Neuropathy is a large pile of suckage.

(A fakir performs the bed of nails trick, circa 1955. Peter Purdy / BIPs / Getty Images source)

Morning are the worst. I'm unsteady, nauseous, my blood pressure non existent, and life just seems to suck more. Not that I have ever been a morning person. Way back in the dim distant past that was my pre-sick life, I was a night owl who greeted mornings with dread and expletives. Now I have the added pressure of a body that dehydrates overnight until I feel I must look like a dried up prune (mirrors are avoided at this hour for fear I'll be turned to stone should I glance at one. So the prune thing is supposition. I may be more sultana than prune, who knows). I also have body that hates to be upright at the best of times and is very reluctant to move from a night spent horizontal when Freyja starts whining at the door desparate for her morning pee.

This morning as I stumbled into the bathroom I hit my knuckles on the door frame. Hard. So hard it made Freyja jump. I let out an instinctive yelp. And then realised it didn't hurt. Not a bit. I looked down at my red and swollen knuckles. I'd heard the noise. I could see the result. But nothing. No pain. Even in my muddled morning state I had a hmmm...? moment.

I flopped down onto the tiles and looked at my hand which is apparently so inept that it can't even register pain. Sure, I pushed on it and I could feel that. But still no pain. Another defective part of my body to add to the list.

Neuropathy for the win!

It's a weird beast. How can I be in so much pain in some parts and so little in others? Yesterday, I lay on my bed trying not to cry as the pain shooting through the toes of my left foot was so intense. Today, I whack my hand and nothing.

It's not the first time.

I cut my leg whilst shaving and left a blood trail round the bathroom. If I hadn't noticed the blood I would never have known I cut myself.

I've pulled rose thorns from my skin, only noticed because something was tugging on my clothing.

I burn myself on the stove on a regular basis. And the oven. I have been burnt by steam and by splattering oil.

Even when I sliced my thumb the other day the pain was not what it should have been given I had a 1cm cut deep through my nail and top of my thumb.

When I had my last Evoked Potentials test done, the tech kept asking me if I was okay as he kept turning up the device while I sat there unmoved.

Temperature sensation is long gone in my legs and halfway up my arms. I have a spot on my back that is still able to register temperature but no where else. If not for the raging red colour on my skin I wouldn't know the shower was too hot. And I've had burns from heat packs I didn't know had been overheated.

And yet, as I sit here typing I can feel my feet burning, only somewhat dulled by the Lyrica. I can feel the tasaring in my left foot. And the small spot on my lower back that feels like you are rubbing salt and ground glass into an open wound from just the pressure of the air in the room.

And the pain on the right side of my stomach that my gastro decided was neuropathic. It varies from knives, to Knives, to KNIVEESSSSSS!!!!!!!

One part the fiery pits of hell and tear inducing pain, another nothing but void.

I can't even be broken in a consistent manner.

Maybe that's why my doctors keep telling me I'm "special."

Neuropathy is a large pile of suckage.

Michelle :)

Invisible Illness Week 2011

This week marks the start of Invisible Illness Awareness Week (okay, so it's more of a US initiative, but here in Australia we are bit lacking in the PR side of things, so I thought I'd jump on the bandwagon to promote a bit of awareness in the Land Down Under).

As someone living with a nice little collection of invisible illnesses I know the challenges that can arise.

For those new to the blog, I'm 5yrs into living with Dysautonomia, or Bob as I like to call it.  Well five official years, if I look back at my photos pre-2006 I have a lot of sexy purple leg shots.  And if I look back over my life I have had periodic symptoms since my teenage years.

I am also living with:
Progressive neuropathy,
Degenerative disc disease,
A mutant jugular vein called Jeff,
Boobs that persist in growing in places there not supposed to, and popping out painful cysts and fibroadenomas like randy rabbits.
And if I ever pull my finger out to get an official diagnosis, Ehler's Danlos Syndrome.
To top it off I now have my delinquent gut, for which I am still looking for answers.

In other words, I have the Ford Pinto of bodies.

Despite my delightful and ever increasing list, I still look pretty healthy on the outside.  Okay not so much in the last two months since my dodgy gastric system has taken up residence.  As Mr G says, "well at least you look sick now".  Thanks honey.  Always there for the moral support.  But in general I can put on the spackfiller, whip on some lippy, and look relatively normal.  This can make my health issues seem rather confusing for others.

