Divinely Crafty

It’s been a rough couple weeks around here in the fibromyalgia department.  It never fails.  Just when I think that I have at last found something that is really helping me and I start having visions of a semi-normal life… ding dong – big ol’ flare calling.  Man. Way to slam a girl down to earth you big kill joy of an illness.  hrumph.

When I cam back from France I was riding a wave of high energy.  The weather was so much better – so much dryer. Even though it rained part of the time, the atmosphere was less damp.  What an incredible difference it makes to how I feel.  I even took a few short walks!  Walks people!  I don’t take walks except a stumble from room to room in my house these days.  But in France I walked – for more than a few feet at at time!  That alone had me feeling like I could take on the world.  So when I came back I knew that it would be hard, I knew that I would have a post-holiday come down.  But I felt so good that I made a point to keep riding the wave of optimism and energy that I caught down there.  And for the first week or so I was able to keep it up.  I worked in the back garden, I worked in our allotment doing things I wouldn’t have believed I did if I didn’t know I did.  We had a party at our house over the May Bank Holiday weekend and I trotted around the place with only my walking stick and the occasional wobble.  Everyone said how good I looked, how great it was to see me up and about.  I agreed – I felt great! I celebrated what felt like a new beginning to something fantastic and exciting.

And then I crashed.  Hard.

In the weeks since I crashed it has been a struggle once more between my will and my body.  My will is intense and strong, and it is not at all pleased that my body is once again calling the shots, and the directive is: stay put and do nothing.  Not pleased at all.  So I pushed with all my might and in my best little engine voice cheered myself on as I struggled to get out of bed and do something – anything- to prove that I was not losing this battle.  I think I can, I think I can, I think I can.  I got back out to the allotment and dug in the dirt.  I sowed seeds and planted starts in their new beds.  Inspiration and visions came to me while I worked.  It was incredible and I felt that finally I knew how to live with this illness, that I had found that something I was looking for that would push me —-through—- the pain and into life.

But then I crashed. Even harder.

I didn’t get up this time.  I tried.  I got as far as the kitchen where I realized that making my breakfast -at 11:30 – was all that I could handle.  Even that was overwhelming. I ate and needed to go back to bed for a rest. By 1:00 I was flat out fast asleep.  Woke up at 5:00 (yes, that is a 4 hour nap) only to eat and crawl back in bed where I fooled myself into feeling like I did something by putzing around the internet. And so it has been for the past week.  Me sleeping late, doing nothing, and sleeping some more.  My body aches and screams when I push it each time I climb the stairs.  My own personal Everest those stairs are.  But no one is cheering when I get to the top.  Just me, letting out an exhale of relief that it’s only flat ground until I reach my bed.

This is a downer of a post.  I know, and I apologize.  It’s posts like these which I avoided writing for so many months while I have been neglecting this blog.  I promise I won’t write too many of them.  I do believe that I have found that special thing that is needed to keep me going forward and living with this illness, living with this body and not fighting against it.  Part of that is being honest though. Honest about my joy, about my struggles and honest about my victories as well as my failures.  They are all important. They are all me.  They are all divine and they all keep me crafty – looking for a new way to do things, creating a life worth talking about.  Even if I am just talking to myself.

Tags: coping, creative living, fibromyalgia, flare, life, struggles

And I am fine with that.

I admit that I have massive discomfort with feeling angry usually. Not to say I don’t feel anger, quite the opposite. My habitual responses to anger are to either react swiftly and harshly, or to deny it flat out, keeping it stuffed safely from view of others and myself. Not the most forward thinking way of dealing with matters. I know this, but the thing is that in order to access something you know means engaging the brain in thought. Habits don’t hold conference before we fall effortlessly into them. No thinking required. I could do it in my sleep, which is ironic given that lack of sleep also makes habitual behavior all the more likely. Tough nuts to crack, those habits.

Beyond the raw reaction of my habits, I try to go with the more ‘enlightened’ approach and follow the anger to its source, which is always a fear of something or another. Its helpful and it does have the effect of lessening the furor of my wrath, even reducing the frequency that I even feel such ominous anger, but being willing to look at it closely can be a frightening proposition. Staring into the face of the anger of one’s most formidable of foes – your own self – and not being gripped can mean risking having your world shattered. Not always a bad thing, mind you. But it is the challenge of a lifetime. Maybe even it is the core challenge of this lifetime .

And then there are days on which I am just to pissed off to take a deep breath. And today is one of those days. I see it, I feel it, and I am simply not in the mood to follow it anywhere. The one possible exception being to watch it go from rantings to an audience of dust bunnies and stacks of empty tablet packets here in my tower of exile bedroom, to words on The Internets.

