Those Who Count Spoons

I thought I might write a bit on the power of spooners. I've been hammering at this phrase "Jedi are beacons of Hope" since... ages... February actually. And stuff is beginning to come together a bit. Spooners are massive beacons of hope, and I just wanted to share with you why; because there are very often days when I feel a bit hopeless, and I imagine you might too.

There are quite a few things that I cannot or should not do at any given time. That ideal of flexibility that others hold is not something that I can actually emulate, and that can be so frustrating! What I have found I often have to dig into instead is the communication skills toolbox.

Again, the communication skills toolbox has it's own hard to access corners for me, which means I can't reach into it all the way - but if I can fully master those bits of the toolbox I can reach, then I believe my ability to spread joy and compassion in the lives of others is actually far greater; when we are able to accept and acknowledge those boundaries of ourselves as Spooners, explain them as fully as we are able to to others; we are then able to live with full dignity, and grace; and with a big smile to warm the hearts of others when they have come to meet ours.

People like to help; but I don't enjoy being helped always. That's been the hardest hurdle for me to acknowledge, accept, and overcome. Getting the communication right has helped me so much in taking the strain out of being helped. I can say more precisely what I need, and not more than what I need. "I need x amount of down time" not "Get lost! Everything hurts!". "I need you to write this down for me." not "What the heck is going on? I'm super confused!"... The bodhisattva ideal has helped me a lot in coming to this conclusion - they see no difference between the self and others - they have the same compassion for the self as they would for any other being - so it is just as acceptable for you to have a need as it would be for your child or a stranger or your spouse to have a need - and just as unacceptable for those needs not to be met. The other thing I've found really helpful is "I'm not sure what I need just yet, but I know it's not *that*. Can I have some time to think?"

So embracing being a spooner has actually been a real journey of compassion for me, one I'm still on, and will be on for a long time I imagine; but it's a nice thing to be able to access this model.

So, today I could have cried a river - and as it usually is with these things, it's a mix of pain, loss of hope, and inadequacy.

Then I remembered marathon runners. So much about their art seems to be about mindset. And there were two things that came to mind.

1) "Shut up, legs" - there are some sources of pain I can safely ignore, because they really aren't telling me anything new about anything dangerous - the marathon runner knows they can safely run all day if they wanted to - it's just the glycogen depletion talking...

2) Mindset. It is just so important. With the right mindset, athletes can "break through the wall", and find hidden reserves they didn't know they had. I think this is essential to know in combination with point 1 - if you know something isn't going to cause you damage. The pain doesn't go away with this, but the loss of hope and sense of inadequacy can. Mindset is a tough game for me; but I suppose that is why marathon runners are rare!

So I've been putting in some research into pain, to understand my own.

One thing I've learnt is that it is non comparable. No-one else will be the same, really. Patient groups are great, but I should treat them with caution. I try not to look at people in similar situations to compare myself with them because it actually makes me lazy. It makes me feel as though I've done my job of listening to and understanding my pain. As we learnt today, that loss of a Myelin sheath might actually be new tumour - It's really important that we are able to listen to ourselves, to play out part in our battles. I was a terrible listener, and developed a permanent right eye tunnel vision before I woke up to the fact I was pushing myself too far... we are non comparable.

Another thing I've learnt about pain, is that it is like a slow "drip, drip, drip, drip..." into a bucket. Twinge... drip... headache... drip... poor hydration... drip... stress... drip... lack of self-love and self-forgiveness... drip...

All those little drips fill the bucket up. and when it's full it doesn't matter what the next drip is, it'll spill. Neighbour mowing the lawn at 8am? TIRADE! Kid forgot sports kit? DRENCHED! A spike in nausea? SELF LOATHING! ... it's so far away from what I'd call Jedi it's not true. I dunno if this analogy fits for you guys, but full bucket living eroded the life quality of my best beloveds and allies who could have be good carers, AND it makes me un-Jedi.

I find I can empty my bucket by talking with someone. Someone who can care, but preferably won't be either alarmed, or get bored, or try to fix things... especially with some of the strange places I might want to itch and scratch!

I'm not clergy, I'm unskilled - I consider myself very much a listener in training - but I know how stupid I can be with a full bucket - I therefore offer myself up as a drain for anyone else's bound-to-be-very-different experiences of pain if they feel my services could be of any help.

Wishing you all the very best on this Jediism Day

A thing I've learnt today: recovery nap. Take it if you can! Does anyone have experience of building a nap time into the day? I am on day 4 of new meds, been dreaming for the first time in *years*... Leaving me short of spoons. Might just be something I need to get through these next 2 weeks.