World Rare Disease Day 2010

I've decided to be a bit more serious today.  Shocking I know, but this is a topic that deserves some serious recognition.  Even if you decide not to read this post please click on the link below to find out a little more about Rare Disease Day.

More Information

What is a rare disease?

It is estimated that there are 6000 to 8000 rare diseases in the world today

Characteristics of rare diseases

• Rare diseases are often chronic, progressive, degenerative, and often life-threatening
• Rare diseases are disabling: the quality of life of patients is often compromised by the lack or loss of autonomy
• High level of pain and suffering for the patient and his/her family
• No existing effective cure
• There are between 6000 and 8000 rare diseases
• 75% of rare disease affect children 30% of rare disease patients die before the age of 5
• 80% of rare diseases have identified genetic origins. Other rare diseases are the result of infections (bacterial or viral), allergies and environmental causes, or are degenerative and proliferative.

You have what? How many times have I heard that? For those of you who have read my blog for any length of time, you are well aware that I have demonstrated the intellect of a wet tissue by picking a disorder that no one has ever heard of. And I don't just mean people in the general community, even most doctors haven't heard of it, don't know how to recognise it, how to test for it or how to treat it. Good old Dysautonomia the bane of my existence. There are some more common forms, but I have been stupid enough to pick a rare version of this obscure disorder.  Despite three years of testing I still remain a medical mystery, the proverbial "Horse With No Name".  Collecting new and exciting symptoms and comorbid diseases along the way.

I thought getting in to see the top specialist in the country (or the Wizard of Oz as I like to call him) I would have an answer, but no, that would be too easy.  Instead I got the line you always hope to get from your doctor (yes that's sarcasm):

"I have only seen 1 or 2 people in my entire career with your symptom profile".

Also from my normal cardio:

"you may have Michelle's disease"

Or from my neuro:

"you really are a medical mystery aren't you?"


Then there have been the miscellaneous words like:

"special"

"unique"

"interesting"

I've also been told (repeatedly) that I may have Pure Autonomic Failure (PAF).  What's so rare about that?  Well PAF generally occurs in males over the age of 60, not 36-year-old women.  So there you go.  Not only am I not an 80-year-old woman, I may in fact be a a 65-year-old guy who pees like a horse and can't get it up.  YAY!  Maybe I just need a viagra.

There are no answers when you are odd.

Will I get better?

"I don't know".

Will these tablets work?

"I don't know".

Where to from here?

"No idea".

So you live your life with the knowledge that you are getting worse and the reality that it doesn't look good.  Times like these tequila sounds good.

I'm not alone in this.  There are many obscure diseases and disorders around, with some that are unique to 1 or 2 people in the world.   Gene deletions or multiplications in a variety of forms.   Some caused by viruses or bacteria or unique environmental contamination.  Idiopathic (doctor speak for I have no idea why you have it) disorders.  Some little quirk of nature that creates a unique illness.

Unfortunately when you have a rare disorder there is little funding for research or treatments.  In many cases the top specialists are flying blind, using trial and error to treat their patients.  When things are rare it is hard to develop a standard treatment program. Governments look at the big picture, so funding goes to those disorders that affect the most people.

Rare diseases don't have the PR machine of other disorders eg Breast Cancer or AIDS. Government programs often don't have categories for these disorders, so patients find it extremely hard to get financial aid or access to rehabilitative programs.

World Rare Disease Awareness Day is a chance to bring attention to these hidden diseases.  To remind people that they exist and to give them a face.

Whether you call it Rare, Special, Unique, or Medical Mystery, it can be a hard road to travel when you have the disease no one has heard of, is difficult to treat, understand or explain.


Cheers
The Freak Michelle :)

Swoon.

The last week (well 'weeks' if I think about it, but that's just plain old depressing) has been a health shit fight.  My body has decided to demonstrate just how incompetent it is on the whole functioning front.  My BP has been all over the place as has my HR.  There is no consistency, no rhyme or reason for the crappapaloza that's going on.  It's not like I can say it was particularly hot on Thursday and that's why I don't recall from early afternoon till the next day, because it wasn't that hot.  Similarly, why did my body go arse up whilst I was driving, so that my panicked eldest had to tell me to just drive straight home from his bus stop, because I was green and my face "wasn't quite right"? 


