Finding Support by Cleaning House.

(I've lost the link for this, but gosh I love it)

One of the earliest lessons I encountered when I became ill is that some people are inherently compassionate, and some are simply incapable of even understanding the term. I also learnt that sometimes compassion comes from unexpected places and sometimes it is lacking in the places where we instinctively think it will reside.

It was a hard lesson.

When I first became ill I had expected that those nearest and dearest would be there. It's a natural assumption. In our time of need we expect that our family and friends will rally. That there will be casseroles and fluffy socks. And much in the way of hand holding and support. Some get lucky. But sadly for many that is a scenario viewed only on their TV screens. The harsh reality is that not everyone will be there as we expect.

I still remember calling my a friend (now ex-friend) early on in my search for a diagnosis. I was in tears. Completely overwhelmed after being told that I may have MS. She promised to come over after work, then rang on her way home to say she was too tired and did it matter if she didn't come over. It hurt at the time and I must admit even now as I type all these years later, I still feel a twinge of that hurt. But that wasn't the first or last hurt that I have experienced over the past seven-years. Sometimes in the form of an uncaring comment, an exclusion, or action. And I know I am far from alone.

Part of me still wishes for the close and large support network that others have in their daily lives. Every day I see people diagnosed with particular illnesses and suddenly there are fundraisers, rosters to help out with cleaning and cooking, and designated drivers to get them to appointments. Admittedly, I instinctively recoil from that kind of attention, but a small part of me wishes I had even a little part of that. But I realise now, as is the case for many others, that it is simply not to be.

I don't have a casserole illness, I don't have a black and white disorder, and I don't have something that will ever get better. I live in a land of grey that is hard enough for me to navigate let alone anyone else. Society as a whole, does not do well with death, dying, or chronic illness. How do you respond to someone who will only ever slowly get worse? There are not many acute moments with Dysautonomia, just the slow trudging path of chronic illness, punctuated with yet another hospital or ED admission. No clearly defineable end in sight. Nothing to clearly fight. Normal parameters of caring, disease path or goals are no longer applicable. Few are those who can stay such a challenging path by our side. And some simply find it overwhelming or tiresome. For some your illness or suffering, is quite simply bothersome. It's a hard realisation to live with. But it is a first step in finding the positive support you need.

Being chronically ill has allowed me to clean house in a sense.

I have no doubt that I would still have a lot of those other people in my life if I had never become unwell. I also realise now that I attracted and allowed others in my life who were never really there for me even before I became ill. Back then a large part of me was so used to being in a certain roll that I never thought of it as a problem, or that I was worthy of better. It was simply how it was. And it had never been challenged. I was very independent and had always managed relying on myself alone. I was used to being the helper, not the helped. I had never been in a position where I needed true and long-term support. A position where my own reserves would run dry. My role had always been as hand-holder, and no doubt I would have continued in that role if my health hadn't deteriorated.

It was a strange and sudden change in many relationships. All of sudden my illness became an inconvenience to others. I couldn't drive to their house as I always had, and it suddenly became too far for them to drive to mine. I couldn't go out often, so they stopped inviting me. I couldn't listen on the phone for hours to their problems, so they stopped calling. I didn't get better and they became bored. I couldn't give them what they wanted so they left. My illness became boring and inconvenient.

Having people in my life who took without giving, or only giving when it suited, was exhausting. Pre-sick I had the capacity to deal with that drain and lacked the wherewithal to see the toxic nature of those relationships. Post-sick I didn't have the emotional or physical reserves to deal with their demands and it suddenly dawned on me that I could say no and that I deserved more.

It took me a long time to understand that compassion simply isn't in some people's DNA. For a long time I blamed myself. It took me a long time, and nearly a year of counselling, to understand that it was okay to say, and actually believe, I deserved better.

I like to think of my current support system as a fine wine. Over the years it has been distilled to those who truly care. I don't have to deal with the hurt that comes from fair-weather relationships. Instead I concentrate on, and am grateful for, the love and support I get from the few in my life who are really there for me. Who give me support without always reminding me how much of a burden my illness is for them.

Not having those negative influences in my life, or being able to compartmentalise those I can't avoid, has been a godsend. A gift that I recognise now, though admittedly, not so much at the time.

Now I have people in my life, in real life and online who are truly supportive. Who get me, my sense of humour and my needs. They are there to share a shoulder or a laugh at need. People I would never have expected have stepped up, and I have also made friends in the unlikeliest of places. And I discovered that supportive relationships can, and do, go both ways.

