Life is a lesson upon many lessons. We are forever evolving and therefore learning. We remain in the learning stage until our last days.
I know I certainly don’t want to walk around angry all the time and that frustration takes up far too much energy.
I want to laugh endlessly, until my ribs are sore for a legitimate reason. This, for me, is the pure joy of being happy. I find this when I read all of your words, all of you. You provide eloquent tranquility on my worst of days and don’t have any idea you have done so. I need to thank you all for keeping me going. Your words are a velvet cascade over my broken body, without you ever realizing it. You bring me joy where painful reminders of my physical life bear down on my shell and cripple my existence. Curled up in the fetal position I pry my strangled body from its mortal coil just so I can reach my bedside laptop or my phone and read your words of wisdom and encouragement to fight for another day so that I may read them again. Fueling my will to live and not give in to my ailments.
I thank you,
I thank you for your existence on this splendid earth.
Do you really know me or anyone like me who lives in chronic pain and doesn’t feel like we have the right to complain. Who doesn’t feel like anyone will really listen to us if we do.
For those of us who suffer let me share A Day in our life….Living with chronic pain. We have a right to be heard too….
Each day we awaken with hope. Each day we rise and with aid we walk by holding ourselves up with whatever piece of furniture or wall is in our reach. In my case it’s the side of my bed and the tall-boy dresser to my left which guides me all the way to my bathroom door, where I grab the door frame and then counter top over to said loo. I limp from the ache in my hip socket, sometimes I stumble as my legs give out without warning. I’m losing the ability to stand up straight due to the constant pain in my spine. This is only a tiny fraction of what people like me go through day in and day out. What you never hear about because we are too embarrassed to reach out and let you know.
We cry in silence. What did we do in life to deserve such pain. Yet we can’t tell you all how bad it has become. We fear many things, losing the ability of our arms and legs as they seize up without warning scares us terribly. But our hands, we need those to write, to drive, to dress ourselves and go to the bathroom and bathe etc. and yet there are days where we have bouts of uncontrollable shaking and our hands cramp up and turn to fists and ache. We have memory problems, dizziness, coordination and balance issues, fatigue, insomnia; sometimes together, weakness, irritability, mood swings, occasional breathing issues, lockjaw, tingling in all our limbs. Our attention spans become shortened considerably. The worst is the loss of bladder and bowel control. The pain is widespread and no medication provides any relief at all, it becomes 24/7 and never goes away. We are scared, more than we ever have been in our lives. We are lost, confused and hurting. We need answers so we know how to fight this. We are not ready to die. We want to live and we need to know how. If we are lucky we can eat without having to live near a toilet. We may also on occasion get some half decent sleep. We may wake only to go to the bathroom and crawl back to our beds for the rest of the day. I know what this is like. I put on a great face last weekend for my son’s wedding and have been in my bed for the past 5 days trying to recuperate from it, every square inch of me hurts like I’ve been beaten with 5 baseball bats simultaneously. My body aches from head to toes and I have all of the symptoms mentioned throughout this piece of writing. I’m tired of hiding it from everyone. Anyone who knows me needs to know this. It’s just how it is. I’m getting progressively worse and have been for the past 6 months. Not long after my surgery I had an incident where I was fighting to awaken and couldn’t and for a moment I thought I was dying. My brain wanted to wake up but the rest of my body didn’t. Some how I managed to start crying and calling out for help and thank god my husband was there because I don’t know what would have happened to me if he wasn’t. Oh and I shit myself at my son’s wedding and couldn’t tell anyone, nice huh? How embarrassing.
We often wonder, is it okay to cry, to ask for help and understanding in a world that chooses to tell us it’s all in our heads. We hide it on a regular basis especially from our immediate family so not to cause worry or upset. We act as normal as possible at functions so no one sees our pain. We sometimes look to others like we are drunk because our balance is off and we need someone to aid us in walking or getting up out of a chair. We have accidents in our beds in the middle of the night and try to clean it up without waking our sleeping spouse while balling our eyes out from the embarrassment. We sleep on hospital pads or wear adult diapers to keep the bedding from getting messed up. We are afraid to leave the house because we may not make it to a washroom in time and having that happen in public is the most humiliating thing in the world. We need to know what is causing it. We are put through test after test and medication after medication. Our livers are put through the ringer and our stomachs become upset on a daily basis. Someone out there has to have the answers we need. Someone has to know what it is. Someone has to understand what we are going through.
All we want are simple things, understanding and ways to combat what we have. We try to push through and act as normal as possible but at times it just isn’t the way things play out. People around us start walking on eggshells, then they stop coming around or talking to us. The whys are in the dozens ranging from I don’t know how to help to I just can’t help. Then we find ourselves alone and all this does is make things worse.
We find avenues to vent and get it out of our systems but risk being ridiculed for it. We become reclusive and start shutting out those who do care as a protection mechanism so we can not be hurt by anyone else. Do you have any idea what it is to become lost inside your own head, to think of ending your life to save the others around you from the suffering of watching you wither away into a shell of what you once were. How can we make you understand what we are going through, we aren’t even sure if that is possible. After all most can not comprehend what it is we are going through each day when we wake. We can give you all the information on our illness in the world has to offer but can you understand it. Do you go to the doctors with us and ask questions or do you make us go alone.
How many of you out there have said to someone who is suffering ” what do you want me to do for you” and really meant it or “I understand how you are feeling, how can I make it better for you” and how many of you have cut ties or avoid the ones you know are suffering. Did you ever think just a simple conversation could possible make someone feel better, just to listen, just to be there for them or do you pick and chose when you talk to them what, maybe once a month, then tell them they are always in their thoughts and prayers just to make them feel better or is it to make yourself feel better because you have shut them out while they suffered. Are you one of the ones who says they’ll always be there but never are or do you stand by your oaths and pledges of support.
What happens when we become to weak and to afraid.
Where will you be.
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