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.

I Can Barely Find My Shoes

NYC - Metropolitan Museum of Art - Abduction o...

Image by wallyg via Flickr

The darkening skies have lifted to show off a mild blue sky and yellow buds on naked trees. I was up all night suffering from IBS (Irritable Bowel Syndrome) which seems to have some connection to my Fibromyalgia though I don’t really understand it. At 4am, being a mother of two teenagers I became a child myself. I was alone in the house except for my dog and the children fast asleep downstairs. I was in a lot of pain and sometimes pain takes away my judgment. I go online to see if any of my friends are there because I need to talk to someone calm, motherly.

Luckily my friend, Michal, who lives in a different country, is awake and I ask her the same things I know deep inside. It is the same advice I would tell my children or friends or my spouse to do. The fact that she is awake and talking to me calms me immediately. She tells me to drink Coke and to stir the bubbles out with a fork or Alka-Seltzer, baking soda and water…..I tiptoe down the stairs and I am overjoyed that I have found a dusty yet unopened bottle of ginger ale to drink. In my race with pain I had totally forgotten the right things to do. It was her being there that made me feel better, more than the few sips of soda that I swallowed in the dark.

We all need people sometimes, whether we have a chronic disease or if we are perfectly happy and healthy. I have Fibromyalgia and Hashimoto’s Thyroiditis and Narrow Angled Glaucoma but it took these diseases to learn to ask for favors. A few weeks ago I asked my friend Sarah to go with me to the city because I would not, without someone’s help, be able to make it home if  my eye doctor needed to do surgery at the Eye Hospital. It was hard for me to ask her, but I did, and I needed her help desperately. It taught me the balance between being independent and dependent and the fuzzy middle line we all try to achieve. I don’t think twice about offering help to a friend or an acquaintance but feel awkward asking. I have relied on my husband for the last two years, when he was home, unemployed,  to such an extent that I needed to relearn my own skills and find my independent self again. I had lost her, she was hidden in piles of soft, flowered comforters, next to pre-made cups of coffee and the security of my husband’s endless amount of hugs.

I am glad I have found my old self again because I  need to make decisions and be responsible for myself. At the same time I am glad I can finally ask for favors when I really need them. I don’t like having all these illnesses and I don’t like that my husband is working five days a week far away from me. I do like knowing I can handle things myself, even if I do need help once in a while from a friend. There are so many decisions to make in a single day, so many minute details that I actually trip over them every so often. I get out of bed in the morning, slowly, with aches and pains and I do everything I need to do when in fact I can barely find my shoes. Sometimes there is a strength that we all have inside that enables us to pull ourselves together and go through the day and the long nights. I am not always able to do everything on my own and I do need help at times but I am happy that I have rediscovered me, balanced albeit sometimes unsure.