It is better to have a handful of people, or even one, in your life who truly cares, than to be surrounded by a large amount of people whose ability to care is conditional or inconsistent. Sometimes being surrounded by people who really don't care can leave you feeling more alone than actually being by yourself.

Being chronically ill you get to see the true nature of those who surround you. It is easy to be there during the good times. But when the tough times hit it quickly becomes clear who has the strength of character to stand by you. When those tough times persist or become complex, many may fade away. It's easy to feel abandoned. But it is important to also remember that often those that are left are the cream of the crop and the true of heart.

Sometimes blood and history are not a guarantee of compassion or support, no matter how much we wish it were otherwise. But that moment when you find a person who truly cares it's like a light goes on and you wonder why you put up with less.

Cheers
Michelle :)

The Adventures of Bob and Dick.

".....and then he did a mould of her vagina!"  Not exactly the sort of thing you expect to hear when you're sitting in a little hospital courtyard sipping your illicit lemonade, but it made me both wince and giggle like a fool.  Which I'm pretty sure was her intention.  Because that's what she does.  She makes me laugh when it seems like there's nothing really to laugh about.  And she always knows exactly what it will take.  (Though, if discussing an art piece made entirely of plaster cast vaginas doesn't make you laugh you really have no sense of humour).

When I think back to that fateful day in 2008 when we first met I could never have imagined how important she would become to my life.  Who knew that developing Bob would lead to anything good?  And yet it did, and the fact that it was so unexpected makes it all the sweeter.

There we both were, in a small hospital gym, surrounded by a gaggle of grey-haired Franks and Merles.  The only two patients in the room who didn't have first had knowledge of the Great Depression.  We bonded over illness, over an upturned life, over a love of Johnny Depp, and being hit on by sleazy elderly Lotharios.

She knows only too well the world of doctors and sickness.  She's faced it head on, and left me in awe of her determination and courage.  And even during those times, she reached out to me, and to others.  Her generous heart and giving spirit always in evidence.

She is an expert at taking my mind off being sick.  It's often only after she leaves and my heart feels lighter and my cheeks hurt from laughing, that I realise what she's done.  In many ways it's not even that she stops me from feeling like the sick person, instead the sickness becomes irrelevant and she reminds me that I'm still here.

I know I am lucky to have found a kindred spirit with a wicked sense of humour.  Someone who understands what being ill, and the baggage that comes with it, means.  Someone who simply gets it.  But most of all, I know I am lucky because I found a true friend.

I don't know if there are any words to adequately describe what her friendship has meant to me over the last few years. I know I have struggled writing this post more than most.  And I know these few barely touch the surface.

But I am proud to call her my friend, and even happier that she calls me hers.

Happy birthday Kerri.

Michelle :)

New Year Thankfulness: Friends From The Ether.

I've never been big on the whole idea of New Year Resolutions, or New Year celebrations for that matter.  Why wait for one day in the year to set about making changes in your life?  Are the other 364 days in the year somehow resolution-challenged?  Why go to the effort to make resolutions that you know you simply wont keep?  Resolutions are about small egocentric goals.  "I will lose 10 kg", "I will join a gym", "I will give up smoking".  Move forward two weeks and you've gained another 2kg, you've already skipped your last three gym sessions and you've decided having only one cigarette with a coffee is enough of a step this year.  What is the point?

Where are the "I will endeavour to make the world a better place for all, one small step at a time" goals?  They seem non-existent these days.  Maybe it's just that I'm getting old and jaded.  Maybe it's my severe case of bah humbug that prevailed over most of December this past year.  Maybe I just need to find my elusive happy place. I think it's a little like Narnia.  Except my wardrobe is shaped a little more like this.

If I am to make a resolution this year (and I can feel every fibre in my body rebelling as I type) it is to make a conscious effort to be thankful. 

Give me an hour of your time and I can list off the load of shiteness that has come my way over the last few years, until you too will wish to weep into your Corn Flakes.

Oh how hath thee crapped on me oh universe, let me count the ways. 

That's easy.  Finding reasons to be thankful is not.

So today I am starting by saying thank you to all those people who have come into my life over the past four years via this computer screen, most of whom I have never met in the flesh (and could in fact be a greasy middle-aged guy who lives in his mother's basement, collects action figures and can recite the entire works of Shakespeare in Klingon, or Vulcan, depending on his mood) yet make my little world a better place.

Friends from the Lands of Blog.

