Hmmm ... I Bet We Could Submit A Few Photos!

I found another fun website! It's called Awkward Family Photos. I have it on my sidebar if anyone wants to visit. Here's a fun little taste of it:

The Bird

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Last Words

Thank you for indulging me and letting me share my journey with CFS!

CFS is often called the "invisible illness" because people can't actually see the effects and don't understand it. I believe, however, that everyone has their own invisible illness. It may be health, finances, or relationships -- something that makes you hurt, something that changes the course of your life from what you had planned. CFS is mine, and I own it, and now that it is out there, I can put it in the background of who I am and leave it there. Like everyone else dealing with life's surprises, I can adjust! I am happy, my life is rich and abundant, and who doesn't love a good adventure?

Hidden Blessings

Sometimes, it's so easy to see everything you are missing when you have CFS. So, in a rare moment of quiet contemplation, I came up with a few blessings I have now specifically because of CFS.

1. A clean slate. It is exactly the fact that I can't keep up with my old activities that I get to start over. Before CFS, was I doing things because I loved doing them? Because I "had" to? Because it was expected of me? Because it was habit? Because it was an escape? Now, my functional time is precious, and I have much more stringent requirements before an activity even makes the list! I am choosing to remake me.

2. Permission to say "no." There is no pressure to agree to do something that I'm asked to do. I have to be honest with myself. If it is not physically plausible, or if it crowds out something of greater value, I get to say "no!"

3. Less doing, more becoming. I like the word "becoming." It has no beginning, no end -- it's a process. With so many activities stripped away, I'm left so often alone with myself. Am I happy with what I see? What do I embrace? What do I want to change?

4. Discovering hidden strengths. Faith, strength, patience, courage. Some I knew I had; others have been a surprise. This is an amazing opportunity not only to recognize but to use those strengths.

5. Becoming creative. I've seen this in other people with CFS, too. Perhaps it's all that internalizing that taps into it; perhaps it's a need to express the upheaval of your life. Maybe it is even because you have to become creative just to enjoy life! Discovering my creativity is a fun process.

6. Ability to find joy in the tiniest things. I can't believe how much I missed before! Lying in bed, listening to my boys play together, hearing their giggles. Walking outside and feeling the sunshine on my face. Being nearly asleep, but waking when my husband reaches across and kisses me so tenderly. I never had time for these things before.

7. Relying on others. To someone who is proud and independent, this does not immediately seem a blessing! But to be on the receiving end of love and service is something that stays in your heart and is treasured forever.

8. Relying on the Lord. My strengths pale in face of this enormous challenge. I am all too aware of my weaknesses and failures. I can see the hand of the Lord comforting me, strengthening me, and making it up to the people I love when I can't be everything for them.

9. Learning, learning, learning! Emotionally, spiritually, intellectually, physically -- every day brings a new lesson, something I never knew before.

10. Gratitude deeper than I could have expected. For true friends, for good days, for knowledge and understanding, for small kindnesses, for my family, for my faith, and for a million things more.

The Effects of CFS

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.

Managing CFS

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

This disease is like an abusive boyfriend, and I'm the stupid girl who is crazy enough to stick with him. I walk around on eggshells, afraid to do anything to piss it off. Then, when it hits, I blame myself. I shouldn't have walked to the mailbox today. I should have had the kids help me bring in the groceries. Why did I do that extra load of laundry? I shouldn't have lingered fifteen minutes after my show was finished before going to bed.

My routines are to help me avoid the crash and lengthen my energy window. So, here is what I do to take care of ME (get it?):

1. PACING!!! Pacing simply means making sure you rest before and after tiring activities. 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.

That's it! Overall, if I stick to the routine, I do OK day by day. I only have trouble when I cheat (Word to the kids!!! Cheating is bad!).

Tomorrow, I'll let you know how CFS has affected my life.

Fatigue and the Crash

Hmmm, explaining the fatigue in Chronic Fatigue Syndrome. We've all been tired before. Does fatigue really need explaining? Well, yes and no.

