Wednesday 11 August 2010

Waiting For The Storm.

(Stormy skies out the front of our house. Part of my #lookingup series)

Uncertainty has been one of the worst parts of becoming ill.  It has stalked me since the first day I realised I didn't simply have a bug, and that something more serious was going on with my body.  It fills you with an overwhelming anxiety.  An anxiety that cannot be sated through determination or hard work.  Uncertainty, is as unyielding as the hardest stone.  Might as well attempt to stay a flood with a tissue, as create order in the chaos. It's been a constant companion for the past four years, and I hate it.

Bob is not a disorder with a clear path.  Technically it is not even a discrete disorder, but a collection of symptoms for which the underlying cause frequently remains elusive.  It is unpredictable.  It waxes and wanes.  Over months.  Over weeks.  Over days and frequently, over hours.  It hides from view.  Despite search after search it can remain hidden from public view for years.  The elusive Bigfoot of the disease world.  Known only to those who keep it's company.  It is a disorder that refuses to play by the rules.  It follows no logical path and leaves patient, doctors, and the wider world perplexed.  I have lived with it for four years and I still fail to have more than a superficial understanding of it's nature.

You take on the role of plate spinner in a bizarre circus troop.  Constant alert, waiting for the first plate to show a sign of the shakes.  Never knowing which  will be the first to fall.  Rushing from spike to spike in a desperate attempt to keep all in a state of equilibrium.  Failing time and time again, no matter how hard you try or how closely you adhere to the rules.   Fear becomes your permanent state, only the degree ever varies.

Always that sense of foreboding.  Always tension.  Always exhaustion.  Waiting in anticipation for the storm that you know with absolute certainty is coming.  Always that feel in the air, the electrical tension as the atmosphere begins to change.  Ears attuned for the first rumble of thunder in the distance.  Face turned to note the slightest change in the wind.  Never knowing exactly how far away or how violent the storm to come.  

Living always anticipating the worst.  Failing to see that the sun is shining in the present.  Why allow yourself to enjoy the sun when you know it will be taken away?  Surely that pain must be worse than that with which you are familiar.  You create your own reality.  An unwanted reality, one from which it feels impossible to escape.  Without change, the storms fills your entire vision even when it is no longer present.

You cannot harness the weather.  You can't will away the thunder or stop the wind with your hands.  You are flailing against an opponent who you will never touch.  An opponent who simply is, and is totally unaware of your efforts.

There comes a time when you must end the fight.  Release a burden that you have created for yourself.  The storm will come.  But even the worst cyclone has an eye filled with peace.  A peace that needs to be seen.  That needs to be embraced for all it's wonder.  The storm will be endured.  It has come and gone so many times in the past.  Each time you have picked up the pieces, and taken the first step.  You will do it again.  To sit waiting for the storm, so much is wasted.  So much power is given to that which cares nothing for the giver.

Moments of peace, in any sense of the world, need to be cherished.  To waste such moments in fear of the unknown, is to waste a precious gift.  A sunny day in the middle of Winter is far more precious for the surrounding days of cold and rain.  The sun comes in many forms.  An unexpected kindness.  A smile from a stranger.  Coffee with a friend.  Sitting out in the garden.  A minimal symptom day.  Only you can take away the sun on those days.  A choice can be made to either wait for the storm, or to embrace the precious days of sun.  I for one am deciding to choose the latter.

Michelle :)


  1. You are so right, it's not always dysautonomia that is our worst enemy, but we are. Living in fear can steal all our joy and precious moments. Living every moment to it's fullest, it's just hard to do on those really bad days.

  2. Michele - It is really hard on the bad days. It's something I'm working on, no where near there yet.

    I so don't want to waste those good times any more as they seem to be so few and far between. Feeling crappy on a crappy day is completely understandable. Continuing that crappy feeling on the 'better' days, so I miss out on the good seems such a waste of something so precious and rare.

  3. Thank you for this post! I'm a new reader but not new to capricious, invisible illness. I've had hypoadrenia, and probably a host of other things if I wanted to insist on diagnoses, for at least three years. Only now am I coming to the point where I can admit that whatever I call it, it's not going away. That healing is probably not going to be physical thing, rather spiritual thing--finding the sunshine in every day, smelling those proverbial roses, living in this moment and not waiting for "when I'm better". In the depression that settled in with the realization that I've acquired something for the long haul and not just a season, I really needed to hear what you wrote today. Thanks.

  4. Sandra - welcome and thanks for leaving a comment. Sorry to hear you can relate so well. When I first got sick and particularly when I had to quit work the depression hit me hard. Also when you are sick all the time it's hard to concentrate on anything else by necessity. Took a long time to re-sort my head to a better place. Still getting there. I think it's a natural part of the grieving process we all have to navigate. Glad it could help a bit :)

  5. "Why allow yourself to enjoy the sun when you know it will be taken away?"

    Boy, oh boy do I know that feeling! Before everything went to hell, it was not uncommon for me to practice piano and voice 3 or more (some days more like 7 or 8, or until my fingers felt like they were bleeding and quite literally falling off, which I now know they were) hours a day. Now, especially this summer (so far, more than 50 days with highs of 90F/32C or more, with indexes reaching 105/42), it's been difficult to get more than 30 minutes a day, which is killing me inside even more than everything else I've had to give up or modify combined (including working, making plans ahead of time knowing with 100% certainty I could make it, drinking more than a sip of coffee without my heart exploding [I once worked at Starbucks because I couldn't afford my habit], etc).