Blogging has been an unexpected pleasure.  Before I became a blogger myself I thought people who talked about their "internet friends" were sad little people who needed to get a life.  Now I realise how wrong I was.  Friendship comes in many forms and blogging can provide an honesty and openness that you would never find in the real world.  It truly is a community.  You can put yourself out there, warts and all, and find that you are not a complete freak (well, I guess that depends on your definition of 'freak'.  I'm sure there are many who have read my blog who are convinced that I am a complete freak.  But that's okay, and I'm pretty happy to embrace my freakdom at this point).  The world can seem like a lonely place at times, whether you are ill or not.  Blogging is like a life line that wipes away that loneliness and connects you with a whole world full of people and possibilities.

I am always surprised by who reads my ravings.  I can be a little out there at times.  I tell inappropriate and frequently unfunny jokes.  I am yet to have an epiphany or see the light.  My grammar and spelling are consistently appaulling.  Whilst I truly appreciate the love, I have to wonder, why are you reading people?

I can understand why someone else who has Bob, or another illness, may read what I write simply to be reminded that we all go through the same emotions, symptoms, or issues.  Being ill is a lonely business, and often a scary one.  Those who aren't ill can provide much appreciated support, but there is a certain level of understanding that can only be found with someone who is, or has been, in a similar position.  When you are silly enough to pick an obscure disorder, it is even more fantastic to find others who are in the same boat.  Though I do wish we could have picked the boat that sails around the Caribbean, rather the one that floats in the porcelain drain.

But there are also a large number of people who read my blog who don't have Bob or anything even remotely similar.  People whose lives are completely removed from my own small sphere of existence.  People who are truly lovely and provide support or laughs as needed.  People whose own blogs fill me with delight and much needed distraction.  People whose writing fills me with awe, or have me snorting my coffee onto my keyboard.  People who take the time to connect.  People who are genuinely interested. 

There are a small group of bloggers that I would truly class as friends.  Who make me laugh, and cry. Who give support in the good and bad times.  Who simply seem to get it.  That fall into that category of people I'd love to have a margarita with one day, or coffee, or margarita and coffee, really I'm not that picky.  They are not necessarily people you talk to every day or every week, but when you do it's as if you only saw them yesterday and have known them a lifetime.  There are many others that I would love to get to know better.  Most are from completely different backgrounds and countries to myself, but somehow something clicks.  Somehow you make a connection.  There are people out there who are truly lovely.  People who I would never have met if it weren't for the blogosphere, and for that I am thankful.

Friends from the Book of Faces.

When you have a weirdo disorder it's damn hard to find anyone else who has it.  When I was first diagnosed I hadn't even heard of Bob.  Here in Australia there was no support or information.  Then along came Facebook.  I was convinced by a friend (who is no longer in the picture) to get onto FB.  I thought she was nuts, but decided to take the plunge.  Now I can't imagine not being on. FB gets a bad rap at times, much of it deserved.  But when you are bed or couch bound, it can become your link to the outside world.  It has allowed me to meet people from all over the world who have the joy of Bob in their lives.  It has provided resources and a sharing of information that I otherwise would never have found.

When I read through my list of FB friends and their information, on the surface it would seem we would have little in common except for being ill.  We are all from different countries, different religious backgrounds, different careers, family situations etc.  Many who like Twilight (that's just for you Cyndi) or even (shudder) Justin Beiber.  Yet there is an underlying similarity that transcends the differences.  A view of the world and an ability to laugh in the face of unrelenting crap that is more of a bond than any of the other stuff.  A group of people for who there is no sense of TMI.  Where you can comfortably discuss the less glamorous side of illness that would make other people blush, or gag, as the case may be.  Where you can make totally inappropriate jokes about your health  that would have others wondering whether it was time to call the men in white coats, and it's okay.  Some of these wonderful people I have known from the start, some are newer friends, but all make this journey a little bit more bearable and I am thankful that I have found them.

When your body is out of commission and your mind is about all you have left (insert joke about my diminishing brain capacity), the internet provides an outlet and a way of interacting in the world that would otherwise be denied us.  I for one, am grateful for the friendships I have made and the laughs and support I have been given.

Big Love People.  Big Love.

(Next week I get to meet some fellow Bobettes here in fair old Melbourne as we head out for lunch.   Very excited to finally meet face to face).  

