What I Wish I Would've Known

Fibromyalgia

This series is going to give you an insight into what I wish I would’ve known before having fibromyalgia, depression and anxiety, and becoming a step-mom. We often look back and realize that we didn’t know anything about what we are currently going through. Because of this, I want to tell you what I’ve learned. Whether you’ve been in these situations for a while or you’re just in the beginning stages, I hope you benefit from this series!

It’s Real

The first thing I wish I had known is how real it is. I never thought it was a “fake disease,” but I didn’t understand how much impact it has on every day life. Pain is something that can be easily sympathized with. We all know we don’t want pain. However, it is much more difficult to empathize with. Fibromyalgia is a relatively rare disease, so not many people can empathize with the chronic pain.

Empathy is something that I am grateful for fibromyalgia for. My mom has it and I never fully understood her until I started experiencing the same things. Now that I experience some of the same symptoms she does, I know how debilitating the pain, fatigue, and cognitive difficulties can be. I even had to stay home from work for a couple days because of how bad it was.

There Are No Excuses

Leading up to meeting with my new doctor when I thought I might have fibromyalgia, I started to get really down about it and didn’t want to do anything. Of course proper time must be taken to process something that will affect your life so greatly, but I believe that it shouldn’t be used as an excuse.

This is a tricky situation that has some fine lines. You have to know your limits and not do more than you can, but you can’t allow it to be an excuse just because you don’t want to do something. I am still learning how to balance this.

It’s a little bit weird because I don’t necessarily want to tell everyone I meet that I have fibromyalgia and can’t do something. On the other hand, I want people to know that I’m not just being lame haha! If you have found a good way to balance this, please let me know! I’m still figuring it out, so more to come on this.

There Are Bad Days…

There are some days I can barely stand up to get out of bed because I’m so stiff and achy. This kind of goes back to how I didn’t really understand how real the pain is. There are days where I don’t want to get out of bed and a few days where I don’t get out of bed.

The difficult thing is wanting to be productive, but being unable. It’s so difficult to explain to someone who doesn’t have fibromyalgia. “Well I’ve been sore before, just tough it out.” “I only got 5 hours of sleep last night and I’m fine.” These are a couple of things that I imagine people thinking or saying when someone tries to explain it to them for the first time.

I am so thankful that I have a family who is familiar with the disease and is very understanding. I haven’t had to deal with any of those stigmas yet, but I’m sure they will come along.

And Good Days!

For all the bad days I’ve had, there have been good days as well! This is a little ray of sunshine in my fibromyalgia world. However, you have to know how to treat your good days. If you treat them poorly, they will become few and far between. I’ve heard, and now learned from experience, that if you do too much on your good days, you will have more bad days.

Just this past week I had a day where I felt really good. I went for a walk, did the dishes, worked on my computer, worked on cleaning and organizing our office space, and stayed up late. I felt awesome! It especially felt awesome because I felt almost normal; I could do things without being hampered by my illness.

However, the next day I definitely paid for all the points I had “cashed in,” if you will. I was much more sore and tired than usual. Luckily I had the time to nap and rest up, but it definitely took me a bit to get back to normal.

Now I Know

In life we will have lots of could have, should have, would haves. But those don’t do much good! This post is all about what I wish I would have known but now I do know – that’s the important part. And even more important is what I do with the information and experience. I will use it for my benefit – to get better and healthier. What are some things you wish you had known? Think about those and how you can use them to benefit you and others now.

 

 

4 thoughts on “Fibromyalgia

  1. That’s crazy you’ve been diagnosed with Fibromyalgia. I bet that’s really tough. I see young people in the hospital come in for weeks with another chronic lung illness called cystic fibrosis and it makes me sad. But on the other hand, I’ve seen how strong they are. AND how determined they are to live as ‘normal’ of a life as possible.
    I don’t know if it will help, but I’m pretty sure my friend in France has fibromyalgia or Multiple Sclerosis, and she has a few kids of her own. I remember as a missionary, she being a fairly young mother, always angry with her husband. She seemed to always complain about something and seemed to have a hard time being happy. Before she was diagnoses she would dance the Flamenco, a beautiful tradition in Spain (she’s Chilean). She is a beautiful lady and danced so well. Two years after my mission I went to visit her and something changed. I can ask her what she did or the type of Doctor (or natural medicine chiropractic guy) she saw. BUt she was so incredibly happy! She had another baby, and was so optimistic. Whatever she did, she went through a pretty incredible change. It was really cool to see.

    1. Thank you so much Lisa. One thing I’ve noticed already from sharing my story is that we are not alone, and that’s what I want everyone to know! I’d love to know what she did to feel better and happier.

  2. Really great post. I have an autoimmune and secondary fibromyalgia (came about due to living with chronic pain from autoimmune for so long). I have had autoimmune for 9 years and sadly, still make the mistake of doing too much on the good days. I’m a Type A person so having to slow down kills me. As a result, when I’m feeling good, I try to do all the things…and then pay dearly. As for not looking lame, I just do what i can do and don’t feel guilt about it. I don’t tell everyone I’m sick, but people who are close to me know so if I have to hang back, they understand why.

    1. Thanks so much for reading Kathy! I love hearing from others who experience similar things. I totally understand trying to everything even when I don’t feel well. Thank you for your input and for reading 🙂

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