Most annoying, troubling, for me is that I have gone back to the swoon or the 'less than one second till' swoon, whereby I barely get enough time to lie down to avert full swoon mode.  This just isn't part of the plan and I wish that my stupid body would get with the bloody program.  Yes I used the word swoon.  I much prefer it to the inadequate terms like 'passing out', 'fainting', 'blacking out', syncope or my personal least favourite "simple faint".  Simple faint my arse.  That term could only be thought appropriate by people who have never experienced the delight of a 'simple faint'.  Unlike these inadequate words, 'swoon' just screams 1920's silent movie glamour and is much more palatable.  If I have to do the whole syncope thing I'm picking my descriptor.

I do quite like this modern day version as well (well more the clothes really) All very Mad Men.

Amy Neunsinger

Unfortunately the reality is more likely to look like this:

(Ahh the elegance).

In reality I know I shouldn't be complaining.  For some, swooning is an every day event or for the unlucky few an hour to hour phenomenon.  Luckily for me I'm an occasional swooner thanks to the meds.   I mostly do a sort of half-hearted piss-poor excuse for a swoon now.  Yep can't even do that right, my body is such a useless douche bag.

Early on in the piece I had no real warning.  It was case of me standing in lounge room.  Then me waking on the floor going 'WTF'????  Meds have changed that thankfully.  Now I get a lead up.  What's known as pre-syncope.  This is the delightful state of hot flushes, greying vision, nausea, muscle weakness, pasty chic with a touch of vomit green, confusion, lack of coordination and so on.  Unfortunately this lead up is pretty much my permanent state now.  The only difference being the symptom severity.  But these last few weeks my lead up has shortened. 

I knew last week things were not looking good early on in the day. 

(Hmmm should I stay home and try and rest. No.  Go out and do lots. No problem).

But at least my heart rate was out of the low 40s.  I had hoped that the day would improve.  Looking back I realise the lack of blood flow to my brain was probably begining to affect my thinking.  I managed to get to my friend Kezza's house, luckily only 5 mins away.  I managed to stay for a couple of hours chat and have coffee.  I should have realised that the fact that it took 3 of us to create a Wii character for Wii Fit that things were not exactly shining brightly. Problem was that this was really the last thing I recall clearly that day.

I don't really recall driving home, picking up the kids, shopping or getting home but I must have done it all as I had 2 kids winging like usual, there was food in the fridge and I was KOed on my own couch.  But that's it.  I know I ended up in bed but I'm not sure how.  I took my BP but I don't recall pushing the button.  Luckily my machine records your last level.

 (Bugger.  Pretty sure I may have been away with the pixies by this stage).

Call me crazy, but I have a feeling that this could be reason why I don't recall the rest of the day.  And they keep saying high blood pressure is the problem.  (They also say salt is bad.  Unless you are a freak like me.  Obviously Bob is the king of Bizarro Illnesses).

Unfortunately it was Ground Hog day, yesterday.   I kind of remember David telling me to get out of my dress and put on my pjs, but I could be wrong, I'll have to check.  I do know I woke up in pjs so I guess it happened at some point.  WTF body!!!  I am on a cocktail of drugs to stabilize my BP, I scull water and eat so much salt I could pretty much double as Lot's wife, and this is what I get.  Stupidly I also have other days where my BP does stupid things like 140/115.  Or days where it is 100/92, so I have no pulse, which gives a whole new to the term 'looking like death warmed up'.  I have also had periods with a HR of 150+ just sitting on the couch.  Who says you can't get a work out whilst watching TV?  Mind you one of those times I had just been watching Jensen Ackles on Supernatural so maybe that's the true cause. 

The result of this is I am exhausted.  As I sit here writing I am feeling like a space cadet.  I am pretty much the poster child for "Lights On No One Home".  My head feels like it may explode in the next 3 seconds, my muscles are jelly, I am uncoordinated and keep hitting walls, tables, fridges etc, I really wish they'd stop jumping out at me.  I also put my saucepan of milk on the stove this morning, only problem was I forgot the milk part, and turned it on anyway.  Mmmm nice warm air to put on my oats, tasty.  I have a series of 'mystery' bruises on my legs, arms and feet and I have no idea where I got them.  So now I have purple and black legs, sexy!  I am also starting to rue the day we picked a house with 3 fights of stairs, which leave me breathless.  Now it's just the week of recovery, ie back to normal crappness. Swooning sucks.

