When the demons whisper.

(source)

I still apologise. I don't know why. Or maybe I do. I'm not sure I want to confront the reasons why. I'm not sure if I want to strip myself bare. And truly examine my internal dialogue.

Yesterday I found myself once again apologising. Whilst bent in two and hoping against hope that I could hold on long enough to find a public loo. Trying not to put extra pressure on my husband as he tried to both press through the traffic as quickly as possible whilst also adhering to road laws. I didn't see much of the trip as my head was on my knees and all my energy was turned towards avoiding vomiting in the car. As he wheeled me into the shopping centre I was still apologising. When I finally made it out I apologised again.

I heard his reply.

You don't have to apologise.

I heard it each time. Yet I kept on apologising.

There's a part of me that feels like I've failed him. That I'm not the woman he married. That our life isn't what he expected.

I mentioned the other day that he was my carer. He hadn't even thought of our relationship that way.

But I had.

Burden.

That's the word that flashes into my head on the days where again I am begging for him to find a toilet, or when I say we have to go because I can feel my body slowly collapse, or I send him to a BBQ alone while I lie on the tiles of our bathroom.

I don't need for him to say it. I feel it everyday. I feel it every cancelled event. I feel it every day I can't prepare a meal. I feel it everyday another medical bill comes through. I feel it when the great unsaid raises it's head. Our finances are screwed over by my illness and all it has drained from us over the last eight years. I feel it every time I have to say

Not tonight.

I apologise because I feel he deserves better. I apologise because I am so reliant. I apologise because I can't be the wife I want to be.

I apologise for the distance that takes up residence on the days where dealing with the challenges of my body over-ride every other aspect of life.

I apologise for changing our life.

I apologise for broken promises.

I apologise for not being good enough.

I apologise for being.

The issue is mine I know. But I don't know how to change it. I want more for him. He deserves more.

So I'll apologise again.

And again.

And again.

Michelle

Letting it go.

(source)

A friend posted a video today about a woman with cancer who's friends and family shaved their heads in solidarity and posed for a photo shoot. It was beautiful and I must admit that I teared up. The outpouring of love and support she received in that act was touching. But part of me was also sad. Sad because for so many in similar situations that level of support will only ever be viewed vicariously.

Serious and chronic illness is a litmus test of our relationships. The bonds we have with friends and family are laid bare and many come up lacking. It quickly becomes clear who values you and who doesn't. It quickly becomes clear that bonds of blood and time are not indicators of support. It can be a hard pill to swallow. And, as my reaction to this video reminds me, it is something with which I continue to struggle.

Part of me still wants and expects that certain people will step up. That they will suddenly change their behaviour and act even partway like the people in that video. If past behaviour is the best predictor of future behaviour I should know by now that it's never going to happen. But part of me still hopes. And old hurts are opened anew. You'd think at age 40 I'd have come to terms with those hurts. But instead I sit here musing over feelings that seem to be sitting just below the surface waiting for something to prompt them to rise again.

I'm not alone in these feelings. I've spoken with many other patients who experience the same hurts. Dysautonomia is not a casserole illness, even at the best of times. It's hard to understand, and has no cure. It can last for years and the deterioration can be slow and punctuated by repeated exacerbations. Sustaining the momentum of caring can be exhausting. And yet some manage. When I see others who are surrounded by numerous loved ones, lifting them up and going out of their way time and again to support them, it brings home that that is not my experience.

Some days I am better at dealing with the hurt and others it is hard. I wish I knew the secret of how to let those hurts go. To move on and focus only on the few who have stood the test of time. The true gems in my life. But part of me continues to gnaw on those wounds. To pick them apart and poke them till they bleed.

Illness is a lonely process. No one can share what you go through. But they can provide support. It doesn't take much. A phone call. A text. A silly joke posted on Facebook. A reminder that they are thinking of you, and that they care. A reminder that your life and your experience matters.

It is hard to understand when that doesn't happen. It goes against how I would act should our positions be reversed. When they have been reversed.

