Living With YourSelf & Chronic Pain

There are some days gratitude for those nearest to us is maybe the last thing in the for front of  our  minds and hearts. I know,  I have been doing less thinking about how much I appreciate my friends than I know I should. In my case thinking less about my gratitude for my friendships. and more thinking about me.

It’s been a seriously tough two years in many ways in my life & for family. All through it there has been one main stay for me, one thing I know with no hesitation or second guessing is that friends are here for me.

We’ve had some major storms to weather these last few years, having my youngest daughter survive emergency brain surgery was our miracle which we still today thank the doctors for their incredible skills and Praise God for His tender mercies. I have left my 42 year old marriage.  That was my major stress and everything else with much less impacts.

Dealing with chronic pain and fatigue while living life is an extraordinary experience. One, that knowing all I do now I would be remiss if I said I have regretted any of it.  It has taught me so much about life, other people, and about myself. Life long lessons that are now serving me beautifully, that without chronic pain and fatigue being a large part of my life I may not have ever had sunk in. They may just not have seemed important enough to a life of shallowness, and a view no further than one’s own nose.

One of these lessons that have sunk in FINALLY is that for me  housework is over rated. I used to try to live up to someone else and their expectations of how a house should be kept, someone who did not even live in my home, nor did she rarely visit because we lived 3 hours apart. That someone would be my mom. My mom was an excellent home keeper, she had her schedule, her routines. Windows on Saturday, Laundry on Mondays, etc… you get the jest of it.

Learning to live in my own skin has been a milestone reached.

I have friends who have tried to impress upon me for years  that if the bed did not get made it was not the worst thing that could shatter my home’s well-being. How right they are.

I would think back often to something my step-mom had told me about one of the reasons why my dad left my mom for her. (These things were never discussed and I certainly  as an adult know today there was much deeper roots to it) She explained that my dad often would want to do things with my mom but it was likely to interfere with her rigid schedule. One of the things he loved about my step-mom was that she made the choice to be married to her husband, not her home. If my dad came home from work and wanted to go fishing – which he often did – she would drop what ever she was doing, or was cooking for dinner, and grab a package of hotdogs that she kept for just such purposes and off they would go.  This stuck with me, but so did the ingrained upbringing, so I always had an inter-mind argument.I still struggled trying to live up to some other  unreal expectations.

My close friends knows this argument that I struggle with. Tidy house or living my life.   And since chronic illness came into the picture the “good times” that I have are less. The pain-less days and days with energy are sometimes far and few in between. That is just a fact I continue to struggle with. Finding that  fine line. Should you the reader think that chronic fatigue is somewhat like waking up feeling & tired one morning, or needing a nap, it’s much more severe. It is that and more.  Think unable to lift your head up, or even an arm. It’s systemic and not something you can just make up your mind about.

My closest friends are so intelligent. They are my support group.  They have  great instincts about life and even about me. A few of my nearest & dearest have been with me through the whole parade of implant surgery and have helped me live through the last 29 years with some grace. Not only their help & support in a thousand ways but because of their attitude I do well. My friends are not bothered if the house is trashed. As it is right now as I write. Just one of the cool things about learning what is important in life, This attitude towards housekeeping for instance is self-defeating.. I have stopped expecting  a tidy house always. Or even often. It will always bother me more than I am willing to admit, but give me a clean kitchen to eat from, a clean bathroom to clean up in, and  a bed that is most often made when I go to climb into and clean laundry and I am a happy camper. The rest is “Lived In”

It took me becoming ill from the Vitek Proplast implant materials poisoning me to finally learn that being “Lived In” is good enough. And sometimes even “Lived In” and a mess are okay. For instance I am in the middle of writing a book and my little apartment is holding its own albeit I have been neglectful. But I don’t mind, today I am living life.. I have a vivid memory in the very beginning ( now almost 30 yrs ago) of becoming ill & standing at the sink after dinner one evening. I was doing dishes and in tears. My now ex-husband busted me. He asked me of course what was going on. I just sobbed: “These dishes have to get done, the girls bathed and I have homework that’s due tomorrow, and I hurt like hell!” Taking my hands out of the soapy water and as I watched with tears still streaming down my face  he rinsed my hands and said to me, ” I think you just need to take care of yourself right now and let everything else go.”

And Me:  ” Buuuuutttttt!!”

But nothing. The very next day I took a leave of absence from school, dropped from managing a pharmacy/drug store  to assistant manager, and working just part-time. Things would go from worse to better but that’s a story for another day. Leaving school and working part-time helped me be able to bathe my own children at least.

