Yeah, That Was Humiliating

Since my health has deteriorated, my husband has been trying to convince me that I need to start using those motorized shopping carts you see at the store. I agree with him, of course -- my shopping trips are killing me, but using those carts would be like admitting that I'm ... disabled. It would be acknowledging that I'm not doing well and that perhaps I'm not getting better as quickly as I thought I would. Maybe I wouldn't exactly be giving up, but I would be giving in. But surely it would be helpful if I didn't have to walk up and down the aisles, right? Right?

Um, wrong. Yesterday, I finally decided to give it a try. I took my 16 year old son with me to help. He had used the carts before due to an injured foot, so I asked him to show me how they work. I nearly crashed into several people right from the start. I kind of got the hang of it, and we went to the produce department. I sent him scampering in different directions to get the items I needed. I tried to wheel myself to items that were at eye level. It was clumsy and awkward.

And yes, people stare! They stare a lot. Except they do it in a way that they think makes them look like they're not staring. They avert their gaze if you glance up at them. They become very interested in onions.

I was flustered. I passed by items I needed, and then had to back up with that annoying garbage truck beep announcing to everyone that I didn't know what I was doing. I felt like I shouldn't stand up to reach for items on a top shelf, because then people would know aha! I was a fraud! I was a perfectly healthy individual who had no right to be zipping around in one of those things.

I ended up missing a few things that were on my list because I just wanted to get out of there. The entire visit took quite a bit longer than my usual visits, because those things just don't go that fast! I've concluded that the stress from the experience was just as damaging as the exertion from walking the aisles.

Lesson learned.

Getting My Feet Wet

Well, I said I was going to start taking my writing seriously, and so I've begun! On my writer's blog, I've posted the beginning of a new short story. I would love to have you check it out and give me your impressions -- did the opening effectively "hook" you, were my descriptions effective, did it leave you wanting to read more?

Check it out at:

http://shelli-proffitt-howells.blogspot.com/2010/01/calling-all-critics.html

Clueless

I have been doing oxygen therapy for over three weeks now. Is it helping? I don't have a clue. I have had flu-like symptoms for almost two weeks -- persistent sore throat, sneezing, sinus pain, nausea. I know that's normal for most people with CFS, but it isn't typical for me. Sometimes I get a sore throat from overdoing it, but it's usually mild and only lasts a short while. Is this that hopeful worsening of conditions that indicates I'm actually getting better? "Die off," or something like that? Or did my kids pass on the actual flu to me, and I just can't get rid of it?

I think clueless pretty much sums me up. I surf the internet incessantly, trying to know what is going on with me. I'm desperate for improvement. I'll try anything. And I do try everything. I take the right supplements. I follow the CFS rules. I convince myself I have a modicum of control. I believe if I just ... then I'll get better. Maybe not all the way better, like I once thought, but at least a little better, right? Right? No. I keep slipping, slipping, slipping, down this nasty slippery slope.

To A Healthy New Year

I've discovered I don't do the official New Year's resolutions anymore. I don't like lists of things I "should" do. Instead, I find that I ruminate a few days, get a feel for the new year, and decide what is important to me. I've decided that my focus will be on two things.

The first area of focus -- surprise, surprise -- is my health. I think back to the beginning of last year and realize how much I took for granted. I thought I could build up a bit of energy, then blow it all on some "big" event, and then rest up and rebound right back where I was before. It worked, too, for awhile. I was lulled into a false sense of security. Then, near the end of summer, I discovered that I wasn't rebounding anymore. I was in a sustained crash, and no amount of resting was making it better. This level of functioning became my new normal.

With frightening reality, I realized that if I continued this pattern, I could easily push myself into severe CFS. I had been playing Russian roulette with my health. I had been taking one step forward, two steps back, and the next step could land me in bed for good. I have to change.

My new approach is one step back, two steps forward. First, I didn't exercise at all during the months I was crashed. I thought it would help me recover. What I discovered is that I ended up in a lot more pain than I usually am. I recognize that exercising has a price, but I also know that for me it is indispensable. So, I've added light yoga and strength exercises to my daily routine. Yes, it takes up extra energy, but I need to make room for it.

Second, I stopped cooking during my crash. Which meant I ate a bunch of crap for months -- frozen, canned, processed food. I'm sure it added to my overall poor sense of well-being. I'm back on track with preparing menus, buying healthy foods, and cooking when I'm up to it or enlisting my kids' help when I'm not.

Third, I have drastically reduced my activities. I stopped going to church completely, although it broke my heart. No more book club. No more girls night out. No more school events. I rely more heavily on carpooling. I limit shopping to one day a week.

Fourth, I've started a new protocol. I'm trying d-ribose and oxygen therapy. The d-ribose seems to have a positive but not miraculous effect. The jury is still out with the oxygen therapy. If it is doing what it is supposed to do, then I am ridding my body of detrimental viruses and bacteria, which would naturally trigger a healing crisis. In that case, I would expect to see positive results sometime around February. I'll post more information about this, if anyone is interested.

My second area of focus is going to be my writing. I have dabbled with a novel since last year, but this is the year I am going to take it seriously. My goals are to finish my first draft of my novel and to become a published author. To that end, I have created a writing blog to chronicle my journey and to get some critical feedback. You are welcome to visit my new blog at http://shelli-proffitt-howells.blogspot.com/ . And, when I introduce my main character in a few days, I'd love for you to tell me what you think!

I started this blog because I was tired of feeling so alone with this disease. I couldn't have imagined the friends I would discover through it. Thank you so much for your kindness and support. It surprises me that I care so much for people I've never met. I know you are all facing the same struggles I face. You are in my prayers as I wish all of you a happy, healthier new year!

The Antidote

Hope: v. to wish for something with expectation of its fulfillment; to look forward to with confidence and expectation; to expect and desire; n. a wish or desire accompanied by confident expectation of its fulfillment; something that is hoped for or desired; one that is a source of or reason to hope.

Hope is a dangerous thing. It builds expectations. It shines the light on the past as a titillating promise of the future. It paints tomorrow in such lovely colors. And invariably, if you give it too much attention, it disappoints.

I haven't given up hope. On the contrary, I honestly believe that I will see miracles, that researchers will find a cure, that I will someday be free from CFS. But, I think it is safest for me to keep hope tucked away in my back pocket -- always there, but never consciously acknowledged or relied upon.

Love is the true antidote to despair. A note that says "I miss you." A gift left at the door. An unexpected visitor who can only stay a minute. Words of encouragement, reminding me I'm not alone. Little acts of kindness. Hugs and kisses and that spot right under my husband's arm where I fit perfectly as we watch TV on the couch. These are the things that calm my troubled heart, bring peace to my soul, and remind me that this life ... this life ... is worth living.

Despair

I don't give in to it often. Just once in awhile, there is a splinter, then a crack, finally a crashing down of the weight of the enormity of this disease. It catches me by surprise. I let myself cry, great wracking sobs if no one is around. It lasts about half an hour, I suppose.

The funny thing is, it doesn't change anything. Just like hope, despair is impotent to change anything about the way I live my life. I still shower and make my bed. I do some yoga. I eat a healthy salad for lunch. I take my supplements and try a new protocol. I nag my son about homework. I go to bed at a reasonable hour.

I do my best with what I've got, because really, is there any other way?

Tomorrow is always a better day.

Congratulations!

Congratulations to Treya, Sue, Alyson, and Laurel, who each were recognized by Wellsphere in their People's HealthBlogger Awards 2009! It is nice to see our community so well represented. For a full list of the winners, you can go to

People's HealthBlogger Awards 2009.