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. :)
Abundance
Thursday, February 4, 2010
Past Fear and Frustration
Posted by Shelli at 10:21 AM 5 comments
Labels: a good day, blessings, CFS, chronic fatigue, chronic illness, coping, crash, healing, health, hope, learning, life with CFS, living with CFS, pacing, relapse
Tuesday, January 26, 2010
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.
Posted by Shelli at 9:10 AM 10 comments
Labels: CFS, CFS stigma, chronic fatigue, learning, life with CFS, living with CFS, post-exertional malaise
Friday, January 22, 2010
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.
Posted by Shelli at 10:02 AM 6 comments
Labels: CFS, chronic fatigue, chronic illness, crash, learning, life with CFS, living with CFS, research, treatments
Wednesday, January 13, 2010
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!
Posted by Shelli at 11:05 AM 7 comments
Labels: CFS, chronic fatigue, chronic illness, coping, crash, exercise, goals, health, learning, life with CFS, support
Saturday, August 15, 2009
Rebel, Rebel
I know I'm dating myself here, but this was a really popular T-shirt back when I was a teen. I am relating to this little mouse today.
I had seen so much progress, I grew cocky. I was so busy planning my recovery and the many wonderful things I was going to slowly introduce back into my life that I didn't notice the creeping crash. My body warned me, it certainly did. I knew that I couldn't continue to cheat CFS like I was and get away with it. I had been lulled into a sense of security because I had rebounded so well following a few other periods of high activity. I thought I would be fine if I just took it easy again for awhile.
So, after a serious CFS beat down and tears of defeat in my husband's arms, I am humbled. I am done rebelling. I'm giving in. I am not going to fixate on the external factors that I can't change -- the responsibilities and stresses that are the nature of my life. Instead, I am going to focus on what I can change. I'm adding another rest period into my day, and I'm going to be more consistent with my yoga. I'll work on stress-reducing techniques. I'll remember how to say "no."
It never gets easy admitting that you are ill.
Posted by Shelli at 12:05 PM 7 comments
Labels: CFS, chronic fatigue, chronic illness, coping, crash, grieving, healing, learning, life with CFS, living with CFS
Monday, August 10, 2009
Exercise Experiment #1 Results
I put my theory to the test this weekend. Since my sister was in town, I took my kids swimming at my mom's house Saturday. The water was the perfect temperature! It felt good floating around a bit, but it wasn't quite enough. I decided to try just a couple of laps. I slowly crossed the pool and back -- leisurely, nothing too strenuous at all. I rested for awhile and made sure my heart rate was back to normal. I crossed the pool again; rested; then again two more times, resting in between. My body felt so good! My muscles loved the feeling of stretching and working just a little bit. It was wonderful. I came home and slept like a baby.
The next day, Sunday, my husband took all the kids to his sister's house and left me all to myself. That would be a treat on any day! But right after my excursion to my mom's it was wonderful to be able to completely relax and rest and do absolutely nothing. I felt pretty good through the afternoon, and then wham! Classic post-exertional malaise! Even after all that resting, I was exhausted. I knew it had to be because of the swimming the day before, because I obviously had done nothing to tire me all day.
In one sense, it was really good -- I've never been able to see much of a correlation between my activities and post-exertional malaise before, because I'm always busy and I often overdo things. I can never see a cause and effect relationship. This time it was crystal clear.
The bad news, of course, is that I have to be careful with any forms of exercise. (You already knew that, didn't you? I'm just a little hard-headed, I suppose.) I crave exercise, and I feel like I need to find a way to fit it into my CFS life. I'm going to keep searching for activities I can do without making things worse. I know that yoga is well-tolerated, so I'll work that back into my day again. My next experiment will be to see if I can tolerate tiny doses of aerobic activity broken up throughout the day -- maybe two minutes here, two minutes there -- until I can work up to 10 minutes a day total. (Dream big!)
I'll let you know how that goes!
Posted by Shelli at 6:32 PM 6 comments
Labels: CFS, chronic fatigue, crash, exercise, health, learning, life with CFS, living with CFS, post-exertional malaise
Monday, July 6, 2009
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.
Posted by Shelli at 10:06 AM 9 comments
Labels: CFS, chronic fatigue, chronic illness, crash, family, hope, learning, life with CFS, living with CFS, pacing, trials
Thursday, May 14, 2009
ME/CFS Awareness: 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.
Posted by Shelli at 12:49 PM 6 comments
Labels: a good day, blessings, CFS, chronic fatigue, chronic illness, coping, creativity, faith, gratitude, healing, hope, joy, learning, life with CFS, living with CFS, meaware, strength, support
Wednesday, May 13, 2009
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?
Posted by Shelli at 11:30 AM 4 comments
Labels: CFS, chronic fatigue, chronic illness, coping, diet, exercise, healing, health, learning, life with CFS, living with CFS, meaware, medication, pacing, symptoms, treatments
Thursday, April 16, 2009
Exercise Experimentation
I know that the very thought of exercising causes fear to strike the hearts of many people with CFS. However, I think that it is important not only for overall health, but it may help in CFS recovery. So, I am on a quest to discover how to fit exercise into my daily routine in a way that will NOT make me crash and lead to a post-exertional malaise.
