One woman's journey and dawning realization of the slow destruction of her spirit while trapped in the jaws of disability.

Disability is at first an affliction of the body, then a state of mind and finally a shackle upon the spirit.

Lydia M N Crabtree, 2012

Sunday, January 29, 2012

Missing Out

            Tonight there was an adult Sleep Over at my sister’s house. Women were there in abundance, drinking, laughing, swapping stories, looking over new lingerie and sexy gifts for themselves and their partners.

                I was home, sitting on a heating pad taking turns cussing my computer while Tony cussed his. I was trying to draw a chart using SmartArt in Word (which totally sucks) and Tony was arguing with his computer about taxes and deductions and the interface between our accounting software and the tax software.

                One of the problems with Dsyautonomia is its total affect on the autonomic nervous system. Anything from your immune system to your cardiovascular system can be affected. Like other chronic disorders, the effects can come and go. I am currently in the grips of what I call a period of down days.

                Down days are those days when I am so physically affected by the toil on my body that I am nearly incapacitated. All my major muscle groups are affected. I ended up at the Doctor’s office Friday to see if they could isolate and treat this current swelling of all joints and major muscle group pain. They have to check the liver and kidney functions to ensure that I can tolerate any pain medications they may suggest and they may have to call in another specialist, this on top of some pretty serious tests to be run next Friday.
                When I have down days it is always better if it is during a week. Weekdays have a rhythm to them and include a bright sun in my life when my fourteen year old comes home to share what is up at school. Weekends are worse. I have an active husband who would rather be out hiking, walking, driving to interesting places and has to choose between leaving me alone and going alone or not going. He usually doesn’t go. So I feel bad about that.

                We end up doing cheap and boring things, like watching Money Ball which was just depressing, doing our taxes which is just frustrating, or working on some project on the computer. Depending on the level of my pain and the amount of my frustration, I tend to snap at Tony if he is the only one around. My boy inherently reminds me that none of this he would choose or is his fault. Unfortunately Tony looks like a grown man who can take it so he gets it.
                Mostly, I miss out on living. Tonight, I could have met some of my sister’s friends. I could have maybe forged new friendships or at least acquaintances. I chose not to go, though Sarah will have me in any way I come, because I didn’t want to explain to strangers why I don’t drink. I didn’t want to faint and have to have Sarah’s party come to a grinding halt while I embarrass myself and shift the focus from fun to illness. I didn’t want to grimace every time I stood or walked and then have to explain myself.

                I know lots of people will be accepting, which is fine. However, when you are in a great deal of pain it takes a mental and emotional toil. Today I was trying to communicate something to Tony and the pain interfered with the words so I started to cry which frustrated me and didn’t make communicating easier. It is hard to imagine making  a good first impression with that type of baggage.
                I think those of us whose disability can be significantly limiting because of pain or other chronic health issues get stuck in an endless loop of unhelpful logic. Friends think, “I don’t want to go over there and bother her.”

                The disabled is thinking, “Boy coming here would sure be easier than going somewhere.”
                The able body think, “I don’t want to tired her/him out by going over there.”

                The disabled think, “I wish someone would just play cards with me, or watch a movie with me or bring me take out and DO something with me. Walk with me. ANYTHING with me!!!”
                All this waiting and well meaning no toes stepping dancing around just leaves those disabled feeling like they are missing out. This is why those calls, emails, FaceBook messages or texts and calls are so important. By hearing about your day, I get a chance to live something outside my boxed in existence. It is a blessing and a joy.
                Mostly, I just don’t want to miss out. No pity party or feeling sorry for myself. Just a statement of fact, it is hard to be included when you have a hard time walking or are in pain all the time.

1 comment:

  1. I know that the down days happen and it is hard to know that you experience those... even though it is natural for what your body has. I think it is challenging for others to know when to step away and not push or when it is better to be all present. it is delicate and sometimes it is unpredictable.

    I want to say that I am so glad you are writing and expressing these thoughts. It is important for you, yes... but it is just as important for me and those who are reading. I am growing in my understanding and I love you still.