I am grateful every day for those who show they care, online and in real life. For those core people who make me feel loved and safe. Who hold my hand when I need it, instead of expecting me to hold theirs because my illness is a burden to them. For those who offer their concern and care and don't tell me how much of an imposition or hardship it has been for them. For those who know what I deal with and how I deal with it, and don't flit in only to tell me how to manage my illness that they nothing about, before flitting out again. For those who give me dedicated time rather than the scraps left over from their busy lives.

I'm going to work on letting those people and the hurt they represent, go.

I'm going to focus on the few who matter. The few who bring love and joy into my life.

I'm letting go of the rest.

I'm going to give myself 

the gift 

of starting the process.

To end expectations.

To end false hope.

This time
I'm going to heal

and shake off the burden

of hurt 

and disappointment.

I need to.

I have to.

I'm letting it go.

Michelle

Saturday Night

(A still from Edward Scissorhands* showing Burton’s vision of suburbia, source)

Picture it if you will. A Saturday night in a small town. A nondescript suburban house. Cookie-cutter brick. A collection of impractical right angles. The token attempt to differentiate with the others on the street. A swathe of green lawn. Wind blown plants set out in a rock covered garden bed. Unremarkable to the dozens that surround. Inside. A small beige ensuite. Coffee-coloured tiles. Glass and chrome. A large mirror sits on the wall, reflecting the scene unfolding before it. A couple. The man standing before the woman. He in shorts and t-shirt. She in red dress and grey stockings. Something about his stance suggests a mixture of concern and uncertainty. Something about her stillness jars.

She is sitting, bent in half on the hard toilet lid. Chest pressed to knees. The lights above beat down on the tangle of black hair on the back of her head. Pain-sweat sticks random hairs to the nape of her neck. She catches her breath with each heightened burst of pain. Cold smooth tiles anchor her feet to reality. She holds tightly onto that feeling, focussing on the texture below her heals. Overly controlled breathing, a futile attempt to control the situation. She continues to fight long after the battle is lost. Pain, misery, and lost dignity are thick in the air.

He is murmuring soft words of encouragement and comfort. Concern flickers on his face as his composure slips. Gone as fast as it appeared. Calm replacing worry.

She is unable to unbend, stomach pains increase. Partial paralysis of your digestive system is not what good times are made off.

He gently lifts her weak leg. Holding her trembling foot against his thigh as he slowly unrolls resisting compression stockings down her pasty, wasted legs. First the right, then the left. Her legs dropping to the floor. Each foot making a small smacking sound as they hit the floor.

She hunches over as he helps her take off her dress. A reflexive shudder with each attempt to unbutton and unzip. A gasp of pain. Their uncoordinated, combined efforts, would be funny, except for the ever present pain. A moment of fear intertwined with a wave of relief, as the fabric gets caught and is suddenly released as he gently pulls it over her head.

He places her pajamas, the soft, old, comfortable pair, kept just for days like this, on the marbled bathroom bench. The only height that she can reach from her bent position. He steps aside so she can have a moment of independence to dress herself. But not too far. He stands ready in case she needs help.

She emerges. Clothes rumpled and askew, but all parts covered enough. She stumbles, bent in half to the bed. Curling up in sheets as pale as her flesh. Pain and misery eclipsing the world around her.

He helps her sit up slightly at the edge of the bed. A contorted mess of distressed flesh. A fragile dam of tears.

He gently holds her shoulder so she doesn't tumble from the edge of the bed. Handing her the cocktail of pills one after the other. Waiting patiently for her extended hand to indicate she is ready for the next. Gentle words, encouraging, barely heard, between pain and concentration. But the feeling, the emotion behind the words, soak into her.

Shaking hands bring the glass of water to her mouth. A small moment of panic as a pill starts to stick. A small moment of relief as it manages to go down. A cycle repeated for each. Big, small, pill, capsule, an eclectic mixture of sizes and colours. Trying to swallow, when your limbs and body are at awkward compressed angles is not for the faint of heart.

Him, quite unwavering support. A rock. Her rock. Anchoring her tonight, and all the other nights that have become part of the pattern of their lives.

