Past Fear and Frustration

I'm not happy with my many negative posts lately, but I understand where they are coming from.

You see, I thought CFS and I had an understanding. I play by the rules most of the time. Then, if something big or important comes along, I cheat! There is a mild punishment afterward, where I am immediately contrite and rest up for a day or two. CFS forgives me, and I'm back to "normal" within the confines of the rules.

And then CFS betrayed me. Or, perhaps it was the last straw. In any case, it stopped forgiving me, and left me sitting in the corner for a very, very long time. No amount of crying or whining has softened its heart and made it relent.

Thanks to Renee's recent post, I am now coming to terms with the fact that I am in a relapse, not a crash. I don't know how long it is going to last. I just know that this is my new "normal," and it's time to adjust my life accordingly.

If I look at it objectively, I can see what happened. Stress is the trigger for my disease. I can see how the unrelenting stress over the summer caused me to fall further down the slope. It terrified me, because I thought, what if I have another episode? What if I fall further? There isn't that much further to go. The next bout will send me to bed with severe CFS for sure.

Well, if that happens, there will be people to take care of me and my family. It is what it is, right? But I can't let fear rob me of hope. I need to continue to tackle this disease the same way I always have, and trust that I will eventually see improvement. Inch by bloody inch, that is.

So, I'm going to change my attitude! I will wake in the morning and force myself to physically smile. They say the physical act of smiling triggers endorphins. I could use some endorphins. I'm going to focus on gratitude, because I have so, so much to be grateful for! Of all the things that CFS has stripped me of, it has taken nothing from me of any real importance. I am loved. I am happy.

Some good news: I don't have to work at all the next three weeks! That should allow me to stick to a routine and consistently stay within my energy envelope. It this experiment is successful, I may not have to go back to work at all. :)

Houseworkaphobia

I am afraid to clean house.

There is actually a rational explanation behind my irrational fear of housework. During the first year of CFS, when the doctors couldn't tell me what was wrong or what to do to fix it, I did what we typically do -- I pushed myself to try to keep up with my "normal" life. As a result, I was in a constant, 24/7 zombie mode. The fatigue and brain fog were so severe that I couldn't maintain a decent conversation with anyone. I spent hours on the computer, my only respite. My family thought I was addicted. They would come in and interrupt me, trying to interact. They would say something to me, and I'd have to stop, look them in the eye, and still ask them to repeat themselves three or four times before what they were saying made any kind of sense to me. I would still be on the computer when my husband came home from work at 9 pm. I would be desperate to get some sleep, but I was so tired, I couldn't even find the energy to get up and walk upstairs to bed. It was bad. It was ugly. My family suffered.

Then I discovered I had CFS! And pacing! And I started to live within my "energy envelope". Sort of. I'm still working on that. But, anyway, the brain fog began to clear for moments at a time. I could actually talk to my children. And parent them again. It was difficult, because they had become quite feral and did not take kindly to the retaming process. Nonetheless, I found the strength and energy to stick with it, and we are becoming a normal family again. I actually played a board game with my children the other day. It was amazing.

So, my great fear is that if I start doing housework again, I will no longer have energy left for my family! I need to keep an energy reserve for those unexpected moments that require me to parent. I don't want to be unavailable to them again because I was wiping the kitchen counters, or scrubbing the toilets, or sweeping my front porch.

Still. I want to be able to bless my family by creating a more peaceful, inviting home for them ... and me. I'm in the middle of reevaluating how I spend my time. I am coming to realize that too much time on the computer is as harmful as overdoing it physically. I need to start "switching" activities, and maybe I can add a few minutes -- 5 to 10 at a time, maybe -- of housework to my day.

I am going to face my fears and start FlyLady(FlyLady.net) this month. I discovered FlyLady when I was pregnant with my youngest son. Her program helped me dig out of disarray after months of morning sickness that left me unable to do anything. I realize things are different this time, so I'll have to modify it and keep it within my abilities. But I think I can do this.

