Wednesday, June 29, 2016

Holding my Breath

I realized today that Friday is July 1st. We've almost made it through one month of summer. Not being a fan of heat and humidity (thanks to lupus), I have to spend the majority of my time indoors. I am amazed at how much this disease is affected by the weather - rain and cold cause my joints to swell, heat and humidity wipe me out so much I can barely stand it (plus the multitude of fevers!), and just the jump from one extreme in temperature to another causes a flare like none other.

So how do you make someone understand when you're sick, you're sick? I have been sick so much the past few weeks from the flares caused by my colonoscopy and diverticulitis. Going out in the heat makes it worse. I just can't seem to bounce back and that makes life tough for someone who is alone.

This past weekend an old college friend called me every day wanting to go to lunch or do something. I tried to explain to him how bad I was feeling, but he simply did not understand. I can't blame him for that - he's never gone through this before. I finally pushed myself Saturday afternoon and went to the college reunion barbecue since it was inside. However, Saturday turned out to be a hot one with triple digit heat index. By the time I reached the building, I was so wiped out I could barely stand. It was nice to be able to sit and talk with my friend for awhile, but once we had dinner I was back home in bed. Not only did my joints swell, and my body swell, too, but I had a headache that was unbearable. By the time I could actually settle down to sleep, fireworks exploded outside my bedroom window. I had forgotten the college did fireworks as a celebration to the end of reunion and my place is just around the corner from the field where they went off. So I pulled myself up and sat in the living room with Little Bit since she was so jumpy from the noise. Poor Rascal was already under the covers.

For the past few days I've been unable to get out of bed except to feed the kitties and myself. Nausea and vomiting added to the already wonderful experiences I'd had the past two weeks. A friend told me about her friend who was sick this past weekend. She felt so sorry for her because her husband wouldn't do anything to help her. It was as if she were totally alone. All I said was "I understand how she feels." No matter how much someone knows you are sick, they just don't get how serious the alone part is.

I find myself not wanting to go to gatherings anymore. The reality of life hit me a couple of years ago when it dawned on me the college friends I knew and loved so well were not total strangers to me. People grow up and move on. After all, it has been over thirty years. So I really don't get too excited about seeing people once again. Too, it is hard for me to sit in a group of people surrounded by their families when I am alone. It just magnifies the solitude way too much in my own life. I've grown accustomed to being alone. In fact, I like it. But when you're thrown into a group of people it is hard to readjust to being alone again on a day to day basis.

I've struggled a great deal with this horrible disease. It has taken so much of life from me. But I'm thankful for the small things I can still do even though it takes me so much longer to do them. What other people take for granted, I have to work extra hard to accomplish. Small things to some like washing dishes, vacuuming the floor, or even doing laundry take me more than a day to accomplish and that's if I'm doing well enough to walk and balance myself. I can't count the number of falls I've had this past year. Each one has left me with more areas for lupus to attack.

I still won't let it take the joyful moments I have in my life. I've learned to appreciate small things. I've learned that no matter what good intentions people have, they still won't understand when I explain I'm use to being alone and not having anyone to help me. And I've learned people will never understand unless they, too, experience what I go through on a day to day basis. I appreciate moments I can get out of the house and have a change of scenery. Those times are rare. NEVER ever let anyone make you feel bad for having to measure out your strength and abilities just because they don't understand. Sometimes it isn't worth the trouble of having to repeat it over and over again.

So I'm holding my breath until this hot summer is over. Looking forward to a cooler Fall. Wishing for a cooler winter, too.

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