LIVING LIFE DEALING WITH CHRONIC PAIN

How does anyone continue to live a life that is worth while and purposeful when they are in constant pain? That is a question I ask myself every moment on a daily basis. I wake up each morning  and try to decide whether or not I want to get up or stay in bed but my body makes that decision for me .Since  it is so painful to stay in bed once awake ,  I get up to start the day, but the pain and stiffness is sometimes overwhelming. My intentions for blogging is not to dwell on the negative but on what I can find in my daily life that will give meaning and purpose to my daily endeavor to live life fully.I will not use this space and my time dwelling on the negative, because that is the easy way out and that is not how I chose to live my life. So upon rising from bed I find my cane and slowly with much moaning and groaning I hobble to the bathroom. I greet my already awake hubby who is going through his own life and health challenges and get my first cup of coffee to start my day. I step out the back door and I am greeted by the 2 strays cats that have adopted me because I feed them when I am home, the old furry black and white I call Granny Gert because she is old and probably feels like I do, the other is a tortoise shell younger cat who seems to be able to fend for herself , she is needy, and loves to constantly rub her self all over you her name is Kali short for Calico. They are glad to see that I am home today to feed them breakfast, and I am glad they are here because they help me to better able to cope in my situation, for they are homeless looking for love and friendship and to be in relationship with me,and in need of some assistance as I am, their life is not all that dissimilar to mine and I see that they live their life as fully as they are able and go with the flow and they are teaching me valuable lessons in my life through watching how the Divine Great Spirit takes care of them through the love and care of  others.

 This past week I have been home more, and not on the road because hubby is having some health issues and we await a Heart Doctor appointment on the first of June ,he either is having back /spine problems or it is his heart, the doctor really does not know for sure,so we have another week at home ,of which I am thankful because living on the road with chronic pain of arthritis is truly getting difficult to do. So even with hubby’s health issue, I am enjoying home life as best as I can, to say the least.

Chronic pain is a major distraction in my life, it takes more energy just to do the bare essentials,like getting dressed, like trying to  getting up to use the toilet and trying to get back up again. Of going to the kitchen and cooking up the meals, cleaning up  the home. Just sitting at the computer is painful , trying to find the sweet spot of comfort in any position that I am in is truly getting to be a constant choir. Yes pain is a major distraction and a joy killer if I let it be. But I have made the decision that it will not take the joy of living from me! I can still enjoy the great outdoors even if it means just to sit and take it all in ,in a lawn chair, the beauty of the flowers and the trees, the blue skies, watching the humming birds fight over their sugar water, watching the squirrel forage for food, watching my garden grow and enjoying the company of people I love.  I don’t know if the slogan “Everything happens for a reason.” is true, I think in some instances it does, and by my will and choice I can make  most things in my life, something to learn and grow from, but sometimes life just is, and shit just happens, and what I do about that, again is my will and choice in how I will respond to it. It would seem life is at every moment a series of choices that we make, will I take life for what it is? My choice is that I will do what it takes to make my life as it is, something worth while, it is the challenge that I am facing, and I choose to see this challenge as an opportunity to rise above it and find what joy, and lessons within each challenge to future my growth in this life. I do not want to be a survivor but a thriver, and I choose to bloom where I am planted and if the soil is not all the great, I will bloom none the less.Here is a picture of my ’stray cats’ Granny Gert the black and white, and Kali. Below is a wonderful letter that sums up my feelings, I got it off a Pagan Support list on line. 

 

An open letter to Those Without Invisible Disability

Or Chronic Illness …

 

Having an invisible disability (ID) and/or invisible chronic illness (ICI) means that many things change. Just because you can’t see the changes doesn’t mean they aren’t real.

Most people don’t understand much about these disabilities/diseases and their effects, and of those that think they know, many are actually misinformed. In the spirit of informing those who wish to understand …

… These are the things that I would like you to understand about me before you judge me…

Please understand that being disabled/sick doesn’t mean I’m not still a human being. I have to spend most of my day being very careful what I do, and if you visit I might not seem like much fun to be with, but I’m still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I’d still like to hear you talk about yours too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time, in fact I work hard at not being miserable. So if you’re talking to me and I sound happy, it means I’m happy. That’s all. I may be tired. I may be in pain. I may be sicker that ever. Please, don’t say, “Oh, you’re sounding better!”. I am not sounding better, I am sounding happy. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for five minutes, doesn’t necessarily mean that I can stand up for ten minutes, or an hour. It’s quite likely that doing that five minutes has exhausted my resources and I’ll need to recover – imagine an athlete after a race. They couldn’t repeat that feat right away either.

Please repeat the above paragraph substituting, “sitting up”, “walking”, “thinking”, “being sociable” and so on … it applies to everything that I do.

Please understand that the effects of chronic illnesses and many disabilities are variable. It’s quite possible (for me, it’s common) that one day I am able to walk to the bathroom and back, while the next day I’ll have trouble sitting up. Please don’t attack me when I’m worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I’ll tell you.

Similarly, my illness/disability may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that “getting out and doing things” does not make me feel better, and can often make me worse. Chronic illnesses/disabilities may cause a secondary/reactive depression (wouldn’t you get depressed if you were stuck in bed 23 hours a day for years on end?) but they are not caused by depression. Telling me that I need some fresh air and exercise is not not correct and probably not appreciated – if I could possibly do it that, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now – it can’t be put off or forgotten just because I’m doing something else more exciting. Illnesses and disabilities do not forgive their victims easily.

Please understand that I can’t spend all of my energy trying to get well from my incurable chronic illness/disability. With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability is coming to the realization that you have to spend energy on having a life while you’re sick/disabled. This doesn’t mean I’m not trying to get better. It doesn’t mean I’ve given up. It’s just how life is when you’re dealing with a chronic illness/disability.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought; and it’s not because I don’t want to get well. It’s because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with a certain illness or disability then we’d know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, if something worked we would know about it.

If after reading that, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don’t expect me to rush out and try it. I might not even reply. If I haven’t had it or something like it suggested before, and it sounds reasonable, I’ll probably take what you said and discuss it with my doctor.

Please understand that getting better from an illness can be very slow. And getting better from an invisible disability might not happen at all. People with chronic illnesses have so many systems in their bodies out of equilibrium, and functioning wrongly, that it may take a long time to sort everything out, if it ever happens.I depend on you – people who are able-bodied – for many things.But most importantly, I need you to understand me.

~ by patc8owlthena on May 24, 2009.