People Called Me Lazy

free 'sweet' hugs

My Fibromyalgia was diagnosed four years ago along with an autoimmune (Hashimoto’s Thyroiditis) disease and a connective tissue disorder. They both were gifts I got after menopause. Thanks. I’d rather burst into tears a hundred times and change night shirts six times a night than have this. I’m sure I’ve had Fibromyalgia for a long time, I just didn’t know what it was.

I never had the same amount of energy that other people had and I always needed ten hours of sleep. I can’t function on less than eight but ten is ideal. Let’s not forget the nap too. I used to nap every day for three hours, every single day and I would head to bed at 9:3o pm each night. Every bone in my body hurt, I  thought I had the flu,  without the temperature  but it never went away. New pain pops up like the springs of an old mattress and I just sit there in utter disbelief.’ No,’ I would say to myself,’ it can’t be. Isn’t there enough pain and discomfort?’ Sigh. Apparently not.

This pain I have makes me feel like a hundred years old; my 83-year-old mother is in so much better shape than I am. She does yoga once a week, she swims every day,  she is out of her apartment all day, going to the city, socializing with friends. She literally runs around without stopping to rest or sit down or G-d forbid, nap.  In the beginning, before she understood, (does she really understand now?) she used to tell me that I needed more exercise which is a common thing for people with Fibromyalgia to be told, over and over again. Read My Lips, NO CAN DO. I can barely make it around the block twice with my friends. They continue for a third loop and I beg off, mostly I’m fine with it, a few times I have had a twinge of embarrassment even though there is no reason for me to feel that way.

You get unsolicited advice from many people, people who don’t have a chronic pain illness. Go holistic, just get massages, change your diet. They might as well say dye your hair, or drink raw eggs or spin like a top and throw up as a cleanse. We KNOW the choices that are out there, really, we do. But generally we look to other pain sufferers for the answers not you. We know you mean well but frankly, it doesn’t help us.   Often, we don’t know WHAT to do and we are the ones that are suffering.  I’m there now. I’m not only caught up in the cotton-headed Fibromyalgia Fog (where am I, what did I come up here for?) that is my life but I feel unsure and anxious about my options.  I don’t know what to do or who to turn to or who to trust.  My energy is better from the medication I am currently on but now I have new pain in my legs. Great, I can stay up all day having more energy but with more pain. Do I have more pain from the side effects of the medication or from Fibromyalgia or wait, it could be from my auto-immune disease or connective tissue disorder. Listen up, world, I can’t speak for other people, but I am often unsure and clueless, trying to live in this world, day by day. I’m the first one to admit that I have no clue if what I am doing is right. How can we know that? We go to top doctors and hope for the best, sometimes it just isn’t enough. Do we settle? Do we stretch? Do we give up on medications? Is six weeks enough time to know that a medicine is working? Who knows? We don’t have the answers either, believe me it’s our fervent wish to understand and solve these medical mysteries.

I have stopped scheduling things in advance because I don’t know how I will feel that day at that time. My good friends understand, they will say “let’s talk the morning of” and I really appreciate it. My friend Sarah will just say “let’s see how you feel” and her concern (and no advice) is for my health and I know she just wants me to feel good and be happy; I also know she worries about me. I appreciate everyone’s concern, truly, I just sometimes don’t know what to say. I wish I was healthier too and in less pain,  I wish I didn’t have new symptoms from time to time but I do. Please understand that I like it a whole lot less than you. I know you feel bad for me but be careful of your words, saying “just when I thought you had every symptom in the book, you get another one,” is really not helpful. I know what I am going through you don’t need to tell me. Just be there for me, listen, offer me gentle hugs and a shoulder to cry on, be supportive. Take it from me, that’s plenty and more than enough.

5 thoughts on “People Called Me Lazy

  1. What you’ve described is just another symptom of life with long term chronic illness. It doesn’t just make our bodies painful, but our social interactions, too. And people trying to play doctor and “treat” you is the worst, just as making jokes out of the situation to make themselves more comfortable is completely not helpful. It’s hard cause there are no right answers really.

    But anyway, I came across your blog while looking for other people living with chronic illness so I thought I’d stop along an say hi. Stay strong in the face of people who tell you crazy things that you know aren’t right! I write this comic about my life with chronic illness and I’d love for you to check it out and hopefully get a laugh. You can find it at http://acomiclifeindeed.wordpress.com

    Stay well fellow chronic disease battler!
    – Miss Waxie

    Like

  2. I too am sending you cyberhugs…..I think we should have a list page of all the advice we get from people that is super ridiculous.

    Sometimes I look at people and think, “Thanks for that advice, like I hadn’t thought of that before, b/c I am too stupid?”

    I actually had a friend of mine (who suffered 18 months of a disability) respond to my comment: “I am so depressed and confused, I am losing my business, I can’t seem to get out of the depression. I feel like I am losing everything in one fell swoop and I can’t stop it.”. Now, after having been in my position, you would think I would get “Oh, sweets I am sorry, that sucks”. Instead she said this. “You should go out for a nice brisk walk in the sunshine, too bad about your business….well I have to run off now…you know how it can be if you are late for a shopping date!”……..WOW………..

    After that, I rely on the kindness of my fellow painies to understand and empathize and say “it sucks and we are here for you and we understand and here is a big fat cyberhug!!!”

    With that said…..it sucks and we are here for you and we understand and here is a big fat cyberhug and very strong pain free vibe we are generating in your direction.

    Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s