And that’s the point. Giving up somethings for those more meaningful and significant, is it not?

I have been dealing with a mobility issue from  the spine disease in my neck  which has also now moved into my thoracic, which also has been causing symptoms in my left shoulder and arm for quite a while.  Over a year ago it even was to the point of not driving for about 6 months. I was dealing with severe pain every day, and limited function. When I felt well enough to do something I would choose to do something I enjoy of course. If it were my choice alone I’d let the housework go and create something or write. And housework is not so much part of what I enjoy.  That being said it has taken me raising 2 daughters, 3 foster daughter’s, all their friends, a small zoo of pets, and chronic illness to learn that the roof will not cave in if the home  is a mess, I’m even to the point of being grateful should I be caught with my hair down so to speak by friends. I know I have nowhere to go but up. That is pretty good for me.

The point of this post is about the love for my support system teaching me what matters.  And my gratitude. My gratitude is  particular, but a tribute to all those that help people  like me navigate the rough waters and wild tides of a life altering event.

As I sit and write here at  my cluttered dining room table listening to an April snow & hail storm in my front yard I am looking up every so often to see this giant mess of research books, loose papers, pens & pencils and my trusty mug of coffee. Across the room from me sits my art supplies for creating hand crafted greeting cards. All cluttering the small apartment. Oh, I have an art room for such things. Why I gravitate to my dining room table is a bit of a mystery but its what I am doing and I am accepting its what feeds me. In the past I would have been bothered by thinking my mess was annoying to someone else. Today I am trying to please myself in this area.

Like now.

I have reaffirmed to myself that if it’s not bothering me the logic  I now have goes something  like this: “Why go to all the work and energy to move it all when it’s not going to be bothering bother me,? It’s not going to be bothering  me being here, and when I return to craving very quickly the want to work with paper, glue and scissors again and I will not have to move everything back out.  Logic. Something new for me.T

There are yet more lessons to be garnered from this logic and attitude. Number one; that life is too short (and my days are shorter because if I don’t take a nap I’m likely to make it through dinner but be asleep soon after) to be spent in moving art supplies from room to another just for the sake of neatness. Number two; that when my spouse, my caretaker in life, says he is not bothered by a mess he means it. And number three; that I have the greatest roommate in history and I should be more mindful of my gratitude for his attitude than I am.

Because of D’s attitude and awesome logic I am learning that there really are more important and significant things to me and in my life than an immaculate and tidy house. That when there is energy to be expended I can give myself the gift of doing what I’d like rather than what I used to think I should.

Actually this is a gift my husband has given me and continues to give me every day of our incredible life together and being grateful is so easy that I am ashamed that I am not only more mindful of it, but also that I don’t take the few seconds to tell D. more often.  I’m a firm believer in that people need to hear these things from us, we need to make certain that those who care for us and love us no matter what our warts are know that they are the reasons our life works for us.

Thank you D for the time and freedom to do as I please most often during the times of less pain and high energy. You make my life so worth living in spite of the chronic symptoms that so crowds our lives.

You Sir, may be the Captain at the helm of my ship any old day! I so love you!

tjhelser 2012

5 thoughts on “Living With YourSelf & Chronic Pain

  1. What a wonderful post and D sounds magic! I really like what you say about the housework too – I struggle with this and I have no excuse because I’m not ill. Bravo to you a hundred times over – oh and to D.

    • Thanks so much Jules. I hope that there will be no judgementals over this consession. But I think in many ways the illness has been a blessing. I am able to see things today that would not be possible had I not become ill. Does that make sense without coming across like sounding like some martyr? I don’t mean it to. Its just true.

      If there is one piece advice I;d ever feel good about giving a woman. Don’t wait until aomething life altering happens to not clean house. Use your precious time for the things that bring you joy. If its truly a clean house than by all means. But if it is not than let it go now. Life is too precious and too short.

  2. Chris is just like that with me. I know how special it is to have D around. Without our spouses, we’d be even more lost. Love to both of you. BYW, you are welcome in my house because it is messy LOL

    • I knew I loved you for a reason, and not just a season. I’d welcome you both in ours as well and plan on doing just that. And I promise not to clean a thing if you can promise me the same.

      Our spouses are our iifeguards for certain. D is my hero, my knight, and my partner in crime. It is not even something i can think about , being without D, just as know that is not somewhere you can go. Thankfully we are living one day at a time and I thank my chronic illness for that.

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