that acceptance and the way I react to being ill isn't really a steady path. It's not like a twelve step program. It's not clear and straight. It is punctuated with ups and downs. Sucker punches and dark valleys. And moments of shining light and joy. Living with chronic illness is living with constantly moving goal posts. Just when you think you've got it sorted, WHOOMPH, it pulls the rug out from under you and you have to claw your way back. Acceptance walks hand-in-hand with a special form of grief that only those with chronic illness understand. And if I had to say one thing about acceptance, it's that there are no easy answers or short cuts.

I am better at accepting that illness is part of my life 95% of the time. But every now and then something arises to smack me back down to the ground, often sticking the boot in for good measure. I can tell myself or others to just be positive, or whip out an inspirational quote or three, but sometimes that just won't cut it.

The last six months have been a rough. Healthwise I've had more setbacks/exacerbations than I can count and more frustration and disappointment than I really wish to acknowledge. In December when I realised I could no longer move my toes on one foot, it was the final straw. And I ended up in my bedroom sobbing into my pillow. With illness there are points you reach where it is just too much, and this was one of those. At those times the only thing left is a big black hole that feels like it will never be filled. And the only thing that stops the tears is when you are simply so exhausted from the crying you fall asleep. Since then the exacerbation has meant that physically I've gone backwards and the toll emotionally and mentally has been pretty big. I'm slowly digging myself out of it now, but I've cried and been angry and wanted to hide from the world. I have let important opportunities slip through my fingers because I simply couldn't face them, great as they were, and deal with everything else that was going on. I let everything good and bad go by the wayside whilst I used my non-existent reserves to keep a single finger in the real world. There are still tears. And anger. And cursing of the universe. Thankfully there are more good moments now. But it's still tough and requires a lot of my reserves to keep actively seeking and embracing the better times when they occur.

Does that mean I don't accept being sick?

No. Acceptance doesn't mean I face those times with pluck and perkiness. But I accept illness is part of my life nonetheless.

So how do I reconcile those moments of sadness or anger with acceptance?

With a little self-kindness and a worldview that embraces more than the black and white we are often sold.

It means that it gets tough at times. The bumps in the road are sometimes the size of mountains. Everest-sized mountains. I can accept that I am ill and curse the universe at the same time. Because life isn't a pithy inspirational meme. It isn't clear or clean or perfect. Acceptance doesn't means things are all rosy. It doesn't mean that you don't get sad, or frustrated, or angry. It also doesn't mean that you are giving up or giving in. I'm not zen 24/7 and if I was I would probably need to be studied, or medicated, or a little of both.

For me acceptance is many things. It was getting to a point where I recognised I was wasting every shred of energy fighting and searching. So much so that I wasn't living life any more. I was fighting and I kept getting worse. And I was miserable because everything revolved around a fight I was so clearly losing. There was no balance in my life. Just a bucket load of burden I'd created for myself. That realisation was my first step.

I did start to actively look for joy in my world. And sometimes that has meant forcing it. I would make myself sit out in the garden when I least wanted. I would turn off my woe-is-me music and put on some belting rock tune. I would make myself simply stop. Illness can be bleak and scary at times. Its easy to become overwhelmed. And to both feed that belief and see everything through that filter. I started making sure I found something good in every day. Warm toast in bed, pretty flowers on a weed, a pretty water glass. Little things. Because little is doable. Really seeing and embracing those moments doesn't directly lead to acceptance, but it helps you refocus so you're in a place where you can start the process.

Acceptance doesn't mean ignoring illness (although I may sometimes put my blinkers on and pretend because that's just what you need some days). It means that I do what I have to do to manage my illness. I take my pills and put on my compression stockings. I pace myself and use mobility aids. I get my pacemaker checked and do my exercises. And then I get on with life. Illness is integrated into my life rather than being the central and defining feature. I give it a place of my choosing, rather than trying to erase it completely.

Acceptance isn't an instant process. It also isn't a perfect process. So often we are made to feel that we should find acceptance, fight the good fight, be a perky positive emblem to which all can aspire. But those are burdens we place upon ourselves. We let ourselves believe that everyone else has it all together. When nothing could be further from the truth. We expect we should be the perfect patient. And perfection has no place in illness. How could we ever expect to reach acceptance if we are continuously using a lie as a measuring stick.