It may be time to send my body a 'Dear John" letter.  I think it'd go a little something like this:

Dear Body,

You are a dick.

Go self fornicate.

Cheers 

Michelle.

Ok so I may be a little shitty today.  I've had a crappy week(s).  I did hear that Bob used to be called 'Irritable Heart', and I know I also have an "Irritable Bowel", so maybe I'm just plain old Irritable.  I'm sure when I read this back in a few days I'll be horrified by my poor attitude but hey at the moment there's no blood going above my irritable shoulders so the old brain filter is on the fritz and I've pushed the publish button.  I'm pretty sure this is the blogging equivalent of drunk dialling.  So I guess I should leave it with "I luvs yas all. I do. (hic) I really, really (hic), really love you. I do.  You're the bestus".

Swooning Michelle :)

I think I may have to invest in a Fainting Chair.  I've always liked them.  Maybe that was a sign of things to come.  They were very popular in the Victorian Era for all those poor corseted women, with such small waists they made Posh Spice look like Barbar.

What's For Dinner Mum? (12 More Pages Guest Post)

Ahhh... the joys of domestic duties when you have a chronic illness. Sometimes you have to laugh, even if the laughter is hysterical. I'm guest posting on 12 More Pages again this week. Remember to check it out for some great Dysautonomia information.

Ok I've decided to jump right into the day-to-day practical issues that haunt all of us with Bob. It's these bland and normal daily chores that often seem to cause the most grief. Making dinner. Who would have thought it could become such a drama. Yet each day when that time rocks around and that simple sentence is spoken aloud “What's For Dinner Mum?”, it's just another reminder of the obstacles we have to face. I'm sure someone without a Bob in his life would wonder at the ability of such a boring daily chore to arouse such feelings of dread, guilt and hopelessness. For those poor buggers who innocently utter these words please note that you may have your spleen pulled out through your left nostril on occasion. It's nothing personal. But those four little words can be like fingernails on a chalk board some days. So the question remains, What is it about dinner that does this to us?

The time of day: ok I know for most of us mornings are like diving head first into the bowels of hell. There's something about Bob and mornings that just doesn't mix. It's the whole oil and water thing and I'm sure Bob is one of those trans-saturated-clog your arteries kind of fats. But the late afternoons and evenings can be just as bad. By that time you've spent very available drop of energy going to work (if you still can), getting kids to and from school and after school activities, attempting household chores and generally just making it through the day. The idea of then having to prepare a meal can feel like trying to scale Mt Everest in your Sunday Best. Where's my Tenzing Norga?

(Read More...)

How To Spot A Sick Chicken.

I'm pretty inured to the whole "you don't look sick" line. It all becomes white noise after a while, though I will admit to often thinking, "well you don't look like a knob either", but I generally have enough tact to keep that to myself. Well sometimes. According to my loving family, I occasionally have a bowl of bitchy for breakfast, and my Mother Teresa persona is replaced by a large dose of bitch with a side of cow. Usually, this has something to do with a lack of coffee, and really if you speak to me pre-caffeine that's your own fault.

[Image: A Vintage image of a woman holding a cup of coffee. To the right of frame in black text it reads: I haven't had my coffee yet. Followed by red text which reads: Don't make me kill you.]

In many respects, I'm over what other people think. I have enough on my plate without taking on other people's issues. But recently my happy-hippy, zenness slipped. A few weeks ago I was informed by a relative who shall remain nameless (but we both know who you are and you should know better than to piss off a person with a blog) that, "You can't expect sympathy with that face".

For some reason, the bluntness of this statement hit me like a full on sucker punch to the gut. I was lost for words and just stood there with my mouth hanging open. What was I supposed to say to that? Would I have been within my rights to pick up the coffee pot and send it flying across the room at their head? Was it okay that I had a whole montage of Looney Tunes-inspired cartoons going through my head? Think lots of anvils and frying pans.

The whole idea that I was asking for sympathy was like nails on a chalkboard. I'm pretty sure the effort involved in holding my tongue, and coffee pot, did leave me with an odd twitch and a vein pulsating out the front of my forehead. But other than that I was cool as a cucumber.

Anyone who has ever read my blog or spoken to me for more than 3.2 seconds knows how I feel about the whole pity issue. I HATE pity, it sucks out your soul like a big hairy-arsed incubus (or succubus for those of you of the male persuasion). It is disempowering and frames you as a victim. If you are going to give me pity then you might as well just give me a chilli enema or poke me in the eye with that bastard offspring of a fork and spoon, the spork, and why don't you make it rusty while you're at it. To you and your pity, I say a big fat Bite Me!

