It is finally here! A day for ‘us’. Fibromyalgia Awareness Day is upon us or it is officially Saturday May 12, 2012. It is about time a day has come around to be dedicated to those of us with this unforgiving condition. So for those of you out there who still think fibro is not real, let me tell you about a day in the life of fibro.
It is 2 30 AM as I type this. I have a *big* day tomorrow… a very taxing day. Yet pain is winning again and sleep is fleeting. In all fairness, yesterday I hurt so very badly through my neck and shoulders and As chronic pain patients, we are told to rate our pain from a one to a ten. I am rarely, if ever, below a seven. Once in a very blue moon I maybe get to a six or six and a half. A couple months ago I had a ‘good week’. My pain levels were about a six for three days in a row. It was wonderful! Now bear in mind someone without fibro would consider a five very uncomfortable. For me, it is a walk in the park. Remember, I speak not just for me, but for the many friends I have made that also suffer and the millions of others I don’t know that are sitting up at 2 AM and 3 AM, etc. We all understand each others pain and embrace each other as sisters and brothers in this fight.
So why no cure? I was diagnosed in 1996, but started getting the symptoms in 1993. So I am a near twenty year veteran to this ugly condition and no cure is anywhere in sight. I have seen treatments and theories evolve. Some make sense and some do not make any sense. However, I do not think we have come far at all. If we had come far, I would not be sitting here (now) after 3 AM writing this blog. I am happy to be writing…. it is my favorite thing to do. It is just that I would rather be sleeping right this moment. My theory on why there is no cure is simple: it rarely affects upper middle class white men. I realize that sounds a bit harsh and even borderline hysterical, but I have had numerous people agree with me.
So what does someone say to the fibromyalgia patient in their life? Whether someone close to you has fibro or it is your neighbor or co-worker, let me give you a few hints.
1. Remember, most fibro patients are also horribly fatigued, pain takes a lot out of your body and does not leave much energy in reserve, so if the fibro patient in your life has to ‘cut out early’, don’t tell them to get a energy drink and deal. Remember, they WANT to be having fun! Believe me! They don’t want to be asleep by 9 PM, but sometimes it just cannot be helped. Just understand and say ‘we can do ‘this’ next time’. I have had people CLOSE to me, in the past, actually talk behind my back about falling asleep, etc (this is before my Dr disabled me out and I was working 40+ hours a week at a highly stressful job with a 2 hour daily commute). It is hurtful to think that someone who loves you would judge you like that.
2. Don’t try to give well meaning suggestions. We all know you mean well. However, we are in a very good relationship with our Doctors (note the plural because most of us have at least 2-3 Doctors working together; I have four that work on my fibro, alone). We have studied and tried everything there is and know what works and what does not.
3. DO NOT say, “Just push yourself”. Pushing ourselves means setting up, on the low end, for a flare, and on the high end for something dangerous like an accident. I *NEVER EVER* have had good outcomes when I “push myself”. Just ask my husband if you do not believe me.
What TO DO is 🙂
1. Just be an understanding support person. You don’t have to say you are sorry….. just understand when I or my fellow fibro sufferers have to ‘sit this one out’ or call it an early night. My best girl friend in the world drove 6+ hours to spend a long weekend catching up. She was so very understanding when I had to take a cat nap each day and when I was down or the count well before midnight (maybe even 11 PM) each evening. She understood and it was wonderful.
2. If you are in a position to help with some tasks and can offer a hand here and there, do so. Call, visit and please, please, please *do* include your loved one in any and all activities even if you think they may be too taxing. The fibro patient knows their own limits and will let you know if they can join in or have to decline.
3. Finally, visit your loved one often, especially if they have gotten to the point that they are disabled. Fibromyalgia patients used to function at 100% and on the same pain scale as everyone else. Now we live in a skewed view where a 6 pain day is a ‘dream’. Our lives are imprisoned because this disorder makes the call on everything. I spent a couple hours at a kite festival a few weeks ago and spent the rest of the weekend paying for it. I am still glad I went as two hours of fun with my husband was worth it. Time with my family is *ALWAYS* worth any flare, extra nap, etc. Always.
So, today please take a moment to remember those of us that hurt all over, all the time. Remember the last flu you had? Remember how you ached all over? That is pretty much how fibromyalgia is except you add brain fog, IBS, muscle spasms and a host of other co-symptoms. Please pray with those of us who have it that a cure is found someday soon. Meds are ‘ok’ but not nearly as great as a full cure. Plus, the meds only lift some of the pain….. the pain is always there throbbing away. It never ceases completely. Say a prayer that a cure or fibromyalgia will be found soon. Next time you get a chance, do a random act of kindness, say something kind, or better yet, visit someone you know who has this horrible malady. The more people are aware, the closer we are to a cure.