Tuesday, June 16, 2009

Coming to grips with a chronic illness

As some of you I'm sure have noticed that over the last year or so I really am having a seemingly impossible time coming to terms with my illness. It's ever changing and constantly reminding me of it's evil presence in my life...I like this excerpt that I read today...

" The sad reality is that living with fibromyalgia is, itself, stressful. The early period just after diagnosis is the toughest because you have so much to learn and deal with. But the stress doesn't end there. You have an illness that changes from day to day, and things need to get done in a world that doesn't slow down when you can't walk very fast. Learning to accept and manage as much stress as possible will help you in your recovery process.
Stress is often defined as a perceived inability to deal with a difficult situation. Yet stress is also the body's reaction to change, which means that it can be a catalyst for new thing and new behaviors. The challenge can be physical or mental - the definition is purposely broad. And, because each of us has our own perception of what a difficult situation is, what triggers stress is different for all of us.
It's hard to separate fibromyalgia from stress. It's stressful to be in pain, worse to have unpredictable symptoms... In fibromyalgics, chronic pain is the number one source of stress. That doesn't even take into consideration the stressfulness of the fact that you have had a complete change in your life from your fibromyalgia. It's even more stressful to have cognitive problems and push yourself through fatigue. Add to this the normal fibromyalgia symptom of anxiety and nervousness and you can see the problem. Even without any added stress you're using up a lot of energy that you can't spare. Here's what you should know: Stress is in the body and the mind. It makes us feel anxious, short-tempered, and overwhelmed. It's a vicious cycle that makes every single symptom we have worse."

---pg 123 "The First Year - Fibromyalgia" by Claudia Craig Marek

I think this reading makes several good points...it's kind of like which came first the chicken or the egg? In this case it's which came first today, the stress or the fibro? It's an ever changing circular dance between the two. I seem to constantly beat myself up for feeling "anxious, short-tempered, and overwhelmed" as the author wrote...I didn't see these "defects" as linked to my chronic condition/situation. I keep feeling like I've always been able to handle these situations before, why now is it so hard? What's wrong with me? and that's a shitty attitude to have!

Part of my struggle is that a huge part of my heart doesn't want to come to terms with this illness...it's unacceptable and how does one go about making the unacceptable...acceptable? I know that in order to pull off that miracle, my attitude is going to have to change dramatically. Talk about being anxious and overwhelmed.

I'm clearly my own worst enemy. I try to pretend that all is ok to the outside world and that is problem number one. I have to accept the situation that I'm in and make sure that others that are involved with me know that. I fear so much for burdening those around me, especially my friends and family. I know how hard it is for my son and husband...and I feel terrible guilt about it...I don't want to spread that dysfunction to others. sigh

I've got to get out of my head and put it out there. I've taken good steps at work and set some major boundaries in terms of how much I'll take on and how many hours I can realistically work, and low and behold...the earth is still spinning....who'd have thunk it? lol

The hard part now is being more vocal in other parts of my life. I don't bring up my fibro hardly ever...the only time I talk about it is when someone else brings the topic up. I don't want people to think I'm whining...on the flip side is that if I hold it all in, I end up whining on here or to my husband, which is NOT ok to continue....

Oop ack ick...where to go from here....the struggle continues...ponder ponder ponder.....



Sherlock said...

It is a daily struggle and you've expressed it so well. I think the people who know us best usually know we're not whining. Great post!

Diane J Standiford said...

I use my blog to bitch. Don't hold it in. FMS is so stressful, not knowing when pain will end is considered criminal torture. But don't let it OWN you. You are so much more than the disease.

Sue Jackson said...

I could relate to so much of what you wrote! Stress is a huge factor. Did you know that studies have shown that it's biological - people with CFS and FM don't respond to stress normally - our bodies don't produce the right hormones in the right amounts at the right times, etc.

I was just noticing on my vacation last week how nasty I can be to those around me on the days when I feel really bad and how I revert to my "normal" personality when I;m feeling better. It's very frustrating.

You're not alone!