Cheers
The Very Thankful Michelle :)

Groove Armada,My Friend (2001)

"Free the Twins"

(source)

Friendships are a weird duck. Sometimes you become friends with people who are a mirror image of you or, alternatively, are the polar opposite in every possible way, and yet others who walk the midlands, part mirror part opposite. All of them serve a purpose in your life. Sometimes you don't know what that purpose is until years later when it's long gone. They come and go, ever changing with the flow of time. Beginning and ending when you least expect it. I've never really had a huge bang up fight with someone to end a friendship, they just tend to dwindle away. It always reminds me of that poem by T S Elliot, The Hollow Men (1925):

This is the way the world ends

This is the way the world ends

This is the way the world ends

Not with a bang but a whimper

One day you turn around and that person who was so much a part of your life is just....gone. Sometimes the friendships you thought strongest turn out to be the weakest; whilst those you least suspected become the real deal. Those little golden connections that happen unexpectedly, that make us realise that life is good and we're not alone in the world. These are the ones to nurture and treasure.

Bob has sent many of my "friends" running to the hills. Can't blame them I guess. Bob is a bit of a prick after all, but hey they get him for an hour or two I get him for life, suck it up you spineless gits! (Sorry still a little raw about a few people). I guess some people just have the constitution and moral fortitude of a wet tissue. I could bitch about the fair weather friends in my life (or no longer in my life as the case may be), but I don't want to give them any more of my time than they have given me. I will however, send one last big raspberry out into the cosmos to make contact with those fleet of foot "friends".

 Feel that raspberry, FEEL IT!!!!! .......................................... Ahhhhhhh, deep breath. That feels better.

Instead I want to spend my time giving a big shout out to those who are the gold in my life. One of the biggest and best surprises friendship wise, have been my physio chicks. The "Young Women's Group", or as we are now known the "Young and Gorgeous Women's Group" (see I'm not the only one with supermodel fantasies, though in this case there is no delusion involved!). After waaaaay too many excruciating months with my grey-haired homies, my amazing physio and social worker decided to create a group for young women in their 20's and 30's.

We all have Bob's in our lives, though their's go by names like Kev or Bazza or Dougie. All of us have hit a major bump in the road which sent us off into a ditch when we least expected it. Some of us have husband's and kids, some have a main squeeze, some are footloose and fancy free, and some are on the hunt to pick up. Some work, some don't, and some write stupid blogs. We are all so different yet have so much in common and it's like I found a big bunch of my long lost sisters that I never knew I'd lost let alone existed. We laugh, we cry, we bitch and we eat chocolate, and there is always coffee. Half an hour discussing the intricacies and virtues of brazilian waxing, this is not traditional physiotherapy! Oh yeah, we do real physio too, but the true therapy happens in the coffee room afterwards or chatting on the exercise bike or making testicle jokes on the fit balls.

This is rehabilitation as it should be. It's been a long hall for all of us and for some there is a long road ahead, you have to find a way to enjoy it, or we'd all give up. We like to think outside the square for our therapy. We've had parties, and pet therapy (my beautiful dogs, smelly but good therapy). Probably, the best example of our determination to enjoy and support each other has been "Free the Twins" day. The aim of this day was to support one of the girls who couldn't wear a bra due to injuries.

 So what do you do to support some one who has to be braless?

 What else, we all went braless (even our social worker, now that's dedication) in support (or is that without support) of her. Rather liberating really, and I'm sure it provided a years worth of excitement for some of the old guys at the hospital. I hope we weren't responsible for any coronaries that day. For some of us we got to reminisce about perky pre-kid boobs. For some we found that we had a new, previously unknown talent "musical boobs" which kept a groovy beat with each jump of hopscotch (our physio has a wicked sense of humour). For others we were amazed as our boobs did a Harry Houdini without support. (Don't panic though found them the next day in my Mr Berlie push up underwire, phew!). There was physio involved but for all of us it was about the laughter and sisterhood. Now this is therapy. This is friendship.

I never expected to find this kind of support, and definitely not at a physio class. My past experience with Merle and Beryl and Frank and the grey-haired gang, had not given me much to go on. However, I do thank them for expanding my knowledge on lawn bowls, support hose and the blue rinse and don't forget their lengthy treatise on what happened "back in [their] day...."! All jokes aside, I have been lucky enough to meet a great group of girls who just get it, no explanation needed. A group of girls who know how to laugh. Who make you feel normal in the most abnormal of circumstances, and have a true and deep appreciation of all things Johnny Depp!

So I say, shout it from the rooftops:

"FREE THE TWINS" girlfriends, and big fat raspberries to the rest.

Michelle :)