I am sick, I am not sick, I am

Pain #TP637

Pain #TP637 (Photo credit: ConnectIrmeli)

I am not sick. I am. I am sick if I feel pain, pain hurts. Sick is pain, not bumping up against walls and tremors. So, I am not sick. Not now. Not yet. You did hear me, right? I am not sick. What happens when invisible illness become visible? When a pink cane accompanies me everywhere? I am not invisible anymore. People see me and give it a thought, “oh, there’s something wrong with HER, I wonder what it is.”

I think the same thing, flatly, without terror, at least today. What IS wrong with me. I have shut down for the most part and if I could stay in bed in my white-flowered pajamas, thin and comfortable, I would do that all day and night. I can’t. My kids are home today for a visit and as most parents know, I would do anything not to scare them or put them through any unnecessary concern.

I am unbalanced, imbalanced. I cannot walk a straight line. My neurologist was cavalier the first time he saw this, in fact he ignored it. Why would he ignore something as strange as that? Maybe because he ran over his 8 minute limit.  I don’t like him. I don’t like a doctor who does not acknowledge emotion, who pretends it is not there. I need to switch. He didn’t want to give me this second MRI but my” huggable rheumatologist” insisted. He is a doctor I respect. A person that you can be proud to call your doctor.

I need a favor, I have asked a friend and she can’t do it. I have asked another friend and I haven’t heard back. I hate asking for favors. Do I ask again or just call a cab? I’m too tired to even make this decision. My room is disgustingly disorganized and I don’t have the energy to clean it but I will try for ten minutes. There is a banana bread in the oven baking for my son for his 24 hour visit, I would have crawled to make that for him, I had to lean on counters but I did it. I just hope I don’t burn it since I am lying down upstairs.

I’m getting very tired. Tired of tests, tired of illnesses, tired of sickness upon sickness piling up on me. This blog is the friend I can always talk to. I do not tell my mother half of what is going on because I don’t want her to worry. Here, I can say anything, I am not seeking pity, just a few minutes of peace of mind. It generally doesn’t work but I give it a try. I have nothing to lose. I cannot hide because I am here, just because I don’t complain does not mean I don’t hurt.

photograph credit to the noted photographer above.

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Independence (PFAM Blog Carnival)I

Fireworks #1

Image by Camera Slayer via Flickr

I don’t remember what complete “independence” is anymore. I used to know how it felt, before my illness. I remember quickly dashing through crowded city streets, staying out late, going to the Village after a movie before I headed home via taxi to cross the Brooklyn Bridge. I was young, admittedly, but there was little fear and so much to do.

FIbromyalglia and Chronic Pain took away my spontaneity and instant fun and robbed me of joy. While I can still do many things, I need to wait until the same day to see how I feel. That hurts, not only physically, but emotionally. I can drive my car, if I have enough energy. I can go shopping for food, when I feel I am up to it. Last week my husband and I went to the first movie we have seen outside our home in years. I felt free, we had a bite to eat, and we went to see the new Woody Allen movie and I was happy. It was one day, one joyful day out of many.

I plan on going to my son’s college orientation this summer; I do not want him to be the only student without a parent there but still I worry. How much will I be able to do? Can I get a taxi from the hotel to the campus? Will I be able to walk a few blocks? I know there’s a tour but I will have to sit it out. I am the sick mom.  I will smile sweetly and tell my son to report back every single detail while I sit on some bench, shaking my head back and forth, holding back the tears.

I am not that old but I feel old. Even the new medication I was on to give me energy has failed me. I was happy for a few weeks and I told my chronic pain friends that “Yes, There Was Hope for Fibromyalgia” and now I don’t know anymore. I feel bad for the people who thought I had found relief; I feel more sorry for myself wondering what happened and why this medication failed me, like so many others.