She retreats, shrinking, back down into the bed. Exhausted. Pain, always pain. Spiking and slowly reducing. But always pain. Tears held back by shear will and the strength that stands next to the bed. The strength who has stood next to this bed more times than they can count. The strength that has stood in waiting rooms, in hospitals, in clinics, room after room after room, each step of the way.

He covers her with the sheets. Gentleness out of keeping with what others see, but so familiar to her. He moves quietly out of the room. Turning off the light. Closing the door softly. A quick parting word to let her know he is close by if she should need anything.

She radiates unspoken gratitude for the presence beyond the door. She knows she can do it. That it'll be alright. Because of that presence beyond the door. The super power that is love, flows through the door to cradle her weakened flesh. And she can disappear into crumpled sheets and broken sleep as exhaustion finally wins over pain.

Another Saturday night done and dusted. A moment of greatness. In an unremarkable house. On an unremarkable street.

Love isn't grand gestures. It's not choreographed flash mobs. Diamonds, or dozens of roses.

It's quiet moments on Saturday nights in the tiny coffee-coloured ensuites, of everyday brick houses. It's a steady, gentle presence in the midst of pain and illness. It's the hand that holds another's when they sleep. Transferring strength and comfort in equal measures.

It doesn't shout. But is more powerful for the whisper.

Michelle

*Mr Grumpy took me to see Edward Scissorhands for our first date way back in 1991. I knew he was keeper right away.

Happy 19th Wedding Anniversary, Mr Grumpy!

I've always done things a bit differently. Whilst most of my friends were at uni, travelling or partying I took a different path. At 17, I met Mr Grumpy. By 19, we were engaged. At 20, we were married. At 21, I gave birth for the first time. By 25, I was a mum of 2. The media tells me this is wrong. That we are doomed to fail. Yet today as I type Mr Grumpy and I are celebrating our 19th wedding anniversary. 

(Good lord we were young)

I know we're lucky. Particularly, with me being ill. Divorce rates are bad enough, but add in illness or injury, and divorce rates sore. I am grateful everyday, when I read about the marriage breakdowns on the forums, that Mr Grumpy is by my side. I don't know if I could do this every day without him.

He's not just my husband. He's the father of my children. My lover. My best friend. And now my carer.  As corny as it sounds, he is the love of my life.

That's not say, it's all been beer and skittles. We've had ups and downs, and fought like cats and dogs. But in the end, and when it really mattered, we've always been there for each other.

The past six years that I've been ill have changed and tested our relationship in many ways. I'm not the person I was before. I know I'm damn hard work at times. Our plans for the future were turned upside down and life went into free fall for a while. Illness does that. It changes you emotionally and psychologically. it challenges your relationships with the ferocity of a pit bull. It changes you both mind, body and soul. Nothing can prepare you for the reality of that challenge.

And yet despite it all, he goes out of his way to make me feel loved and cherished. He looks at me like I'm still 17 and makes me feel worthy and special, even when I feel it least. Whatever has happened during the day, no matter how sick I am, when he holds my hand as we go to sleep I never fail to feel safe and loved. What more can you ask for?

So happy anniversary Mr Grumpy. The road may not have been quite so straight as we planned. And there may be a bucket load of pot holes. But I am glad you are by my side as we stumble along.

I have written about Mr Grumpy a few times over the years. He's a pretty good guy when it comes down to it.
Chick Flick Moment
You Get Less For Murder
Twenty Years

Michelle :)

Harley & Rose, They Just Lost It For A While.

This post was originally written for 12 More Pages in 2010.

Relationships are hard work, just look at the ridiculously high divorce rates. Hollywood and television have indoctrinated us to seek out the fairy tale, to find our soul mate who will make us complete, slay the dragons and hold us tight for all eternity. Unfortunately, life isn't like the movies (not that I still don't wish I was Juliette Binoche in Chocolat with Johnny Depp turning up on her doorstep at the end of the movie; but hey, we're all entitled to a bit of fantasy every now and then). Relationships are filled with ups and down's, even with the best of intentions and the most perfect of circumstances. When you add a chronic illness to the mix the strain it places on a relationship can be overwhelming. Any little problems that existed beforehand tend to be amplified by the stresses associated with a partner's illness.

