Mission 2011: Flexibility

Image by khalid almasoud via Flickr
I'm not sure why, but in my mind the words "routine" and "flexibility" seem to be at odds.

I mean, if you have a routine and you are doing the same things on a daily, weekly or monthly basis, where exactly does flexibility fit into the picture? Wouldn't it make more sense to abandon a set routine if your life requires a high degree of flexibility?

After all, it's hard for me to get anything done consistently day to day when my energy level can vary greatly minute to minute, hour to hour, day to day.

What really brought this point home to me this week was my follow-up appointment Tuesday with my hepatologist.

When he asked me how I was doing, I mentioned that I was feeling more fatigued and having more problems managing my diabetes. I almost said, "I'll make you a bet it's because my Hepatitis C viral load has gone up again." Sure enough, when he shared with me the results of my blood work drawn a few weeks earlier, I've learned that my viral load had gone from 11 million to 24 million in a little over 12 months.

I was floored.

After I got over my shock, which took a few hours, I realize this was the explanation for why it has been so much more difficult for me to get things done over the past several months. It also explains why I have been more prone to fatigue flareups when I try to live outside my energy envelope. I then really connected with the fact that my experience of chronic illness is an ever changing state of being which requires a large amount of flexibility on my part to change and adapt to my highly variable health status.

It makes me wonder if focusing on a routine is really relevant for me.

After sitting with this thought for a few days, I recognize that limiting how much I organize my day using routine is perhaps the best approach. The routines I talked about last week, which involve my bed time and awakening time, do work and I will continue to focus on utilizing and refining them. They truly do help me get my day off to a good start and help me transition into sleep, an area that has been profoundly affected by my chronic illnesses.

But I need to have the flexibility to arrange the rest of my day based on my pain and fatigue levels. To put this into the frame of a routine, I guess I would say that, in general, I have on average two to four hours during the day in which I can engage in activities that require my energy, attention and physical abilities. The rest of my day needs to be spent reclined on the couch engaged in passive pursuits and resting.

As I read this back to myself, I see that I'm building my case for trying to treat my Hepatitis C infection once again. And I did talk to my doctor on Tuesday about the new antiviral drugs that were recently approved to treat Hepatitis C. At my appointment, we decided to put off the decision to start treatment until I see him again in January 2012. Hopefully, by that time, he will have gained more experience prescribing these new medications, which will allow him to make a better recommendation to me about which course of treatment might work better. This gives me six months to get my head into the right place to prepare to do battle again.

I want to end this post by acknowledging that many of you may be in the exact same position I am with the illnesses you live with on a daily basis. I remember asking the staff of the chronic pain and fibromyalgia rehab program I attended back in 2005 what the prognosis for fibromyalgia was. I had to push because the staff was a little reluctant to share that information with me. What I learned is that at any given time, one third of people with fibromyalgia are getting better, one third are staying the same and one third are getting worse. While I'm sure the staff wanted me to focus on doing everything I could to get better, my reality has been staying the same or getting worse.

Understanding and accepting the reality of how my illnesses work really puts things into perspective for me. It helps me not feel so bad when, despite all my self-care efforts, I can see no measurable improvement in my symptoms. After all, it's hard to obtain improvement when your illness is getting worse.

A lack of progress does not mean I should abandon my self-care practices. It just means that, at the moment, more rest, pacing and patience are needed.

Related articles

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• Mission 2011: A Simple Routine (ohmyachesandpains.info)
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Mission 2011: A Simple Routine

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I've given it some thought and I've come to an understanding about my aversion to the word routine. In my mind, having a routine and getting things done are two concepts that are intertwined. Unfortunately for me, getting things done, whether on a daily, weekly or monthly basis, is a sketchy proposition at best. If you live with chronic illness like I do, you know what I mean.

My Biggest Challenge

I've been disabled by chronic illness for almost 7 years now and the thing I find the hardest to accept is the profound way my disability prevents me from doing.

I mean sure, I would expect my disability to interfere with getting big things done that require a lot of energy and time, like yardwork or spring cleaning, a day full of shopping or cooking. What I did not expect were all of the hundreds of little ways my disability interferes with me accomplishing the small things. I often feel frustrated at my inability to be productive. I have learned to recognize this as old expectations for my previously healthy body and consciously dismiss these expectations as unreasonable for my current state of being,

While trying to be kind to myself, I do acknowledge that I completely and utterly fall short in my ability to do compared to healthy people. I sometimes wonder how healthy people judge me, especially those without knowledge of my chronic illnesses and disability. Although maybe that judgment is coming from that small bit of myself that desperately wants to be healthy and normal once again.

