Hanging on to Dear Life

Do you remember that children's game, Crack the Whip? You all hold hands, and the leader runs around, pulling everyone along. It's quite fun, unless you're the one at the end of the line. I feel like life is playing Crack the Whip with me, and I'm just trying to hold on!

I did something crazy this year. I signed my two younger boys up for soccer. In my defense, I signed them up in May, when I was feeling relatively well and expected to be feeling better by September. I didn't realize I'd be having a downturn in August that wouldn't relent for quite some time.

So, now here we are -- my boys have soccer practice Monday, Tuesday, Wednesday, and Thursday afternoons. We have games on Saturday. Can I just tell you how much they love it? My youngest son had never played before. He was so nervous his first day of practice! By the end of the hour, his eyes were shining and he told me, "I love it!" He is ready for practice half an hour before we have to leave. He asks me, "Is it time to go yet?" every five minutes. My older son isn't as fond of practice (because you have to run). But he loves playing in the games! He scored his first goal yesterday, and he was so proud! He is quite a natural at it -- he isn't intimidated at all, he has a good sense of the field, and he has some pretty good moves.

How could I not give them this little piece of normal childhood? Yes, it's killing me, and I don't have time for anything else (shopping? cooking? cleaning? bah, who need's them!), but I had to do it. I just had to.

I'm still working Tuesdays. My husband and I both wish I didn't have to, but there are no alternatives in sight. My husband, wonderful man, has taken on so much to ease my burdens, he is at near breaking point. If he worked my day, too, that would mean six days at work a week, plus the extra duties at home. We can't afford to hire someone else, especially when the people we've tried in the past have been so ineffective.

My oldest son was in a bike accident a couple of weeks ago. The front wheel of his bike came off, and he hit the street at relatively high speed with his face. He suffered lacerations, abrasions, a broken tooth, and a broken nose. Luckily, he was wearing sunglasses, because they were destroyed but saved him from damaging his eyes. My husband was at jury duty and I was at work the day it happened. Of course, I closed down the store and spent the day with my son in the emergency room. He looked so terrible -- we jokingly called him a zombie. I thought I was holding up pretty well for him. But, when my husband finally got back and relieved me at the hospital, I broke down completely sitting in my car in the parking lot. Boys! If they don't kill themselves, they'll kill their mothers.

I tried to go to church today, even though I knew I wasn't up to it. I love the feeling I have when I'm at church. I stopped to talk with a friend, and half way through our conversation, I was crying (I'm an emotional wreck on my bad days!). I stayed for about 15 minutes, just enough time to take the sacrament. While I was there, I saw familiar faces and the familiar routine of people going about, serving, teaching their classes, taking children to the bathroom, etc. Oh, how I miss it! I ache.

So, I'm just hanging on right now. Barely hanging on.

Deer in the Headlights

I saw it coming. I really did. But there was nothing I could do about it.

Last week was about as bad as a week can get! Busy and stressful -- not a good combination. The a/c went out, and it took the repairman four days and two visits to fix it. We had pest control spray our house inside and out, forcing us to leave home for a couple of hours. My teenage son stepped on a stick on Father's Day, and it has been infected ever since. We had a couple of lengthy doctor's visits, as well as a couple of trips to get x-rays. It is not healing well, and my doctor informed me that he may require surgery. We don't have insurance right now, since we started our own business, and the cost would be about $10,000. Yikes! My daughter was in her first accident the other day (not her fault!) which meant I've been helping her with insurance adjusters and auto mechanics. My husband thought it would help me if we could get away, so we got a hotel on Friday. The bed was atrocious, and I did not get hardly any sleep! He took me to see Harry Potter the next day, but a 2 1/2 hour movie is not something I tolerate very well these days. (I loved the movie, though! I've read all the books.) After, we walked the mall for a little while, looking for a blender. We had an early dinner that was nice, but I ended up skipping my afternoon rest. Sunday, I not only taught the lesson for our women's group, but I also gave a talk in the main meeting when the families are all together. Sometimes I can piggy back an extra activity on top of an already busy day, if I rest enough before and after. I had accepted the assignment well before I could have known what kind of week it would be!

And ... yesterday, I had a terrible crash! Of course, I knew it was coming. I'm surprised it didn't hit me earlier. I came home from church and headed straight to my room. My husband fixed me a delicious salad and sent it up to me. My youngest was so sweet, making sure I had enough to eat, filling my water bottle, offering to share his dessert. I was woozy and passing out; I developed a migraine that prescription strength ibuprofen didn't help; my muscles AND joints were aching all over. I slept, but just a little bit. My eyes were twitching so bad, I felt almost blind! I finally fell asleep for good at 11:30 pm, and I was out cold until 9 am.

And yet, today, I am rebounding pretty well! I am taking it super easy today, of course, but I'm out of bed. I was able to change my sheets (long needed!) and do a load of laundry. I can't believe I'm not worse off today.

Something is seriously getting better. I feel like the tortoise and the hare ... and the snail. I'm at the beginning of the race, but I really think there is a finish line somewhere down this road. Yesterday was awful, but I am feeling so full of hope right now.

By the way, I did a great job with both my talk and my lesson! ;) That may have been a little help from above!

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.

Because I Believe

Another loss today ... surely this must be the last, because there doesn't seem much more to lose.

I awoke this morning to the sounds of my little ones searching the house for their Easter baskets (the Easter Bunny always hides them). I used to get up with them and watch them frantically search; this time, I lay in bed and listened. I could picture them in the kitchen when cabinet door after cabinet door slammed shut. I heard the garage door open and close. I could hear them rustling through the living room. I recognized a note of impatience and frustration as they found their brother or sister's basket but not their own. It was delightful to hear! I love such family traditions.

