Divinely Crafty

As I type the title for this post I take pause. Can I really say that this has been “one of those weeks”? The implication is that this week has been somehow worse than other weeks. And while it has been a doozie, I’m not sure if it qualifies as particularly worse than most weeks. When I look back and take stock of the many weeks that have passed in recent months quite a few – most even – could qualify as “one of those weeks”. It sounds terrible when I admit this, but truth being good for the soul, I guess it’s liberating to be open about it. Maybe taking a look at this stark reality will lead to change that is desperately needed.

But yes – this week. What a week it was. Much of my time was spent at the hospital with my oldest daughter dealing with one heck of a nasty cut on the bottom of her foot. (Most of that time spent in horribly uncomfortable waiting room chairs. Seriously – I wouldn’t mind long waits if they didn’t hurt so dang badly. My poor fibromyalgia self was in agony. Plastic feel remarkably like concrete when it is under one’s tush for too long!) The cut as it turns out was not just a cut, but the doorway in which a large piece of wood gained entry into her foot. Say it with me – trying not to cringe too badly – OUCH!!!! I’ll spare you the play by play but the short version is 4 trips to the Minor Injuries Unit, 1 trip to x-ray, and 2 games of hardball with hospital staff (who refused to believe there was anything in her foot), way too much pain suffered on the part of my daughter, and finally last night after a round of local anesthesia and a few choice incisions – out comes a massive chunk of wood. Over 2 centimeters long and 1/2 centimeter wide! Nothing in her foot… yeah, right. There was at least one doctor and nurse in town feasting on a big old plate of crow last night. I’m happy to report that already today my daughter can walk on her foot with considerably less pain (given there is no longer a plank inside it) and we are all relieved that barring any unforeseen complications this episode can begin to be put behind us. Any thoughts for speedy healing of what is now just a nice big nasty cut that you could send her way would be welcome and appreciated.

Of course, as happens with us fibromites, all the stress and physical strain from the above ordeal has led to a very bad flare of my pain and fatigue as thick as it gets. My eldest summed it up quite nicely when she told me yesterday, “You look like road kill mom.” Only road kill has it easy. Road kill, I presume, is no longer feeling pain having departed this life. You know you have it bad when you envy road kill. yikes.

It’s times like these that make being a mom with a chronic illness really hard. Parenting on it’s own is a hard job. Its an exhausting job. Painful even with the mishaps brought on by rambunctious little ones, and painful in the sense that one can feel pain of the soul and emotions (and lets not forget the pain of birth!). But with a chronic illness those hard,exhausting and painful times have potential to turn into debilitating times. A few hard or stressful days can set you back for weeks. A few hard or stressful weeks can turn into months of setback. Which brings me back to the beginning of this post and my revelation that this week isn’t an isolated occurrence. With a chronic illness all weeks have potential to be “one of those weeks”. We operate from a different baseline, a normal that isn’t what others consider normal. All of my children have had to adjust their expectations according to how I am feeling. They are used to mom not being able to make it to school events, they are used to tip-toeing around the house when I am getting some much needed rest. They know that their home life is very different than that of their friends. Myy littlest, her eyes filled with concern and worry, knows when to ask if she hugged me too hard because she knows that on bad days even her gentle touch can hurt. Its not always easy on them, but they manage. We all manage it seems. Some days better than others. I think we managed fairly well this week, all things considered. In many ways it was better than last week which on the surface appeared to be an easier week, but that underneath was full or turmoil. Maybe that is what I meant when I gave this post its title. “One of those weeks” that despite all odds against it, we found our way through it. Perhaps it wasn’t so bad after all.

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