AND keep my cleaning lady. ;)

Everything Has Its Price

My niece was married on Friday. I loaded all my kids into the van, and we made the 1 1/2 hour ride down to my mom's house for the reception. I thought it would help if I let my oldest daughter drive... it didn't! I visited with my sister whom I haven't seen in two and a half years. We laughed and had a wonderful time. After the reception, it was early enough that we could all go swimming. We ended up hours in the jacuzzi, and I just couldn't bear to tear myself away from the fun. Finally, it was late. My daughter was staying the night, so I ended up driving home myself, in the dark.

I thought I was taking it easy on Saturday -- just a little trip out to the grocery store for much needed food. The evening came, and I had to make a decision: do I go to see fireworks with my husband and kids, or do I get an early night and make it to church the next day? I chose to stay home.

Yesterday, I woke up, and there was just no way I could make it to church. I was aching all over, I was weak, I was emotional. Everything cried, "No way!" My husband took one look at me and suggested I stay home. "But I stayed home from fireworks so I could go!" I said. He told me, "Honey, it doesn't really work that way."

Oh, my wise man. I've learned that everything has its price when you have chronic fatigue. I thought I had the "system" down. I thought I could have my own "cap and trade" program and get away with it. I discovered two great flaws with that. First, I don't know the true cost of an activity until the aftermath actually hits me. Second, I follow my heart and jump into activities that end up really, really expensive.

Is it possible to really listen to your body? I'm still riding the roller coaster, and that can't help my recovery. I'm doing a lot of great things that I think can really make a difference to my health. But I'm always guessing at my limitations, and I am not getting it right. I sabotage myself, I think.

I know why. I hate the thought of life passing by without being able to live it. I know some things only happen once, and then they are gone. I don't want to regret this giant part of my life, especially if it drags on and on and on. I want to steal a slice of normalcy, even though this disease has decided it isn't supposed to be mine.

Whammy!

Wow! I haven't had one of those days in quite awhile!

Yesterday was my day to mind the store. I always hope for a quiet day at work, but alas, it was not meant to be. I had several customers throughout the day. One customer in particular was pretty demanding, not only physically but mentally as well. He was a nice fellow, and it turned into my biggest sale of the day, but it also took a lot out of me. He kept me on toes ... and my feet! ... for the better part of an hour.

After work, I went to my daughter's awards ceremony. My oldest is graduating from high school with honors, and she was receiving a scholarship award as well. I'm very proud of her -- what a good example to set for the rest of my brood! I wouldn't have missed it for the world. However, I was a bit late arriving since I was coming straight from work, and so I had to park in the farthest parking lot. There was a steep hill I had to climb to get to the venue. I have not had a workout like that since my pre-CFS days!

I had no idea that the awards ceremony would last -- are your ready for it? -- two hours! We were huddled on benches as the temperature dropped and the wind picked up. My muscles were tensed trying to generate warmth. My back was aching, and it was nearly unbearable!

By the time we got home, it was after everyone's bedtime (mine included). As I was getting ready for bed, I noticed my pedometer -- over 5300 steps! To put that in perspective, before CFS I was averaging 5000-6000 steps a day, with a busy day pushing 8000. Since CFS, 3000 steps is a busy day. Today, I have 489 steps so far. :) I fell asleep almost immediately, and I slept like a rock until 9 am this morning.

Here's the amazing thing: I thought I would be headed for a crash for sure! And yet, I am feeling surprisingly good. My energy is steady, I'm not sleepy, and I haven't felt like I need to be horizontal. I'm not feeling any post-exertional malaise. Granted, I am having a super slow day (hence the 489 steps), but still ... I must be doing something right if I've tolerated that kind of day so well.

Hmmmm ... hopeful?

ME/CFS Awareness: Managing CFS

There is no treatment for CFS. You treat the symptoms; you manage CFS.

I currently do not take any prescription medication. I have in the past, but it was either not helpful or made things worse. Sadly, the medical community has not been my best friend when it comes to CFS.

So, here is what I do to take care of ME (get it?):

1. PACING!!! There is no drug or supplement or protocol that has done more good for me than pacing. My quality of life skyrocketed once I found out that you can not "push through" CFS. I still make mistakes ... and learn my lessons ... but overall, I do pretty well making sure I get plenty of rest between high exertional periods. It has allowed me to go from being a zombie 24/7 to being lucid and functional 3 to 7 hours a day.

