Sunday, 12 October 2014

Step 1 Numb.



Sitting on the couch tonight, I feel.....I'm not sure what. Empty. Numb.

Standing on an empty beach. A black and white photo purged of detail. An echo of a person. A ghost on the scene. The invisible winds erasing me particle by particle. Until I am but a whisper. It's easier that way.

Remove yourself. Erase yourself. Too raw. Too soon. Not today. Self-protection mode. Until later.

I'd built up today. I had told myself not to get my hopes up. But a part of me did. The part that has been clinging to the edge of the precipice by its fingernails. The part that said this is bearable because I just have to get to there. The dot on the map. Point B. I can deal with the journey from Point A as long as mythical B is reached. When I can step through the wardrobe to a world of magic and wonder, hope and strength. A world without pain and worry. When the journey is made bearable because there is a reward at the end. That part of me may have been small but it was powerful. More powerful than I realised.

I wish I was still on the journey. Uncertain future is better. Than cold hard reality.

I sat in the appointment today and my fear was realised. That fear I had buzzing in the back of my mind for most of this year. That I'd stuffed in a cupboard bound and gagged. Because if spoken it would give it power. And yet today it was spoken and now I have to make sense and get through. My pain for the last year is not gastric but neuralgic. Neuropathy strikes again and I get to have knives in my abdomen. An answer but no solution. And now I have to learn to live with it.



Live with it.

Live with it.

Live with it. 


I may have some hope with some issues that surround. The gastroparesis. The fact I can't crap like a regular person because the nerves in my muscles don't work properly.

"We see it in a lot of people with chronic neurological disorders."

How many times have I heard that this year?



Losing weight?

"We see it in a lot of people with chronic neurological disorders."

Unexplained loss of function in one foot?

"We see it in a lot of people with chronic neurological disorders."

Not being able to work my muscles properly to defecate?

"We see it in a lot of people with chronic neurological disorders."

Excruciating abdominal pain?

"We see it in a lot of people with chronic neurological disorders."



It happens in a lot of people. But we can't be arsed working out why, or finding solutions.

It happens in a lot of people. Like that makes it better.

It happens in a lot of people. So for us it is meh.

It happens in a lot of people. A skewed group of extremes which creates a skewed view of normal.

It happens in a lot of people.



It happens.

Live with it.

We can do this and this. But really it won't change much.

See you before Christmas.


Live with it.

Live with it.

Live with it.


Deflate. Vague out. Retreat. It's palpable. It's visual. Even in the chair I could feel myself drop. The tense anticipation that held me together left and millimetre by millimetre I shrank. Down and into myself. Put up the walls and dissolve the emotions. Don't feel. Not yet. Ignore. Process later. Down the track. When you're stronger. When your armour is thicker. When the defenses are raised. When you are that other person. The one not crushed by dashed hopes and broken dreams. The one that must learn to live with it.


Live with it.

Live with it.

Live with it.


If I say it enough times I'm sure I'll understand.

Michelle

14 comments:

  1. Oh no! Your pain is truely palpable in this post. My heart aches for you Michelle. I know how long you have held out hope waiting for this appt, only for that hope to be forsaken once again. I am truly sorry.

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    1. Thanks Julie. xx My pain issues were pushed aside to focus on the gastroparesis so I'm left hanging in the wind at present. Hard to wrap my head around that.

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    2. Oh and the gastroparesis? I get that too.! Taking a liquid (not the pill form) magnesium/calcium/D supplement seems to keep things, ummmm, moving for me. It's the magnesium - it also helps the nerves I guess (?). That and the occasional senna, and eliminating dairy, are all helpful. It's something I have to attend to ALL THE TIME - I can't trust my body to work on its own.

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    1. Thanks Kelley, I know you understand only too well. xx

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  3. My heart aches for you too Michelle,your pain is certainly palpable in this post. Chronic illness sucks, never getting fixed sucks, hearing it at every appointment sucks, the investment, the hope, the time, the money, I get it hun .... and all I can do for you is send all my cyber hugs and spoons and say I am sorry <3

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    1. Thank you Lisa xx I will get back to an even keel again I'm just exhausted by it all at the moment. I didn't realise how much I was hanging out for this appointment until the pain was put in the 'live with it' basket and he moved on. Hard to live with it when I've just been existing with it for months now :(

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  4. I'm so sorry to hear this, neuropathy (especially of the gut) has been #2 of the THINGS I HATE THE WORST about this disorder (#1, of course, being uncontrollably deyhydrated and blacked out before the ambulance arrives). "Live with it" is an UNACCEPTABLE ANSWER!

    For what it's worth, the ONLY thing that has helped me with my various neuropathies (gut and limb) is the paleo-autoimmune dietary protocol - - it takes a couple of weeks before I see improvement but I pay a heavy price when I fall of the wagon and resume eating my old way. Actually, from the way I feel when I eat *normally* I am pretty certain that, save this special diet, I'd have "fibromyalgia" in addition to everything else I've got. If anyone is interested: http://www.thepaleomom.com/autoimmunity/the-autoimmune-protocol

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    1. Thanks letteradicorsa xx Amazing how much diet helps with things. I'm already fairly restricted in what I eat and on Thursday I get to see a dietician to restrict it more. All I can think is it better help. I'm over no answers, half answers etc. I am so happy that the paleo-autoimmune diet works for you, always celebrate any win for any of us. Thanks for the link. xx

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    2. "Yeah, we see that a lot." I hsve heard those words do many times. I get the dull pain in my abdomen thst turns to sharo knives. But apparently their is nothing they can do about it. Taking tons of laxatives helps the pain but brings on another sort of pain and I havent found a laxative yet that doesn't make one or two of my other pots problems worse.

      I was told last week thst my pots was for life. He is a good doctor but I coukdnt hrlp but musd that I had to negotiate the physical and financual burden og getting to and from the hospital only to be told something I hsve known for a long, long time. But he's a decent dpecialist - and he put my bill on medicare instead of me having to fork out $400 up front. That helped ease the burden s little. He also found me a top gi dic ho tskes medicare from me, isvery interested in what is happening to me but he only thing he has to offer is, "yeah, we see that a lot with dys/nerve damage problems". 9 snd s half yesrs of constipation now. Funnily, it was an April Fools Day when my bowels shut down. The joke dure was on me.

      I'm loving all the artistic expressions of dys, michelle, just been too tired to post sbout them - but I sm identifying, and feeling, with all of them. A great example of making siver liningsout of our afflictions.

      sorry about the spelling mistakes or wrong words but suto correct is winning more, these days. And my fingers oftrn dont tap the letters I thought I had.




      p

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    3. Hugs to you to Billie-Blue. It's such a hard slog and exhausting. The GI suggested a fibre supplement to get me moving, the dietician I had to see for the gastroparesis, said definitely not. So now i'm stuck trying to get on top of my new diet and not pooing and still feeling crap and in pain. You can't win. Glad you're liking the art, it really does tap into so much of what we are all dealing with. I love that each form adds a unique interpretation. xx

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  5. Thank you for your post, Michelle. So many times, I have felt what you expressed. I feel less alone.

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    1. Hugs Anon. Seems to be par for the course with chronic illness. xx

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  6. Thanks. Been struggling with this big time for 10 years. So few people can pronounce Dysatuonomia, let alone comprehend it. It's good to know that there are other people out there who understand.

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All who are lovely enough to comment should be showered with cup cakes, glitter and macarons. I promise to use my spoon bending mind powers to try and get that happening for all who are lovely enough to share their words. Those who go the extra step to share posts should really get a free unicorn. Or at least the gift of finding the shortest and quickest line at the supermarket on a regular basis. xx