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.

9 thoughts on “Independence (PFAM Blog Carnival)I

  1. Pingback: the faces of pain: PFAM photo album | Phylor's Blog

  2. Pingback: Fybro and CFS « iamhear

  3. Oh no! I don’t know how I miss your submission of this post for PFAM. Sometime came across my Facebook wall moments ago that alerted me to this post. I am going back now to add it.

    As for what you said, I can really relate. If I didn’t have my husband to lean on, I would be truly lost. Hang in there my friend.

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  4. I was unable to go with Dan to college tours. He went to a lot because he was offered scholarships for football. I couldn’t go to one let alone several.

    My Hubby went with him, and it worked out so well. They were able to spend time together and neither of them had to worry about me. It was so hard, but it was easier for everyone. I hope you can make a good decision for you and your son.

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  5. My apologies: it’s been a very bad day, and I really went on too much! I want you to experience all of the tour/time with your son as he discovers his university. I didn’t want you to miss out on it. Of course, it’s entirely up to you; I’m sure there will be taxis to get you from the hotel to the university (or check with the university and hotel: given the activity on campus, there may be shuttle buses.)
    I know it’s a big thing (emotionally and psychologically (spelling)) to use a mobility device. It’s just watching my mother become a fragile shadow of herself, a ghost before her time haunting the few rooms she used, has made me want to let folks know that if you can possibility get around using a mobility device, you can stop your world from prematurely shrinking. As my mother’s world shrunk, so did she.

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  6. Sorry that you health issues seem to have slipped backward. Could it just be a flare brought on by all the recent changes/stresses/anxieties in your life? Perhaps, if/when the stress level lowers, you will feel the benefits of the medication again.

    Maybe you could check with your son’s campus; perhaps, I know it sounds like defeat, you could use an electric/mobility scooter or wheelchair so you can take in as much of the tour as possible — at least the grounds if you don’t feel you can walk up steps, etc.
    Universities are now geared to deal with students with a range of motion issues; they might provide, or know where you could rent, a mobility device. I think your son might rather have his mother along “for the ride” than to have you miss out on the entire tour. As you know, folks with similar issues have used them at Disneyland and other resorts/theme parks.
    Using something like a mobility scooter/wheelchair for special events such as your son’s orientation, while perhaps seeming to indicate dependence, might give you independence. This is one of my ranting subjects. I watched my mother shrink her world (and her physical and mental health deterioate — probably more quickly than it should) because she REFUSED to consider using a wheelchair in public (unless having tests in the hospital). She would bemoan not being able to go shopping (she relied on a walker which also could have been used in the stores; I bought her a collaspable one), but wouldn’t take advantage of the wheelchairs provided by the stores (or let me purchase a collaspable one). I know that using mobility aids makes a person self-conscious, feel like they are giving in (defeat), look dorky, make people stare when the chronic illness is “invisible” but after 19 years of seeing my mother become unnecessarily housebound, I know that when I can no longer walk easily (and I am a walker!), I WILL consider any device that will help get me out of the house.
    Sorry to rant; this is my current soapbox/speaker’s corner topic!

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