Fibro Awareness Day

Fibro Awareness Day

fibroawarness

Today, May 12th, is Fibromyalgia Awareness day.

Lately things have been particularly hard for me and I’ve been dealing with fibro flares brought on my work stress, and lack of sleep.

What does a flare feel like? Every day I hurt, but a flare feels like I have been run over.

For me, it starts in my neck and shoulders. My neck gets so tight and rigid that it’s hard to turn my head. That migrates down to my shoulders which stiffen up and feel like rocks. The knots I get can be felt by someone else, but it’s too tender to touch. I feel like someone has been hitting me with a bat and expect to see buises that never come.

Then my back, the very center of my back knots up, exactly where I can’t reach it. It feels like bands around my ribcage and makes it hard to breath, it hurts so much. My leg muscles ache and cramp and I can’t take the weight of one of my cats sitting on my lap – it’s too much.

The pain makes it hard to sleep as every postion hurts something. Sleep is one of the things that a fibro person needs most as it’s one of the few ways we can recharge. With no sleep, there is no recharging and fatigue takes over. I’m so tired that the smallest task seems huge. Conversations are hard to follow and it’s difficult for me to find the right words to form a sentence. I can’t remember what someone has just said to me or what I’ve just asked.

It’s especially difficult because I don’t appear to have anything wrong; I look like myself. I’ve dealt with disbelief and dismissal of what I feel. I’ve been told to pay more attention, to stop feeling sorry for myself, to take some Advil.

I would love this to stop, I really would. I would love to not dread having a flare. I’d like to be able to remember comversations and be able to articulate my thoughts. I would love to be able to take an Advil and have it all go away.

I’m so fortunate to have a partner who recognizes that this is a part of me and understands my limits. I’m also incredibly fortunate that my fibro is much better that some people’s and that I am able to leave the house and hold down a job.

Invisible illnesses are still illnesses, and still need compassion and empathy.

 

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Today

Today

Yesterday was Fibromyalgia Awareness Day, and I missed it.

warrior

While I’m not an outspoken advocate for fibromyalgia and chronic pain, I do take opportunities to educate when the opportunity arises. I am also very lucky with my fibromyalgia – I am able to hold down a job, and have a  fairly active life which is often something that chronic pain sufferers don’t get to have.

I was diagnosed in the early to mid 90’s when it was just becoming a “thing”. No one really knew what it was then, and I spent a lot of time doctor hopping until I ended up with the doctor who wrote the first book on fibromyalgia. I was very sick and ended up going on disability, and was mostly bedridden for about 6 months. A big day for me was moving from the bed to the couch, and possibly even a shower.

Over the years, I have found what works for me and what my limits are. I do best with moderate, low impact exercises like walking, and my diet is paleo for the most part. No sugar, no grains, no artificial anything. Gluten free. If I cheat, I know I will pay for it. Sometimes it’s worth it but most of the time it’s not. This is only what has worked for me. So many people who I know who have chronic pain conditions don’t ever find anything that gives them any sort of break, or anything that will let them lead a somewhat normal life. I still hurt, every minute of every day. My neck and shoulders hurt so that I can’t have anyone touch them.

It’s hard to hear things like, “But you don’t look sick”, or, “Take an aspirin and you will be fine” from well-meaning people. If it were that simple, I would have done it a long time ago. Invisible illnesses are real, not imagined. They are just as real as a visible illness and should be treated with the appropriate amount of care given to any illness or dis-ease.

******

Stepping off of my soapbox now!

We will be heading north to house hunt this weekend, planning for our move this summer! When we moved here, we had 8 hours to find a place to live. It was so rushed and we didn’t even know if the place had doors or windows, we just signed the lease!

Now we have appointments at 7 places which is exciting for me. I have had a couple of deal-breakers which have already gotten broken as we have been looking at the area. K has been so generous in the past when we have moved, and I’ve gotten what I wanted in a home (washer/dryer, close to work, garage) It’s high time that she gets what she wants. She wants something in a more urban setting where we can walk to restaurants, shopping, and night life.

I have lots of reviews waiting to post when we get back.

Happy wife, happy life. Wish us luck!

Paleo

Paleo

16048587 “Paleo for Beginners” by Callisto Media.

I’m not going to add any synopsis here as it’s a mile long – almost as long as the book. This will also be one of the few times I will review nonfiction.

By now most people have heard of primal eating, or the paleo diet. It’s based on what foods would be considered part of the caveman diet; meat, vegetables, fruits, nuts, and some oils. No grains, no sugars, nothing artificial, and no seed oils.

This book  is the beginner’s guide to a beginner’s guide. It’s very small with the absolute basics, food lists of what you can and cannot eat, and food recipes. I’ve gotten more information from the wealth of amazing blogs on the internet that are devoted to the primal lifestyle, paleo eating, or ketogenic (low carb/high fat) dieting.

I have several personal reasons for eating this way.

First reason: I’m bipolar and there have been numerous studies that show that a ketogenic diet is beneficial in mood stabilization (go look for them if you are interested!) While I don’t eat a complete ketogenic diet, I come close. If I eat gluten, grains, dairy or sugar I can feel it in my mood almost immediately. It’s not a good feeling.

I have bad sinuses. Eating gluten and dairy increases the amount of sinus issues I have. After having one surgery on them already, I’d rather not have another. It’s easier to eat this way and feel better.

I have fibromyalgia. I was diagnosed in the early 90’s when most people didn’t know much about it. I was lucky enough to have as my doctor the person who had literally written the book on it at that point. One of the things that was suggested to me to decrease pain was staying away from sugar and flour – something I refused to do, telling myself that I could not stick to that sort of terribly restrictive diet. There have been studies showing that a modified paleo diet helps. I know it helps me with pain levels.

And, I would really like to shed a few pounds!

So, you would think I would stick with this religiously, right? Unfortunately no. It seems I am a glutton for punishment.

For the most part, I am good. I am able to eat good, nourishing foods that make me feel my best. Then I will get a surge of hormones, have a crap day, be extra tired or extra hungry and all I want is pizza. Or chocolate. Or donuts. The list goes on. Then I feel awful. Everything hurts, I can’t breath, and I’m in a bad place mentally.

I’m working on that part of myself. I work on it daily.

Oh, and don’t bother to read the book. Not worth your time.