Feel the fear. Say it anyway.

Some stories have to be shared, no matter how scared it makes you feel.

I’m literally shaking at the thought of posting this, firstly because I’m unsure of the reaction I’ll get and secondly because it’s so important to me to raise awareness for this disease that I have suffered from for the past 4 years.

To read the rest of Rachael’s story: follow this link…

 

Feel the fear and say it anyway.

This is Rachael’s story.

My daughter’s story.

IBD, ostomy, colectomy

One step beyond

I ran 5k three days ago. For the first time in many weeks I found enough time and energy, on the same day, to actually return to the gym. One step at a time, I ran 5k.

I thought I’d be struggling far more than I did, especially as it seems that I’m carrying around one or two more bags of sugar than last time I was there. Never mind.

I’m so tired that a good night’s sleep seems to make it worse, ramming home even more just how long all this has been going on.

Perhaps it’s time to call it a day; package everything up and rename it as the Past.

Perhaps it’s time to begin the future.

Another chapter. A different phase of the story I tell myself.

Life from another perspective.

I hope it involves sleep.

Anxiety

That’s not random
© Tony Burkinshaw 2013

Ten days later

You might remember the mill. We’ve been through it often enough. The rollercoaster duly threw in its ups and downs. The screams echo inside and it seems like it’ll never end. One long nightmare ride that can’t be real. An end that never comes into sight.

It takes an age to progress. The future is so far off that time distorts its blanket and wraps eternity around each day. The team is shorthanded. There aren’t enough skills to go around. National policy trumps clinical discretion.

And then the future arrives.

With enough challenging of the accepted norm, we find the one surgeon who believes his own judgment matters. He stands up & gets counted. We count on him.

A long day and five hours pass.

Much sooner than anyone expected, the pain subsides and the healing takes hold.

Much sooner than anyone expected.

She’s home.

Paper Drum © Vinum

Paper Drum
© Vinum

Paper Drum: The EP

Tears and Tantrums

This one might stay with me. I’m not sure if I want to publish how I feel right now, which is a little weird because that means this 100 words a day habit could end up being a journal and that’s something I’ve never understood the point of.

Until now, I guess.

Prognosis has moved three times in the last 24 hours so in terms of rolling with the punches, I’ve given up. This is more about how hard can you get hit and still get up again.

And again.

In large part the determination comes because I have a choice. It isn’t actually happening to me, it’s happening to Rachael. I’m just playing a supporting role.

Sometimes the cracks appear and it’s time for tears and tantrums.

Sometimes they’re not cracks at all and it’s time to let the emotions out to play until the pent up pressure is released.

Yet again, the final answer is surgery next week.
Or perhaps not.

Ah well. Publish and be damned.

what's down there... © Tony Burkinshaw 2012

what’s down there…
© Tony Burkinshaw 2012

Coughs and sneezes

I’ve been fighting a cold for 3 days and now that it’s at its peak, the central-heating’s packed up. Typical.
According to theory, this is an opportunity.

Really?

Difficulties are easy to find. My immediate challenge? I have to keep away from my hospitalised daughter. Heavily immunosuppressed, a cold ridden parent does not a welcome visitor make. Tough but there you are. Gill’s having to take it all on. Again.

What’s love got to do with it? Every damn thing.

Anyway in the work/cold balance of the last few days, I decided to let the slight-edge habits drift. And to keep doubling them up so that I would be on back track as soon as practicable.
It could have been the start of a long-term slide but in accepting it as my decision, the responsibility stays firmly in my own backyard and I keep control.

As it turns out, a bad cold (trust me, it’s pretty nasty) is an opportunity to practice. It provides essential feedback. An opportunity to find out whether I’m at least a little serious about my intention to be in charge of my own fate.
To accept the risk that I might fail despite my best efforts.
To take the risk that I might succeed even though I don’t know what success looks like yet.

And the upshot of all this?
Well, to paraphrase a good book:

Feel the Sneeze…
And do it anyway.

It isn't easy © Tony Burkinshaw 2013

It isn’t easy
© Tony Burkinshaw 2013

…and the plumber turned up in good order. We have heat.

Plan? What plan?

I love it when new learnings lend themselves to practical issues. (Note the nominalisation, a concept my spell check still struggles with).

Complex therapy took place today.

Not the event itself, rather the immense internal barriers to a meaningful reframe. So with new found skills in hand, a neat segway into gestalt flowed seamlessly into words being spoken and forgiveness being freely offered and accepted.

It was really interesting to watch the therapy unfold as it followed apparently carefully planned off-the-cuff statements linking directly into the brains unconscious algorithms. When the time for resolution, the barriers simply had no option but to collapse and allow the reframe in.

Sunshine and light.
Calm where there used to be broken chaos and hate.

I love it when a plan comes together.

