Today I am beginning this post with the hope of answering my own question. I believe I am struggling with coping. I don’t know if it is the heat? The barometer? My medication? Or is it the overwhelming feeling of dread waiting for my body to flare once again. It is basically a fact with fibromyalgia. I know to expect it. I have put together a fibromyalgia toolkit with the items I need to combat a flare. But. I am questioning will this be the last flare I can handle?
I’m tired of feeling almost normal for days then being knocked down by a flare. I’m tired of feeling the increased pain followed by painsomnia. Yes, painsomnia is real. The pain is so excruciating that you can not sleep. All you want when you are in pain is to sleep and find some peace in that slumber. When painsomnia hits, you will not be sleeping. Your flare symptoms will increase even more and will remain with you a few extra days. Why? Sleep heals us, no sleep exacerbates the pain.
I think my body will not give up because it has been beaten down by worse things in this world. I am wondering if mentally I just might break? Fibromyalgia is the gift that keeps on giving. The cruelest part of fibromyalgia is that it is a trickster. You fight through the first few years of this disease in constant high levels of pain, basically flaring non-stop, but you can sleep. In fact, that is about all you can do until your body realizes this is no virus you are fighting but a lifelong central nervous system disorder. Then you get a chance at a few, low-pain, ‘normal’ days.
Mentally, this disease works you over. It makes you think before every action and react to every situation. If I do ‘A,’ then ‘B’ will happen, probably. If I do ‘A’ and ‘B’ doesn’t happen, I may try to do ‘A’ again. This time ‘A’ causes ‘B,’ and you flare without really understanding why it didn’t cause that reaction before. This disease toys with you as a cat toys with a mouse. Soon, if you aren’t careful, you begin to play dead all the time in an attempt to escape the pain. (It works for the mouse at times.)
Try to imagine the worst pain you’ve ever felt. You are given pain relievers to combat the painful incident. Then it stops… you are active again, feeling good, going to social events then the pain comes back. Now, imagine this horrific pain happens to you every month. Now times that by three ‘episodes of pain’ in one month. Each flare lasting anywhere from 1 to 3 days, up to a week or more. How many good days will you have in one month? (None of them will be pain-free, you lost that privilege once you were diagnosed with fibromyalgia.) A few good days, you may even have many more good days than bad. But that flare is always coming!
I consider myself pretty resourceful and very resilient. I have had fibromyalgia for over 20 years. I prepare and plan my strategy going into and coming out of every flare. But I am feeling less prepared this month. Less confident in my abilities.
So, when does one break?