After baskets were found and breakfast was eaten with a rare dessert of chocolate, they scurried about getting ready for church. My girls put on their new Easter dresses and came into my room to prance in front of my full-length mirror. My boys came in to ask for help with their clip-on ties. It wasn't until they were ready to leave that they noticed I was still in bed. "Mom isn't going?" they asked, then came over and gave me a kiss on the forehead.

It wasn't until I heard the front door close and quiet fell around the house that the tears started coming. This was the first Easter that I wouldn't be sitting with my family during Easter services.

Something else this disease has taken from me. Something else I have finally let go of and surrendered to the disease. But, you know what? I know what my family will hear. It's the same story I've heard ever since I was a child. It's a story that is written on my heart. I know it, and more importantly, I believe it. I believe that Jesus Christ was resurrected, and I believe someday I will be, too. So even though today I lie in bed with a broken down body, I know that it is only temporary. Some day I'll be healthy and vibrant and complete, never to know pain or sickness again.

I can wait.

Surrounded by Wonderful

Today I am celebrating my support system! I've been reading a lot lately about the horrible stigma that comes with CFS, and I am so happy that I have wonderful people in my life who not only believe me but will do anything they can to help me recover.

First of all, let me say that one of my largest conundrums has been whether or not I should be going to church. Our church starts at 9 am. There are three meetings that are about an hour each: first, a meeting with the family to take the sacrament, then Sunday School, and then a meeting with the women. I teach once a month the third hour, when just the women meet together. I love church! I love the things that are taught -- I feel fed when I come home. I love teaching, especially when a really good discussion gets going. I feel enriched. I love my friends who are there. But (or should I say BUT), it wipes me OUT! It throws my schedule off completely. I usually come home and nap for two to three hours, which means I don't get to sleep until late that night. I have to pace well on Saturday to conserve energy, and then I have to take it easy Monday and Tuesday to recuperate. I feel like it is physically sabotaging my recovery.

So, my first celebration is my wonderful husband who came up with a plan. After watching me struggle with myself for a few months, he suggested I try to come only for the third hour. I can still take the sacrament first, and then slip in to the women's meeting. I won't have to kill myself trying to get up and ready by 9 am, and just one hour should definitely be manageable. I'll still stay home on those days when I'm not up to going, but this should keep me from feeling alienated and cheated out of something I really enjoy.

Second, I am celebrating those wonderful friends from church! I was absolutely miserable on Sunday. It was one of those days where I shouldn't have gone, but I wanted to be there, so I forced myself to go, and then realized I should have been more judicious. After the meetings, a couple of my friends asked me what they could do to help. You've been there, right? What do you say? I told them there wasn't really anything to do, of course. But they didn't stop there. They pressed me, saying there had to be something that would help. I joked that they could discover a magic pill that would make my kids keep up with their jobs. That led to more probing and I eventually admitted my deep, dark secret: the house is a mess. Not just the clutter that builds up when you have kids that aren't keeping up with their jobs, but two years of filth that accumulates when you can't do the big jobs like mopping the floor and washing windows and cleaning the oven and scrubbing the tub. And, just like that, they said they were coming over to clean my house.

Have you ever done that? Have you ever let someone help you ... I mean, really help you? I am scared and in awe.

When Will I Learn?

When will I learn? How many years have I been going through this? How many times have I TRIED to push through, only to crumple into a ball of tears, going home with my tail between my legs?

I knew it was a bad week for me. But, I got a phone call on Thursday asking if I could teach a Sunday School class for a friend who was going out of town. Does this sound familiar to anyone? Of course, I couldn't say "no", even though I KNEW I shouldn't be doing this. I was hoping against hope that I'd be better by today.

The alarm went off this morning, and I could not get out of bed. I watched my family get ready for church, feeling tremendous guilt that I was not joining them. I didn't even do anything to help in the chaos. I thought I could skip the first part of church and show up just in time to teach the class. After my family left, I finally got in the shower. All the signs were there -- this was not a good day! Nonetheless, I put a nice skirt on, blow dried my hair, put on some make-up, and headed out the door.

I arrived just a couple of minutes early. I went to tell Anna I was covering for Suzie today -- and she had to ask, "How are you feeling today?" Off went the water works! I tried to tell her I thought I could make it through the class, but she gave me a hug, took my materials, and gave them to someone else to cover. I'm home now, feeling silly, and berating myself for once again NOT LISTENING!!!

Dang! When am I going to get a handle on this?

A Lucid Day

It all started while I was reading a book on marketing and advertising. I shared a few quotes with my husband, and then I had a brilliant idea for an ad phrase we could use. Simple, straightforward, to the point. His eyebrow raised a little and he said, "Wow, that was a really lucid thought."

It didn't stop there. I went to church and in Sunday School class, I was asked to be the scribe for an activity we were doing. As people tossed around suggestions, I wrote them down. I then presented our ideas to the class. I kind of reworked the suggestions in such a way that revealed the point behind them. When I sat down, my husband leaned over to me and said, "Wow, that was really good. You did a remarkable job."

I like to participate in class discussions, because I know how much better the lessons are when people share their thoughts. It's easier on the teacher. So, during class, I looked for times I could make comments, and I shared a few of my thoughts.

Later in the day, at home, I was giving the lesson for Family Home Evening. Again, I was able to stay focused on what I was trying to teach, and we had a rather sophisticated gospel discussion as a family -- amazing with six kids ranging from six to 17 with limited attention spans. My husband said, "Kids, I just wanted to point out what a lucid day your Mom is having today! She has really been coming up with some good ideas."

Finally, we went to bed and had an hour's worth of discussion together. We talked about the business, the church lessons, our kids. My husband said, "Wow, look at us, we're having a discussion!"

Ah, a lucid day!