Now, this isn't to say that I don't hold my own private pity parties every now and then. But its a very exclusive invite list of one, and may involve chocolate, hiding under my blankies and watching bad sci-fi or horror shows (yes I know the geek alert just went off, but until you've watched a shockingly bad sci-fi or horror show you don't know what you've been missing. If you haven't seen The Blob circa 1988 you haven't lived. The horror of Kevin Dillon's (Entourage) hair alone, is worth the effort of tracking it down). My pity parties are all infected with the Cinderella effect, so they are short-lived. After a couple of hours, I wipe the snot off my face, pick up the mounds of soggy tissues and chocolate wrappers, suck it up and move on.

[Image: a coloured still from the movie The Blob (1988). It shows a white man with glorious 80's curly long hair and a leather jacket to the left of the frame, he looks shocked. To the right a white woman with dark hair and wearing a cream top holds onto Matt Dillon looking scared.]

So in case, I haven't been clear:

NO PITY ALLOWED

So once again I am forced to revisit the question of "what does sick look like"?

If I am sick should I look like this?

[Image: a movie still from The Exorcist (1973). A close up of Linda Blairs face after her demonic possession, pale, scary, horror]

(The Exorcist is one of my all-time favourite movies. So happy when Linda Blair was on my favourite horror eye-candy show Supernatural).

Would I then appear legitimately sick? Currently the most I get is a "gee you look tired". Mind you some mornings when Bob is beating the crap out of me I would be grateful to look as well as young Linda. Problem is when I do look sick, I am usually too ill to go out in public. Conversely, if I'm out I'm feeling 'better', by which I mean instead of death warmed up, I feel like that little bit of goop you get in the corner of your eye in the morning, I look okay. I've most likely brushed my hair and put on some BO Basher, no guarantee of the dreaded shower or clean clothes but there's nothing a few squirts of Chanel No. 5 can't cover.

Not looking sick enough can create many problems. Recently a friend sent me a link about a woman who lost her health benefits because she appeared too happy in her FB pictures and therefore was deemed to no longer have Severe Depression. Damn that brain-fogged woman for trying to break through her depression to attempt some sort of life instead of succumbing to the expected levels of overwhelming hopelessness. It's a miracle. One smiley day and Depression is cured. Maybe I should burn all the pictures of me standing up and wear a disguise when I manage to go grocery shopping? Obviously, the trolley of milk and Green & Blacks mean I'm cured, just ignore the puke bag and salt sachets sticking out the top of my handbag.

Damn those invisible illnesses. I couldn't get a good illness where I look like crap, no I'm such a loser I picked dysautonomia. Way to go Michelle!

Now I did think about getting "SICK" tattooed on my forehead, but I am a wuss. I can't even pluck a rogue eyebrow hair or take off a band-aid without screeching like someone is cutting off my leg. So the tattoo plan has gone out the window. I think I need to accessorise. I'm sure that just like the right accessories can make an outfit, the right sick accessories will enable people to easily pick me for the sickie I am.

So what kind of accessories do I need to purchase and where do I get them? Is there an e-store called Sickies R' Us? Do Maybelline or Napoleon put out a line of anti-bronzers to give you the pasty sick tint? Where to start? I decided I'd google "What does sick look like?", in hopes of finding an answer to my problem. Alas, there was no answer to my question. I could find out what a sick fish looks like, or a hamster, but no answer for a sick 36-year-old woman. Just when I had given up hope I had an Oprah light bulb moment. A ray of sunlight fell upon my computer screen and I found the answer in the form of the humble chicken.

What does a sick chicken look like?

• A sick hen will usually be listless, not moving around much.
• They often sit quietly with eyes shut or partly closed.
• They may move slowly and possibly stagger or lose balance when walking.
• They do not run away when approached, they often just drop down into a crouch and wait to be picked up.
• They may have mucus around the eyes and beak.
• The vent area is often crusted and dirty (ok I did giggle at this one).

Thank you Wiki Answers, once more you have saved my life.

So there you go chicken/human its all a bit the same. Your hen may look pretty on the outside, sexy feathers and all, but look a bit closer and she is just not quite right.


