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.

I did get some knitting accomplished during the last week of the trip. Before then it was just too busy and I was too fragmented to be able to give enough brain power to my project.  On the last day, on the trip up to Seattle where I was flying home from, we stopped at Shipwreck Beads (which proudly hails itself as the largest bead store in the country) and my mother generously bought me way more beads and tools than I had intended on getting.  I am now stocked up and ready to play.  Beading and making jewelry is a relatively new pursuit to me so I am looking forward to exploring what I can create.  Watch this space for what comes out of my dabbling.

I’m not quite ready to really start writing much so this is going to just be a short post.  My returning home routine seems to include taking a few days or weeks to settle back in before I am up for much in the lines of writing.  Much in the same way that it is difficult for me to write whilst on holiday (you will have noticed that my best intentions to write while away fell by the wayside) writing when I come home is a bit of a challenge.  Those first few days are spent reacquainting myself with the familiar surroundings of my home and everyday life with my eyes still in visitor mode. I even woke up the second night back and didn’t know where I was.  I wandered around the house trying to sort it out and at last I remembered that this was MY home, it is in England, and that my pillow was waiting on my bed for me to lie my head on it.  Having figured this out I returned to said bed and proceeded to sleep for many long hours, lost in the comfort that you can only get in your own bed.

Its good to be back home.

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.

Serenity is the youngest daughter of a dear friend of mine. Like most other 2 year olds she runs her mother ragged but manages to fill her heart with love beyond measure. Unlike most other 2 years olds, Serenity was recently diagnosed with Acute Lymphocytic Leukemia.

There is no lack of appeals on the internet for help with raising funds for sick children. Its a sad fact of life that children do sometimes get sick with horrible life threatening illnesses, and an even sadder fact of life that the financial burden that comes with having a sick child adds untold amounts of distress to a family. I’m not in the habit of appealing for help in most of these cases, not out of lack of concern or charity, but because I would bankrupt myself if I contributed to every one and I am sure that most everyone else is in the same spot. And given the anonymity of the internet and the dark side of humankind who would abuse the good intentions of donors, there is always the risk that god forbid, a plea for donations might be a scam.

But to me, personally, because of my friendship with Serenity’s mother and the untold gifts and blessings that I have received by knowing her, this one I need to pass on to whoever might be able to help. While I am sure it pales in comparison to the devastation that Serenity’s family is experiencing, the news of this has shaken me to my core. I have donated every last bit I had to give, which I will admit is not very much. My own family struggles to make ends meet every day, large in part to my own health concerns. Yet,this is one of those times where I could sit back and in anyway justify withholding even the smallest amount I had available. If we can afford to go to the pub and have a few drinks one night, then we could afford to give at least that much to help Serenity’s family. We can still go out with our friends, but drink a glass of water instead, and feel better drinking that plain old beverage than we would from any other drink, knowing that our small sacrifice is going to help make a terrible situation the slightest bit easier to bear.

With this I ask that anyone who is reading this today also consider making a donation, even and amount that seems too small to matter. Truly, every bit counts.

You can read about Serenity and her family as they journey into life forever changed at Lifting Up Serenity.

On behalf of my friend, and all those who love Serenity, thank you.

With limited budget (as in zero budget) for acquiring of new yarn for my stash, and a need for a significant but not too brain taxing project I decided to give a Log Cabin style blanket a try. It is a stash buster project using up all the odd bits and bobs left over from other projects and a few odd skeins that have been with me for way to long and needed to be used up or given away. My original intent for it was to just make something for the family. We can always use another nice warm blanket. But then I remembered that our friends are getting married in late June and it would be a perfect wedding gift for them. They are very eclectic people and it is definitely an eclectic blanket. So far it measures roughly 2ft x 2ft and I am hoping to make it no less than 4×4. I might need to raid some yarn from my shop to meet that goal but if ever there was a reason to do so, making the perfect gift for good friends is as good as it gets.

I have a few other projects that I would like to get started in the next few weeks. I had hoped to make a shrug with some nice cotton that my friend Anna gave me last year before I go to Seattle in July. I’m not sure that I will get to it by then, but it would make a good project to work on while I am there if I don’t finish it before hand. I have another project planned that I really want to get done before the end of June, but again I am not sure that it will be possible. Its another gift for another wedding and I can’t say anything more because the recipient just might be reading this blog. But if I don’t get it done before that wedding I will give my apologies and get it to them as soon as possible. Hopefully before their first anniversary!

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?