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.

Cake Wrecks and Charitable Donations

The wonderful people at Cake Wrecks are giving away $200 a day for the next two weeks to charity. Plus, they are asking their readers to donate just $1 to the charity of the day as well. They are asking people to leave comments to suggest where they should give their donations. I've left a comment asking them to donate to the Whittemore Peterson Institute. I thought others might want to leave a comment, too. This is a wonderful opportunity to help people become aware of the great strides being made in CFS research and to hurry along the research that could ultimately lead to a cure.

http://cakewrecks.blogspot.com/2009/12/catchin-spirit.html

Visible Illness

Well. I've decided to come out of hiding. I am going to post an actual picture of myself for my profile picture.

First of all, this is the picture I chose for my Facebook profile -- I think it's a good idea to show that I am a happily married woman on a social networking site, don't you think?



Second, this is the picture I chose for my family blog. I think it shows my joie de vivre, kind of fun and sassy, like me. I really do love my family and my life.




Finally, in spite of protests from my vanity, this is the picture I am choosing for my CFS blog profile:



The reason I chose this picture is because CFS is not an invisible illness. It is visible in the dark circles and lines that cover my face. It is visible in my furrowed brow when I'm in pain. It is visible in my hunched shoulders. It is visible in my gait and pace when I walk. It is not an invisible illness.

I have a few theories on why people don't see my illness. First, I think that many people are too caught up in their own "invisible illness" to notice my pain and suffering. Life weighs heavily upon all of us from time to time. It is difficult, and sometimes frankly impossible, to notice others' pain when our burdens are overwhelming and hard to bear.

Second, I think that many people just can't stand the thought of a friend or loved one having to go through this ordeal. It is scary to think that I will never get better. I've dealt with this kind of denial. To not have "me" back again? Ever? Surely, that is not something I embraced easily. How can I expect the people I love to believe it? No, I forgive them for holding on to the belief that this has to be something else, something the doctors missed, something that can be cured.

Finally, I think that there are just some people who won't see because then it would prove them wrong. They would be forced to look in the mirror and see someone who judges harshly, who believes the worst in people. They would see dark holes where their compassion and humanity should be. It would be an ugly image staring back at them. I pity these people most of all.

Messy

I have six kids. Even before CFS, my home was barely tidy on the best of days. The day I conceived my first child I knowingly and lovingly sacrificed shiny surfaces and clear pathways and anything white. I am OK with that.

However, I must admit things have gotten out of hand since CFS. I thought I had been doing a pretty good job of teaching my children work and responsibility. But once I got sick and could no longer nag them to do their work, it all went downhill rather quickly. Instead of doing a job right, they were doing it just good enough -- and that bar kept getting lower and lower.

I finally recognized that we needed help. I took my friends up on their offer to clean my home. They were wonderful and spent a week digging us out. I could breathe again! The kids could have friends come over! We were not too embarrassed to open the door when the doorbell rang! But old habits returned quickly, and messy was creeping up on us again.

I am now having a woman come twice a month to clean. Yesterday was her first day. I did not spend the entire morning frantically cleaning before she got here -- you all know how that would have turned out. Well, she wasn't happy that she had to clean around the clutter! She made it very clear she disapproved of how messy my home was. I explained I was sick, but she obviously didn't get it. She wanted to know why my kids weren't helping out more. She gave me instructions on how she wanted it picked up better when she comes next time. And, she said she needed to get started earlier in the morning than I had her scheduled.

I'm just wondering what ever happened to discretion and respect in the employer-employee relationship. I am paying her to clean my house. That implies that yes, it is dirty. Why the disdain? If I were the kind of housekeeper she thinks I should be, she wouldn't have a job! Does she really want to encourage me to get on top of things? Would the satisfaction of knowing she shamed someone into keeping a clean house compensate for the lack of income?

By the way, she was fantastic and worth twice what I paid for her services! I will happily endure her huffs of indignation when she comes back in a couple of weeks.

Tipping Point

I had an experience last night that normally would be too painful and personal to share -- except that I know that many of you have been here before.

My husband and I met with our very well-intentioned ecclesiastical leader. He wanted to know what he could do to help our family, and he was also there to counsel us on what improvements we could do, as well. I must say, he approached the meeting with love and concern. This is a very good man, whom I love and respect as well. He is not, however, very well-spoken -- he's a man who has worked the land all his life, so he can be a pretty blunt.

He encouraged us to set stronger boundaries and responsibilities for our children. He told my husband that, although he works hard starting up our new business, he can't take it easy at home. He needs to be the enforcer and work alongside the kids to keep their feet to the fire. All very welcome advice, I must say!

Then, he told me he was going to likewise be blunt with me. He said, "I know you have a problem. Get over it."

What?

I tried to explain that I have a medical condition, and that I have been trying to "get over it" for the last two and a half years. He kept repeating, "I know you have a 'problem'" but would not actually concede it was a real medical condition. He then went on to tell me stories about people who defied modern medicine and were healed -- a girl who was told she would never walk, who walked; and then she was told she would never run, and she ran. A boy who had asthma so bad that he was tented three times and his parents were told there was nothing more to do for him who eventually went on to play varsity basketball. A woman who had double vision but taught herself how to play the piano.

Would he have told me to "get over it" if I had MS? Or cancer? Or a stroke? If I were a paraplegic, would he tell me I could get up and walk -- if I only had enough faith?

My shock and disbelief overshadowed one bit of counsel that was actually appropriate: he suggested that I not allow my "problem" to consume my attention, my focus, and my life.

What if, instead of buying into the stigma that people with CFS are lazy, crazy, or depressed, he had been informed about CFS? Maybe he could have counseled me to set priorities and be aware of how I use my precious "good" hours during the day (well-needed advice, I must admit; I can waste time sometimes). Maybe I would have left with some ideas that would strengthen me as a wife and mother, that would bless our family. Maybe I wouldn't have come home and cried myself to sleep.

So, I have been nervous about starting my e-mail campaign for ME/CFS Awareness. I know that this is exactly what I am opening myself up to. But, this is the tipping point for me. Good people like this man need to be aware of what this disease is and what it does to people. I believe it is just like "Horton Hears a Who" -- if enough of us raise our voices, then maybe, just maybe, we'll be able to finally pierce the surface of ignorance and we will finally be heard.