Copyright.

Being ill sucks.  It really does.  There's no two ways about it.  There's no sugar coating the joy of having an 80-year-old's body, when your only 37.  Doesn't matter your poison.  Could be Bob.  Could be MS.  Could be cancer.  Could be one of the other bazillion diseases, disorders and syndromes that pop up just to lay a large steaming nard on your life.  Nosology doesn't matter.  The result is the same.  Life turns upside down.  And where once you were tripping the light fantastic, you are now scrambling to recover your dignity and equilibrium after face planting in a big pile of the universe's fecal matter.

(Sometimes life just doesn't turn out quite like you imagined)

And when you're lying in that large pile of turds you can do one of two things.  You can cry and gag and try not to barf. You can woe is me.  And convince yourself the universe hates you.  Or, you can laugh.  Big belly laughs.  Guffaw and snort laugh, until you have tears running down your cheeks. 

That's not to say it's not okay to cry and swear at the universe.  I've been there done that and got the crappy t-shirt.  Grief and Illness are bound together.  You can't have one without the other.  You can't find the funny, or take back ownership of your life, until that grief is acknowledged, embraced, loved, slapped around, purple nurpled, and put in the naughty corner. 

And finding that funny in the most unfunny of moments is all about ownership.  About copywriting your experience.  About taking back control.  About saying this is mine, it belongs to me.  I may choose to share parts of it with you, but this is uniquely mine. And I don't really give a crap what you or anyone else thinks.

Those who aren't, or haven't been ill often find my reaction to being sick a little hard to understand.   Hell, even most doctors don't get my sense of humour.  I still remember the gynecologist who whipped out my uterus back in the day going on and on about the fact that I would no longer feel like a woman, and all I could think of was this Monty Python sketch from The Life Of Brian.  Was my reaction wrong?  Should I have been more serious?  Should I have felt less womanly?  Should I have ascribed to his belief and spent the rest of my life grieving and being 'less'?  As far as I was concerned he could take my dysfunctional and disrespectful womb and boot it up the arse.  I've never missed it.  In fact I celebrated it's removal.  Given the comically perplexed look on his face, I don't think he quite understood that. 

And so it's been since Bob came on the scene.  I've done the tears and the woe is me, and frankly it's exhausting.  Even I get sick of myself when I get like that.  I could sit back and let it consume me.  I could hand over title to my body and my life and sit back in a miserable state of perpetual helplessness.  A seductive choice at times.  That would be my right to choose.  But it's just not me. 

If I were to sit down and list off every broken bit in my body, if I were to look at my ever increasing list of diagnoses, if I were to look at my ever decreasing functioning, my ever increasing pill collection, 'tis all rather depressing.   The reality is that I can't change what is happening physically, I have no control over that.  My body will continue to go along on it's own merry way, and I'm just the unlucky side kick along for the ride. 

But I can control how I respond to what my body is doing.  I can decide how I am going to deal with what I face on a daily basis, and the rather scary unknown that lies before me.  I am going to choose how I experience this.  I am not going to act my illness, and no doubt I'll be one of those old ladies who doesn't act her age.

It's not about being brave or courageous, those words are overused these days. Instead, it's about making a choice on how to live your life.  It's about deciding to change your perspective and not letting anyone else, even your own body, dictate how you experience your world.

Illness takes away choice, it leaves you powerless, or so it would like you to think.

Those who have faced, or continue to face, illness know the power of perspective, the power of laughter.  Of finding the funny in the most unfunny of circumstances.

I will live my illness how I choose to live it.

Not how anyone else tells me I should live it.

This experience is my own and I will make of it what I will.

I will shape it and mould it.

I will alter it at need.

It is my work of art.

I will tell inappropriate jokes.  I will shock my doctors and those around me with my supposedly unconventional attitude.  I will put pink glittery feather boas around my puke bags.  I will name my doctors after Motley Crue songs and ask for my angioplasty balloon to be shaped like a unicorn.  I will make totally inappropriate glittery red Dorothy Shoes that I can never walk in.  I will laugh at the fact that my boobs are a garden or, that more recently, my lady garden has decided to grow a rather scary weed.  And I will not apologize to those who think I should be more dignified and serious.

Each of us must make our own choice as to how we deal with the cards we are dealt.

Each of us needs to ignore those who throw the word 'should' in our face.

Despite Bob and his ever increasing possee of abnormal peeps, this is still my life.

And I will live it as I want. 

Michelle ©

Alive and Brilliant, Deborah Conway 1993.

Perspective: DARE Re-post.

Having a bit of a blogging block, so I thought I'd re-post an article I wrote back in March for one of the Dysautonomia support groups I'm involved with, DARE.  

I realised today that I have spent so long trying to minimise my illness that I have lost sight of what it really is, and how sick I actually am. Why I’ve chosen this path is complex. I’m not completely sure I can identify all the reasons why I do this, but I’ll try.

