newbie herehello, all you fabulously inspiring mamas!
well, unfortunately, i seem to qualify for the tribe! it seems like a great place to be, though.
i'm the mama of two precious girls, ages 10 & 6. i've been experiencing some mysterious form of "chronic pain" (for lack of a better term) since shortly after my second dd was born. Six years in, and i still have no idea what it is, no official diagnosis, and haven't found a single thing that helps relieve the intensity of what my body is going through. Most of the time, it is 24/7, with no relief in sight, and an intensity which truly makes me insane...and then, once in a blue moon, it will spontaneously disappear, and i'll have a few minutes, a few hours, or perhaps ever a few days of respite. I have driven myself insane, and beyond, trying to figure this out (what it is, what is causing it, why it won't respond to anything i've tried, etc.). I have baffled doctors, chiropractors, accupuncturists, massage therapists, chaniosacral therapists, homeopaths, herbologists, natural healers....a very long list of practitioners, and nobody is able to figure this out. Even the simplest of things can trigger it...getting out of bed, rolling over, reaching to turn out the light, getting dressed, undressed, picking up something on the floor that's dropped, reaching to get something in the cupboard, snuggling with my dd's, hugging (this TRULY sucks), carrying anything, picking up anything, sitting down, getting up out of a chair, sneezing, coughing, anything that startles me (the automatic response to quickly turn your head to look at whatever made the loud noise, etc.), stretching, turing the key in my front door, sitting, standing, lying down, basically ANY position other than sitting absolutely still & straight, with no movement whatsoever...the list goes on and on ad nauseum! Every aspect of my life is affected by this. It prevents me from doing all the things i most enjoy in life. It affects my relationships, with friends and my family.
The hardest part of all is the effect its had on my dd's. They are incredibly understanding, and supportive, and nurturing (of course, i SWORE i would never turn my children into MY caregivers...my worst nightmare has come true!). And they have modified their entire existence to try not to do something that would trigger my "pain" even more. Of course, accidents happen ALL the time...all it takes is a little nudge the wrong way, or someone dropping something accidentally, or an overzealous hug or cuddle that leads to a bad movement for me...i feel like they live in a prison when they are around me. Everyone treats me with kid gloves, trying not to make things even worse than they already are. It feels like such an unnatural life for children to live this way! They are always trying to do things to protect me, to help me (they carry the bags, they open the doors, they do all the stuff i can't manage on my own). They are absolutely awesome, but yet i can't help but bear the overwhelming guilt of not being the mama i want to be with them. I can rarely play with them, i certainly can't sit on the floor with them, or just be in the moment with whatever they are doing. I carried both of my babies on my body for FOREVER and a day, did extended bf'ing, family bed, the whole deal. Now, i find myself desperate to create space between us, just to avoid any accidental bumps or whatever that will set my body off. Its a horrible feeling, and goes against what every cell in my body truly wants to do. I want to be with my girls, i want to hold them, to be close to them, to play with them, to enjoy them, laugh with them, to feel joy with them. This body of mine robs me of all of that. It robs me of all the things that bring me joy in my life.
So, what IS this mystery thing?? I really have no answer to that. Part of my ongoing frustration is that its SO difficult to explain to anyone. I call it "chronic pain" for lack of a better term, and because "pain" is the only word that people seem to be able to relate to. As soon as i drop the word "pain" from my description, people seem to immediately go down the road of doubting what i'm saying, not believing the immense intensity of it, chalking it all up to stress (don't you just LOVE that one!), and basically dismissing it as anything 'real'. Believe me, i have had many days where i question my own sanity, wondering if i am totally imagining this whole thing. But when the intensity hits me, to the point of incapacitating hell, i know, without a doubt, that this is truly real. I guess that's the nature of these chronic conditions...it starts to mess with your mind. I would define myself as someone with incredibly strong intuition, a healthy self-image, and a lot of strength, but when it comes to THIS, its all out the window. I doubt myself, i feel ridden with failure, hopelessness, powerlessness, guilt, and at times, i loathe myself and my body. I feel like two different people. This condition, whatever it is, has totally changed who i am. I ache inside, for the woman that i know is lying dormant inside of me, aching to come alive again, churning to be heard and understood, and most of all, healed. I can not bear the idea of living the rest of my life trapped in this hellish existence.