You have all been tired before. You have probably even been exhausted before. That is what it feels like. However, I bet that when you went to sleep, the exhaustion went away. For me, that never happens. I wake up feeling just as tired as when I went to bed. It is like being in a desert, dying of thirst, and finally reaching an oasis. You take a long drink of water, expecting relief – but you are just as thirsty as before. You can never, ever quench that thirst.

The reason for that is that people with CFS have dysfunctional mitochondria, which simply means we don't produce energy very well. Think of it this way: if energy were money, and sleep were your “job,” then normal people basically get paid like a Fortune 500 CEO. I, however, am a Chinese sweatshop worker. Normal people spend their energy lavishly on such luxuries as “running errands” or “visiting with friends” or “helping kids with homework.” I have to live within a very tight energy “budget” just to make it through the day.

Thankfully, I have a small energy “window” in the middle of the day. For a few hours, depending on how I'm doing that day, I feel nearly normal. It's kind of like catching your second wind. This is when my mind is clear and I can get a few things done. But, I have to be very careful, because if I overdo it, then I risk THE CRASH.

The Crash breeds fear in the heart of every person with CFS. It happens when you push yourself too far. You spend more energy than you have, and you pay dearly for it! When a crash happens, your symptoms are magnified tenfold. The energy window slams shut. The exhaustion is so severe you have to go to bed. You are incapable of doing anything at all. You are completely out of commission for at least 24 hours, but it can take a week or longer to slowly come out of it and find your way back to “normal.”

Tomorrow, I'll tell you what I do to manage CFS.

ME/CFS Awareness: My Symptoms

CFS is a whole body rebellion! It affects the nervous system, the immune system, hormones, the circulatory system, muscles, and the gastro-intestinal system. However, every person experiences CFS differently. So, without further ado, here are my personal symptoms:

My Symptoms:

Fatigue (duh!)
Cognitive dysfunction
Impaired memory
Difficulty with word finding
Word switching (always humorous)
Post-exertional malaise (but usually not severe)
Unrefreshing sleep
Insomnia
Headaches, sometimes migraines that last days
Sore throat, but only when I've overdone it
Night sweats
Sensitivity to light
Sensitivity to sound
Sensitivity to cold
Eye spasms (blepharospasm or myoclonus)
Tinnitus (ringing ears)
Orthostatic intolerance
Dizziness
Fainting
Jaw pain (TMJ)
Weight gain
Muscle soreness when I wake up
Anxiety

My worst symptoms are the fatigue (again, duh!), cognitive dysfunction, and the ever-embarrassing eye spasms! The rest of it is annoying and bearable.

Tomorrow, I will explain Fatigue and "The Crash."

How Does Your Garden Grow?

This week is International ME/CFS Awareness Week, and so I will be blogging a bit about CFS and how it has affected me. I thought I would start the week by answering Lauri's question, "How does your garden grow?"

Every year, about this time, I get a hankering for a garden. Not just any kind of garden, but a big vegetable garden like I remember from our childhood. I have accomplished it once -- when we lived in Oceanside, we had a lovely garden with zucchini, tomatoes, peppers, watermelon, squash and more. I loved it!

Well, since I've had CFS, I've basically given up hope for having a real garden. The very thought of hoeing and planting and weeding and watering and keeping on top of it all makes me have to go lie down! However, this year, a spark of an idea came to mind.

And ... tada!!! Here is my vegetable garden, CFS-style:

I have a Patio variety of cherry tomato that is bred specifically to grow in a container, plus some basil and sage. I have those fancy water globes, so I don't have to hover over it trying to keep it watered. Just a couple of months, and I'll be popping sun-warmed cherry tomatoes into my mouth for that burst of summer flavor!

And THAT's how my garden grows!!!

Where in the World Is Kristi???

Hi! Kristi won't answer me (sad pout), so does anyone have her address? I think it's the last one I don't have right now. Thank you, kind family!