[Image: a black and white cartoon of a chicken sitting in bed with a tray and bowl in from of them. Next to bed, another chicken wearing an apron stands. The text underneath reads: Quit complaining. For one thing, chicken soup is good for a cold. For another, it's nobody we know.]

So if next time you see me and my vent is a bit crusty, you will know with complete certainty that I am sick.

The clucked off 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 :)

A Word From Our Sponsor X

What I am about to confess may be shocking, so you may want to brace yourself, pop a Xanax, and grab a bottle of "Mummy's Little Helper" * and chug.



My name is Michelle (dramatic pause, deep breath).........

..........and I am a little slow on the uptake.



I know you are shocked because I am always such a sharp, organised, finger-on-the-pulse kinda girl. Yet despite my keen powers of deduction, I managed to miss my own personal blogging milestone.

I have only just realised that I made it to 50 posts and cracked 3000 views, since September 2009.

Surely there's some application on Blogger that ensures fireworks, marching bands and streamers, the second the counter clicks over. Now I know I am an infant in the blogging world, barely able to hold my own head up and not yet able to roll over, but I'm excited, Big Kev excited.

Now I'm not saying that they have all been quality blogs. I'm not even suggesting that they were literate. I know many are grammatical abominations and most verge on a manic outpouring of verbal diarrhoea, but I got there. I hit 50 and that requires dedication and perseverance which are not something I am known for. I can't even commit to continuing a daily routine of cleansing and moisturising for 50 days. So I'm excited for me and am doing my own little Rickie Lake dance in my threadbare, but oh so comfy pjs, "Go Rusty, Go Rusty".

When I started this blog it really had no direction. It was going to be a place to vent my stress and insanity. I thought after the first week I'd grow bored, move onto my next chocolate bar and pursue my dream of becoming America's Next Top Model, (cause they make 36-year-old, Australian, saggy-boobed housewives top models right?). Yet here I am still taping away, exposing my madness to the world. I'm still waiting for the inevitable knock on the front door where either the men in white coats complete with over-sized novelty butterfly net, will be waiting to take me away; or the literature police will be standing there, hammer in hand to break my fingers, so I that I may never again befoul the blogosphere with my key strokes.

I had no idea anyone would ever read my ramblings. I thought I may get a handful of pity reads from friends or family (this is somewhat like pity sex where you are thankful for the effort, but really it's a bit 'meh'), though even that was never guaranteed. Yet I look over to the left and there are actually photos under the 'Followers' section and most of them are people I have never met. I am shocked that they are there. I keep glancing back over to make sure I'm not hallucinating and that they are real. I have no idea how half of you even found my blog. Was it word of mouth? Were you totally bored one day and typing random words into the 'Search' on Google? Was it written on the back of a grotty public toilet door next to "Pookie Luvs Shania" and "Call Bambi for a Good Time"? I'd love to know.

Now I'm realistic enough to accept that some of those photos probably represent people who joined but never read again, and just find the effort required to click 'unfollow' overwhelming. But hey I'm loving every single one of those little photos regardless. Would it be seen as patholoical weirdness if I were to print them out an carry them in my wallet in place of photos of my children?

The fact that the counter has clicked over 3,000 in the last 5mths amazes me. In fact I am rather lost for words. Thank you so much to everyone one of you for your little clicks. It makes a rather strange and unkempt hermit woman feel very warm inside.

For those who have taken the time to leave a comment or send a message I'm sending you big air kisses via the ether. The snazzy double-cheeked European kind. Though if that's a bit much, or you're afraid of internet Swine -flu, I can always give you the traditional Oprah double-hand hug, otherwise known as the "stay away and don't touch me you freaks" Oprah hug, reserved for non-celebrity guests. If you're a blogger you'll know that little burst of excitement you feel every time you see that someone has commented. You don't write for comments, but you treasure every one. I always try to respond, but Bob sometimes interferes with the plan. For those I've missed know your comment was truly appreciated.

So big love to all who taken the time to read, follow, comment or visit. THANK YOU.

I thought I would take this opportunity to let you now about a couple more of my favourite bloggers. Both of these ladies are fantastic, intelligent and wet your pants hilarious. (Hmmm...maybe I should hand out a free Poise pad with each review).

