They say chronic pain changes you…I can attest to that! The littlest thing can make me crazy. I hate that volatility in me, but that is what dealing with so much physical crap does to a person, it changes us in ways that are not pretty. For the most part, I have a pretty good handle on my frustration and anger. If I didn’t somewhat deal with all the stress that living with chronic pain comes with, I would be in constant agony and a complete bitch! When I do slip up and let the monster out – almost immediately, I can feel my entire body tense up and I begin to yell at myself for letting it happen. As if I have control over it. As the guilt and increased tension builds, the pain increases dramatically, like someone turned up the volume on a stereo. I start itching all over my arms and legs, sometimes my face as well. The sensitivities to light and sound become so magnified, I want to hide in a deep, dark hole somewhere. My head begins to throb to a point I am certain one of these times, it may just explode. At this point, which is usually only a matter or a few minutes, there is no turning it off, no going back. I can’t just calm down like most people. But luckily for me and others around me, this additional pain usually shuts me up pretty quickly because I can’t focus on anything else but the pain now, the stressor is irrelevant now.
So, I do the only thing I can do, take a handful of pills, go off to my deep, dark hole (my bedroom) and cover my head and try to just breathe through it until my pain/anxiety/muscle relaxer cocktail kicks in. There are times that I don’t want to go hide in my bedroom. I don’t want to appear weak or let my kids know there is something that I just can’t handle right now. If I’m unable to retreat to our bed, the only place I feel safe…I become very quiet and may still appear angry. I am angry, but not at the stressor. I am now angry with my body, angry that I have to go through this. Now all I can do is quietly wait until this storm passes and I am able to somewhat relax with the help of my meds. This pain storm will brew up not only when I am frustrated and mad at the life I am forced to live now. Any added stress will set it off, the littlest things that wouldn’t have stressed me out before now do, so this is my life more often than not. It’s a never-ending vicious cycle.
I think the anger and frustration that I feel most days comes from depression and the anxiety of trying to cope. I work very hard at accepting this life I have now and saying good-bye to the one I left behind. I am no where near where I need to be, but it is a work in progress. I’ve even tried to take up crocheting and knitting to get my mind on something else. But, honestly, how do I accept this new life where I have to constantly battle the unrelenting pain and fatigue. This life, where I can’t make plans with others because I never know how I will be feeling from one day to the next. This life, that forces me to realize I will never again be a contributing member of society – I truly, truly miss going to work everyday and being productive! This life, that most days has me laying on the couch because after one or two days of struggling through something I really want or need to do, I have to recuperate for days after. This life, that makes it necessary to use aides, such as a cane, walker, shower chair or even sometimes a wheelchair.
Everyone says that it is not healthy to bottle all that up. That it will rear it’s ugly head eventually, like it does when I let the “monster” out. Truth be told, I don’t want to have these feelings, I don’t want to be angry and frustrated. So why let them out and talk about them when that only makes them more real. I try very hard to not focus on the negative and try to turn my attention to the positive. I want to embrace the life I have now, but there is something that is stopping me from being able to. I know that something is me, my own mind. I know I should be grateful that I am still able to walk, that I have a supportive family that loves me, does a lot to help me and tolerates my mood swings. I should be happy that I am able to still drive my son to school for now. I should be happy that my amazing boyfriend continues to stand by me through all of this and loves me no matter what I can or can’t do. Why can’t I just be happy? Why can’t I embrace who I am now?
The reason is, I still can’t seem to let go of the person I used to be. That person who was generally optimistic and ready to take on life. I miss the person who could get up every morning, get the kids up and off to school, go to work and still come home and make dinner and do some housework. The person that LOVED being spontaneous! I don’t know how all those people do it! You know all those people in the news or online that still have such a love for life and remain optimistic even though they are facing terrible illnesses. Even those with the same illness as I have and still manage to be happy and raise others up. I hate the fact that I am not one of those people. I hate the fact that I am still resentful of all of my damned diseases…I feel like they have ripped my life from me. I hate that sometimes I snap at the smallest of things because of all this pain, resentment and just overall feeling of worthlessness.
I guess for me, it’s about acceptance. I feel that if I accept my limitations now, I am giving up. Giving up on getting the old me back. Giving up all the hopes and dreams that I had for my future. There are things that I wanted to do, that if I accept who I am now, I’ll lose that hope, and that is a hard thing to ask someone to accept. Accept the fact that I will not ever sky dive, go horseback riding, go scuba diving or even run again. Could you really come to grips with the fact that you, at the age of 40, could no longer do the things you’ve always wanted to do? I know there is no cure for Fibromyalgia or for Mixed Connective Tissue Disease. I know I am not going to get my health back, so why is it so hard to actually accept it?? Maybe once I finally learn how to do this without feeling defeated, the pain storms will subside some.