Quote:
Originally Posted by Idiopathic PN
I read the Spoon Theory from start to finish. It made me close to tears. It describes how we all deal on a daily basis. I say that I accept my condition but in my hearts of heart, I know that I have not. I know that total acceptance is crucial in taking the steps to manage chronic conditions. Just when I though I have accepted, the thought of me being healthy --- making major decisions for a multinational company, traveling from 1 country to another, planning for more productive years and not worrying of simple daily activities --- will take me few steps back. I had accepted though that i could no longer wear stiletto shoes, which I love too much; i could no longer wear tight jeans or signature dresses because it bothers my skin, but mostly, I feel my medical conditions have robbed me of the person i used to be or the kind of person I still want to be. Retirement from work has never been in my plans, but it happened. Now, the pain loses my interest to dress up. How can you be encouraged to dress well when your skin is firing up with the touch of the cloth and you cannot stand too long or you cannot breath properly? What upsets me is the fact that why is there no medication to this pain or why cant there be no cause to it???
I am trying not to air out my sentiments here. I keep my emotions within the corners of our home but holidays makes me more frustrated for not being able to do more. Its going to be my birthday on Christmas day and i pray everyday that He gives me the gift of healing. Being Catholic, I hold on to my faith and so far, its the one that keeps me going and of course my husband as well.
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I completely understand so much of this, especially about not getting dressed up. I have always been a stay at home mom. I was a brilliant student, national merit scholar, recruited by West Point and the ivy league, but I never had the ambition for a career and coming from dysfunctional backgrounds, when my husband and I met at 17 in honors class freshmen year all we both wanted was a real family. I put all my skills into homemaking and homeschooling and was quite successful but I did not have to give up a satisfying and prestigious career because of this disease. I can imagine that would be much more difficult. My husband has a high profile, executive job, although he works at home, and while he has never been really driven, rather viewing it as a means to an end, there are a hundred social contacts he enjoys through work and he is like a little kid this time of year when the vendors send their Christmas baskets. He would deny it but he would miss the socialization and the importance.
I do enjoy dressing up, and I like to look as nice as possible. I just ventured for the first time into the hair coloring side of the salon, I have black hair and liked the silver coming in but wanted something totally offbeat, so I had purple streaks put in, very subtly, two underneath the top layer. The stylist wanted to put a dark chestnut rinse overall just for shine and now that the grays are covered I have to admit I like it very much. The purple makes me smile when I look in the mirror, it isn't terribly obvious, but I love it. My youngest son was disappointed, he expected a lot more purple!
I need things to make me smile. There are days I very carefully plan when and how I am going to take a shower, lie down for a while, then get dressed. There are days I skip the whole thing because I have other things to do. Too few spoons to be clean AND bake or shop. Putting on stockings requires a nice long rest and my hands won't be able to do that much longer. Wearing jeans and going somewhere in the car uses up breakthrough medicine. I wear long skirts and knee socks more often because so many pants aggravate the burning in my thighs. I do not like to leave the house without makeup so that is another spoon gone. I never could wear heels, my balance and gait would not allow that even when I ws a teen, but I love nice shoes and all of mine have to be orthopedic because I need maximum stability. I bought a pair of low pumps and wore them once for my daughter's wedding in 2011. I served all the food, it was here at our house, and I got through the day but I can't walk in them now.
I am beginning to feel that it isn't worth it to buy new clothes or accessories, that I rarely have the energy or reason to dress up, and that I walk funny and use a cane anyway so why bother?
The other major loss for me is the planning of large projects. I used to love to plan my projects, quilts, embroideries, laces, sweaters, gather my materials, daydream over my patterns. Now that it is obvious that I can only complete small, finite things like socks and scarves and baby things I really miss the idea that I could do anything. I thought once the children were grown lace tablecloths, heirloom quilts, and cross stitch masterpieces would flow through my fingers, but i work more slowly now and only have a few hours in the afternoon and evening when my hands aren't too numb to hold a needle.
Sorry, this has turned into a blog post...