2. Formal, scheduled periods of rest. This is a bit different from pacing, I think. Twice a day, regardless of activity level or level of fatigue, I rest for 30 minutes. I go in my room, put on my migraine/sleep mask, set the timer, and just rest. I try to add a little deep breathing and maybe some light visualization for relaxation. But I don't push it. Sometimes my mind races for the full 30 minutes; sometimes I fall asleep. Usually it's somewhere in between. I usually feel much better afterward, but if not, it's a great gauge that tells me I need to slow down a little more.

3. Supplements. I discovered pretty early on that you can be so desperate to get rid of CFS that you'll spend a small fortune to try anything! I use a little more restraint now. My rule of thumb is that it has to either be obviously effective or good for my overall health. At night, I take a multi-vitamin, calcium, magnesium, fish oil, and melatonin. In the morning, I take a mega dose of B12 sublingually, CoQ10, and a B complex. I take .75 oz. of dark chocolate twice a day, after my rests. I have begun taking additional anti-oxidants, including CoQ10 in the afternoon to see if it helps with my afternoon slump. I had been taking NADH, but I stopped for a few weeks to see if it was helpful. I think it was, so I'll start taking it again next week. I'm also going to be testing electrolytes and d-ribose.

4. Exercise. Right now, I do about 15 minutes of stretching daily to ease pain. I am hoping to begin adding 5 minutes of cardio. No panic, just something very low impact that I can monitor and pace carefully -- probably rebounding (mini-trampoline) because it has the added benefit of flushing the lymph nodes and improving the immune system.

5. Diet. OK, I have to admit this is more theory than practice at this point! Although I have made some progress by eating healthy dinners. I have easy, healthy recipes that even my kids can make if I'm not up to it (see my other blog, The Flagging Chef, sidebar). The next step is to cut down on the sugar and other high Glycemic Index foods so I have a more steady stream of energy. Ha! We'll see.

Did I leave anything out?

ME/CFS Awareness: How CFS Affects Me

Yesterday, I blogged about my symptoms. Today, I am blogging about how it has affected my life. That means a trip down the old memory lane. It isn't something I allow myself to do often, because that usually means comparing myself to the "old" me, and that isn't always pleasant!

Before CFS, I was:

An interior decorator
A church volunteer
A gardener
A good homemaker
A genius
An exercise enthusiast
A social friend
A good wife
A really, really good mom
An avid cook
A nature lover
A shopper

Living with CFS is like living inside a box. Most of those things from the "old" me no longer fit inside my box. The things that are most important to me have to be reduxed just to be able to fit.

I am no longer an interior decorator. That was just a fun hobby for me and completely superfluous. I now volunteer one hour a month at church instead of several hours a week. My garden now consists of a single pot. My current exercise routine is about 15 minutes of stretching a day. I am hoping to be able to add 5 minute of aerobic activity soon. I can do laundry. I visit with friends once a month at my book club. I can cook a quick and easy meal a couple of times a week. I shop online. I still love nature; I just haven't visited in awhile!

My husband is a good husband. He loves me and supports me in every way. He has lovingly lowered his expectations.

Here's the hard part. I am no longer a really good mom. You see, being a really good mom is really hard work. You have to be able to set structure and follow through with consequences when it is breached. You have to be able to weather unhappy children. You have to be able to teach them skills to become independent. You have to work with them side by side. You have to be available to them when they need you, not just when you are feeling good. You have to get up pretty early for the little ones and stay up late for the older ones.

Now, don't get me wrong. I still love my children ferociously, and that goes a long way towards making up for faults. But. I can see how much this has hurt my family. I can see that they are a little lost without me. I can see some crumbling around the edges. I can see their yearning for their mom. You know, the "old" me.

Working Girl

I'm back in the store today. Once a week, I give my husband the day off and I cover for him here in our mattress store. We chose Wednesday, because it is typically the slowest day of the week. He's the expert; I'm just holding down the fort for the few unlucky people who happen to wander in while he's gone. (I'm actually pretty good, considering I'm a complete novice in the mattress industry.)