Apparently, I simply "don't look sick".  I also don't act like a sick person, whatever that means.  Foiled once more by my own Oscar worthy acting abilities.  The logical conclusion to this being, people think you're either not sick, or not as sick as you claim.  Which is understandable, right?  Because all real illnesses are visible.  You know, like Diabetes or heart disease.  Because their years of no medical training, makes them experts at spotting and diagnosing illness. (Okay, I may still be a little bitter about a few people).

It doesn't help that I was stupid enough to pick the obscure disorders.  The kind that no one, not even most doctors, have heard of.  And if it's not enough that they are obscure, they are also complex.  All of which adds up to yet another layer of invisibility to contend with.

What's a girl to do?

Should I highlight the black circles under my eyes?
Should I lie dramatically on a couch and moan?
Should I "woe is me" at every opportunity?

Would that make my invisible illnesses more real?

Maybe for other people, but not for me.

I live with it everyday.  They are very real to me.

It is real when I can't stand in the morning because my bp is so low.
It is real when I can't string a sentence together.
It is real when I can't open my eyes due to the excruciating pain in my head.
It is real when I have to lie on the tiles in my bathroom following a shower.
It is real when I can't feel when I've cut my legs when shaving, or burn my hands when cooking.
It is real when I have to hold my hips in with my hands when exercising.
It is real when I am bent over the toilet in a public bathroom because the nausea is so bad.
It is real when I lie in bed unable to sleep because my feet are burning to the point where I cry.
It is real when I pop a disc in my back because I have a scan at my local hospital.
It is real when I can't coordinate my legs to walk properly.
It is real when I grab the wall or have to stick my head between my legs because I simply went to the loo.
It is real when I can't get cool in the middle of Winter and must put on an airconditioner.
It is real when I can't exercise because it causes my bp to drop.
It is real when I can't feel the pedals in the car through my shoes.

It is real to me in a million other ways that I could list, but that most people will never see, or understand.

Disbelief and dismissal cut deep.  They attack the spirit.  Heard enough times, they are internalised until the criticism comes from within as readily as it comes from without.

It must be in my head.
I must try harder.
It is my fault.
There are others worse off than me.
I am not worthy.

Acknowledgement isn't about pity, it's about compassion.

Just because you can't see someones suffering, doesn't mean it doesn't exist.
Just because you don't understand, doesn't make it less real.

Compassion costs nothing.
But is priceless to those who receive.
And is a gift to those who choose to give.

Michelle :)

Here's a little post I wrote a couple of years ago.
Dysautonomia: Invisible Illness My Arse.

Uberneuro: The good, the bad, and the new party trick.

After much trepidation, nausea, and frequent pee stops, I managed to get to, and survive, my visit to the uberneuro.  I don't mind admitting I was a wee bit worried in the hours, okay days, preceding my appointment.  Would he think I was a nutter?  Would he think there was nothing wrong?  Would he find something terribly, terribly wrong?  Would he be the wearer of a colourful bow tie (the international symbol for "I'm a God complex arsehole.  All shall bow to my awesomeness")?  These are the things that go through your mind before the big appointments.

It's ridiculous that after all this time I still worry that I might end up with the nutter tag.  I know I have a genuine medical condition.  I've had it verified by a number of specialists.  I have the hard data in the reports.  Yet still that little voice in the back of my mind says, "it's all in your head, loser".  Logic and fact be damned. It's the same little voice that took up residence after my horrendous and soul destruction visit to my local condescending and incompetent General Physician when I first became sick.  Every time I think I have finally succeeded in getting rid of that voice, it raises its ugly little head once more.  The King Cockroach of the little voices in my mind.

That's one of the joys of having an invisible and unknown illness.  What others can't see they doubt.  Then if you're especially lucky, they are kind enough to share their doubt with you.  One doubt filled comment.  One judgmental look, and all your confidence crumbles.  Maybe they are right?  Maybe it is just all in my head?  I'm not quite sure what I'm supposed to look like to prove I'm ill, but I still feel like I should somehow attempt to look the part.  I like to pride myself on having a pretty good attitude about this whole illness business, but times like this it all comes flooding back and all those insecurities take over.

