Greenhousing ...or having to face one's vulnerability

" ... just to be able to stop and, instead of catastrophizing what might happen, 

to say, "I'm just so grateful, because to feel this vulnerable means I'm alive."

Brené Brown: The power of vulnerability 

'greenhousing'

Last week I underwent minor surgery to remove a Lipoma from my mid back. It had been there for a few years and it had given me a lot of grieve. Most movements with my (left) arm turned quickly into pain in my back. Bad pain. Over the years I had to limit all activities to not get to this point of pain.

For years I had asked doctors to look at it, to remove it. I pleaded with them. Please remove it.

In January 2015 my neurologist took me serious and asked me to come into hospital for a 5 day stay to look at this part of my back, and my whole spine, as I have other issues to.

This happened in June 2015.

But. He was on holidays so someone from his team took over my care. 

It was like I was a completely new patient. Plans for MRI, Heart scan, physio etc were only made on the second day. But for most of the week I sat up in bed. Frustrated, as nothing was happening. What a waste of HSE money. To occupy a bed, with very ill patients on trolleys downstairs. Anyway, My biggest overall goal was to Get That Lump Out!

On the third night, I was woken up at half 9, and was taken to the MRI department. 

On Friday- my last day - I was told that the lump was "just" a lipoma. And in order for it to be looked at I had to be seen by a surgeon .... THROUGH OUTPATIENTS... his blew my mind, as I was IN the hospital. The surgeon or his team were probably walking past my ward every day, and could look at me, and my scan...

And I was given a lecture about 'happy hormones' ie. In other words: The pain is in your head...

I waited for over a year to get an outpatient appointment with the surgeon. I was on a waiting list.

"Yes. We can remove it, but can't guarantee that it will solve your back pain." He was a kind man.

Anyway. I ended up on a new list.

The surgical waiting list.

7th April 2017. I got a call if I can come in and have the lump removed on the 12th April. Sure!

(Help.... be careful what you ask for as it might just happen...)

I got worried about the surgery. But mostly about the anaesthetic. ME and Anesthetic are not greatly compatible.

Yes, I was very nervous.

But the doctors (3) and a nurse, were extremely kind and understanding. They used a non-adrenal-local anaesthetic, as requested. The nurse held my hand and coordinated deep breathing with the moments of excruciating pain.

The lump was much bigger, and deeper than anyone had expected, and not the neath little domed piece of fatty tissue just under the skin, as expected by the medical team. Seeing the extend of this lump, they concluded that it had been there for a while - and was thus harder to remove- that it had a weird shape and that it must have given a lot of pain... YES! But nobody had believed me.

They had great difficulty cutting and pulling it out of my back... It was horrible...

So, roll on one week. Or ten days by now.

The pain was and is bad.

But I am hopeful it will eventually will solve the problems I was having. If I can be patient right now.

Emotionally. It is painful too.

That is where Vulnerability come in : the quality or state of being exposed to the possibility of being attacked or harmed, either physically or emotionally.

Over all these years of living with ME, I had to greatly adapt my way of living. Of how I conduct my activities. Look after myself. Ask of help. Find way to do what I like or need to do. I am pretty good at this (if I may say so myself).

But.

After surgery, I needed soo much more rest.

It turned out I could not use my left arm for anything. Not even having it lie on my desk and use the keyboard of my computer. My arm had to be immobilized.

I had to immobilized.

But did not want to.

I wanted to go out and pull a few weeds from my garden. It makes me happy. Or empty a box with delivery from health food store. I wanted to re-pot the bean seedlings, cut a piece of bread. Go into my studio. Finish the Snapshots book edits.

None.

and when I did it anyway. All gave me grief.

views during 'my greenhousing'

Yesterday I finally gave in. Fully gave in. 

And did Greenhousing. This is not getting my hands dirty in the greenhouse, but putting myself on the bench. To rest.

Wrapped in a blanket. Pot of tea beside me. 

Basking in the goodness of the warmth of the sun.

Hearing the birds.

Watching Sally Cat find a place in the raised flowerbed to have her snooze in.

I did let a friend know that I was feeling pretty miserable.

All I had left in me were tears. There was no need to talk, but sharing my feeling via a text message gave me permission to just be. To be tired. To be in pain. To be sad. To give in to rest. To feel the fear- what if my back does not improve, what if surgery made it worse... 

To allow myself to be vulnerable. To feel those horrible feelings, that nobody wants to deal with.

I thought I had a good knowledge of my body, and my mind. 

But each new challenge requires to yet again visit those feelings of vulnerability. 

Knowing that if I do not delve into those feelings of vulnerability I also would not feel the joy and gratitude in my life.

views during 'my greenhousing'

I feel the better for my day of greenhousing and extended rest.

I learned to be a one handed computer writer. To take out two bits of shopping out of the box at the time. To fold one pair of socks at the time. To not want to go out on the scooter. To leave the weeds enrich my garden in their own ways.

