When the day of Resurrection seems more like crucifixion. Or: Happy Easter!

It’s Easter. I’m treating for babesia, and it sucks. I missed the Bunny, the egg hunt, everything.

The days of being the energizer bunny –forcing myself to take the stairs to get a load of laundry done, changing my sheets, teaching, closing the drapes, those things seem so far away. I don’t know that I will ever be able to do anything again.

And, I know that this is what it is like in the middle of a herx. I got up out of bed to use the bathroom. And then back to bed, a shaky mess. Now, I’m eating my son’s Easter basket, because I can’t get up to get anything else, I had no energy to make dinner last night, and my blood pressure won’t allow me stand without help.

Yesterday, I took the stairs one too many times, with one of my little lyme boys in bed with 102 fever and the other one obsessively hiding and re-hiding plastic Easter Eggs. I can’t keep going on like this.

People always wonder how I can drag my weary and pained body down to the co-op for mac and cheese, or . . . frankly, I can’t even remember what I used to do while sick, because right now, I have to type one letter at a time, delibrately, because my fingers and brain don’t seem to be communication. What I learned from Victor Parduhn in Typing class — the skills that I was told would be with me forever have failed. At least for today.

So, this is what makes me look like I’m faking it. The things that make bad Physical therapists who don’t know how to chart call me a “malingerer” or Psychiatrists that don’t bother to physically examine me declare, “There is nothing physically wrong with her.”

I’m tired. Not just of treating this disease, but all the disbelief that exists with it. I’m on a message board and people are trying to prove that sexual transmission of lyme doesn’t exists. . when the truth is, that there is no proof with ANYTHING in lyme. No proof doesn’t mean that this isn’t a wicked disease, but that’s how I am often treated.

I went out on date night on Thursday after going to the doctor for a glutathione push. Friday, I went to lunch with a friend, then picked up an 800 page document with many of my medical records from the Sir Speedy print. Yesterday, I drove to the co-op to buy candy and food for the kids’ baskets. I can’t possibly be disabled. Sure, those were the only things I did. One to two things a day. No cleaning the kitchen or cooking or walking the dog. No picking up around the house. Nothing else. But technically, because I did about 7 things in the span of a week, I am not disabled.

What does disabled mean? Really? Does missing out on 90% of life qualify you for that title? Not being able to get out of bed? Feeling pain that is so intense and it won’t let up. . .yet choosing not to take opiates because it makes more sense for my struggling body to breath, move through it, cry, hang on to the wall and just wait for it to pass?

Does spending time on Facebook because you can’t do anything else make you NOT disabled?

And what does it do to you if you are officially given that title? Can you give it back? Can you ever get well? I don’t know. I just want to be well. And I’m losing my patience.

“Your kid isn’t sick!” Glad you told me that. I won’t waste energy helping him heal anymore.

“But you are so good at teaching!” Yeah. . . I used to be, but it’s getting harder. Really hard. I do it because I love it. I do it for the money. I do it because the kids I teach are so amazing, and they remind me that I have skills and talents that nobody else has, not in the exact way I have them.

“But you don’t look sick!” Oh, thanks! I guess I’m not, then! I’m so sick of people needing to prove that I’m someone dealing with Munchausen Syndrome instead of something physical.

I’m just tired of the misconceptions.

I gear up my body and my mind to teach classes in the summer. It is really hard on me. I think about not doing it every summer. And then I get a message like this: “G took this class last summer and is enrolling again. She loved the class so much! I had never seen her so excited to share her work before,” and I know that I have value in the world, even when my body tries to convince me that I don’t.

Are the costs of forcing myself to not lose contact with the world finally catching up with me or is this just a herx I feel like I’m never coming out from?

I don’t know. It feels like no one knows. And that’s the problem. Yes, it is likely that I need a new doctor, one that will give me a little more direction. But that’s hard to find, drive to/fly to and afford. But I’m moving towards that. I need to get well, so next year I can feel the Alleluia, not just the crucifixion.

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7 responses to “When the day of Resurrection seems more like crucifixion. Or: Happy Easter!

  1. I am so sorry for how bad this is for all of you right now, but for you most of all.

    I was very relieved to read that you are going to find another doctor/treatment, as challenging as that is with time, location, costs, accessibility.

    You wrote a while ago that this is a Rubik’s cube of a disease, and I think that is absolutely accurate. Please keep trying to solve it, even if you might never be able to get all the same-colored squares on each side. Even modest improvements can be enough to be life-supporting.

    I wish you were closer so that I could help you get through the weeks chores, or fix you a supper, or take the kids out for an ice cream cone.

    • You make me smile every time I see your comments. Thank you for being in my court, Laura!

      • So glad you know I’m in your court, and I am sure there are many, many others, here in the internet, close by to you there, and others.

        I know how tired your brain, body, spirit, everything must be, but if you could get little bits of help here and there to lighten the burden, it could be enough to give you ‘breathing’ space. A structured part, dependable, like another mom to handle the kids Saturday schedules, or a friend to manage bills and checking account, someone to do laundry twice a week, a friend to do the shopping…? You may not need it forever, but right now it seems like that would help remove some of the crushing weight you’re carrying, so that you can have some clear space for yourself that’s not frenzied.

        How can your friends and supporters like me, from afar, help you manage with tangible assistance? Please let us know. Truly.

  2. I so know what you are going through. I especially hate feeling like I have to explain myself to people because I don’t look sick at all and because sometimes I CAN do things. I tell my friends they never see me when I’m really sick because I don’t even get out of bed! So the only time anyone sees me is when I’m well enough to go out and then I often come home and immediately crash.
    I feel for you. I am fortuante that I became very ill after my kids were grown up and I don’t have a full time job although I do have a business that I’m in jeopardy of losing because it’s hard to keep up with things.
    For what it’s worth…..hang in there. I get your blog because I resonate with what you write. You are not alone.

  3. All I can say is, I know EXACTLY how you feel. It’s what has caused me — an off-the-charts extrovert — to isolate…to escape the criticism, the judgment, the questioning glances or glares, the challenging comments or snipes…sucks. And I can’t even say, “Hang in there” because what’s there to hang in there FOR? Doesn’t seem to improve…and “hang” is the operative word in THAT sentence.
    How about, “I wish you peace”?
    Hugs, ever so gentle, because I am sure they hurt.
    Becky

  4. I hate the “you don’t look sick coment” I have to get up at 4am take 3 different meds just so I can get out of bed at 6am to get ready for work.
    I feel for you….

  5. I love you Ed. I’m so glad you are in my life. You are my hero. Can I get some of those meds? I missed my group this am because I can’t drive my clutch. The bus to St. Louis Park for my injection is 4 hours to/from. Ugh. I need those meds. But I bet there is a huge cost.

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