Saturday, December 26, 2009


I wish to suggest that a man may be very industrious, and yet not spend his time well. There is no more fatal blunderer than he who consumes the greater part of his life getting his living. All great enterprises are self-supporting. The poet, for instance, must sustain his body by his poetry, as a steam planing-mill feeds its boilers with the shavings it makes. You must get your living by loving.

I often get the question, "Now that I have CRPS what am I supposed to do? I can't work anymore, I have most most of my friends, many of my family doesn't understand ... all I want to do is stay at home because I hurt so much and the less I do the less I am going to hurt more."

I do understand. Having had this disease for 3 1/2 decades now, as well as other forms of CP, I know all too well the social issues that go along with having a chronic disease enter your life;

1) Friends fall by the wayside as you are no longer able to do the fun things you used to do together.
2) Family members who may not take the time to learn about your disease may feel you are "letting your pain control your life", or even that you are exaggerating your pain. Especially when it comes to a disease like CRPS that is so little understood.
3) Many patients lose their home and/or much of their life's savings due to medical bills, lost wages, etc.
4) Struggles within the family unit as the stresses due to all of the above and the actual disease itself impact the family like an atom bomb going off.

It is easy, considering all of the above, to let yourself curl into a ball, hide in your home, stay on the couch, and hide from the world. But thinking that by doing so you will be in less pain, by avoiding any possible behavior that could increase your pain will only serve to further insulate yourself and could put you into a deep depression.

Your pain will be there, still be there, whether you leave your house or stay. Whether you venture out into the world or stay and watch ten hours of TV a day. So you have a choice;

1) Get involved somewhere, out there.
2) Stay in your cocoon and build more layers of protection, further separating yourself from life.

If you do venture out it is true, you will probably increase your pain somewhat, for a short time. But it may just improve your quality of life. So now you may ask, What is I can do? My pain doesn't allow me to do much of anything for any length of time? I can't work, I can't do the activities I used to do? What's left?

A good way to get back involved in the world is to volunteer. Volunteers are needed all over the country, the world. In every aspect of your community. Do you like animals? Volunteer at an animal shelter. Belong to a church? There are many opportunities there. Like working with kids or young adults? Talk to your local school or community center. Have business experience to share? Talk to your local Rotary Club or Community College.

There are some wonderful reasons why volunteering works for people with chronic illness;

1) You can almost always set your own hours, how much you work, how often, which days, etc. Volunteer as little as two hours a week or three days a week, whatever your pain will allow you to do.

2) You are able to work with the volunteer coordinator, explaining your disability and why you are limited in the time you can volunteer. They are used to working with the disabled and working around your limitations.

3) These types of organizations are extremely appreciative of any assistance you can provide.

4) It is a very rewarding experience.

5) It gives you a mini-vacation from your own pain.

6) It opens you up to a whole new group of people who don't know you as that "person with CRPS" but rather as that new volunteer with the great attitude. And usually the other volunteers are also very nice people with very positive outlooks.

All these thing combined help to give you a more positive spin on life in general, even if you are only there a few hours a week.

I volunteer, not only with American RSDHope but with a local organization. It isn't easy and it is only for a few hours a week. There are many weeks where the day after I volunteer I am in a great deal of pain. But even with the extra pain, it is worth it.

My parents always taught me; Gods gift to me was my life, my gift to God was what I did with it. Whatever your religious beliefs, man has a debt to his fellow man. And if if it helps you in the process? More the better!

peace to you this holiday season. May you start out the new year with a renewed sense of purpose!


American RSDHope

1 comment:

Tough Cookie said...

Lovely post and very true. I live by this idea and try to spread the word, too. We need to put our energies toward something positive. I am working toward my master's right now, but am doing it in a way that works for someone who has a disability. It keeps me going.