What defines me

I haven’t often complained here about my disease.

I guess in the realm of diseases I should be happy to only have Fibromyalgia. There are so many other diseases. Degenerative dieases. Diseases that can take you away from you loved ones, that can cut your days short. Maybe I should count myself lucky to “only” have Fibromyalgia and not something else.

After years and years of agony, pain, insomnia, depression, and the physical inability to get around my house, let alone the world. I was finally relieved to know I had “something” and that I wasn’t as crazy as I thought I was becoming. I literally thought I was losing my mind. Over and over from doctor to doctor, the words I kept hearing were “That you are too young to be having this kind of pain and mobility issues”

The one thing that helped with my pain was a powerful narcotic. So powerful that it literally knocked me on my ass and made me drool until my next dose was due. I remember telling the doctor that this couldn’t be the only way. My daughters were 7 and 4. What kind of life did I have. I didn’t care if my life was full of pain, because this so-called pain free life, it did nothing for me. What happened was my kids became a bit more independant quicker than they should have. They also came to resent the pain that I was in. Sometimes chiming in with others saying “If you only didn’t want to be in pain you would be fine.”

For years my husband didn’t understand the pain I went through. He said that he understood, but deep down I knew he didn’t. He would still get frustrated when things didn’t get done. My great accomplishment of taking a shower and feeding the girls food didn’t really appease him. He never complained, but I could see it in his eyes. He never said that he didn’t believe I was in pain. No, he loved me too much to say to my face I was a liar, but I could see it in his eyes. The doubt that lay just beneath the surface. The hope that one day I would “Just snap out of it” It took a back injury and over six months to heal that he finally understood. And when he did understand he apologized. That meant so much to me, for him to finally understand.

I remember not long after I finally had a name for my pain, Fibromyalgia. At this point I wasn’t taking any meds. I had gone into a remission of sorts and was feeling better about myself than I had in years. I signed up for a study for patients that had fibromyalgia. I carried a Palm device around with me, recording my pain, answering questions. I would drive an hour and a half each week to meet at the Lab for the test patients. After downloading my data, I could hear the woman in the hallway complaining that I didn’t have “enough pain” for her. That sometimes “these patients have dealt with pain for so long that they just don’t know how to comprehend it correctly” When she opened that door I knew that she was going to ask me to leave the study. She tried to get me to admit my pain was greater than the number I assigned to it. Maybe it was, but at this point I had been dealing with this constant pain for over 4 years. At this point I was walking around freely, being able to sit down and get up without assistance. So I didn’t argue, I left.

Two weeks later I wouldn’t leave my house for nearly a month because of the pain and fatigue. It was at that time I started taking meds. I take Nortriptalyne (or however its spelled) It is a sedating anti depressant that helps me get the deep sleep I need to cope with the pain. It has worked for over a year, I think it may have stopped. The doctor has asked me to double my dose to see what that does and I don’t know how I feel about that. I know that part of it is the emotionally drained and exhausted part of my brain that thinks “we can still do it, we don’t need more meds” I don’t know why I am so afraid of meds. I know at this juncture in my life that I am probably never going to be med free, that is just the way it is. My husband and I talk about a day where I just won’t be able to get along. Or the day when my vision finally fails me (I have such horrible vision and I am blind without my glasses) And I laugh and joke, but in the inside it is just killing me. I never want to be that hollow shell of a woman ever again.

The reason I am writing this is for a couple of reasons. One, if you have Fibromyalgia please know that you aren’t alone. There are millions of us out here willing to talk to you. Chances are we have been through what you are going through now. If we haven’t we are still a great ear and/or shoulder. Which brings me to the Second reason why I am writing this….I really want to help raise Fibromyalgia awareness. I am not sure how I am going to do that. I have been praying about it for a while and am not sure exactly what direction I am going to take, but I know I want to take a step in the right direction. I am thinking of starting a support group in the area, I have all the paperwork, I just haven’t made any decisions yet, because this won’t only affect me, but my family as well. So they need to be included in this choice. But as I am revamping this site I am going to dedicate more time here to education and awareness.

Don’t worry it won’t change overnight, it won’t be all Fibro all the time, but I did have a heaviness on my heart to write this.

Fibromyalgia doesn’t make me, but how it has changed my life, it has helped define me.

For more information on Fibromyalgia, please check out this site

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  1. I’m so sorry you have such a burden to live with… and I thank for such an informative post. You are an incredible woman to share such a touching story. I hope it will bring help and comfort to many people out there.


  2. I am so sorry that you are living with this, Heather, but I am also very glad that your husband does understand now. I hope things improve for you.


  3. Thank you for sharing this part of your story. I hope you’re able to find a path that helps… :o)

  4. I don’t have anything else to add really… so… *hug* Let me know if there’s anything I can do.

  5. Thank you for sharing your story. It will surely help others in so many ways.

  6. I am so sorry that you have to live with this. Constant pain is one of the most frustrating things in the world to deal with – I have delt with postherpetic neuralgia which is essentially nerve damage from shingles. I know it’s not nearly as bad as what you’ve gone through but I completely understand what you are saying about people not getting it and not quite believing. Thank you for posting this.

  7. Thank you for sharing your story. I didn’t know what it was, but now I’d like to learn more. I look forward to hearing about how you’re raising awareness, and maybe how the knitting community can help!

  8. Heather you are so brave. It is amazing what you have dealt with and you do not seem affected; although I know it can take up so much of your self.
    Thank you for sharing you story.

I would love the chance to chat with you!