You Are More Than A Diagnosis by Keith Orsini

June/July 2016

What is it like to spend every minute of every day in extreme pain? For weeks, months, years, even decades?

It hurts. A lot. Ow. Ow. Ohhhh, Ow.

​Next question?

My CRPS started back in 1974 as many of you know. If you want to read my complete story, CLICK HERE.

Obviously that is a very long time, more than four decades of living with this monster called Complex Regional Pain Syndrome. I have lost a lot of friends along the way to the consequences of living with a severe chronic illness. I also still have a number of wonderful friends with whom I still communicate many, many years after first meeting them on-line. There is a bond that develops when you share living with this disease.

Without re-hashing everything that I shared in the previous article and/or what I wrote in A Day in the Life of a CRPS Patient , or my personal history “story”, I thought I would share a few thoughts about from the viewpoint of a forty+ year survivor of CRPS. So many patients and loved ones ask me, when they hear how long I have been dealing with CRPS, “How have you managed to survive the disease for four decades!?” My answer is always the same, “I don’t like the alternative.”

As I look back now, especially now that we have officially closed American RSDHope, it seems like a short time ago I received the official diagnosis (1993) but only yesterday that my original injury occurred that caused the CRPS (1974) and the subsequent accident that caused it to spread full body (1985) and gave me failed back syndrome, degenerative disc disease, and so many disc issues in my back and neck. I barely remember a life without pain anymore. I know that may sound sad but remember, I was 14 when I was first injured and so I have spent 41 years in pain and only 14 years without pain, some of those as an infant/toddler when most of us don’t remember much anyway.

(Shortly after American RSDHope closed the doors in June, 2016 Suzanne Stewart, a story from her is above I believe, wrote a very beautiful goodbye letter to us. In it she summarized pretty well what I went through with CRPS. You can read her letter here. )

Don’t get me wrong, I am not holding a pity party. Far from it. I feel very blessed in my life. While my life hasn’t always been easy, my recent life is some of the best years of my life. I have an amazing and supportive wife whom I love dearly and who loves me, and together we have built a wonderful life. I live in a country that allows me to openly express my faith, which has guided me through some very difficult times due to my chronic illnesses. When my body allows there are several places close by where I can volunteer my time. The neighborhood where I live has little traffic so it is ideal for walking.

Why would I complain? It wasn’t that many years ago that I was either still in a wheelchair or stuck in a bed 24/7.  That is something I remember every day that I don’t want to get up and walk for 30 minutes or when I am asked to volunteer tutor at the nearby school, or do something for my church. I try to be as active as I possibly can be, even if I am having a flare that day or simply having a bad day pain-wise due to one or more of the chronic pain issues acting up. I do this knowing that afterwards, sometimes that day, sometimes the next day, I will pay a price for whatever activity I undertake whether it is for 30 minutes or two hours. Why?

I will give you the answer I give to patients who write to me saying;
– they know they should stay active
– use it or lose it
– for every day of non-movement (total vegging out on the couch/bed, not getting up for ANYTHING), for every one of those days it takes seven to get back in shape
– they don’t want to take a chance of being in more pain
– they were told by someone that the best thing they could do is rest, rest, rest
– there is nowhere to walk or volunteer near them and they can’t drive anymore

​Those are just a sample of the excuses/reasons I hear. Do any of them sound familiar to you? Have they come out of your mouth before?

Listen, when I was at what was probably my worst pain and incapacity back in the early 90’s I was stuck in bed unable to even walk the six feet to the bathroom. It was a couple of years before I was able to work my way up to a wheelchair and quite a few years before I learned how to walk again and got out of that. I had back surgery at one point and had to learn how to walk a second time in less than ten years. Throughout all of that do you think I thought at ANY point, “Hey, I wonder if there is anywhere nearby that needs a volunteer?” I can tell you, even though my short-term memory resembles swiss cheese, with 95% confidence that that didn’t happen.

I wish it did though or that someone told me, “Those kids down the street at that school would love to have you come in and help them with their reading.” It probably would have gotten me motivated earlier to get off my butt and put feet to floor and MOVE!

The other answer is, if you DON’T volunteer somewhere, if you DON’T decide to get up and go for a walk, get on that stationary bike, go for a swim (heated pool of course), will you be hurting anyway? Will your CRPS cause you pain as a matter of course, every day,  anyway ??    I know your answer will be yes, so if you are going to hurt whether you go for a little exercise or reach out to your fellow human being in some form of a volunteer position for 30 minutes, an hour, whatever, why not do the thing that will not only help you physically but also emotionally and maybe even spiritually as well?

Our disease is worsened by stress (read the literature, fight or flight response, etc.) and pain is lessened by the rush of endorphins coursing through your body that occurs when you volunteer (it is called a “helpers high”, google it! ) and of course it happens when you exercise as well. Not to mention the smiles you get as payment from the people you help, or whatever you might do as a volunteer. Even if you end up in a little more pain later, isn’t it worth it?

Life is all about choices and I think that is why so many people in chronic pain, myself included, often feel a sense of loss. We didn’t choose to have a chronic illness, to have our lives altered so violently, however it happened, but now life moves forward and we have to figure out a way to move forward as well. We didn’t choose a life with chronic pain but we can choose how we live going forward. YOU can choose.

You can decide to put positive things in your life every day; positive people, positive experiences, positive feelings and help your body fight against the chronic pain … or … you can choose to put negative things in your life and reinforce the pain, make it even stronger.

What are some examples of those negative things? Some examples include;

– negative, complaining people on the internet who either thrive on creating controversy or prefer to dwell on the negative aspects of the disease, the pain, the losses associated with it, etc.;
– chat rooms, Facebook pages, listservs, and the like that spend the majority of their time sharing only how horrible living with chronic pain is and not sharing anything helpful, not encouraging each other, not giving tips on overcoming the difficulties but rather just deepening the depression so many are feeling;
– watching violent television shows/movies, reading violent/depressing books, listening to depressing/violent music or speakers (there is an old accounting term called GIGO, Garbage In, Garbage Out).

If all you put into your brain is the dark and negative aspects of society and you are already dealing with a very dark and negative issue yourself you will have a very difficult time getting through every day;

These are just some examples but you get the idea. I am not saying that you have to spend every minute of every day laughing and telling jokes but if you spend more time reading positive, uplifting, educational, humorous, and fun books, listen to the same type of television shows, watch those types of movies, and surround yourself with positive people who at least try to see the brighter side of life and give back to the community they live in no matter what they are dealing with themselves then it will be a lot easier for you to handle your own illness and probably a lot more fun as well. Life doesn’t have to end because of a chronic pain diagnosis, just change.

Peace, it is all we seek and in the end if we share it with each other we can make the world an amazing place,

Keith Orsini

June/July 2016