Sunday, July 17, 2011

Who, Me?

I'm on facebook quite a bit, reading the posts people write about RLS/WED. I answer when I think I might be able to help. I also check out the discussion board on the RLS/WED Foundation website, as often as I can. I get phone calls and emails from people who suffer with this disease. All are looking for help; medications don't work, doctors can't be found who understand, family and friends just don't get it. I wish I had the magic answer for everyone because I really do understand how they feel. I've had RLS/WED most of my life and although it is mostly under control, there are time like tonight when it is truly miserable.

Most of the people I "talk" to are in the early stages of finding out what they have and trying to find relief. Others have had this for years and are barely hanging on. Still others are fighting back in whatever ways they have. The first two groups can only think about survival at this point. The last group, while having just as many problems, are actively taking a stand in the RLS/WED arena.

I am not condemning anyone here; each person has to do whatever it takes to get through the day (or night). What I am doing is pointing out that the people who are active in this fight seem to handle it all better. They seem to have more optimism, more spirit, more....SOMETHING! Maybe its just that they feel they have more control over a disease that wants to take over our lives.

Before I get bombarded with replies from the first two groups (that would actually be a good thing!), let me explain what I see. People who are actively involved in working towards better lives and a cure do so in many ways. Many donate frequently to the Foundation so that the Foundation can continue the work we cannot do ourselves. Many are support group leaders and advocates. Many watch the media and write responses to the mainline idiots out there, trying to set the record straight. We have patient representatives meeting with the FDA to let them know how important new medications are. We have people who try to help others on facebook and the discussion board. But way too many wait for others to do the work and complain when results don't come as fast as needed.

You may not be able financially to donate much. But if you really want to, you could find $5 occasionally to send. You can write letters to the editors of your local newspaper or ask the Foundation for a general info letter that you can send. You can support others on facebook or the discussion board. But the most important thing you can do is educate yourself about the disease that is running your life. Make sure your information is correct and up-to-date at all times. Pass that information on to others when you can, especially if that person is your doctor, a friend or family member. Learning all you can about RLS/WED is the most important thing you can do and it doesn't cost a thing. Except maybe some time. At 2:00 a.m. when you are walking the floor, read a book about RLS or go on-line. If you need to walk a few minutes between pages or sites, go ahead. If you get just one tiny bit of information during that time, then RLS didn't steal another night away from you. Will you still have RLS/WED? Of course. Will you be gaining some control over it? You bet and that helps--knowing that you are doing something.

Moon and stars,


Debra Stang said...

Alliant International University recently reported on their sleep blog that a gene has been identified. The gene can be used to predict who will suffer from RLS. Ultimately, as we learn more about it, it can be used to develop new and more effective treatments. I'll be glad when that day comes.

Debra Stang
Alliant Professional Networking Specialist

Welcome! said...

Exciting news! I've been reading about it. Truly exciting for those of us who have Primary RLS. Thanks for posting and please, send along any new developments as you can! Just curious, how did you find this blog? I would love to reach more people but it is slow going.

Anonymous said...

Most of us have to research and learn - so that we can educate our doctors !!

Polar Bear

Donna McLellan said...

I am on disability so really cannot even donate 5 dollars, seriously. BUT, I stay active every day, and I agree with you that the active people definitely deal with all aspects of this insidious disease MUCH better. We are calmer and immediately go looking for answers for other people to help.
I ahve not slept in 4 days, so I have been even more active the last couple of days, and it actually helps my anxiety and my general state of mind. speaking to the "gene post" more than one has been discovered. I already knew this years ago. me and both of my sisters have severe RLS, plus my 2 nieces, and my oldest nieces 2 kids who are 4 and 7. Plus, we all have PLMD. Neither of my parents had/have it, so the evidence points to the fact that one f them at least had the gene, it was dormant in them, and then they passed it onto us. To me, that is the most important research. Oh, and I just found out that my niece's husband has RLs also, so my family is one big support group. :o) Thankfully, I do not have to deal with family members who think RLs is "all in your head" as others have to. so, that makes it a bit easier for me on some level.

Kathy said...

I truly do feel for those people who have no support from family or friends, much less doctors. I can't imagine how horrible they have to feel when everyone close to them think they are faking. I hope those people find support on-line so that they realize they are not alone in this.