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I'm a mom, a wife, a best friend. Sick with CFIDS/ME/CFS and Fibromyalgia since 1975 as a result of a nasty flu while still in grad school, it wasn't until the late '80's that I received a diagnosis. Until that flu I'd never really been ill before. With each year I get progressively worse and add to the bucket load of symptoms I'm living with. I've been blessed with an incredible family and best friend who've stayed with me through my struggles as we continue to find a way out of this monstrous illness and its complications. We've tried seemingly every approach to find my way back to health. Often I think our best weapon in this undesirable and unasked-for adventure has been laughter.

Monday, December 31, 2012

My Big Decision

New Year's Eve in the mid 1970's when I was full of resolutions.

Yes, I've finally decided that I will definitely make a New Year's Resolution list this year.  Normally, I'm not one for lists.  I've found that with my CFIDS/ME/CFS, fibromyalgia and all the complications that stem from these core illnesses, resolutions really are a futile act in frustration.  Last year I broke down and had only one resolution: that is, to look human.  And I failed, dismally.  The surgeries, the pneumonia, the hypothyroidism, and a host of other problems didn't help matters, I must admit.  But it's always mortifying to be on the losing side, even if it's not necessarily your fault.

However, this year I feel that I need to go on the offensive, that I can't expect to survive another year on the defensive, or just going along with whatever comes my way.  This year I'm determined that I will get my life in order as much as possible and will not feel guilty about trying to find happiness, a real "guilt" word in my way of thinking.

So, I've started my list and though it's not complete, I thought I'd share what I have so far.

  • Anyone reading my posts in the last few weeks knows that I'm now in "The Hunt of Red October" mode.  I have good news and bad news.  Hubs and I had a disagreement of who remembered what but it turns out that I was wrong.  That's the bad news.  (I'll throw the guy a bone and say he was right.)  Hubs has, after all, been very good about getting one of the bedrooms decluttered (I couldn't even show you a picture of what the room looked like but imagine an episode of "Hoarders" and you get a good idea.  He's also been cooking his heart out, poor soul who lacks the cooking and baking genes.  So, it's only fair, that I humor him and tell him, "yes, dear, you were so right and I was so wrong."  (Ha! That's going a bit over board. I'll probably say, "yeah, you might have been a bit more accurate than me," and no more.)
The good new, as it turns out, is that I have my meeting with the endocrinologist next Wednesday, not in six weeks, like I swear hubs told me.  No matter, other than I need to start to work on my list of what to discuss. I'm even planning to go into the whole sleep problems if there's time, since I realize how much hormones are at play with sleep, each year with increasing realization on behalf of the medical community of how strong the links are. (See this post for a discussion of this.)  Forget the neuro who tried to convince me for two years plus that rohypnol, the date-rape drug was a good way for me to go.  I think we'll try the hormone approach if at all possible.  Also to be discussed will be my problems adjusting to the hypothyroidism diagnosed back in October and the fall-out from my gallbladder surgery, which is still doing odd things to my body.  We normally go up for my growth hormone deficiency, but at the moment, that seems to be the least of my problems - well, other than the fact that I need that HGH working at its best because of all the healing going on in the missing gallbladder area.  The man may run me out of town by the time we're halfway through the visit ... there will be THAT much to discuss and at a very advanced level since we've covered every angle that isn't of the highest caliber already.  (Oh darn...this means I need to do the makeup and bathing and getting dressed routine. I hope I can do all of this!)