I don't necessarily accept that I am ill. But I do accept that illness is a part of my life. It's a fine distinction, but an important one. It's more about putting illness in it's place rather than letting it define me. I live with illness, not despite illness. And in doing so a lot of the power I imbued it with was removed. I made a decision to change my approach. I also decided to give myself some slack.

I accept that there will be times that it is harder than normal. I accept that I will get it wrong. That I will get disheartened and cry, but I won't beat myself up when it happens. Illness is hard. Accepting that it is part of life doesn't mean that I always manage it well. It doesn't mean that I wont cock it up completely some days, or weeks or months. I try and give myself some compassion. Because no one gets it right all the time. 

I am a big fan of getting support, especially in the form of a mental health practitioner. A psychologist or counsellor who specialises in medical issues and chronic illnesses can help you navigate the path, learning the tools to make life more bearable and the difficult times more manageable. We all need to create a personal arsenal to deal with whatever chronic illness we are dealing with. Just like we take meds to help with blood pressure or heart rate, we can use the skills of a psychologist to help with the complex emotions that arrive with illness.

The world of illness is punctuated with words like should and myths of the perfect patient. We are made to feel like there is an ideal to which we should all aspire and if we don't get there we have failed. But life isn't like that. No one has it together all the time. And no one always gets it right. And that's okay. Becoming chronically ill can be incredibly challenging. And learning to accept that illness may be a part of your life for a long time, or in some cases forever, is a continuing process. 

Acceptance doesn't mean perfection. 
Acceptance doesn't mean that you are always peaceful and happy. 
Acceptance isn't static. 
But.... 
Acceptance is about being kind to yourself.

Take away all the shoulds and myths of perfection 
Be kind to yourself.
And acceptance becomes far more achievable.  

Michelle

I break tradition, sometimes my tries, are outside the lines
We've been conditioned to not make mistakes, but I can't live that way

Staring at the blank page before you
Open up the dirty window
Let the sun illuminate the words that you could not find
Unwritten, Natasha Bedingfield



Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.

13 comments:

  1. Just what I needed to be reminded of, you are a gem Michelle :-)

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    1. Aw thanks Kate. Glad I could help xx

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  2. Very interesting view! Glad you don't want to be Mary Sunshine 24/7 that's not normal for anyone

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    1. Thanks Jess. I don't think it's normal either, but it seems to be one of the main messages we are sent these days. :)

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  3. I love that song and Natasha Beddingfield. The words are very appropriate.

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    1. It is a great song Melissa and works with a whole range of circumstances. :)

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  4. Michelle I admire you so much. I love how you can write and convey the thoughts i have too.
    Thank you.

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    1. Thanks Carly. I hope you are starting to feel on the mend after the last week. Yay to getting out for a few hours yesterday xx

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  5. I have often wondered what a so called good day is like for you. I remember reading about Rachel at cranberry tea time describing a day of hers. For me it was very liberating, because her new normal was like my life, resting, doing, resting, meds, missing out things because of vertigo or whatever symptoms.

    Yes there are peaks and dark days... New body symptoms are hard... Like when your toes stopped working... Hard to adapt physically... Mentally it can zap me to pretty dark places..

    I still have no idea why people like you... Why vulnerability, honesty are uplifting... I guess it overcomes our worst fears, that our value is some how diminished thru chronic illness. NOT!!!!


    It seems dysautonomic

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    1. A good day now is very different to a good day even a year or two ago. If I can do a few things I want, that can be a good day. Sometimes it's spots in the day that are good. Eg today I showered after being unable for a few days, but am now back to being stuck in bed feeling crap.

      For me I think reading other blogs normalises our experience and in normalising we can see that value inherent in all of us. Not feeling alone, or weird or weak or whatever word you want to use, is quite liberating. Sometimes it's the comments on here or on FB or Twitter that give me the boost to laugh or breathe or just go with it. So for me it's a two way street and a great community.

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  6. My iPad froze... It seems many dysautonomic people prior to illness were high achieving, energetic, movers and shakers in helping professions and analytical...

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    1. It does seem to be a common theme, monshonday. Not sure if that also makes us more likely to persist in finding answers and being more open to discussing it. May be many out there not so confident to voice their experience.

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  7. I really needed to read this tonight. Thank you so much for this post. I have come to this blog for solace and support more times than I can count. The road to acceptance is a wonky one indeed. Just when we think we have things figured out our bodies throw us another curve ball.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx