Perspective: DARE Re-post.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

I was taken aback.

Am I really that sick?

Am I really experiencing something so horrible?

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

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

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

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

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

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

Cheers
Michelle :)

Michelle VS The Brain Fog

It's one of those weeks where Eunice has taken leave and left me with zero brain cells, so I'm cheating and posting a post I wrote for DARE.  Appropriately it's about brain fog. 


I’ve been sitting here off and on for the past few hours trying to think of a topic to write about. Actually if I’m honest I have been sitting here trying to get my brain to form a single cohesive thought. Never mind making that thought into a sentence. Never mind getting my fingers to move in some sort of coordinated effort on the keyboard to form the words into something tangible. Never mind forgetting how to spell simple words like ‘and’, or even that ‘and’ is a word, or how to use it in a sentence. Brain fog strikes again, and I am lost for words once more.

For me this is perhaps the most annoying and disabling symptom that Dysautonomia has thrown my way. Once upon a time I had a brain, I know I did. I have proof on my study wall. Now I’m starting to think that my brain has made a run for it. I’m pretty sure that it is now sunning itself on a beach in Majorca and drinking margaritas, whilst I sit here lobotomized, pondering the fluff in my navel.

Frustrating doesn’t really begin to explain how this makes me feel. My brain has always been the one thing I had going for me. I could juggle complex information with ease. Be it work, academia or a round of Trivial Pursuit, I had it going on. My career choice, neuropsychology, involves the study of the brain, in particular cognitive abilities. Lordy, that makes me giggle now. Suddenly I have strains of Alanis Morissette’s Ironic*, running through my mind. (Brain fog had me calling her Alyssa Marionette for the past ½ hour without even tweaking, sigh).

I specialised in working with the elderly. I wrote protocols for managing delirium. I wrote rehabilitation and management plans for various cognitive deficits. I was the go to girl for the most complex and confusing cases. If someone was violent, or had issues with personal hygiene or body fluids, I was the girl who worked out how to manage the behaviour (hmmm on second thoughts maybe I don’t miss work so much). Now on my bad days I can make some of my ex-patients look like Einstein, and that includes the guy who thought using a metal cheese grater to itch his leg was the logical choice (if nothing else my job was never dull).

I know now that I couldn’t go back to the work I was doing. In many respects I don’t know if I would trust myself enough to get it right. The responsibility and consequences involved mean you have to be permanently on your A game and at this point I’d struggle to be the orange girl. I have to accept that particular part of my life is over and I’m onto a new chapter. If I do sit and think about it I have come to terms with not working (and I was truly devastated when I gave up work), and when I think logically about the long hours, stress and politics I don’t know if I would want to go back there.

Even no longer working brain fog and I are in a very unhealthy relationship. Hence I find milk in the cupboard and empty saucepans on the lit gas hob. I forget to wash school clothes or fill in excursion forms. I go to the shops and forget my list. Forget I even had a list and come home with yet another packet of toilet paper to add to the 46 I’ve already brought, but minus the bread for sandwiches that I initially went out for.

I frequently can’t find the words I want to use, so talk a lot about ‘thingies’. Conversely I will say the wrong word and not even realise. On bad days I slur like I’ve just knocked back a bottle of tequila, including the worm. If only. Even reading is often hard as I find it hard to maintain my concentration. I look back at things I wrote before becoming ill and I am amazed that I was so eloquent. I look back at my doctoral thesis and I can’t even follow half of what I wrote, yet I know it makes sense, just not to my befuddled brain. It’s like wading through quicksand and I’m sinking fast. It’s exhausting.

Logically, I know why it’s happening. I know that I have the pesky problem of having trouble getting the blood to flow above my shoulders. I know that the physical fatigue I feel impairs my cognitive abilities to no end. But this doesn’t make it better. For me I could put up with the physical symptoms if I still had a brain that allowed me to escape reality. Imagination is limitless and you can live a thousand lives in a thousand universes if you have your brain.

Mind you I do have the insider knowledge for when it comes to managing cognitive deficits. Slowly I am applying these techniques to my life. It’s strange that I never felt any less of my patients for having to use them, yet I have a little voice in the back of my head telling me that using them myself is admitting defeat. I’m working on that one. It’s a combination of my new mantra, ‘physician heal thyself’, and a big mental slap that says stop being so stupid woman and use your dosette box. So far the combination seems to be working.

My lack of brain does explain my love of America’s Next Top Model and Judge Judy (oh I can’t believe I just admitted that. I must learn to think before I write). That big echoing cavern between my ears has a lot to answer for.

I miss my brain.

Maybe I’ll drop him a letter. Maybe we can kiss and make up and he’ll come back home. Alternatively, I’m happy to move to Majorca and share a jug of margaritas together. I’ll even bring the sunscreen. Call me brain. Call Me.

Michelle
*

A Word From Our Sponsor XI

Well I have reprised my Emmy Award winning role as pharmaceutical lab rat once again this week.  After months of feeling like I am back to day one of my turbulent relationship with Bob, my doc recently uttered the delightful words "It may be time for a Midodrine trial".  Of course that led me to a full on Broadway dance of joy complete with jazz hands.  NOT!

Yep, trial time once more.  Treatment for Bob is basically a dose of medicine with a side of guess work.  What works for one doesn't work for another and may in fact create even more problems than what Bob can throw your way.  Joy.

Those of you who have read my blog for a while will know about my war with the Mestinon beast last year (you can revisit the insanity here, here, here, here, here, and here).  Now I did manage to slay it in the end, but it was a hard fought battle and led me to an unexpected and very unpleasant relationship with my porcelain lover, so I am less than excited about yet another foray into the unknown.  (Reading that back I realise that I sound like I have lost touch with reality a bit, but it does make sense, really it does).

Midodrine, like Mestinon, is like one of those relatives from "that side of the family".  You dread when they come to visit and know that if you don't hide the silverware and your wallet, you may end up with a $5,000 credit card bill linked to something called "Busty Asian Babes", and searching for grandma's silverware in a grimy pawnshop.

For those of you who are new or simply can't be bothered going back over past posts (not judging, just being realistic), Mestinon had been implicated in Gulf War Syndrome, YAY.  Though on a positive note, if ever there was a nerve gas attack in my lounge room I did stand a better chance of survival. See silver linings can always be found, and I am silver linings girl.  For example, when I heard that Johnny Depp didn't bathe, my first thought was what a great chance to offer him a sponge bath.  Silver linings people, sliver linings. 

Now my new bestie Midodrine, has it's own delights.  If you lie down within 4 hours of taking it you risk stroking out (luckily I get to take it 3 times a day).  Yep, obviously that makes it the top pick for someone with Bob, cause I never need to lie down.  Bob symptoms vs potential stroke.  Hmmm what to choose?  These are choices we are forced to make at this point in the cutting edge of Bob research.  Now I am still trying to find the silver lining but I'm sure it's there.  They are small so no big horse pills to swallow.  And they are colourful, little sunset orange pills, and I like colour.  Okay so they may be pretty crappy silver linings but I'm trying people, I'm trying.

So far I've had no run ins with my porcelain lover, and that is a good thing.  Lets face it hooking up with an ex never works out well.  However the excruciating headaches, exhaustion and chest pain are a little off putting.  Yesterday I had to go to the train station and by the time I had reached the ticket box I felt like I was having a heart attack (no exaggeration involved), which really wasn't all that pleasant.  Considering I was overtaken by a little old lady with a granny trolley I'm guessing it wasn't that strenuous a walk.  This does not bode well for my plans of exercising.

I wont bore you with the trials of even getting this stupid, potentially fabulous drug.  Suffice to say, it's not on the PBS in Australia and is considered experimental.  This means tedious paperwork, dealing with useless government bodies, the selling of my left kidney to pay for it, and lots of beating my head against a brick wall. 

On a brighter note I was recently asked to be a writer on a new group Dysautonomia blog called DARE: Dysautonomia Awareness Rarely Experienced.  I am joining a group of fabulous ladies (still unclear why I was asked but hey I'll go with it, until they realise their mistake and bring out the torches and pitchforks), from all over the world, different ages and backgrounds.  The aim is to raise awareness, to provide a central information hub and an unrestricted voice for those on the Bob journey.  I will still be contributing to the fabulous 12 More Pages, so now I just need to find the extra braincells and energy to get myself organised.

So in the words of the brilliant Monty Python (yes I'm going through a Monty Python phase), I'm following the philosophy of Always look on the bright side of life.

(Some days you gotta laugh even if you make an ass outta yourself).

So bring on the Camembert.

The Lab Rat Michelle :)