I need to be normal some days

Yesterday I went out with a friend and a co-worker to spend the day at IKEA. There is only one Ikea in Oregon, so it took a little over two hours to drive there. The store is HUGE. I haven't been there for several years and I really wanted to go look for some furniture for my daughter's tiny bedroom.

I was looking forward to spending time with my friend. I've always liked my co-worker, we were friends before she interviewed me for the job I have now. But I've been careful who I let know that I have fibromyalgia. She is now a supervisor for another team and I don't want to limit my chances for future promotions. So, I was worried about how it might look to her if I got tired too quickly.

For the Ikea uninitiated, the top floor is the showroom with a long maze-like path winding you through the showroom which was full of dozens of tiny examples of living spaces. My IBS was acting up while I was upstairs in the showroom and there is only one restroom on both floors so I had to be careful while navigating the maze to remember how to get back to the bathroom at all times. There is also a restaurant there, YUM, I love Swedish meatballs with lingonberry preserves.

After that you go downstairs to shop before hitting the huge Costco-like warehouse to pick up your boxes with the parts of your furniture. I wasn't sure I'd make it through. In the showroom there are hundreds of chairs and places to rest. However, once you get downstairs you have to really look for benches and places to sit.

I made it through with only limited pain and fatigue during and afterwards. I had a day were I felt as close to normal as I've felt in a long time. I had to keep taking my pain killers and tried to be discrete about it. I didn't talk about fibromyalgia the entire time we were together. I was a normal person out shopping with friends.

I knew not to plan anything today. I'm praying that I won't be too tired tomorrow. I need to go to work. But even if everything isn't perfect, it was worth it for the day of near normalcy.

What happened to my control?

chron·ic   [kron-ik] adjective

Having long had a disease...(of a disease) having long duration (opposed to acute).

Long duration...I've only been diagnosed for three months and it already feels like I've had this for years. The habit of waking early enough to take my pain meds and going back to sleep for an hour so when it is time to get up and get ready for work my pain isn't debilitating. The habit of standing still for a moment after getting out of a chair or my car or bed to make sure that I have my balance and to see what is hurting. Watching people move effortlessly and wishing I could make them understand what a blessing that is; that someday it could be gone in an instant.

I'm better than I was. Putting on my bra used to take fifteen minutes and more than once I just stood there and cried. I'm re-learning how to walk normally again. I've been walking with a limp and short steps for so long that I've forgotten how to walk normally. My hands don't hurt nearly as much as I used to and I'm starting to build up their strength again.

I've made numerous adjustments: bras with a larger band size, slip on shoes, picking what seats to use very carefully and wearing clothes that aren't too tight or hard to get off. I'm learning my limits and how far I can push myself. I'm getting more sleep, eating better, taking supplements and visiting the chiropractor. I'm learning that it is important to take care of me, so that I'm able to take care of the rest of my family.

Chronic...maybe forever...that is a long time, very hard to wrap my mind around it. If I think about it too hard I want to panic, or cry. So I try to focus on today. Today is enough, I don't need to worry about any more than that.

Three months in

I've decided that I've been dumping too much on my friends and family so maybe I'll talk to all of you out there in the interwebs. Three months ago I was diagnosed with Fibromyalgia. The frustration of a chronic disease along with the stigma of a diagnosis that not everyone "believes in" has made this a difficult diagnosis to deal with.

Wrapping my mind around 'there is no cure' and 'I'll be dealing with this for the rest of my life' is nearly impossible. If I catch a cold, in seven to ten days I'll feel as good as new. If I break my arm I'll wear a cast for six weeks and it'll be healed. To realize that medical science has no answer...it is mind boggling. How do I go on? The doctor can only give me advise, not answers.

So I start my new life...a huge collection of pills, an exercise program, a physical therapist and a chiropractor. Together with my doctor we forge ahead to find out what helps me feel better.