We agree to “for better or worse, in sickness and in health” but it is very different when you are actually faced with the situation. Whether you are the person who is ill, or the significant other who is well, what we imagine we can deal with and what will occur should a partner become ill, can bear little resemblance to the reality. Chronic illnesses like dysautonomia, can't be contained in a nice 50min House episode. Yes, House may give you a diagnosis and a drug, but unlike the dramatic life-saving, experimental brain surgery that saves the actor in the last 5 mins of the show, dysautonomia and it's impact persists long after the credits role. In fact, it can persist from Episode 1 Season 1, all the way to Episode 48 , Season 50, often with little change. No one makes a TV series like this for a reason. How does the audience keep interested and maintain compassion for the character who is permanently ill. It all becomes boring, fatigue sets in, and ratings drop. We are programed to expect a resolution to the 'crisis'. Unfortunately with chronic illness the 'crisis' may never end and can become a permanent state of living.

Being chronically ill dramatically changes intimate relations. Both individuals change, and the nature of roles within the relationship change. For the person who is ill your self-image is dramatically altered. We may see ourselves as the nurturer or provider, a leader or the go-to gal, chronic illness doesn't care . Hell, Cosmopolitan and the like continually tell me I can and should be able to do it all, why would I think otherwise. When you are chronically ill you can no longer fulfil these roles as we have them laid out in our heads. We are forced to re-examine who we really are and our place in our relationship.

It's hard to love yourself when your body betrays you and when you cannot participate in life as you want, and feel, you should. If your own self-image is so low how can you have anything to give to a relationship. How can you support your partner when you are unable to support yourself. Doubts set in. You begin to wonder why your partner would even want you when you don't even want yourself. How do you maintain an intimate relationship when you are permanently exhausted.? Nausea and dizziness are hardly conducive to getting 'in the mood'. By that I don't necessarily mean sex. The general day-to-day intimacy of simply touching, hugging and kissing, the emotional and intellectual intimacy, are often difficult when you are feeling so ill you just want to lie down in a corner and cry. These feelings begin to colour your interactions. You interpret the actions or words of your partner in light of your internal dialogue, and react similarly. Your partner has no idea why you are acting the way you are and misunderstandings can start to build.

Equally, if you are single and want to find a partner, it is easy to wonder what you have to offer to someone else, or why anyone would want to be with you and all your chronic illness baggage? How do you explain such a complex illness without making a prospective partner want to run for the hills? You cannot participate in the normal dating or relationship activities. Going to the movies, out to dinner and parties are often not an option. You can feel that you are condemning your partner to a life of isolation. You feel a burden. You attribute your feelings to your partner when in fact they may never have even considered you or the relationship is that light.

For the partner who has to watch their loved one so ill, it can be over whelming and confusing. When you love someone you want to be able to help them, you want to take away the pain. It is common for care-givers to feel impotent, or overwhelmed by the situation. With an acute illness, eg a knee surgery, you know there is an end. You can sustain the care-giver role because you understand it and know that in a couple of months the person will be back to their old self. When there is no predictability, no path, no respite, as with chronic illness, care-giver fatigue can set in. Burnout is common in those who care long term. It can be hard to understand this as the sick person. I know at times I have thought, “I'm the one who's actually sick. 'You' need to get over it and grow a pair”. It's hard to have compassion for others when you are permanently ill yourself. Even knowing logically that it is hard for my family and friends I often don't have the energy to deal with their issues. When it is your partner you do have to make an effort to understand their feelings and frustrations, as this can help the relationship and you in turn. Sometimes you need to prioritise your relationship as we do other things.

Well partners can fall into certain roles which may, or may not work. They may become the 'hands-on' carer who is involved in every step. Alternatively they may become 'over-protective' and wont let you do anything. There are also those who withdraw from the relationship because they don't know what to do or how to cope. Many carers don't want to admit that they can't cope or don't like the fact that their partner is ill. They may feel guilty because they feel their partner is a burden or that they are no longer the person they married, and don't want to feel that way. Again this colours how they interact with the sick person. In both cases, partners may feel that their feelings are wrong and that they are abnormal, when in reality they are normal reactions to an abnormal situation.

