Last night I lay in bed, heat pack on my stomach, knees bent, the godsend that is Onsetron and Endone running through my system, trying to not let the pain overwhelm. Again. A mix up with medical records and referrals means that almost 5 months after it was first discussed I am still waiting to get an appointment, let alone see a specialist gastroenterologist in the hope of a review. In hope of a solution. In a hope to the end of pain, nausea and vomiting. A fresh pair of eyes on my complex problem. It would also be nice to absorb what I eat and have my pajama bottoms stay up when I stand rather than threaten to fall from my emaciated body.
If it's not one thing it's another with Dysautonomia. But this pain and gastric quagmire are the latest to take their toll. When in a flair, though does it count as a flair after months on end of relentless pain? Lets just say out of the collection of symptoms I experience, that this issue has come to the fore with a perpetual flaring vengeance. Either way, when my abdomin and all the organs and gooey bits it holds, decide not to play fair it triggers everything else.
I am tired of pain. I am tired of a lack of respite.
This year held a first. The first time I have ever called an ambulance. The first time I have ended in tears from pain in a long long time. When you live with pain everyday it takes a lot to reach that point. When you are forced to make a decision on pain medication. To take or not take. To keep it bearable means to also take in the side-effects that the most common medications bring. With a stomach that already doesn't move the idea of slowing it further is not one to take lightly. To see the confusion on the face of the ER doctors when I am lying curled up in a ball and pale from the pain and I say I don't want any of the opiate derivatives for pain relief. At the point where I'm not sure why I went in, except I was at the end of my tether and wanted someone else to take over. IV Saline and Fentanyl. An admission that they can't help me beyond trying to take the edge off the pain. An admission that there are no specialists or specialist services in the area that could even potentially manage me and my complexity. Resigned to the disappointment after so many years, but still you hold onto a nugget of hope that this time it'll be simple and regular. A dodgy gallbladder, a shitty liver, a nasty cyst on my ovary. Something that this once they can figure out and fix. The deflation as you roll out the sliding doors, a genuine "I'm sorry" from the doctors and something to take the edge off until you can see the specialist in the city. Whenever that occurs.
I am trying to breathe through it all while I wait. I have time to spare, might as well make the most of it. Mindfulness is my latest weapon in the arsenal. I've been doing it for a while now. But like all things I'm not big on continuing. Every time I think I've found my stride and I dare to plan my body throws a curveball and it all falls apart again. Then I am back to picking up the pieces. Back to trying to get the habits started once more. I'll persevere. What's to lose at this point?
Pain medications. Nausea medications. Heat packs. None of it is cutting it right now. They are my edgers. Simply taking the edge off the pain or the nausea. But always it is there. When I wake up in the morning. When I let the dog out. When I shower. When I do my teeth. When I try another bland food. When I go to bed at night. And when I lie awake in the dark.
And it's those night hours when I run through the exercises. Trying to focus, losing focus and struggling back again. Pain, pain and more pain. It's exhausting and yet I can't sleep. The ironies of chronic illness being many and varied. I feel myself reaching across the chasm, hoping, trying, striving, but sleep simply stares back blankly far across the void. I lie listening to the ticking of the clock. I hear the dog barking in her sleep. Our neighbours cat jumping on our roof. The knocks and cracks as the house settles in the cool night air. And I run through it once more.
Feel your feet. What can you feel?....
Ha! Already distracted. Neuropathy means that simple instruction carries much wry mirth.
Focus. Focus. Focus.
Already distracted. I can trace the outline of my pain. It hasn't changed in months. The same area on the right of my abdomen. Endone required just for an ultrasound of the area. A clearly defined area of....well that's not clear. And so I wait and I lie awake at night focusing on the feelings of my body.
The feel of my body where it connects with the mattress beneath me. The feel of the sheets on my skin.
And wait and wait and wait.
Stuck in the cycle of not wanting pain medication, followed by chasing the pain made worse for my stubbornness.