I rely on my husband, I am dependent on him; he knows the look in my eyes when I feel tired and depleted and when I hurt. He supports me, takes my arm. Part of me wants to pull away and say “I’m not a grandmother” yet part of me holds on and appreciates his love and help. My teenagers’ friends have seen me more in my pajamas than not. They have seen me lying in bed, with a book or the computer and even though I shout out a happy and cheerful “hello” I am embarrassed and I feel like I have let my children down.

Thankfully, my mind is still independent, I can think and emote and write and my imagination is not limited by my body. At the same time, I weigh myself down because the joy of spontaneity is lost forever. If I make a plan, even at the last-minute, I always have to think steps ahead, the amount of walking, sitting, standing, driving. If I decide I will push myself to go to the city and do something fun, I worry about if I will find a taxi because my ability to walk is limited. It usually keeps me home.

Independence Day is tomorrow, I would love to see fireworks, they make me so happy. I love the excitement and the blasts of color  and the screaming and the thrill. But, I won’t be going, because there are too many variables that stand in my way. So, on Independence Day, I will not be celebrating with throngs of other people. I  know that I can’t walk miles to see the show, I know that if I had to go to the bathroom there are none in suitable walking distance,  I cannot sit on the hard grass for the hours it takes  for the show and I will miss that dearly. On Independence Day, and many other days, I am dependent.

Blessed With An Ordinary (?) Day!

Hallelujah!!!  The thrill of an absolutely “normal,” uncomplicated day.  Abnormal,  for those of us who suffer from any chronic  illness.  The sun was shining and my aches and pain were minimal; I felt great and full of energy. It is a wonder to be me today. I happily went grocery shopping, bought exotic pluots (plums/apricots) ran into an old friend, so nice to see a familiar face,  chatted and hugged!  Drove to the Thrift Shop to see if  I could find cheap toys for my dog’s upcoming 9th birthday and also bought a soft-as-a-bunny mens 3x Tee-shirt to wear to bed.  Took my daughter, to the new friendly TD bank where we deposited all our coins into their new coin machine with great glee, and met the new Manager who smiled at us both and cheered us on. Scored a free  lime lollipop and a bright green pen. We left giddy with cash, smiling and laughing,  just the two of us.

When we came home from the bank we ate dinner.  Two tasteless macaroni and cheese (in my opinion ONLY) Weight Watcher meals and a huge salad, to which I added, red grapes, soft, silky avocado, bits of hard Jarlsberg cheese and baby carrots. My daughter had ranch dressing, I had bright orange Asian Sesame Ginger which came pouring out of the bottle at an alarming rate creating a huge orange puddle. Listened to Kansas on my computer “Carry On My Wayward Son”and emailed with a friend. Stroked my dog Callie’s soft fur, found out someone in our neighborhood was caught in a prostitution ring! So much happening in just one day, all my senses heightened, the sun, glowing brightly in the sky; or maybe it was just me?

A great day with a minimum of aches and pains, mostly my stiff shoulders and the small of my back but I can deal with that. Tested positive to the Thyroiditis Hashimoto’s antibody which I knew I had but somehow I felt reaffirmed. My mother e-mailed me the name of a chiropractor/homeopath person, forgetting that all these things require money we do not have. We have money issues to begin with but she meant well. You are your parent’s child forever.   The guru Dr. I see in the city is madly expensive but I have to see him every 3 months, there is no choice, we have to find the money for that!

After dinner, Jillian baked a chocolate cake with chocolate frosting for her friend, Katie’s, birthday. I helped her with it and while I do not know that much about baking cakes I am good with functional and basic things, like getting the cake out of the pan. Showed Jillian my way of frosting the cake, with swirls, and it actually made her  seem in awe of me: “Wow, Mom you could be a professional baker.”   I felt like the Betty Crocker of the 21 st. century while my daughter looked on with great admiration. She’s 15 and a half, that was a rare and wonderful moment!

Do not overlook your “ordinary” days. Those of us who have few of them are delighted when it happens because it happens so rarely.  Enjoy shopping, going to the Post Office, driving to the library, all because you can and don’t complain. When these days occur to those of us with chronic illnesses, we do not complain; we celebrate. Here’s to Ordinary Days!