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It's raining, it's pouring

Blog entry posted by mrs_took, Sep 10, 2013.

I never really come here, but today, I'm struggling. I've been worse the last few months then I have been in a very long time. It's raining outside, delaying the building of our new house that I need so much. My son has been whisked away for the rest of the day until early evening (after dinner) by some wonderful friends and my husband is working in town for the day. So I, am alone. Alone and exhausted and aching and miserable and confused and overwhelmed and uncertain and scared.

Yesterday I was diagnosed with, on top of my ME/CFS, two other chronic conditions. Low blood pressure (hypotension) and, drum roll please... fibromyalgia. Because having one untreatable and incurable illness isn't enough.

What does having these two new diagnosis mean? Nothing really. It doesn't change things. Well, it might change things a little bit in that I'm being referred to a pain management clinic now, put on a different type of account at the doctors (cheaper and longer visit times that are auto scheduled regularly). The pain management stuff might, might, increase my quality of life by around 5%, which is better then nothing but still isn't going to let me be the person I was or want to be.

Which leads me to a new point. Rallying against the injustice, the" what was" and "can't be". I think it might be time I started to accept my life for the "what is". Take a more accepting stand. But how the hell do I do that. I'm assuming it means selling off my looms that I'm never well enough to weave on and probably 90% of my art and craft hoard. Because that is what I'm doing, hoarding pieces of a life I can't have and desperately want.

I want to be able to homeschool my son, have more kids or at the very very least drive the one I have to and from school each day and I can't even do that. I'm lucking if I'm up to sitting in the car for the trip into town. How do I accept a life that isn't what I want and I have no idea how it would look.

It would be so much easier to do this if I was a single woman with no attachments, but I'm not. I've struggled with this condition for 9 damn years, and in that time I haven't learnt a damn thing about how to live with it. I keep rolling with the punches and saving up my dreams for when I'm having a good period, an unexplainable bout of remission that can last a week or 3 months. I'm so confused.

Why is it so hard to have a life that involves getting up in the morning, feeding and dressing my family, doing the housework, taking kids to school, grocery shopping, visiting friends, going out once in a while and enjoying hobbies. Even typing those words is exhausting, let-a-lone doing any of it.

This morning I broke down on the phone and called a friend, telling her I didn't think I could manage to get through this day, she came over. I was so amazingly exhausted, and it wasn't even 9am. Someone else cleaned my house and even took away my washing. Someone else has taken my son away for the afternoon, after doing some shopping for me, making my sons lunch and now I don't even have to give him dinner, just story and bed when he returns. Today I'm lucky, today I have help but it took extreme levels of fatigue and mild levels of pain to break me down enough that I had no choice but to ask for help. AND I HATED IT!

I HATE MY LIFE

How the hell do accept it and one day even love it?
mrs_took

About the Author

Trying to make it all work...
  1. SickOfSickness
    I can relate too. I think it's okay to hold onto a few things (like looms), unless they are bringing us more grief by being there. (Some people would be sad seeing them, some would not.) Don't keep too much. Holding onto some things seems like holding onto hope. Certain difficulties and feelings may not get easier, so we just have to ride them out. Others will get easier if we allow them to, (I find this challenging too). I feel like acceptance is like stopping struggling against the reality, which is only going to use energy and be difficult. It is not giving up.
  2. GracieJ
    I think gsteb is experiencing healthy grief mixed with a lot of joy and gratitude. What a great place to be to deal with life, whatever it brings.

    Just looking at sunlight coming through a window can be profound when you really SEE it.
    gsteb likes this.
  3. gsteb
    In the first three months of this year I was “officially” diagnosed with ME and during the time it took to reach that diagnosis, my doctors discovered that I had cancer and I would need nine weeks of daily radiation therapy. On the morning of my tenth radiation session, I suffered a stroke and lost my abilities to speak and walk. In the matter of a few months I had lost over 90% of the abilities that I had previously had. My once, vibrantly healthy and very active life had been shattered.

    The “old” me is gone…all the fighting to hang on to that “idea” of the “old” me, to be something other than what I am right now, takes a great deal of energy, energy I desperately need for other things.

    Now, today, I am a “different” me, I do a few of the things I use to do, but I do them very differently than I did before, and when I catch myself feeling angry, upset, and despondent over the all of the things I can no longer do, I don’t hold on to those feelings…I watch them rise up, I experience them briefly…and then, I say goodbye to them and I let them go…and they do go, just as long as I don’t try to keep hanging on to them.

    I wake up every morning with the intention that I will find at least one thing to smile about and be grateful for…it may be a look from my wife, hearing the sound of children laughing and playing outside, or just the feeling of a gentle breeze, something…anything to let me know, there is still life in me and with all of the challenges that continue to come, I still have the power to choose how I will respond to them.

    Feel whatever you feel about your life…hate it or love it, but don’t fight or hold on to those feelings…let them be what they are and then let them go…look for anything, no matter how small it may be, that brings you a moment of relief, happiness or peace, try to string a few of those moments together every day, and smile at the simple gift of being alive now, in this moment…that’s all we have.

    I wish for you peace and love.
    justy and GracieJ like this.
  4. GracieJ
    As a textile arts addict in my own right, I very much encourage you to keep your looms!! When life was totally unbearable, I would wake up in the mornings thinking about lace patterns. I knit it, tat it, crochet it, knot it, you name it. Handwork kept me sane.
  5. GracieJ
    I don't know if my experiences would be of use to you. Maybe, maybe not. I raised three children with this. We did homeschool for nine years. My husband at the time brought home a paycheck, for which I was grateful - but did not engage after that, except for being a sex addict, which is a whole other story.

    I have both FMS and CFS.

    I have been through two divorces, saw my teenagers move to their father's home, lost housing, my business, jobs, cars, etc. to where I was once homeless. Have been in the position of selling all I own just to eat.

    To make the very long story short, the ONE thing I would change, other than being ill, of course, was to realize early on that I needed to grieve, and do it effectively. As it was, grief work was delayed over and over while I coped with life. It finally happened, though, and I now have this to say, 23 years in: Life is good! It is happy and fulfilling in spite of everything, in spite of the time warp that now has me a grandma. (Where did my little ones go??) I am at a place of happiness, joy, and peace that is almost beyond description. It took over 20 years coming.

    Would be open to corresponding. Good luck and God bless! It is okay right now, you are enough right now, and believe it or not, you are whole and complete - right now.
    SickOfSickness likes this.