I already do morning yoga, and I tolerate it very well. I wake up sore and achy, so I love the stretches to get the kinks out. It's a wonderful way to start my day!
I am going to add a tiny bit of aerobic exercise -- I am going to rebound (mini-trampoline) for 5 minutes. (Actually, it is a one minute warm-up, then three minute bounce, then a one minute cool-down.) I have read that it is better to try to work out in the afternoon rather than in the morning, so I am going to schedule it around my afternoon rest.
So, here's the question -- do you think it would be better to exercise before my rest, or after? Should I be well-rested before I begin, or would it be better to rest to recuperate? Does anyone have any experience with this? Or do I need to try it both ways and report my results?
Wish me luck!
Posted by Shelli at 3:49 PM 6 comments
Labels: CFS, chronic fatigue, exercise, healing, health, learning, life with CFS, living with CFS, meaware, post-exertional malaise
Wednesday, March 25, 2009
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?
Posted by Shelli at 3:28 PM 1 comments
Labels: CFS, chronic fatigue, coping, learning, life with CFS, living with CFS, pacing
Saturday, March 21, 2009
Coming Up for Air
I feel like I'm finally coming up for air! The past two months have been draining. I overdid it around my birthday ... learned a lot from that. It seemed like I wasn't bouncing back very quickly. Then the time change hit, and I just didn't adjust very well to it. Again, I learned a lot. I've been extra gentle with myself, and I think it is beginning to pay off.
What is this strange emotion I'm feeling the last two days? I think it is Hope. Do I dare say it out loud? I am hopeful that I am beginning to recover! I'm not expecting to wake up one morning and find CFS is gone, like some bad dream. I just feel like my understanding is growing and I am putting good habits and practices in place and I am moving toward getting better. I believe that I can, over time, gently push back the limits of this strange disease and find some breathing room. Some room to live.
Posted by Shelli at 2:40 PM 3 comments
Labels: CFS, chronic fatigue, dreams, healing, hope, learning, life with CFS, living with CFS
Wednesday, March 11, 2009
The Results Are In
ATTENTION SHELLI -- Read this post the next time the time changes!!!
Throwing off my schedule is WAY better than getting myself into a sleep deficit!!!
Yesterday was awful! I felt miserable all day long. I certainly tired myself out by bedtime, but it didn't help me fall asleep any better. I definitely slept hard all night; I remember waking a few times, but I went right back to sleep afterward. I didn't wake up until 9:30 am today -- that was a full 12 hours (mildly interrupted) of sleep! And, I can still feel the deficit. I'm going to need to take it easy for awhile longer, probably through the weekend.
How I wish some of you could have been a fly on my wall at 6:30 am yesterday morning to buzz in my ear, "Don't do it, Shelli! No, don't!"
On the happy side: I had such a nice day with my kids yesterday! My 8 year old son was showing me how to be an Avatar -- he is so creative, I just laughed at his antics. My 17 year old daughter found a way to get me talking about when I was a teen. My 15 year old son came in my room right before bed (my bedtime is earlier than his, how funny is that?). He was in a hilarious mood, and I really enjoyed him.
AND -- I'm on my way to the spa in a couple of minutes! Full massage, salt scrub and body wrap. Once again, thank you to the world's best husband ever!!!
Posted by Shelli at 11:11 AM 3 comments
Labels: blessings, CFS, chronic fatigue, coping, family, fun, gratitude, healing, husband, learning, motherhood, support
Tuesday, March 10, 2009
Daylight Savings TORTURE Part Deux
I'm posting so I can remember what to do the next time the time changes.
Today, I tried something different. I woke up at 6:30 am and couldn't get back to sleep. So, instead of tossing and turning and finally dozing until 10 am, I decided to just get up.
I am super drowsy and dragging all day! My rests were barely helpful, and I woke up with the infamous eye twitches that tell me it's not so good. I have a couple of errands to run this afternoon. I'm keeping dinner light, and then I'm going to bed an hour early.
I'm a scientist at heart. Here's the experiment: will toughing it out and feeling sleepy all day help me to sleep better tonight and adjust any quicker? Or would indulging in the mornings help me transition a little gentler, in spite of the chaos it creates with my schedule? Ah, we will see. We will see.
Posted by Shelli at 3:45 PM 2 comments
Labels: CFS, chronic fatigue, coping, health, learning, life with CFS, living with CFS
Friday, March 6, 2009
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.
Posted by Shelli at 2:03 PM 2 comments
Labels: CFS, chronic fatigue, crash, health, learning, life with CFS, living with CFS, pacing, post-exertional malaise, symptoms
Saturday, February 28, 2009
Friday Night Lights
My husband and I have a standing "date." Every Friday night, we watch "Friday Night Lights" together. It is such a good show! The writers have done a fantastic job making the characters real. My husband and I relate to the fun relationship between the coach and his wife. We also get a kick out of the very realistic teenagers!