To be.

To let it all be.

To let me be.

Links and further reading

• If you have a little time, I can highly recommend this very entertaining Ted Talk: The Power of Vulnerability by Brené Brown: about our ability to empathize, belong, love. In a poignant, funny talk, she shares a deep insight from her research, one that sent her on a personal quest to know herself as well as to understand humanity.  

Ciara Chapman 'My Chronic Pain Diary'

 'Entry #54 I've recently started meditation' 

Ciara Chapman

Apologies for not turning up on my blog yesterday, (am recovering from small surgery, which turned out to be much bigger than the surgeons had expected...). 

However two wonderfully creative ladies, and Little Wings blog readers had brilliantly timed thoughts about living with illness. I shared Therese Doherty's thoughts on acceptance on my Facebook page yesterday, and the following came from Ciara Chapman, the latest entry of her Chronic Pain Diary

I wish you well for today, and I hand over the reigns to Ciara,  my guest blogger for today:

'Entry #54 I've recently started meditation'
© Ciara Chapman 2017

"My name is Ciara Chapman and I am an illustrator based in Cork city, Ireland. 
I studied Fine Art Printmaking (1999-2002) and Graphic Design (2004-2005) in college so art has always been a big part of my life. 
Things changed for me in a major way in April 2015 when my chronic pain began in the form of long term sciatica and has continued ever since. I am as yet awaiting diagnosis for my medical issues which affect my left side from the neck down. I don't have a clear cut diagnosis so I'm going through a process of elimination to determine the problem. 

I was finding the constant waiting as well as the physiotherapy and the general isolation difficult to cope with so in January 2016 I began illustrating my experiences in the form of a diary titled 'My Chronic Pain Diary '. 
This diary is a combination of the positive and negative aspects of my new way of living. 

I have been following Corinas blog for some time now and have found it such a wonderful resource that has helped me to accept, manage and appreciate my new normal. It was through reading Corina's blog that I began to understand the befits of meditation and so I was recently inspired to include it in my daily routine. This illustration sums up my own experience of starting to meditate. 
Thank you so much Corina for allowing me to contribute to your amazing blog, please keep writing so that we can keep reading. "

Links and further reading

• Ciara Chapman's Chronic Pain Diary on Facebook 

Evaluation of activities and setting the baseline

To follow on from the Pacing- Playing Detective post Here suggestions on how to interpret the findings

From previous post:
... From these notes, you can find out what works for you and what does not.
For example, you might realize that twenty minute social contact is fine. Half an hour creates more fatigue. Maybe walking for ten minutes is fine. Fifteen is too much. Spending time with one person is fine- with someone else it might not. Napping might not be as restorative as you had thought. Social media is fine during the day, but not at night... Lying in bed to write is good, sitting at the table is not. You get the idea.




On the sheets, like the sample above, it was suggested to write down everything you did, for how long, did it increase of decrease pain and fatigue or was it less, or the same?

To evaluate the findings

• Go back to the sheets you filled in
• Print or copy the evaluation sheet below (or email me and I forward it to you)
• write down the activity under the appropriate headings: 
• more pain, "normal" pain, decreased pain - More fatigued, same, or less tired
• It is very important to add the time as well.
• for example: writing on computer 30 min - would be under the "more pain" heading.
• writing on computer for 25 minutes, under "normal" pain.
• same for fatigue
• From these notes it becomes clear which activities- and the length of time- are in your favour in terms of pain or fatigue, which ones cause problems, and which ones cause no problems.
• You can do this evaluation sheet for activities, but also for social contact, foods, sleep/wake patterns.

evaluation sheets to establish your baseline

Setting the baseline

Baseline is the level at which you can do an activity in which you do not get worse in terms of pain or tiredness. As our days are never truly the same, it is wise to set a baseline of 80%. 

• again taking computer time as an example.
• if, according the findings, 25 minutes of computer time is ok, set your baseline at about 80% of this, which is 20 minutes. 
• This way you will not get to close to the point where "fine" turns into pain or fatigue.
• I set my timer for 18 minutes and then I have 2 minutes to finish up what I am doing.
• This limits the frustration when the timer goes off...
• Go through all your sheets and see if a pattern emerges. (it most likely will)
• Again be meticulous.

This exercise obviously represents a moment in time.

When I experience more issues again with pain or fatigue, I look at certain activities again.

I worked out my computer time, my sculpting time, my time in the garden, lenght of phone calls, etc.

I find Pacing a hugely valuable tool

• Pacing is learning to stop before pain or tiredness gets worse
• it will give you more control over your day
• The baseline should be used on ‘good’ days and ‘bad’ days. To begin with you may find it difficult to
• You can achieve more by pacing than by keeping going.
• Living with llness becomes living with wellness

Any questions -  Contact me, and I try to get back to you as soon as I can.

Be Well.