    On my "emotionally challenged and dis-regulated" days, I have sincerely wished that I had never taken up music. I wish I had the words to explain just WHAT music means to me, but the lump in my throat and the fluttering of joy in my chest I get when I hear "Rhapsody in Blue" will have to suffice. For me to say I never wished I started just goes to show what these illnesses have taken from me. I just hope that whatever is left is a simpler, more content, and streamline version of myself, and that what is being taken away is chaff.

  6. Erika - it's such a hard one. Sometimes trying to do what you did before and messing it up can feel worse than not trying at all. I get that. Oh how I get that. I've been trying to push past that of late (works sometimes, and sometimes not so much). There are certain things I love that are simply worth doing even if for 5 mins or even half-arsed. I like your chaff theory. Here's hoping that's what it's all about. :)

  7. What is especially difficult is being a perfectionist in so many ways. Although, I guess that is one thing that has been, in small ways, taken away, and actually one that I'm glad that is being chipped away bit by bit. I know I have a LOOOONG way to go as there is enough still there to cause me to want to avoid anything that's done half-arsed... baby steps definitely.

  8. I get that. I used to be anal girl (not in 'that' way) before getting sick, perfectionist control freak. Now half-arsed is a good day although I still long for the good old days :)

  9. Holy shit, I left a comment but I'm too dumb to post it before exiting the page. I think I might have Alzheimer's really early.

    I was saying I agree with your reasoning and optimism at how you see things. Except today because the PMS monster always makes the glass half empty. Till it gets cake. Then it's all for seeing the sunshine. :)

  10. I love you hard. I needed that. I've been doing a lot of grieving lately. Grieving for the me that I once was. But that's not terribly fair to the me that I am now, is it? But then again, sometimes you just have to wallow, just a moment, "just the tip" as they say in Wedding Crashers.

    You know, you're making it awfully hard for me to come up with a witty post today. Damnit.

    I think what I'm trying to say is *hugs*.

  11. I didn't recognise your blog! wow such a change or am I confused in my over medicated state. Is this you..... Pain made me take a combination of meds that have had an odd effect on my brain it seems. I should be asleep but as ever with EDS I often get the wrong reaction to meds! The joy of living with a rare condition.

    Anyway, I love love the picture. I understand what you are saying. Its weird when someone the other side of the world is someone you wish lived nearby. I think we could have stupid laughs at the whole stupid living with a chronic condition scenario.

    You'd always win hands down though on being able to write so eloquently with such wit. minor sulk now of no consequence....

    I am going to read this post again tomorrow so I could be that boring person that comments twice. Combination of meds which means I should really shut the ^%^$ up. So I could be back to cringe at this comment to embarrassed to comment again!

    Virtual hugs & much empathy from your bloggy friend in the UK.

  12. Interesting post. Thanks for this.

    Best wishes to you, Boonsong

  13. Wow.

    I am rarely rendered speechless, but this post has done just that. Hugs to you, you strong, brilliant woman.

  14. really identify. enjoy now, i tried to do that yesterday when being pushed around buck house with a lovely pots headache, joint pain cold limbs due to the coldness of the place. im trying to accommadate this unfriendly disorder the best i can. im getting better at doing this, its a struggle but one i must continue with.

    i really do appreciate the non pots days. something that iwouldnt of done in the past. a cliche i know but a beautiful flower, an aroma of times past, the softness of rosie. thanks for writing wonderful words that hit home. xxxxxx

  15. If it is a bad day I know pretty early and go OK today we rest in the hope that tomorrow will allow a little more ability and a little less discomfort. The reality is that this thing does hang over our heads. Good times can have days, weeks months between them - last from seconds to hours (a day if lucky) and then revert to bad. But acceptance of this pattern isn't pessimism it is realism. I think this makes the good moments even more special and appreciated cos you live in the present rather than taking it for granted. I don't like being ill. I hate the things it has snatched from me and I am not about to give up, but the eye of my hurricane is that I have been forced to stop and can now TRULY appreciate so many of the simple things that, had I continued working, I never would have. Birds, flowers, pets, Family,the freedom of taking an unaided step, the simple joy of just feeling well. The more you struggle in the web the stickier it gets and sometimes you just need be still and let yourself float with the current.

    1. it's definitely that appreciation for the little things that gets you through and it's the one thing that being ill has really taught me. There is so much beauty in the world and sometimes it comes from the most unlikely places. Not that it's always easy, but if you can find it, it definitely helps. :)

  16. Beautiful post hon'. Hits the nail right on the head and is gorgeously written,x
    Love and hugs from me, x

  17. These are the exact words I needed during this time of turmoil and craziness. Thank you for showing the flip side of the coin.

  18. Being a lady who obviously, like me, takes comfort and inspiration from music, try this one for size my indefatigable 'friend' ! Bill Withers, "Lovely Day" - may not seem appropriate at first glance but sometimes when I see that all I seem to have is my lovely Mr Patient for love and support I try to kick myself to count myself lucky, as one of him is better than a whole barrel load of other 'monkeys' (no, i'm not calling Him an ape ;>) ) And I know you have Mr G and at least a n other to prop you up. Lots of love to you xx


All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx

Note: only a member of this blog may post a comment.