One of my favorite characters is Jason Street, the star quarterback who has a spinal cord injury that changes his life. Now confined to a wheelchair, he goes through a lot of emotions and difficulties adjusting to his new circumstances. It seems to be a bit of trial and error as he starts to make sense of his new life. What inspires me most is how he still finds a way to follow his dreams, even after his entire life is turned upside down.
One of the things that I try to do is remember that everyone has their "invisible illness." Everyone I meet has some secret pain, past or present, that keeps them from the life they originally imagined. I'm not the only one who has had a curve ball thrown at them, and I certainly won't be the last! I think I'm trying to find my own way, through trial and error, to make sense of this new life and to still follow my dreams. And I think I'm doing OK.
Posted by Shelli at 7:23 PM 0 comments
Labels: blessings, CFS, chronic fatigue, chronic illness, coping, dreams, hope, inspiration, learning, life with CFS, living with CFS, strength
Monday, February 23, 2009
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.
Posted by Shelli at 12:48 PM 2 comments
Labels: CFS, chronic fatigue, healing, health, hope, learning, life with CFS, living with CFS, pacing, treatments
Thursday, February 12, 2009
A Gift from My Sister
I don't often talk about my faith on this blog, even though it is a huge part of my life and gives me the ability to cope with CFS. I worry that people will focus on this difference and be less inclined to embrace the similarities we share. But, today, I found a wonderful post on my sister's blog that I feel transcends religion and I think I just have to share it with you. The title is "Boulders and Pebbles."
"In church on Sunday, the sacrament meeting topic was adversity. I had several thoughts go through my mind as I struggled to listen. This is not an easy thing since my kids are wild animals. Anyway, as they spoke I thought of one of my favorite Scriptures. It is 2 Nephi 2:25, in the Book of Mormon. It says that "men are, that they might have joy." For years, I thought that it meant that our purpose on earth was to be happy. Then a while ago I read it in context with the whole chapter and I realized that our purpose was to have opposition in all things. That in order to have joy, we must have misery. It really struck me that our sufferings are a show of love, as much as our blessings. They both are there to help us feel joy more fully and more importantly, to learn and become more like our Father in Heaven.
"Bro. Chong, the last speaker, had a great object lesson to go with the topic. He said that when you hold a pebble right up in front of your eye, it looks like a boulder. As you pull it back, it comes into perspective and you can see it for the small pebble it is. I realized that so many of my trials in life have been like that. As I am going through the trials, they seem overwhelming and insurmountable. Then, looking back, after they are over, they seem like they were simply another bump in life. Usually a bump to help me prepare for the next bump. Unfortunately, like the pebble, it takes distance to usually get the whole perspective. Next time I am in a rough spot, I am going to try and remember this. I will keep telling myself, this is just a pebble! Maybe when it is all said and done, I will make a mosaic."
This is my goal -- to take the best (if not the easiest and most pleasant) parts of my life and create something beautiful and amazing.
Posted by Shelli at 10:51 AM 3 comments
Labels: blessings, CFS, faith, goals, gratitude, inspiration, joy, learning, life with CFS, living with CFS, strength, trials
Tuesday, December 23, 2008
More Like a Thud than a Crash
Let's call it the year of learning about Christmas. Let's call it trial and error and error and error. Let's promise ourselves that next year will be better ... and we'll keep this post in cyberspace for reference to make sure that happens.
In review: Parade -- not necessary, certainly not worth it. It lasted way too long and my kids only enjoyed the floats that were throwing candy. Selfishness at the beginning of Christmas is not the way to start out.
Decorating -- worth it. Especially when I let the kids take over. For the first time, I didn't fuss too much over where the snow village would be or where to make our little Santa's village. And the kids easily did as well as I would have.
Church Christmas party -- worth it! It was short and simple and delicious with a true Christmas spirit about it.
Kids' Christmas choir concert -- I think I'll let Rom do this one next time. The girls did a great job, but the choir director is crazy! It was way too long -- over an hour and a half -- and it was on backless benches. It killed me.
Cookies -- all right. This is a tough one! This tradition is beloved by everyone who gets our fabulous Christmas cookies. My family loves the look on their faces when we show up at the door. The only problem? I was the little red hen this year -- "Who wants to help bake the cookies?" "Not I" said the children in unison. I did too much of the work. Next year, I can start in November and freeze cookies, and I can give the children better assignments. I don't want to have to sit out the fun part of delivering next time because I'm too wiped out.
Tree -- I threatened to buy a fake tree next year. This was very disappointing to me. I need to find a way to start the outing off on the right foot. If I can't do that, Rom and I will get it ourselves next year.
Children's Christmas program -- worth it! But only if it isn't sandwiched between other activities. Then I'll have to let Rom handle it.
Nightly Christmas stories -- worth it, but we may need to expand our selection. The kids are getting bored with the same ones every year.
Caroling -- this was a new one. It's not a tradition, so it can go, if I'm not up to it. I love the smiles on people's faces, though, when we show up. We'll see.
And through it all, I need to focus on the simple symbols of Christmas that bring joy to my heart and remind me what this is all about. I lost that this year, and I don't want it to happen again.
Posted by Shelli at 12:04 PM 0 comments
Labels: Christmas, chronic fatigue, crash, learning, living with CFS