A Plan for Success

Using this new insight, I've decided I need a simple routine, a routine that focuses on the basic essentials I need to accomplish each day. At this point in my life, it needs to be doable as well as specific and focused. My simple routine needs to set me up for success, so I can feel good about accomplishing what I can, gracefully accept what I cannot and have clarity about what tasks and projects belong in each category.

With this new frame of reference, it was easy to see that my routine needs to focus on two times a day: when I wake up and when I go to bed.

When I Wake Up

There are a cluster of items I need to focus on after I get out of bed that will help get my day started in the right direction. While this may look a little bit different each and every day, the basic tasks remain the same: get up, get dressed, let the dogs out, eat breakfast and then rest. This also happens to coincide with a time of day when I need to take my medications.

After mulling over several different ideas about how to make sure taking my diabetes medication is part of this wakeup routine, I've settled on combining it with testing my morning blood sugar, which is something I need to do every morning as well. That way, if I can't remember whether I took my medication or not, I can simply look at my glucometer to see if there is a blood glucose reading for the morning. I'm hoping that focusing on these two tasks together will ensure they both get done daily.

When I Go to Bed

This is the second cluster of items I need to focus on daily. This includes taking several medications before bedtime, as well as cleaning my CPAP machine before its nightly use. This is also the time designated for showering, since doing this in the morning wipes me out for the entire day.

I'm adding a regular "brain dump" here so I can let go of the things rattling around in my brain before I go to sleep. This will also lend itself to reviewing the upcoming day so I can get prepared mentally and physically for any appointments or special events that might be happening. Another integral part of this time of day is winding down and enjoy activities that are quiet, peaceful and sleep promoting.

The Time In Between

As for the rest of the day, I'll live by one guiding principle. I will check in with myself, assess my energy level and choose my activities accordingly. My brain dumps will be used for ideas about the things I'd like to focus my attention on and I will see if those things fit with my energy level each day. And I promise to go easy on myself if I'm low on energy and unable to accomplish much that day, as well as exercise caution on the days when I have more energy to make sure I don't over do it and wind up flaring myself up.

Over the next seven days I'll be paying closer attention to how this simple routine works in action and I'll report my findings back to you in my next Mission 2011 post.


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Mission 2011: Getting Back On Schedule

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Welcome to a new month of Mission 2011 posts.

This month I want to focus on the related topics of schedules and routines, mostly because my recent increase in life stressors has almost completely and totally thrown off my own habits. Since things have finally started to calm down, it's time to get back in my groove.

When I initially set out my plans for my year-long series of posts for Mission 2011, I set this goal:

Making and sticking to a schedule of rest breaks throughout the day.

Now that is still a great goal, but I have recently realized I need to work on so much more than rest breaks when I comes to my schedule.

For example. the other day I could not remember if I had taken my once-a-day diabetes medication. You would think that since it is an injectable, I would remember poking myself. I literally stood in front of my diabetes supplies for several minutes racking my brain for recall. In the end, I decided against a possible second injection for fear that I might take too much medication and have to deal with the consequences.

Not a good way to start my day.

Back in 2009 I wrote a whole month-long series of post about developing a daily routine. One of the earlier posts in that series was Can Routine Help Me Manage My Fibromyalgia? Two years later and it seems I am in need of a refresher course on this topic.

The good news for both you and me is that can take that refresher course together by clicking this link: routine.

In the meantime, I did one thing this week which I hope will get me back on track. I call it a brain dump. I recognized I was getting bogged down by a bunch of things rolling around in my brain. So I took the time, a few minutes each day, to write down all the things floating around in there.

I've found that a To Do list and/or scheduling tasks with due date makes me feel pressured, overwhelmed and unproductive. So this brain dump was more about creating a prompt I can reference to help get me focused when I have the energy to accomplish something.

When using this prompt, I emphasizing flexibility and breaking things down into smaller steps, which works so much better with my fluctuating pain and fatigue levels. Sure, there are things in my life that have specific due dates, but I've learned that the majority of things aren't so time and date dependent after all.

I have to say that getting those things out of my head has really helped me get clearer and more focused. I am also being diligent about adding to the list whenever I hear myself talking about other things that need my attention. Yes, the list is long, so I hide it away when I am feeling tired, overwhelmed and not up to taking on tasks.

One thing I have come to accept is that not all the things on that list are going to get done...and that is just going to have to be OK.

I'll be back next week to write more about this subject. At the very least, by the end of June, I will schedule those regular rest breaks during each day and figure out a daily routine that ensures I take my diabetes medication every day without fail.

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All Flared Up, But Feeling Fine

Image via WikipediaLet me get right to the point here. You read the title of this post and ask yourself (among other things), "How can she feel fine if she is all flared up?"