My latest theory is that there's something neurological going on. I used to think i was simply an alignment thing, and that my body just couldn't keep itself structurally stable. I still feel that this is an issue, the way that i can SO easily be reinjured, over and over again. I do have some fairly advanced degeneration of several vertebrae, both cervical (neck) and thoracic (upper back). I'm sure this is partly what contributes to it, but i'm convinced that there is something WAY beyond this. The intensity of what goes on in my body is so extreme at times that i literally feel like i'm going insane. Its like my neural pathways are totally going ballistic. I get these surges that rush through me and there is no stopping them. Its like every nerve in my body is firing full tilt and can't stop. I have no idea what brings it on or how to stop it. I feel nauseous (but not to the point of throwing up...its a strange nausea), off balance (although i don't fall over or lose my balance...but my sense of equilibrium is totally out of whack). The pressure is often unbearable. It can come and go and change totally unexpectedly. And yet, often, it just never leaves. It starts with the slightest, almost undetectable sensation in my neck/upper back area...i call them 'niggleys'...and when i feel that, i just know that its on its way to intensifying to the point of total overwhelm. Anytime i try to explain this to a practitioner, they look at me like i'm a lunatic. Maybe i just imagine this reaction, or have come to expect it based on so many bad experiences. Its so difficult to be doubted, questioned, dismissed. If they don't immediately know what my issue is, their egos tend to get WAY overinflated and they want to ditch me, so that they don't have to look bad. UGH!
The worst part of ALL of this, is that as soon as i start venting about it (like now), i beat myself up for being negative, for not being positive, for coming across as a 'victim', oh-woe-is-me, pathetic complainer. And yet, the truth is, i feel trapped. I feel desperate. I feel scared out of my mind. I feel really, really alone.
I really need to find some compassion for myself. But i really struggle with this...can't quite figure out why, cuz logically, i know that its not my fault and i'm doing everything i can to get through each day. Yet, i still find ways to be really, really hard on myself.
The past month or two has been particularly difficult for me. I think i've reached the crisis point...the place where i'm starting to give up. I'm losing hope. I'm feeling like i desperately need help, but i have no where to turn. I don't have anyone i can fully put my trust in, when it comes to my health and well being. I've been disappointed SO many times by people that call themselves healing professionals. I am terrified of allopathic medicine...its truly not my comfort zone. I am totally inclined toward natural healing. I've tried SO many things, and nothing gives me any kind of lasting relief. I used to go several times a week to my chiropractor, simply to have 5 minutes of respite from the craziness i feel. That's how desperate i was. I would spend HOURS driving and sitting in waiting rooms (uncomfortably so), waiting to see these supposed healing gurus, but to no avail. I'd be back to square one, or often WORSE, within minutes of leaving their office.
I believe that body's are designed to HEAL, not to self-destruct. So, why can't my body heal???
I guess what i'm really hoping for tonight is some hope. I have no idea what that would even look like to me right now. I just know that i'm really hitting the wall here, feeling truly alone, terribly scared, and not having a clue where to turn. I am open to ANY wisdom that comes my way.
What do you all do to get by? How do YOU do it? I know how unbearably hard it is for each and every one of you. How do you keep going, after years of this wearing down your body and mind and spirit? I'm so tired of the struggle. I don't just want to plod along through life, feeling like my life is over. That the best years are behind me. That its all downhill from now on. I can't bear to exist this way. I need to dig deep and find myself a WHOLE lot of strength. I want to be healthy. I want to thrive. I want to be ALL that i can be. But how???
Thank you so much for your listening ears. I know you got a HUMONGOUS earful tonight!
Hey, its great meeting you all...for better or worse, here i am!
rest well, y'all!