Thursday, September 22, 2011

It's been on my mind

Something happened last week that has been heavy on my mind.  I was at the doctors office and the "nurse" who was helping me was very nice.  She asked me all the right questions, etc. and when I mentioned my CFS and fibro, she said, "Oh, I have that too.  But I refuse to let it destroy my life.  I just push through it and take meds for the pain.  I get really tired, but just move on."  And she left the room.

I was sitting there with my thoughts swirling a million miles an hour.  Why can't I do that?  Why is she different?  What is wrong with me?  Am I lazy?  Have I given up?  Do I give into my symptoms too easily? 

It's been haunting me all week.  I felt as though I'd been slapped in the face.  That my illness was an excuse.  That I could be well if I just wanted to be.  And my doc has the same attitude I do believe.  (Yes, I'm looking for a new one).

Where does that leave me?  Why are some of us so ill and others able to function "normally" with it?  Do I just need to push harder?  Pretend that I am not ill?  Pretend that I can?  I have done that and it has always led to a severe crash.  Sometimes lasting years. 

I'm not feeling sorry for myself.  I am just confused.  I want to be well.  I desire to be well.  I have black berries, plums, and tomatoes to pick.  I watch them ripen and fall to the ground.  Others wonder why I didnt plant a big garden this year?  Well, I couldnt.  And in the past, my daughter and family were here to do most of hte work.  They have moved and that is no longer a possiblility.  People say things like "if I had all that space, I would plant a big garden".  Well, come on over and do it.  Gardens are a lot of work.  I love fresh produce, but am simply not able to get it on my own most of the time.  Once in a while I can pick a few berries or get a few tomatoes off the vines. 

How do you handle these kinds of situations?  I'm feeling very fragile right now.  My hubby is not very well, and my brother needs a heart transplant.  We are still waiting to hear about the road/bridge project that may impact our home, and yes, I'm stressed out.  I KNOW GOD will take care of us, its just the getting there that has me wondering... can I keep up my strength long enough to get thru this all?  I have set priorities and have let so many other things go over the years.  A clean house means huge set backs.  So... its dusty and the floor needs scrubbed.  But I talked with family on the phone, hugged my gkids, and pray, pray pray!

Thanks for listening.

God bless,

Elaine

4 comments:

  1. It is very frustrating to have someone who also has these illnesses be so flippant about it~ I must say, that sometimes I think pain medications help the pain but they mask what is going on in the body for real. They keep you going but at what expense? Elaine, dear one, you are not alone in wondering why others can do more and you cannot and if somehow it is your fault! You are under alot of stress right now and that can't help your body. CFS responds so poorly to stress...or should I so, so strongly to stress...it will take me down quicker than anything physical I do at times. You are doing the best you can and deep inside you know that. It really is hard to have an illness control us in such a way...so unpredictable, so consuming. Hang in there Elaine. Sounds like a good choice to find a new doctor...one who understands. Sending BIG cyber hugs your way today, friend and praying for you and yours.

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  2. Oh, Elaine, I'm so sorry you had to hear that, and from a medical professional, too! Comments like that always remind me of my grandmother who lived to be almost 100 and who would look at someone with arthritis or any other complaint and say, "Why should she have that problem? She's only 85." As if people who are 85 can't have health problems my grandma never had.

    The RN's lack of capacity to imagine that anyone's body might be built differently than hers, or that anyone might have illness to a different degree than she does, is really horrible. For Pete's sake, we've all seen people who are flattened--and I mean really flattened--by a cold, and others who just get a few sniffles. There are people with MS who live relatively normal lives and others who are completely paralyzed. I don't know why people expect CFS/FM to be exceptions.

    Questions and comments like that always make me start doubting myself, too, and like you, I always pay a price for acting on those doubts, and I'm not nearly as ill as you are. (Sometimes even not being as ill makes me doubt myself, like I don't really have CFS because I'm only half sick compared to many of you.)

    You have learned over many years what does and doesn't work for you. From what I see, you are always living just at the limit of what you can do, because you're so hungry to do everything you can and more. The love you give to your children and grandchildren, even when it costs you, is so beautiful it brings tears to my eyes.

    Sometimes I think that if we didn't have to deal with the medical profession we would manage our illnesses much better on our own, because we would be listening to our bodies and doing what works FOR US instead of trying to mold ourselves to whatever "one size fits all" treatment they're dishing out to us today.

    I'm sorry you're going through such a long, extended period of stress--and every single stressor a huge one all by itself, let alone compounded with all the others. And I'm sorry you can't do all those things you enjoy so much--the garden part, of course, goes especially to my heart. Hang in there, and keep listening to your own hard-earned wisdom. I wish I could offer you more concrete support than that. In the meantime, I'll be holding you and your family in the light.

    Stacy

    P.S. I wonder if there's still some problem with Blogger? (Not that you need to worry about that!) This post didn't even show up on my Google Reader until this morning.

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  3. Elaine -

    That nurse obviously does NOT have CFS - she just has fatigue related to her fibro. Otherwise, she would get worse when she "pushes" - that's the key characteristic of CFS. So, she not only doesn't have it, but she also doesn't understand it. It's good that you are looking for a new doctor. Don't let the ignorant people in the world get you down!!

    At least you know that everyone here truly understands.

    You are in my thoughts and prayers during this difficult time for you and your family.

    Sue

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  4. Hi just found your blog, I agree with sue, you can't push through M.E. I have been hurt by these sort of comments too, don't let people like that get you down they don''t understand. It's hard to do but with Gods help you can do it. May God heal you and bless you. From a fellow sufferer.

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