For starters, let me say that under normal circumstances, I do not experience regular, moderate to severe flares of my fibromyalgia symptoms. Why? Because I have learned to stay in my energy envelope. It took me five years to learn how to do this, but I know I have mastery of this concept now. How do I know? Because I went WAY out of my energy envelope several days last week and got severely flared up.

So while physically I don't feel so great, psychologically I feel O.K. because I have proof that the things I usually do on a daily basis to manage my fibromyalgia symptoms really work. I also feel good because I know if I can get back to this routine during and after my flare-up, I can prevent this from happening again.

So, do you want to know some of my secrets?

1. Using an assessment scale, I determine my level of functioning. So right now, I am about a 20 out of 100, so I need to scale back the amount of activity that worsens my pain and fatigue to around 1 hour per day.
2. I acknowledge that feeling good is dangerous and can lead to me overestimating my ability to engage in activities. So I remind myself of the Golden Rule of Chronic Illness:If I push, I will pay, If I pace, I can play.
3. Next I plan out my activities for the day using the 15 Minute Rule. I schedule 15 minutes of an activity, then I stop to assess. If I feel more pain or fatigue, I stop and rest for 15 minutes. If I feel OK, I continue on for another 15 minutes. Wearing a timer around my neck helps me stick to my schedule.
4. I recognize that I need to modify how I do things to make activities more fibro-friendly. Among other strategies, I sit down while doing activities and use aids like a Pik Stik reacher or the shopping scooter at the grocery store.
5. I know what times of day are best for certain activities and I plan accordingly, sticking to a daily routine. For example, my hands often are numb and painful when I get out of bed, so I avoid using my hands a lot for several hours following awakening.
   

It is the knowledge that I have broken the push-crash cycle and can manage my fibromyalgia symptoms well enough to avoid major flare-ups that helps me feel fine despite more pain and fatigue right now.

Tomorrow I'll write more about how I got into my current predicament and the lessons I learned over the past week.

Fulfillment Today, Fuel for Tomorrow

Image by diebmx via Flickr

Welcome back to Fulfillment Fridays! I am so excited that I have connected my list of six weekly priorities to this weekly blog post, because it means that I get to feel good about getting things done and show you that even a ChronicBabe can accomplish goals and targets; yes I can! This also aligns with my new goal to celebrate what has been done, instead of always looking at the multitude of things that are waiting to be done.

I believe that focusing on success creates momentum for a person to continue on and achieve even more success. Success is a solid foundation you can build on. I mean, how people can build their lives up by focusing on their failures? While failures can teach us lessons and point us in a better direction for next time, it the successes that help us build the life we want to live. Hopefully, there are more successes to build with than failures to learn from at the end of each week.

Building my best life despite chronic illness is what Fulfillment Fridays are all about.

Here are my accomplishments for the week:

1. Went for my annual mammogram on Tuesday.
2. Saw a new rheumatologist and didn't feel upset when he treated the appointment as a consultation only and clearly didn't want to take me on as an ongoing patient.
3. Reinvented the concept of a daily list of six priorities into a fibro-friendly weekly list of six priorities.
4. Completed another week of daily blog posts.
5. Avoided symptom flare-ups this week by focusing on extra rest.
6. Caught up on some of my emails (which is a work-in-progress).
   
7. Watered my container garden on a Monday and Thursday schedule.
8. Completed my activity logs so I can continue on with my Workwell Foundation exercise consultation.
9. Pondered ways to motivate myself to get the household cleaning and chores completed and make them more fibro-friendly (which is a work-in-progress). Thanks to my online friend Lisa who sent this advice to me today and shared that she is struggling with the same dilemma,

   "Self-discipline is remembering what you REALLY want. When you can consistently remind yourself in loving ways what you REALLY want, you will fulfill your dreams." ~The FlyLady
   

10. Took a chance and submitted my blog for the August 12th edition of the Patients for a Moment blog carnival.
11. Responded to the ChronicBabe call for a writer living with fibromyalgia for a new project being developed there. I mentioned by blog as my writing sample ... I hope Jenni was impressed and I am considered for the gig!
    

Feeling good about my successes, I am fueled and ready to set goals and targets on Saturday for another week of tomorrows.

Tomorrow I Am Going to Pause

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Sometimes my mantra is, "I don't feel good." When I hear myself saying this I try to counteract it with more positive self-talk like "I am good, I'm O.K., I am fine."

My latest reason not to feel good? I think I ate something this evening that didn't agree with me and now I have a tummy ache. Since I ate takeout food, I am worried that I'm developed some food borne related illness. I don't have the cast iron stomach my husband does...

