This is a piece written by a fellow spoonie, it was posted on a private blog so I have protected their anonymity, I just know many of my regular readers will understand this account, have things they may relate to, want to respond to etc. I felt compelled to share it because it encapsulates so many of my daily battles, and not wanting sympathy or pity but a little empathy, compassion and understanding is a major thing, and makes a huge difference to us. Anyway I hope you enjoy his read, and maybe when he sees this he will know we are never alone!
I live with chronic pain. Please just read this and I hope that I can honestly explain it for you.
living with chronic pain means many different things in my life has had to change. Most people either do not want to or just cannot understand that. Suffering chronic pain does not make me any less human. Just because I may smile crack a joke now and then does not mean that I am feeling better. Nor have I been cured by some miracle . It certainly doesn’t mean that I am a fraud. I spend my life in considerable pain, I am normally very tired and sometimes I may seem like I,m not much fun to be around.
Does being happy make someone healthy? What is the difference? I have been in pain for YEARS. I cannot be miserable all of the time. In fact I try hard to be happy as much as possible. So what if I laugh? am I not a human being. We do that sometimes. It doesn’t mean I feel any different or that I am not actually in a lot of pain.
If I can manage to walk 20 metres does not mean that every step isn’t a battle in itself. From the very first step I am in worse pain than the last. If I manage to stand in a queue for a few minutes does not mean that I can do it again in an hour from now or even tomorrow. Some days it is all I can do to get to the toilet or even stand up to shake your hand. I can say the same thing about sitting, concentrating or even eating a meal.
I do not know if today will be a good day when I wake up. By a good day I mean one in which I can do at least some of the things I want to do or tentatively planned for that day.
I frequently cancel arrangements at the last minute. In fact my condition can change from minute to minute. I can sometimes feel a tentative enthusiasm for something only to have my pain ruin everything in a heartbeat. (What do you do if you drop a book or your keys on the floor? You just bend down and pick it up don’t you. Everyone does it because it is an automatic reaction.) The thing is, it is just doing that one little thing like that can completely ruin my day and put me into an ocean of pain.
Getting out of the house does not make me feel better. It can leave me in an incredible amount of pain. No one, not even my wife who knows me better than anyone knows what sort of day I or we are going to have. She also doesn’t know truthfully what I go through each day, or how much I suffer in my own private time. I try and hide it from her, she does see through it some of the time though.
Getting out of bed can be a struggle. Not in the keep hitting the snooze button sort of way. I mean just working out how I am physically going to get into the sitting position. I have a rail on the bed which helps, but it is usually a very painful experience. That is of course if I managed to get up to bed in the first place. Some days I cannot make it up the stairs and I end up on my piece of memory foam and aided by cushions and a reclining chair, cat nap some nights. Even though my medication makes me tired doesn’t necessarily mean I will get much if any proper restful sleep.
If I could do even some of the simple things like washing certain parts of my body or even putting my own socks on do you not think that I would. Sometimes the frustration is almost unbearable.
I have watched my son grow up and been unable to do even the most basic fathers duties. I cannot pick my son up or hug him like you would your own child. My son never jumps into my arms and gives me a bear hug. He stands in front of me and barely touches me, he knows to be very gentle with his daddy. I do not throw a ball or chase him around the park like other dads do.
Have you any idea how much of a failure I feel when I see a child squealing with delight as he wrestles with his dad and gets tickled until he begs for mercy. Of course you don’t, how could you know what it feels like for someone like me. How could you?
Do not judge me or tell me that you know how I feel. You have no idea how I feel.
You may have had the Flu. I do not mean a bad cold I mean proper full on fever and every joint in your body aching. Is that how I feel? You are not even close. Multiply that by at least 5 and throw in a migraine too and you may begin to realise what my body does to me every day.
Surely I am making it sound worse because I want some sympathy??
I do not want or need your or anyone else’s sympathy. Don’t feel sorry for me either. I do not want or need that either. I just want you to understand me.Sometimes I just need to be believed.
I have to cope with that while I carry on as best I can. You may think that I don’t always listen to you. That may be true but it is hard to always hear you when my body is screaming at me or my medication has made everything a little foggy.
You may just be reading this because you want to understand who I am and what kind of person I am. You may read this to try to assess me or work out if I am worthy of your time. I do not know but if you have got this far then thank you. Thank you for taking the time to try to understand who I really am and why I may be a royal pain in the arse sometimes. I don’t mean anything by it, I may be just having a bad time of it today that’s all.