Not surprisingly, my one day work-week poses a problem for me. It takes me out of my normal routine, and it requires more exertion from me than I am used to. You would think that with all these mattresses around me, I'd be able to take advantage of them and still get my rests in. However, I'm a bit paranoid. I just think it would be so unprofessional for a customer to walk in and find me napping in the corner.

Today, I think I've finally figured out a reasonable compromise. My husband bought a funky ergonomic chair that lets you recline substantially. I think I can get several 10 minute rests during the day here at my desk using that chair. I tried it once this afternoon, and it was really refreshing.

Any suggestions on how to make it through work without causing too much damage?

The Price of Overconfidence

I was thinking about the phrase "bill of health" and it made me think of the tab I ran up yesterday.

1. I worked at the store all day yesterday. I only had two customers, so it was pretty quiet. I realized by the end of the day, I still felt pretty good! I was feeling pretty confident. (cha-ching)

2. I then went to my book club. I love my book club! The books we read are so interesting, and even if I didn't like the book that month, the discussions are always so fantastic. Unfortunately, we had a small group, so the discussion was a little tepid this time. It wasn't as fun as usual, but we got out of there a little early. I was still feeling pretty confident. (cha-ching)

3. I came home and unwinded by curling up on the couch and watching "Survivor." It's pretty mindless entertainment. I was thinking I should probably get to bed when it was over, but I convinced myself to stay up for "The Office" next. Then, I stayed up for "30 Rock," even though I don't really even like that show very much. A little voice started a warning. Regret was waiting on the sidelines, tsk tsking. (cha-ching)

4. I thought I'd put my post-exertional malaise theory to the test. I was still awake when my daughter came home late from work, so I chatted with her about how her day went. I ended up getting to bed about two hours past my usual time. (cha-ching)

And ... boy am I paying for it today! I was lying in bed dreaming this morning that it was getting later and later and I needed to get up, but fatigue weighed so heavily upon me that it was like I was in a coma and could not even force my eyes open to check the clock. I was finally awakened by the telephone ringing at 10 am. On my good days, I'm up at 7 or 8 am after nine to 10 hours of sleep. I languish in bed for a little while, but I don't feel sleepy. I panic if I'm not up by 9 am; that usually means difficulty getting to sleep that night. This time, it had been over 11 hours, and I still felt groggy. I was achy all over, I was dying of thirst, and there was just a hint of a sore throat. I wasn't even up to my morning yoga, and I didn't make it into the shower until noon.

Thank goodness it's Friday! At least I can get all the rest I need to bounce back tomorrow without having the alarm going off for school. I hope I'm feeling better, because Vons is having a really good sale tomorrow, and I would like to be able to feed my family.

Post SEX-Ertional Malaise?

(Hmmm ... couldn't find an appropriate picture. For the best?)

My husband and I were considering this question. Could ... intimacy cause post-exertional malaise? I mean, it is certainly the most aerobic of any of my current activities. Could it be sabotaging all my careful efforts to pace and monitor my activity levels?

Of course, the benefits are substantial: it relieves stress; it boosts immunity; it burns calories; it improves cardiovascular health; it boosts self-esteem; it reduces pain; and it HELPS YOU SLEEP BETTER! (from WebMD)

Maybe it's like dark chocolate when you're on a diet -- it's so good for you, the calories just don't count.

Perhaps I should just keep an awareness in the back of my head and try to adjust my other activities to compensate. I really don't think I'm going to formally "pace" this one; too much scheduling takes the spontaneity and fun out of it.

Like I told my husband the other night, this is one thing I am not willing to sacrifice to CFS. The response from my so very supportive husband? "Me, neither."

I Think I May Be on to Something Here

Thank you to Jo and Rachel for a very informative discussion on rest. I have been pacing ever since I discovered the technique; however, I have never actually taken scheduled, lying down with your eyes closed rests. After reading their posts and overcoming my fears (what if I fall asleep and can't get back up? what if I'm incapacitated and not around for my kids? what if it messes up my circadian rhythm and I can't get any sleep at night?), I decided to give it a try. So, I have scheduled two 30 minute rest periods into my day. I go upstairs, turn on some classical music, put on my spa sleep mask, set the timer, and REST.

