Thursday, January 14, 2010

Houston, We Have Landed

Well, I think I'm finally coming out of the clouds I've been in. I've been feeling really overwhelmed for the past couple of months and I think all the "stuff" that goes along with the holidays was just more than I was ready for.

Since getting diagnosed with Fibromyalgia a couple of months ago I feel I am finally coming to terms with it. I'll be honest enough to say that I have been really angry about it. I was happy to FINALLY have the correct diagnosis, but I was also first in denial. This was not happening to me. I would take a couple of pills, or get a shot, and be done with big deal

I've always been one that believes knowledge is power. The more I read about FMS, the more I learned...and most of it, I didn't like.

For example...the part that says this is something I will have to deal with forever.

...and the part that says I need to change my lifestyle to adapt to my limited abilities.

...oh yea, and the part that says pain will be a part of my life that I will need to learn to tolerate.

Good times.

So I cried...a lot. I still do occasionally, but not nearly as often. Mostly it's out of frustration. I don't like being told I can't do something, even if it's by my own body.

I also got angry. And I yelled out "I don't want to do this anymore!", "It's not fair!" "I hate this!"and other things I won't put here.

Then I mourned what was gone, and what would never be again.

And slowly, I began to accept my new lifestyle...just as anyone with any disease or syndrome must do.

One day last week I realized how tired I was of being sad and just going through the motions of living. That's not how I wanted to live. So I sat on my bed and had a good long talk with God. I told him all my fears and frustrations and asked for guidance on how to make the most of my life.

Since that conversation I have had a sort of metamorphosis going on. I'm learning and growing and I'm finding things I'm thankful for.

I've learned that it's ok to ask for help. I don't HAVE to do everything on my own. Asking for help is still hard for me, but it's getting better...thanks to my wonderful understanding husband.

I've learned that I must embrace my new limitations and to do what I need to do to keep me from having a lot of pain. We have reorganized the kitchen so that the items I use daily (or most often) are between hips and shoulder level. No stooping, bending, or stretching to reach things and that keeps me from getting pain. I have a stool with wheels to sit on when cooking so I can avoid the pains in my back that I get from standing very long. It's all about adapting and finding what works for me.

I've learned that having Fibromyalgia can be very lonely if I don't reach out. On my "bad" flare days I really don't talk to anyone because I can't even think about anything but the pain. But on other days it gets lonely sitting down for most of the day by myself. I'm not big on tv, and I can only read so much in one day. If the guys are gone in the evening, then I'm alone at that time too. I'm learning to reach out. I have found a couple of wonderful online support groups and then of course, there's Facebook. Not only do I interact with the people I'm friends with, but there are support groups on there I enjoy as well.

I've learned that stress is bad for me. It tenses my muscles and causes me great pain. I'm learning to avoid stress and to release it. This is another tough one for me, but it is getting better.

I've also learned that some people just don't get it. Not only do they not understand Fibromyalgia, but they have chosen to not learn about it. There are those who don't even believe it's real. Let me tell you it IS very real. But, due to ignorance, ignorant comments are made, or they think you're just being lazy, or they don't understand that if you have to cancel an outing that it's not by choice. Hurtful things are said, but that goes along with the "stress" category and I just can't afford to let it get to me. I have to let it go and give it up to God. I'm learning that it's their problem - not mine, and there's nothing I can do about that.

Lastly, I've learned that life can still be great - different - but great. Sure there are things I can't do anymore, but I'm choosing to focus on the things I can do, and the positives that have come about since getting diagnosed.

The burden I had been feeling is being lifted. As I learn and grow, I'm starting to feel happiness again, and I have missed that so much. There is more to learn by me, and more research needs to be done in labs to find the root cause of this disease, so that someday a cure can be found as well.

If you want a glimpse into what having Fibromyalgia feels like, try this example...imagine you have the flu. Think about the aching you feel all over. Think about the headache. Think about how all you want to do is go to bed. Now, attach a spring-loaded clothes pin to your index finger at the top (keep thinking about the flu symptoms while you do this). Keep the clothespin on your finger for 30 minutes. What you are feeling is what the pressure point feels like. There are up to 16 pressure points and some have pain in all 16 at the same time. And the pain and flu symptoms can be, and usually are, daily.

I also encourage you to watch this video. It pretty much says it all...


mom and dad said...

thank you for sharing this info. I as a mother feel your pain and wish there was something I could do to fix it. I have studied alot on this disease and yet - until you really have something that affects you - one does not 'get it' and that is being totally honest. That is true if broken bone, headache, measels, flu, etc.etc.etc. - So, with that said -I am so sorry that you are having to go through this and I only wish I could kiss it and make it go away. We love you and we are always here for you.

Joyce said...

Wow... thanks for sharing the video and your testimony. Very powerful! My prayers are with you! I also pray for a cure! xoxo

Pam from alertandorientedx4 said...

I had a dear friend who had FMS, along with a host of other problems, most of them probably stemming from the FMS to begin with. I will pray for you Dena. I don't stop by as much as I used to. Take care...