In so many cases both partners are feeling, lost, alone and frightened but don't feel they can tell the other one for fear of burdening them. Or they may be scared that giving voice to their fears will make them real. If you don't talk tensions can quickly arise and begin to fester. A simple misunderstanding may end in a huge argument. As a sick person I know I hate being fussed over. If my husband were to fuss over me and always treat me like a sick person it would change my opinion of him because he wasn't meeting my needs. I would wonder why doesn't he know I'd hate that. I would be more stressed and that would make my symptoms worse and it would become a vicious circle. However, if I don't tell him how would he know? It can be hard to be open and honest in a relationship at the best of times, and chronic illness is frequently uncharted stress-filled waters for both parties.

Dysautonomia is a particularly difficult disease to understand and explain. The unpredictability of symptoms and the way it impacts on our lives is hard for even us to understand. One important step in helping a relationship is to help educate your partner. Encouraging them to go your appointments or asking your doctor to talk to them can be particularly helpful. If your partner can understand that you may have to cancel a dinner at the last minute due to your symptoms, it can reduce the stress considerably. Conversely if your partner thinks you should “just get over it” and makes you feel 'bad' or guilty for ruining your dinner plans, stress levels can spike and make your overall health and relationship much worse.

It is important to re-negotiate your roles in the relationship. You need to set aside a time to talk, not wait till you are both upset and in the middle of a fight. In many ways this is why seeking out a professional for counselling can be the best option. No matter how much we might wish it otherwise, dysautonomia involves disability. We can no longer do it all. We need to sit down with our partners and work out who is going to do what. It might be the simple things such as who makes dinner. Or it might be the complex things like either earning a wage or organising the bills. Before being ill I worked and took care of 90% of the kids and household chores. Now I can't work and my husband and kids have to help out more. We had to re-negotiate the way things worked. Part of that process was my husband becoming aware of how dysautonomia affected me day-to-day and understanding that I now need to strictly prioritise things. We certainly don't always get it right but we are slowly getting there.

It's important for both partners to understand that a good relationship is not based on how many times you go out , how clean you home is, or if you have the latest fashions. Without fail, good relationships have good communication and find enjoyment in each other regardless of where they are or what they are doing. It is more important to prioritise the incidental intimacy of sitting on the couch watching TV together rather than going to a work BBQ because it is expected, and then being laid up for a week. It doesn't need to be complex. It can be simple things such as resting for the day, rather than doing loads of washing, so you can go out for dinner for an hour with your partner. Or going twice a year to a Gold Class cinema with foot rests and recliners, rather than failing at a normal cinema 20 times.

Most of us who are ill realise we need to have an non-health related outlet to maintain our sanity. It is equally important for the well partner to have an outlet. As the sick person we are more likely to be offered counselling or join a support group, this isn't always offered to the partner. The outlet doesn't have to be a formal support group. It may be participating in a sport or social group. Often just being in an environment totally removed from home and illness can be enough. For example, Saturday's my husband plays sport all day and then goes to the clubhouse after for a beer and 'man time'. It's his way of letting go of the stress and rebalancing. It helps keep him sane (and me) and in turn means he is more relaxed and switched on when he gets home.

In reality the things that you need to do to support your relationship when you have a chronic illness are the same as in any other relationship. If either partner feels unsupported their will be issues. If the partners don't talk there will be issues. If you don't re-negotiate roles over the years there will be issues. Having a chronic illness simply forces the issue and magnifies any existing problems. It is not easy either starting or continuing a relationship when one partner has a chronic illness, but it is possible with work, and accepting that there will be ups and downs. All relationships are a work in process. Chronic illness just gives us a different challenge.

“life is a bitter disappointment
she would hear young Harley say
if you find something more important
I will not stand in your way

like static on the dial
a look come back in style
Harley and Rose
they just lost it for a while”

(“Harley & Rose”, The Black Sorrows song :1990)

We all lose it for a while, but more importantly we mostly get a chance to find it again.

Cheers

Michelle :)

"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 :)