Today I am angry and that is okee-dokee. I am angry that anyone who is ill should have to spend one drop of their precious energy into responding to those who doubt,blame, ridicule and abandon them. We don’t have to look far back in time to see illnesses and conditions that were once unexplainable or misunderstood that we now have evidence of their existence and the ability to treat if not cure them. New discoveries are made every day, but there are still those who refuse to believe that fibromyalgia, ME, CFS, et al exist at all just because they don’t have a range of normal on a blood test to measure us by. And at the same time they are quick to blame us for the existence of our (supposedly non-existent) illness on our choices and lifestyles. Double kick – I don’t believe its there, but its your fault if it is. I am angry I used up several of my precious spoons getting up, showered, dressed and out of the house to have a couple social hours with friends and that I ended up the better part of those social hours fielding questions about my mysterious illness and whether or not it might have karmic significance or energetic stagnation. News flash – it doesn’t matter if you are blaming my illness on some evil deeds of my former incarnations or my failure to clear a glowing plug from my aura. Its still blaming. Its still assigning of fault to someone who is ill. Mind you I believe in karma, past lives, auras and other ideas that get me filed in the wacky bin in many people’s view. But in my dream of it all these are tools for growth and awareness, not instruments of retribution or failure. I am angry that I am certain there was nothing but positive intention when I was asked by a trusted friend if I had considered metaphysical causes of my illness, because I have in truth already looked at that view. I know she only wants to help me find a way to feel better, I know this because that is what I wanted. Its is still all I want. I am angry that I have come to a place in my illness that someone else’s caring can be a spark for such anger. There is hope in blame, the hope that you really might have control and choice is alluring. I am angry that hope and anger go hand in hand.

There are many other things that I was steaming about when I began to write this. They don’t really seem to be getting to me now, so I will let them lie. It wasn’t what I meant to happen, but there it is. The words I have written are telling me to follow them. They are the thread, the fuse leading to the bomb. I see it. Not sure that I have the guts to disarm it today.

Tags: anger, blame, choice, coping, fibromyalgia, words, writing

I am going on a cross Atlantic flight in February and I know all too well that the effects of such a trek are hard for the toughest of bodies. A chronic illness makes travel a beast of different proportion. I barely make it through the check-in line before my legs,feet,and back are screaming at me. Carry on bags with laptop and camera might as well be concrete blocks anchored to my shoulders with twine. (Do not ever suggest I don’t bring things. Its not going to happen. ) I will be alone which adds to my need for comfort and efficiency. I am thinking about finally getting a walking stick to help me get through long airport concourses. But my fear is that it will be another thing to carry. There is always the wheelchair option and the slow moving beeping people carts. I just don’t think I am ready for that mentally. Physically – yes. But in my mind I can’t go there. Perhaps I will change my mind when the inevitable reality of the multiple discomforts of travel hits, but until then the plan is to hoof it. I am thankful for the ability to choose, or I suppose more accurately – the illusion of choice. Somehow it feels like if I can, I should. Should argh. Will. I will. I will do exactly what I am able to. breathe. repeat.

What are some of your best tips for travel chronic pain and illness? I will be on the road for 6 weeks, going between two primary locations with long haul flights on either end. What are some of the best ways to prevent stirring things up more than is needed. (Do I invest in a foldable cane? Seriously. Do I?) and how do you recover from the stress and pain that can’t help result?

Tags: chronic illness, disability, fibromyalgia, travel

dylan earrings2

Originally uploaded by Divinely Crafty

The weeks leading up to Christmas this year were marked by one of the worst flares to date in all the years I have lived with fibromylagia.

Normally the holidays are a time of busy crafting and creating. I have always loved attending to the details that make holidays special times. Not always showy or grand, but always with heart.

This year was no exception I am glad to be able to say. I had picked up a good bit of beads and jewelry making supplies when we were in Barcelona with intentions of making more felt / glass bead pieces. I had only used a few as originally planned, and with the addition of some lovely beads my sweet Anna brought me from her time in India this summer, I had a brilliant collection to choose from for little holiday treats.

Pictured above is a pair made for my oldest daughter,Dylan. Gorgeous Indian glass rounds with Chinese medallions. May they bring her good fortune.

Next is for Kiah. A mix of Czech glass and silver. Elegant with an edge, just as she is.

Delicate stones with a touch of sparkle for Anja. Her first pair of dangly earrings. If the grin on her face when she tried them on means anything, it was a special gift for a special young girl!

All three pairs made in a quiet, stress free afternoon. I was able to sit comfortably in my bed with supplies neatly laid out before me thanks to a bit of organization that I confess is actually unusual for me. There is something about scads of tiny glass and stone bits that begs even the most die hard of mess-makers to straighten up and invest in a few fish tackle sorters. Biscuit tins make great storage for tools, wires, and such and the lids double as work surface. Complete with raised edge to prevent an errant bead from rolling off and into the sheets where it would without doubt cause a painful living interpretation of The Princess and The Pea that night.

The earrings were received with delight and I have seen them worn on many occasion. Dylan reports that her mates at school are asking about buying some if I make them to offer. Not sure what I think of that, but it could be fun. I’ll tuck that aside to consider on another day.

For now I am in the process of re-visiting crochet and the quest for the perfect string bag pattern. Wish me luck as I foray into thus avoided territory of SC, Ch St, and a host of abbreviations I have little understanding of! I will report back shortly with progress.

I hope.

Tags: beads, coping, daughters, fibromyalgia, gifts, glass, jewelry, organizing, parenting, simplicity