Monday, January 4, 2010
HOW DO YOU EXPLAIN THE EVERYDAY UPS AND DOWNS OF LIVING WITH CRPS / RSDS ?
How do you explain how everyday life impacts Complex Regional Pain Syndrome to your friends, family, co-workers, loved ones? How do you explain it to those people who you see far less often like the people who handle your Workman's Comp claim or Social Security Disability determination?
How do you even go about trying to get across to your boss, if you are fortunate enough to still be able to work, that due to the changes in the barometric pressure I can't come in this week? That it makes your pain worse? If you have even been able to share with them that you deal with pain everyday (I know some people are concerned if they share that they may lose their job and/or benefits).
Do you simply say "Sir, because the weather has gotten extremely cold this last week and the barometric pressure has been going up and down like a ride at a cheap amusement park my pain has been off the charts." And then hope they don't fire you when it turns into many, many days in a row?
Or how do you explain to your friends that you can't go out with them, again, because the weather has been so cold every night? They tell you to just put on a jacket and deal with it and you try to explain, again, that a jacket doesn't really help, that the cold affects your blood vessels and it is more than the cold it is the change in pressure and once your pain starts going up it is like trying to catch a train that has left the station. But you know your words fall on deaf ears.
How do you explain to that WC or SSD representative who filmed you coming out of the place you volunteer once a week, or the restaurant you just visited with friends, or maybe a ball game you went to with your kids, that now it will take you the rest of the night and the next day to recover from an event that "normal" people take for granted; and only if you take a few extra meds and make sure to do not much of anything during that rest time?
Or that the only reason you were able to handle that event in the first place was because you took your meds in the first place and made sure to get extra rest ahead of time and still knew you were going to pay the price in extra pain by going, but that having a disability doesn't mean you have to shut yourself off from every fun and enjoyable thing in the world. It just means you have to be smart about the choices you make.
No one can know what it is like, no one can truly understand, no one can make those judgements about you, not even those people who are paid to make them and really think they understand, unless they walk in your shoes.
We have an article on our website written by a former insurance adjustor who later ended up with CRPS. He writes how crushed he felt when he looked back on the judgements he made on people by only looking at snapshots of their lives without realizing the impact his decision had on them and how until you looked at the totality of their days and weeks you could not comprehend what it was like living with this disease, or many other chronic pain diseases.
If someone has a lot of time on their hands and wants to search for it, please do.
I don't remember the link off-hand, there are so many articles on the site :-D
So how then do we help our loved ones, friends, and co-workers understand that we are more than what they see? That it takes a great deal of effort to participate in the events we do attend and that what we need most is understanding and acceptance?
One of the polls American RSDHope took asked the question, "What one thing would you like your Family to know about RSD? The pool was taken way back in 1998 but I think the answers are pretty relevant still today;
And then we asked "What one thing would you like the Public to know about RSD?"
I think you will find the answers to these questions interesting and might want to share some with your family and friends.
Also, if you haven't read the "LETTER TO FAMILIES AND FRIENDS OF RSD/CRPS PATIENTS", or passed it on to your loved ones/friends, you might want to check it out. I haven't updated it in a few years and there are a few people on the internet who have tried to copy what I have done but this is the original :) It has been downloaded and/or forwarded almost 7,000 times already and who knows how many times it has been read. So it must be fairly helpful! If you have any suggestions on how to improve it, please pass them along and I may include them in the next edition.
BTW, there is an option on all of our webpages at the top left-hand corner to "refer this page to a friend", that sends the url of the page to whichever email address you like and lets you include a short note as well.
What else can you do?
If your boss knows about the disease and you think it might help, maybe you could sit down with him and give him/her a quick tour through the website, pointing out the basics; CRPS description, definition, signs, symptoms, etc. This way they might be more understanding when you do have those bad days and offer you options such as working out of your home, taking work home during bad weeks, or offering a more ergonomic work space, etc. Perhaps sharing some brochures with your office partners would be helpful? Maybe they would allow you to set up a CRPS information table at the next health expo your company hosts?
There are always options if you are able to open a window of communications. I do realize though that sometimes you cannot share this information, that you may not feel your job would be safe if you did.
How do you improve understanding among your friends/family, besides sharing the website, friends/family letter? Again, share some brochures, maybe mail them to them or bring them by to lunch and take a quick minute to go over them. I have done that with some new friends and they were happy I did. They had no idea the disease was so involved and actually had it confused with Fibromyalgia. It also allows them to ask what they might otherwise had thought to be "stupid questions" or maybe even what they were worried might be embarrassing ones to you. This gives them a venue to do so. Let them know that they can always come to you with any question they have about the disease, a symptoms, or even if they think someone they know might have the disease.
I also try to explain to them what I have to do the day before and the day after a big event, such as going to a ballgame with them, including the extra pain I will be in by going, BUT making sure to add how I still go because I WANT to, I enjoy it and realize that there is a price to do so. That I would be in pain whether I go or not and that as long as I prepare my body before and take care of myself after, I can manage.
Look, a diabetic manages their disease and their life with their disease. Someone with arthritis does as well. If you lost a limb and were in a wheelchair because of it, you would have to make allowances as well. If you had a vision or hearing loss, you would make lifestyle adjustments.
Living with chronic pain requires adjustments to how you approach life. Unlike most other physical disabilities and diseases it usually requires constant adjustments, granted. And you may have to cancel events at the last minute, but if you manage your medications, your diet, your exercise, your mind, and your overall health you can have a real life; with friends, family, outside interests all involved and in an enjoyable way. It takes time to determine the proper balance and to get everyone on the same page but it is worth the work.
Life is too short to spend your life stuck at home. There are far too many wonderful experiences and people out there waiting for you to enjoy!
Just my two cents :)