View From The Chair

You walk by me
As if I am not there.
My legs may not be strong
But my mind is.

These wheels do not shield
Me from the world.
They do not make me blind.
I see you as you pass me by.

My body reminds you
Of your own mortality.
Yours reminds me
Of my own.

You find temporary escape from truth
As you pretend I don’t exist.
Yet when you close your eyes
Mine are open wide.

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.

I know there are a few of you who stop by in hopes of finding something new, only to leave shaking your head in dissappointment.  I appreciate your loyalty and want you to know that I hear your knocking and I am not ignoring you.  It is just that I get distracted on the way to answer the door.  Countless times a day I think to myself “I should blog about this.”  only to be squashed by the giant killjoy in my head that says “Not now, do it later. And only if you can make it really interesting.  Which it won’t be.  So don’t bother.”  Either that or the trickster will fool me into thinking I am too busy to stop and write.  Because refreshing facebook again to see what my friends’ Top 5 Favorite Pickle Flavors are is top priority, you know.

I don’t really have anything in particular to write about today, but since I have been trying to get my twitter list going and realized that I had linked this site from my twitter that I should either get things going again or consider abandoning it all together.  Not being able to stomach the thought of abandoning it all together I am here now – babbling about nothing.  Hoping that this little babble will turn into more babble and that more babble will be able to silence (or at least babble louder than) the ‘voices’ (don’t worry, they aren’t real.  Not all of them anyway. ;)  )  and maybe even I might start writing for real again.

What I do know is that I will never post a “I’m back” post again because doing so is a guaranteed assurance that I will not actually resume posting.  So let this be my first official “I’m not back” post.  If I prove myself wrong by actually writing then hooray for me and reverse psychology.  If I don’t, well then – I told you so.  I’m not back.

It was with great amusement that I found myself making this yesterday. Because I needed it. Now.

I made it to go with this dress:

Which by itself is a great idea and it will look stunning. But when you consider that I have had the dress for 2 years (though it didn’t fit properly until recently since I have lost weight) and I have had the beads for nearly a year, the folly of it becomes apparent. It wasn’t until I was struck once more with a bout of pre-holiday making madness that made to order jewelry became an imperative. It is oddly reassuring that everything is right on track, and despite being far from where I had hoped to be physically for this trip my old habits and routines have survived in tact. I am thankful that I have creative outlets for diffusing stress and energy. I know I should probably be trying to be more still and reserving my energies for the upcoming journey, but truthfully I think if I were to try and sit still I would waste way more effort fighting the urge to be active than I would just surrendering to it.

The big blue beads were brought back last year by a friend from her summer in India. She gave me a beautiful silk bag filled with gorgeous glass and stone beads. The small pink and green beads were purchased on our trip to Barcelona last year. I love the idea that I took beads from other travels and used them to make something to wear in a time of traveling.

Tomorrow I am going to be doing some long over due showering of love to some of my most recent finds and favorites in the web world these days. I’ve made some great new discoveries, like Barb over at Craft Therapy, who is not only a fellow crafter but is after my heart with a blog by that name! She gave me an award last week and its my time to give some of my own out. So be sure to stop by tomorrow when I share some Divinely Crafty Finds!

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.

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.

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?

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.

I sat at my computer with inspiring music playing, pillows to support my sore back and settled in to just do it. And I couldn’t do it. My bones ached and my thoughts mushed around in my head. Not today. This is not the day on which I will write deep thoughts about anything. It is a day, nonetheless, that I have the opportunity do things differently than I have in the past. Instead of rebuking myself for not pushing through at any cost, or pitying myself for being at the mercy of the whims of fibromyalgia’s sufferings I am surrendering with strength and grace to that which is here now. And with strength I am writing this brief hello and then will retire to my bed where I will spend the rest of the day with a cup of tea and a few select choices on the BBC iPlayer.

Happy New Year to you all, and may it hold much creativity and coping. And may we find love for all that we are, even in the messes we make.

With my small but exciting shift that has come from the hypnosis, I decided to “confess” to my husband about what I was doing and branch out into seeing if maybe this hypnosis stuff could help me with my sleep. Trying anything for sleep is terrifying to me. I have tried it all – herbs, sleeping tablets, breathing, meditation, relaxation tapes…. all of it. I have been able to get to sleep but staying asleep has never been achieved. Part of the fibromyalgia profile is that you don’t go into the restorative sleep that happens after dream sleep. For me, I would occasionally get deep enough to have a dream (on sleeping tablets or herbs – very rarely on my own) but would wake up and have to start all over again. It was not unusual to have a night when I would see every hour on the clock. With the average of 20 minutes to get back to sleep it doesn’t take a genious to figure out I was not getting enough sleep period, nevermind good quality sleep. Daring to hope that hypnosis might help was scary. I wasn’t sure I could take another let down if it didn’t work. Yet with the small but significant success with the other hypnosis I decided to give it a go.

The first night – nothing was very different. I tried not to be too discouraged, and kept on with it. Within a few nights I realized one morning that I could not recall waking up the night before. hmmm…..veddy interesting…. A few more nights and yes – there was definate change. Again, very subtle but encouraging. I told my husband one day in a whispered hush (for fear that saying it aloud would jinx it) that I think I slept the night before. I felt like a kid telling their confidant that they got away with stealing a cookie. A guilty pleasurable secret. Though I was still not fully convinced. I didn’t do my hypnosis a couple of nights this week for one reason or another and I was delighted to find that I was MISERABLE the next day. Never has feeling like such crap been so joyful. It seemed like I may have been proving my success by showing how different it was to skip it.

Last night I went back to the sleep hypnosis before bed. I drifted off quickly but awoke when Axel came home from a night at the pub with friends. I managed to get back to sleep easily enough and next thing I know………..its morning!!! And I feel freakin’ FABULOUS! There is this incredible energy flowing up my spine and I feel like there is a spark in my step. I got sleep. Good sleep. Not just pass out from exhaustion sleep, but fill up the tank sleep. The greatest gift ever.

Only time will tell if this experiment in hypnosis will have lasting effect, but for today I am so hopeful. The hypnosis is part of a 3-fold strategy towards healing that I have been brewing in my head. The other 2 are yet to be tested and I will not reveal what they are until I have done my trial with them. I am going very slowly and introducing one at a time, measuring change with each one before I go on to the next. I have spent so many years seeking out answers from experts and not listening to the most expert of experts on what will help me – ME. silly me.