• The Vegetable Assassin: Veg, or The Vegmeister as I like to call her (not that she knows this or is really aware of the existence of an obscure mad woman from Australia, who nearly pees herself whilst reading her words. Too much information?), is a woman after my own heart. If sarcasm were a religion, then she would be my goddess (okay that may sound a little stalker creepy, I'm not really freaky, really). She is one who fully appreciates and uses sarcasm as an art form. Every time I see a new post in my blogroll I know I am guaranteed a good belly laugh with a touch of guffaw, which frequently scares the crap out of my dogs. She is irreverent and intelligent and always entertaining. Whether its her love of cake, vendiagrams and the humble VW or her hilarious adventures with an evil mouse or her addiction to a certain diet beverage, there is something for everyone. She is also the proud owner of one of the supreme blogs of the rant known as Central Digit, enter at own risk! The Vegmeister is also one of the rare bloggers who takes the time to respond to each comment. And not just a simple thanks. Each response is personal and unique and witty. You gotta luv that.

• Calling People Names: I have made reference to the wonderful Aly in previous posts. I love her writing. Again she is a blogger who ensures laughs. I have snorted coffee on my keyboard and I'm pretty sure I peed a little reading some of her posts. Whether its the drama of her childhood or her sexual escapades she is one funny and intelligent gal. Like the Vegmeister she is the owner of another blog, Alyce In Wonderland filled with beautiful and thought provoking poetry. She also has one of the hottest voices I have heard in a long time as evidenced in her recent vlog. For liquid, warm honey, sensuality, you can't beat that Southern drawl. Aly is also a responder who makes her readers feel treasured and you can't overlook that.

So a couple of ladies to keep you laughing no matter how shit your day may be.

As for my health.....well I think that can be best expressed by the Blood Sweat and Tears classic, 'Spinning Wheel':

What goes up must come down
spinning wheel got to go round
Talking about your troubles it's a crying sin
Ride a painted pony
Let the spinning wheel spin

(Ok so I don't get the painted pony part either, but there is a slight chance they may have been smoking some 'medicinal' marijuana, for nausea of course).

So a big thank you to all my readers you are tops. I hope you'll find it in your heart to take pity on the poor, pasty, brain-fogged and gravity challenged woman of Oz, and return to read more of my rambles.

The chuffed Michelle :)

*OK for the uninitiated, "Mummy's Little Helper" is wine. Every mummy needs a little help every now and then. Besides the way I look at it, wine comes from grapes and therefore can be classed as one serve of fruit.

Frankie Says Relax: 12 More Pages Guest Post

Guest Posting on 12 More Pages this week. Head on over for the full article on progressive muscle relaxation. Don't forget to check out the other information on Dysautonomia.

Remember the sagacious words of Frankie Goes to Hollywood in their iconic song “Relax”. OK so the connotation is not quite the same, (wow I was so innocent back then. I thought they just wanted us to sit back and smell the roses. I couldn't understand why my mum wouldn't let me get the record), and I am so showing my age, but I loved those t-shirts with their pithy message. Obviously after my last blog (“Serenity Now”) everyone will now be living Frankie's dream of relaxation and have achieved their personal Nirvana. Life is bound to be filled with lolly pops, kittens and an unlimited supply of dark chocolate just when it's at that not quite solid not quite liquid, level of gooey goodness (well the later may be my own personal idea of bliss, but you can insert your own blissful fantasy). We have all learnt to breathe our way to serenity, and that my friends, is an award worthy achievement when you live in a permanent brain fog. Now just in case any one is still having difficulty finding their bliss, here is an alternative, or addition as the case may be, you can have up your sleeve for the days when your serenity begins to slip.

Progressive Muscle Relaxation:

I like progressive muscle relaxation as it's yet another reason to commune with my couch. I never realised they had memory foam back in the early 90s when we bought it, but that perfect mould is there to welcome me each morning. At its most basic, Progressive Muscle Relation simply involves the slow and progressive tensing and releasing of muscles. Most commonly it begins at the head and works down to the toes, but this can vary. If you have a bad back, neck etc you may want to double check with your doctor about doing some of the movements. I know it's obvious but after the MacDonald's Hot Coffee Litigation I just have to add, if it hurts STOP! Also peanut butter may contain peanuts, and milk may contain dairy products (I love today's product warnings). Now you may also be concerned that you will look a little bit mad, especially doing the facial exercises, but this is the price we pay for bliss. Just remember not to hold it too long or the wind may change!

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