And if the gastroenterologist has no answers. What then? I can't think of that. Not at the moment. I need to work this out. I need to believe in solutions. I need to believe in a time where I'm not texting Mr Grumpy in the lounge to grab some pain meds because I am in so much pain I can't move to get it myself. Trying to wait out the nausea as the Onsetron is so damn expensive. Losing more muscle mass because I'm not absorbing anything I eat. Losing more muscle mass because I am too weak to exercise.
I realised I can circle my thighs with my hands now. And then I stopped because it scared me a little how much my body has deteriorated while I wait.
Trying to manage, while I wait.
Trying to maintain hope, while I wait.
Trying to keep going, while I wait.
Watching my family worry, while we wait.
Watching the helplessness and fear on their faces, when I let on.
Hope and wait. Hope and wait. Hope and wait. Hope and wait.
Now where was I?
Get comfortable. Now. Feel your feet. Can you feel where they touch each other? Where they touch the sheet?. Do they tingle? Do they.....
Throw your pain in the river
Throw your pain in the river
Leave your pain in the river
To be washed away slow
PJ Harvey, The River
Huge PJ Harvey fan. I think I have 9 of her albums. Raw, haunting, and slightly off kilter you can feel every exposed nerve in every word and her blood flow on the strings of her guitar. And whilst Stories from the City, Stories from the Sea may be my favourite album, this particular song from, Is This Desire? is a favourite for it's haunting quality. These lines have always stood out in this song. And right now it would be so nice to throw my pain in the river to be washed away slow.
Remember to head on over here to donate to my Clicking My Heels For Dysautonomia, raising money for the Greg Page Fund for Orthostatic Intolerance and Dysautonomia research, at The Baker IDI. Thanks to the generosity of many we've already raised over $2,000, keep donating and hopefully we can reach $10,000.
I have read earlier posts that mentioned you were dealing with an overactive bowel. In this blog post you wrote about not wanting to take endone because of 'stomach that doesn't move' and I'm wondering if you mean constipation. I have had a constipaton problem for over 9 years now and so many meds, including opiates, make it worse. Over three years ago, targin was released onto the market, a slow release pain med that contained oxycontin and naloxone (check those ingredients as I'm unable to get up at the moment in order to check the targin box). The naloxone part of targin helps with constipation. Although, if you also alternate with diarrhea it may be too much for you. I take low dose targin every so many hours everyday. If I get break through pain I have endone to take but often just deal with the pain because endone seems to stop my whole digestive system. If pain is unbearable I will take it, as my pain specialist has prescribed, and just deal with the consequences. You probably know about targin. Most of us are so desperate for answers and treatment that we know what our options are and suggestions from others are very often things we have tried or things that, for one reason or another, we can't try. But I just thought I'd mention targin just in case of the miniscule chance you didn't already know of it.
I haven't heard of Targin before and have been taking coloxyl when I take the Endone but with little success. Just looked it up and it seems it is on the PBS and may be an option. I am dealing with weeks of C punctuated by D with no clear reasoning. Back when I had constant D I hoped for a day or two of constipation, oh the things you learn. I've been reluctant to use the Endone until the pain becomes unbearable because of the C issue which then causes it's own pain issue. I still have another 2mths until I see the GI so I may go in to see my GP and discuss Targin as a stop-gap option until I get to see him as the pain has been quite disabling of late. Thank you for sharing much appreciated xx
That is the place I am at with my gastroparesis. If meds are not working, could a NG tube be something to try, at least temporary to take the stress off your gut? Something like slow feeds threw a NG tube, or a liquid diet just might be what you need. Pain meds are not the solution because they slow your gut down and prolong the time food is in your stomach, that is why they never fully work for gastroparesis. I am not sure why ER try to us pain medsReplyDelete
Sorry to hear you're at the same point Todd. At this point it's the waiting to get in to see the gastro. Until then I'm stuck and just trying to manage as best I can until then. Sucks mightily. It's saddening to hear how many of us are simply existing until the next appointment and hoping for a solution that may or may not exist. I don't think ERs know what to do with us apart from treating the acute pain. I have been managing at home as best I can as the head of ER at our local hospital was pretty honest that he could do little for me as my condition was too complex. Fingers crossed the new GI can do something.Delete