  • I've decided that I need to go back to trying some of the things that have worked in the past, specifically, the essential oils that helped me so much, combined with massages.  I only hope that the masseur is still in business and can come to the house.  The myofascial pain, fibromyalgia and migraines have gotten completely out of hand and so the massages are a huge help.  I'm embarrassed to say that it's been at least ten years since I stopped the weekly work-outs.  Adding the aromatherapy blends help the effects tremendously.  I'd like to try some other therapies which have worked before, but I know the risk one runs into by trying too much.  So, aromatherapy and massages it will be!  Baby steps!
  • Knowing what a perfectionist I am and how my surroundings really influence me, especially if they're not right (and we are so far from right that we might as well be on the moon, that's how bad things have become).  Some rooms in the house are jam packed with the things that are from the empty rooms that have been in the remodeling and redecorating phase for at least three years now.  This is totally unacceptable.  I mean, I used to vacuum my house every single day and we have a pretty large house!  The clutter has gotten out of hand because it's so easy to let things go when you've got a mess and you're living a "Green Acres" sort of existence. Furthermore, it's easy to to let things go when spending huge chunks of your life in hospitals as we did when my daughter came down with her sudden onset of a vicious Crohns/Ulcerative Colitis hybrid no one's ever seen before. (Great luck, not!)  I don't know how I'll manage it, but everything has GOT to get done by Easter, whenever that may be.  This has gotten to the ridiculous - and extremely depressing - stage.
  • I also need to find someone to help cook as well as clean the house, not to mention doing some gardening.  Unfortunately, we live in an area where "good help is hard to find."  (Long story!)  People (best friends even) keep their cleaning people's names a SECRET, it's just that bad.  But I need to bite the bullet and get onto finding help because hubs is already a caretaker (who "waters and feeds me") and holds down a job which requires 7 days of work a week.  Furthermore, we are getting too old and body parts are breaking down left and right.  No longer can we go at the pace we've always gone before.  This is something I dread doing: how DOES one find someone in a place where there is very little help, no matter the price?  Wish us luck in this department please!  So, ridding our house of anything extra and getting help.  Yep, this will be the Achilles Heel in the whole thing.  I think finding a cure for CFIDS will be much easier! 
  • I want and need to start making trips to TJMaxx.  We're throwing away too much money on places that I order from on-line and this has to stop.  At the rate we're going, we'll run out of all money before the next year is over.  Besides, I really need to get out of the house.  The number of times I need to go to places like Kohl's and Bath and Body will have to be calculated as to what is a good rate, one that won't set me up for failure, but it has to get done!  This may sound trivial to you, but a real biggie for me.
  • Be more religious and strict about taking my vitamins and getting my nutritionals.  (More on this to come in a future post.)
  • Oh how I hate to say this, but I need to get back to last year's weight. (How stereotypical is THAT?  I need to start eating healthy foods.  Of course, if I can get things worked out with my endocrinologist, I may have a chance of getting this accomplished.  Here's to my endocrinologist being  at his most inspired when I go to see him!
  • And finally, I'll be trying to salvage that one resolution from last year, the one I dismally failed with: to make myself look human.  Wow.  Now that's a tall order!

That's it so far. I'm not sure I can or should take on anymore.  What do YOU think?  Any modifications or any additions?  Any suggestions on how to succeed?  Y'all have been awfully good at giving me advice that I find useful, so here's your chance to get your thoughts in with no guilt associated with it!  Besides, I'm sure we can all benefit from each other's suggestions!

And so we end the year 2012.  I hope we will all have a wonderful, fantastic and thrilling 2013.  I wish everyone a year that finds us all with improvement in our health (from our lips to God's ears, as they say), much success in all we attempt, much happiness and laughter in our lives and perhaps even most importantly, the gift of much love in our lives. Ciao and paka!   See you next year! 

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  1. It is good to have plans but don't beat yourself up if you can't manage them all though. Managing what you can must be a bonus for you and give you a buzz I know it does the boys however small it may be. You know what you are doing being ill for so long you must get so frustrated, I know we do seeing our boys lives pass them by. Each day as it comes we tell our boys if you can mange it do it if you can't then another time. Whatever works for you at that time new bodies would be good can we buy them? Sophie xx :)

    1. Sophie, I know (or believe) it's harder for you than for the boys b/c as parents we'll do anything for our children. When my daughter was in and out of a "major medical center," I was suddenly with her 24/7, yet before she became suddenly ill (described in this blog in many places, if you're curious - search box and/or label cloud) my hubby, the boys (adult), my doctors, everyone would have sworn that I had no more adrenaline left. But I realize now that I was suddenly like the proverbial mom that holds up the car to save her trapped child. Especially freaky, just weeks before my daughter got so horribly ill, I suddenly got very strong and had much energy, sleeping, nothing I'd felt since 1975. My guardian angel, I'm convinced, took care of me and pepped me up for the disaster about to come.
      Anyway, we'd bring her home after a few weeks and would just die, unable to move at all (big reason why I'm coming down with so many things suddenly, it was a two-year ordeal w/her dad and me totally knackered). However, she almost died so many times that I HAD to be there 24/7 and her dad and I agree (as do our local doctors, who are excellent, BTW, and could be in any major medical center they wanted, our town is unique that way for many reasons) that w/out the full efforts of the family, she wouldn't be w/ us. It was horrid: much incompetency (though not for her unique surgeries, but everything else!), bad luck out the wazoo and uniqueness of her illness, etc.

      I was also mad b/c I thought I had a covenant that protected my kids. If I had to be sick, I could accept being so in return for my kids' health. That "deal" was most certainly blown out of the water!

      So, really, I do get frustrated, but mostly I get mad that, b/c, as I said, my kids were supposedly off limits. I pray and hope your boys improve their health. It looks and sounds like they have a lion and lioness helping them. Our kids are our kids whatever their age.

      And I'll try not to beat myself up. You called it: I am indeed my own worst enemy and try to do all, accomplishing nothing, just feeling extreme guilt that I can't work myself into healthy mom/wife/BFF. This is the first Christmas that, despite all, I was not involved in non-stop cooking and then we ate around my bed. (I just go nuts killing myself doing it all, ending up in the hospital more than a few times before, during and after holidays.) I was happy eating in bed however, as my daughter was there, alive and well, knock on wood. I hope you see your boys with much improved health. They so deserve it, as do YOU!!! Your boys are precisely why I get so angry with the CDC, NIH, the so-called specialists supposedly on our side, and a plethora of other things! xxx