And it wasn’t even my plan?

pain relief mp3

Somewhat Zen
© Tony Burkinshaw 2014

It’s about Time

Time to look forwards.

There’s a new Quest course on its way and in the way of Quest, graduates assist the new students. It’s too good an opportunity to miss. The assistants on my course were fantastic and I’m still in touch with most of them. They were an important part of the experience.

Time to pass on what I’ve learned.

It’s also time to refresh what I thought I’d picked up originally because as these things go, you generally miss things first time around. It’s why I like watching films more than once. Subsequent viewings are when you pick up the intricacies of the complex plot. Or the finesse in the special effects.

So even though I’m now the proud possessor of a certificate that proclaims me to be a master wizard, there’s always more to learn.

Time for new beginnings.

Time for fun.

It's a matter of perspective © Tony Burkinshaw 2012

It’s a matter of perspective
© Tony Burkinshaw 2012

The Choice Option

There’s a glimpse of sunshine. Perhaps two.

Option 1:

Here we go again. Dare to hope or hunker down and wait for the punch that’s always turned up so far.
Every time it’s improved, it’s turned around and slapped us.
Hard.
It’s beyond us. Out of our control.
Life just keeps on happening to us.

Option 2:

Every time it felt like we can’t carry on, there’s been hope. Something has come along and lifted our spirits. A new fact. Uncovering a way of looking at the problem, which gives pause for thought. Get’s the medics thinking again. Trying something new. Adjusting the balance.
Whatever comes along, we’re up to it.
We have to be.
No. It’s more than that.
We choose to be.

External Locus of Control vs. Internal Locus of Control

Simple.
Not easy.

I’ve made my choice.

Enough said.

It's a delicate balance © Tony Burkinshaw 2013

It’s a delicate balance
© Tony Burkinshaw 2013

The Certificated Wizard

Maybe the tides have turned. For the first time in many weeks, we had a day in the same city. The hospital visit was only 15 minutes away and we even had the space to walk into town for a well-earned coffee/Panini. The sun was shining.

Not only that, since 9.30 there’s only been us in the house. We might even make it to the pub this evening.

On a different note, I’m considering a re-think on the Slight Edge habits. It’s come to my attention that I’m not feeding my Humour & Playfulness key character strength sufficiently well.

Jan, god love her, sent my Master Practitioner Certificate with a fun twist playing on my daughter’s conviction that I’m now officially a wizard. It exercised my playful instincts as I sadly realised that I’m not the kind of therapist who’d have a Wizard Certificate on his wall. Not in this universe anyway.

With the limits of playfulness duly stretched and tested, it occurs to me that I’ve stopped listening to music. So I’m writing this post listening to Uptown Special at reasonable volume on the Mac. I forget how much difference it can make.

So if I decide to switch one of my Slight Edge habits for listening to out-loud music, which should it be? In no particular order, here they are. One of them has to make room:

  • Read 10 pages of something interesting
  • Meditate for at least 10 minutes
  • Exercise: raised heart rate for at least 5 minutes (I’m starting from a low base again)
  • Write 100 words or more
  • Keep a list of the day’s positive events

Which one gets shouldered out of the way so I can get to the front once more?

My life needs more noise.

stress anxiety depression

just waiting for the Pizza
© Tony Burkinshaw 2013

Gill just came up and closed the door…

Yoda, Tears & Time Travel

Role reversal is always interesting but when it’s an AD/K reversal it seems that the K demands more than one tear. It was time for hugs and more than one tissue.

Unheard of.

Yet again the brief respite was all too brief and the improvement turned out to be illusory. It’s hospital time again. At least this time we were able to use the respite to move her across country and she’s now only 15 minutes away. Two and a half hours each way had taken its toll.

In theory it was simply a visit to reconnect with the old Consultant once more to ensure continuity of care. They took one look and it was back to A&E. Yet another episode of Emergency Ward 10, for those who are old enough to remember.

On the other hand, I’ve made a discovery. We’ve been talking at cross purposes for a little while and it’s been really frustrating. I should know better and ought to have been able to think my way past it. In itself that was a signal. If I couldn’t think past it, it was more than likely an emotional barrier.

I even found myself recognising the limiting belief (well you’d hope so, I just got my Master Practitioner qualification, so in theory I have some skill in this arena).

I discovered myself thinking that now I had uncovered the belief, I possessed sufficient skill to try to find the way past it.

That got me going. Try.

Yoda turned up again, as he does when someone says Try.

Try not.

Do. Or Do Not.

There is no Try.

So armed with Jedi wisdom, I let the reframe in.

I have sufficient skill to find the way past it.

I haven’t yet worked out the how but given that I’m good at Age Progression and mental time-travel I know that when the time comes, as come it surely will, I’ll be standing exactly where I need to be.

I'm listening... © Tony Burkinshaw 2012

I’m listening…
© Tony Burkinshaw 2012