I know part of it is my attempt to shake my fists at the universe and say, “You can’t beat me”. To tell my illness that it doesn’t own me and that I am still me under my compression hose and gallons of water. You need to do this to survive. It’s hard to keep getting out of bed each morning unless a part of you says I can do this, no matter the reality of the situation.

I know part of it is that I am sick of being the token ‘sick’ person. I’m over it. I don’t want people to know how ill I am.  I don't want the first question to always be about my health.  I want them to see me rather than dysautonomia.

I know part of it is my strong aversion to pity. I would rather kill myself putting on my ‘well’ mask, pushing myself to the limits and suffering for the next week, rather than get the pity look or comments.  They cut me to the quick and leave me with a sense that the word 'VICTIM' is being continually carved into my forehead.

I know part of it is that my ‘well’ baseline is now so much lower than those without chronic illness. How do you register a ‘sick’ day, when every day is a 'sick' day.  Symptoms that were so strange and frightening at the start are like white noise now. I’m permanently dizzy. I’ve had 7 years of dizzy.  I don’t really remember being non-dizzy anymore. If I didn’t wake up to nausea each morning, I think I may feel as though I’ve lost a part of myself (not that I’m not willing to give it a go).  'Normal' doesn't necessarily have to be a good situation, but it is familiar and that translates to a warped sense of comfort.

I know part of it is that I don’t look sick most of the time.  Not that I go out in public when I am really ill.  As those of us with dysautonomia have all experienced, people are happy to tell us we don’t look ill.  They might as well scream “LIAR” each time, as it is frequently clear that there is a 'look' to being sick and like jeggings, it is something that I am yet to master. 

I know part of it is that I used to work in a hospital. I know what ‘real’ sick looks like.  I've worked in palliative care. I know what these patients and their families went through and, my illness seems so petty in comparison. Basically I feel guilty for saying I am sick.

I know part of it is I can’t stand people who wallow in their illness. Who roll around in every bit of pain and discomfort and seem to enjoy the sick role. A while back I was on a forum and the topic was related to severity of symptoms. What began as a a simple exchange of what each person was experiencing, became a game of oneupmanship. Certain posters tried to out-sick each other. Bizarre, and certainly not a game I ever wish to win. 

I know part of it is that many of these same posters say, “I am super ill and yet I still manage to work, volunteer, raise my family, work on the PTA, cure world hunger, organise peace in the Middle East, and solve global warming. Those who say they can’t, have a bad attitude and are lazy”. Logically, I know they are tossers and would most likely be in every aspect of their life, but it still makes me feel less. So I fight through to try and do things that I know, in a moment of clarity, are far beyond me and fail miserably. I can’t even be sick right!

I know part of it is that growing up I was always taught to hide my true feelings. When I was ill as a child I was told I was a hypochondriac and to harden up. If things were bad we hid them and in turn hid ourselves. I was raised in a family where only the weak mentioned they were feeling unwell.

I know part of it is that incompetent and misogynistic doctor who told me it was all in my head. Thanks to a long list of cardiologists and neurologists, I know he’s wrong.  But I still have that nagging little voice saying “you don’t have an illness you are just a nutter”. Stupid I know.

I can sit back.  Put my psychologist logical hat on.  Sit my illogical emotional self on the couch and ask that part of me to tell me about my mother (oh self, lets not go there, thats years of therapy) and pull apart my illogical reasoning. But often we are driven by those little voices that tell us how we ‘should’ behave. I hate those voices with a passion but I still hold them close, they are my 'frenemies' and it is hard to part with them.

The other day I had a bit of a reality check. I wrote a post about the good old ‘simple faint‘, on my personal blog.  For those of us who experence this or even pre-syncope on a regular basis it just becomes part of the daily existance. But I was shocked by the comments and messages I received. People were truly horrified about the whole experience.  I’ve had similar comments before about posts, where people wish for me to get better, but never the shock aspect.

I was taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

I mean I know it’s not pleasant, but it’s part and parcel of living with dysautonomia.

Then it stuck me. I’ve been living with this so long that I’ve lost sight of what I am going through. My normal is so skewed from reality that I have lost the ability to  see my dysautonomia with clear vision. If one of my loved ones was going through what I described I would be horrified. I would never judge them like I judge myself.

I realised that I don’t have to deny my illness to be able to live with it. It’s not about rising above it necessarily, but accepting it for what it is, and to find it’s place in the big scheme of things. I don’t need to minimise it to make it bearable, that only increases the load I have to bear. I’m going to bring it out of the shadows, not for anyone else, but for me. Admitting it does not make me weak, self-indulgent, or all the other negative names I can throw my way. It’s okay for me to be sick.

Now I’m not saying those little voices wont keep getting their way on occasion, I’m realistic enough to know that. But I also know that’s part of the process. It doesn’t have to be an all or nothing. It’s the journey to find a balance between the two.

They say that part of the solution is admitting you have a problem so I’m going to start:

“Hi my name is Michelle and I really am sick. And that’s okay”.

Cheers
Michelle :)