So far, the results have been amazing! My fears were, not surprisingly, unfounded. Most of the time, my mind is still racing (although I try to keep away from worrying), so I don't actually fall asleep. 30 minutes is the perfect amount of time. It cuts off the energy drain and gives me a little bit of a boost. I'll know better this week, but I think it helps me rebound from difficult days a little better. I'm still getting to sleep ok at night. My kids have thus far survived without me for 30 minutes at a time.

I have been trying to develop a wellness program to help me inch my way back to recovery. I think this may actually be a big piece of the puzzle. I'm feeling very hopeful that I have one more tool in my toolbox to manage this disease.

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?

Good Things

On this last day of January, I am here to celebrate good things!

First, my circling shark turned out to be more of a goldfish. With sharp teeth, I mean. It had a little bite, but it wasn't nearly as dangerous as I had feared. I took things easy, I was gentle with myself, and I bounced back surprisingly quickly. Yay!

Second, I actually hit a lot of my goals! I added a few good links and two actual pages to my website. I cleaned it up a bit and tweaked my key words. Plus, I have tons of good ideas to work with, and I'm feeling motivated to work on it. I checked my stats, and it looks like traffic is picking up! It's very exciting.

Third, I completed enough research to actually START MY NOVEL! Yes, I put pen to paper and actually began to write. I'm afraid I'm not going to be able to share it with anyone, though, not even my husband. I'm feeling a little protective of it, and I can't handle any criticism. I believe the fear would stifle my voice, and I wouldn't be able to write effectively. That's hard, though, because another part of me is yelling, "Look at me! Look what I've done! Validate me!" I think I'll let the fear win out this one time.

Fourth, I've added tons of good recipes to my recipe blog. I feel like I'm getting a good variety of meals that seem to be really easy to fix. I can't wait to try them all.

Fifth, I'm taking good care of myself right now! I'm pacing. I've skipped a lot of TV at night, so I'm getting to bed at a reasonable time. I've done three weeks of menus from my recipe blog, so we've had a lot less processed or fast food. I've kept up on yoga, and I've really enjoyed my belly dancing! I seriously haven't lost any weight, but I haven't gained any, either. And I feel good! That's the ultimate goal, anyway, right?

Ah, yes, challenges await, but for the moment, I'm basking in the warmth of good things!

The Circling Shark

I woke up with a sore throat this morning. I know what that means. I swear, I've been listening to my body tell me that I'm overdoing it again. I've slowed things down and taken it easy. It's just that as a mom and new business owner, there are things that HAVE to be done.

I worked all day Thursday, even though I had had two bad nights and woke up twitching (my "tell" that I'm maxed and need to recuperate). Rom had a delivery, so I ended up going in on Friday -- not much chance to catch up. Saturday, we went over my son's disappointing semester grades and sat down for a homework session. I taught my lesson in church on Sunday -- rewarding, but exhausting. Rom had a warehouse run and two deliveries yesterday, so I was back in the store. Before that, it was pulling teeth to get my son to sit down for another homework session. Plus, my daughter had to finish up a science fair project that was due ... earlier that day. Drip, drip, drip -- each one a little drop of blood in the water.

So, I'm not surprised the shark struck today. I'm getting sick. I can barely keep my eyes open, but I know I can't get back to sleep. I need to eat, but nothing sounds good. I think I'll spend the day relaxing with a good book. Maybe a peanut butter sandwich and some chocolate would help. Yes. Lots of chocolate.

Bah! Humbug!

This was a tough Christmas for me! I tried to pace myself through the holidays, but it didn't seem to work. Then, I tried to push through the holidays, and that didn't seem to work any better! I'm not sure what lessons I learned. I don't know what I would do differently, and yet this didn't work out very well. That encapsulates my feelings about this whole CFS thing. If I'm going to live with this, then something has to change. I just don't know what or how.