Two and half hours after I walked into the office in the dingy old section of the hospital, I finally had answers.  All the months of waiting actually paid off.  That doesn't happen very often.  So many times I have waited and waited only to have my piss poor health confirmed, be told I was unique, that they have no idea why, and that there were no treatments to offer me.  Time well spent, not.  Always followed by a bill that required the offering of my first born, or left kidney to pay.

It was the longest and most thorough neurological appointment I have ever had.  I was poked and prodded, and even bared my naked bum to his face (thankfully no inappropriate flatulence, though for some reason I felt a sudden desperate need to vacate my gasses as soon as I dropped my undies).

I was taken aback by the fact he actually asked my opinion and made jokes.  Who was this man with the bedside manner?  Surely he cannot be a member of the neurological profession?  The words 'professor' and 'neurology' are never found in the same sentence as 'personality' and 'humour'.  Well, unless the words 'lack of' are involved.  He was a rare breed indeed.

Mr Grumpy found great humour in my body's incompetence, chuckling away to himself through out.  Is it one point or two? Is it hot or is it cold?  Can you feel this pin I am sticking in your stomach?  The physical equivalent of a Mensa test.  Unfortunately, Mensa will not be calling anytime soon.  I fear my body is not even fit to carry their pocket protectors.  In fact, I'm pretty sure that the nerds would give me a swirly, and laugh derisively at my inability to identify prime numbers.  I did find out that my right-side is far more intelligent than my left, which may have an exciting career ahead as a speed hump.

So what does it all mean?  My neuropathy is spreading, and spreading faster than I thought.  I think back to early 2006 and I was relatively well.  Then my ANS went into melt down.  A few years ago the toes on my right foot started burning.  Then it was temperature sensation, pin prick, reflexes, burning my hands, the list goes on and on.  (I've written about my various progressing ANS symptoms so I wont bore you with those here).  Now I am uncoordinated and weak as a new born kitten.  Fun times.  Most surprisingly I now have a large patch of my stomach you can stick a pin in, and I simply don't feel it.

He confirmed that my version of Bob is not related to a virus as first thought, but rather an underlying genetic neuropathy.  This isn't really surprising.  I've never brought into the virus argument, it just never fit with what I was experiencing and always felt like a red herring.  He agreed and said my presentation and progression were not reflective of a viral aetiology.  It was nice to finally get an answer to 'why'.  There's something reassuring about an answer, even if that answer is progressively dying nerves and all that means for the future.  It was equally nice to have things like MSA and a variety of Parkinsonian disorders ruled out.

In the world of possible answers, it's not really the best answer I could have received, that would have been Bob is due to A, if you take B you will be cured.  But it's also not the worst.  It's an answer and frankly, that's a relief.  Uncertainty is a far worse diagnosis.  Uncertainty is a shadow being, menacing, and waiting to pounce.  It leaves you floundering, not knowing where to go or what to expect.  A diagnosis, any diagnosis gives you legitimacy.  Legitimacy in the eyes of others, and more importantly, for yourself.  It also gives you something tangible to deal with, and that is priceless.

I will admit to a moment of "why couldn't it be a tumour.  They could cut that out", because that's how your mind works when the news you get isn't all beer and skittles.  A tumour becomes a viable and more preferable option in comparison to diagnoses that involve the words 'progressive' and 'nerve death'.  Sounds crazy when you say it aloud and I know that many would be shocked, but crazy is order of the day over logic in these situations.

I still have more tests ahead to clarify if I am dealing with crap or super crap, not that it will change my treatment options greatly.  It's all still symptom management rather than treatment.  The dead nerves will continue to be dead nerves and more will join the party.  And really, the last thing I need is some form of reanimated zombie nerve roaming around my body.  I've watched enough bad scifi to know that kind of thing never works out well.

At any rate there is no one to do the biopsies I need done until next year, so my plan is just to sit back and not worry about the possibilities until they crop up.  I figure, it is what it is, and I can't do anything about it so I'm not going to waste my time worrying about 'what ifs?'.

Besides, I now have a new party trick, the human pin cushion.  Maybe I could try out for The Dudesons as the new human dart board, or join one of those freak shows lying on a bed of needles.  Oh the possibilities.

(Though I'm not sure the outfit goes with my new found sense of style)

Cheers
Michelle :)

Time to sing my favourite song and break out that old bottle of butterscotch schnapps.