If I get sick, tomorrow will automatically be a rest day, a bed day. With fingers crossed and sipping ginger tea, I am hoping this doesn't happen. I'm working on combating it with mind over matter.

But I digress...

Even if I don't find myself in a forced "time out" from the stomach flu, tomorrow I am going to pause. I need to give some thought to two things:

1. It feels strange writing these posts in the future tense. I am wondering if I need to add an addendum to each post to let you know if I have actually completed, experienced and/or embarked on what I have set out and planned to do. I mean, it's great to talk about tomorrow in the abstract, but as I wear your shoes I am wondering, "What happened? Did she do it? What was the outcome?" After all, to paraphrase the poet Robert Burns, "The best laid plans of mice and men oft go awry."
   
2. I need to explore ways to get myself motivated to face some challenges on my To Do list: housework and chores. The bottom line is I need to figure out how to bribe myself to get these two things done. Both are inherently not fun, not rewarding in the doing and require some ingenuity to make them fibro-friendly and yet I can see a benefit to doing them: a clean house and tasks completed around the house. In an ideal world, I'd hire someone to help me get these things done. Unfortunately, the budget is tight right now, so outside help isn't the solution. So I wonder how I can get up and going and maintain the momentum for getting the chores and housework done in the long haul. Any ideas?

So tomorrow I am going to pause ... and ponder, plan, project and append.

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My Routine: 31 Days Later, Do I Have a Routine?

Image by Kindreds Page via Flickr

There is a story I know a snippet of, about one of the founders of Hewlett-Packard. Either William Hewlett or David Packard was asked how to estimate how long a project would take to complete. He replied, " Take the time you think it will take and multiply it by three."

I've found that when you live with chronic illness as I do, the answer to that question is more like, "Take your estimate and multiply it by at least 10."

I don't know if I can say with confidence that I now have a routine, but I know that I am well on my way to developing one. I feel better about the concept, having aired out all my negative perceptions at the beginning of the month (Routine Defined, Or Why I Cringe When I Hear The Word). I then jumped into the task and found that I have some of the pieces already together (What have I learned so far about minimizing my symptoms? - Part 2).

I know that I need to keep it simple---simple is sufficient, expect the unexpected, live harmoniously with my chronically ill body and schedule days of rest. I've embraced my inner turtle and can be heard chanting the turtle motto: I'm not lazy, I'm just pacing myself! I even had an A-ha moment; aren't you proud of me, Oprah?

I'm going to end this month of blogging on the theme of routine by sharing with you my revised My Personal Rules and Not To Do lists. In the spirit of KISSIS, I am distilling each list into six easy to remember items.

My Personal Rules:

1. The Golden Rule of Chronic Illness: If I pace, I can play. If I push, I will pay.
2. Each day, keep a running tally of activity time. Using the CFS/Fibromyalgia Rating Scale, I know I can be active 2 to 4 hours a day
   
3. 15 minute rule: When active, stop every 15 minutes to check in. Stop if tired. Continue on for another 15 minutes if feeling OK. Then stop and repeat process.
4. Stay inside my energy envelope---through pacing, planning, resting, checking in and saying no.
   
5. Do something fun every day.
6. At the first sign of flare-up, rest, rest rest!

My "Not To Do" List

Do not:

1. Stand, when I can sit.
2. Walk more than a few minutes, when I can use a scooter (either my travel scooter or the one provided at the store.)
3. Shop alone; instead bring someone along to help me.
4. Shop in-person; instead, when possible, shop online.
5. Leave the house more than once a day (i.e. no more than one outing/appointment/engagement a day.)
6. Schedule more than 3 or 4 outings/appointments/engagements outside the house in a week.
   

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My Routine: Tools That Help Me Stay in the Energy Envelope

Image by oneblackbird via Flickr

I've mentioned in my posts on my routine this month of July 2009 some tools that help me conserve my energy and stay in my energy envelope.

Today I wanted to share with you some pictures of my favorite tools as well as a hand dandy carousel link to Amazon.com where you can purchase these tool (or ones just like them) for yourself.

TIMERS:

The best way to make sure I stick to the 15 minute rule is by using a timer. I have two favorites: a small, portable timer on a cord that I wear when I go outside to container garden and my stop sign design Time Tracker that gives me a sound and visual warning when my 15 minutes are coming up.



BENCHES, CHAIRS, SCOOTERS AND STOOLS:

The position that works best for me? Sitting. The next best thing: standing while resting one foot on a stool. Hence my collection of benches, chairs and stools: the bench I use while showering, the stool I rest my foot on next to the bathroom sink, the garden seat I made using a 5 gallon paint container, a contractor's seat and a gel kneeling cushion, the chair I sit on while my dogs do their thing outside and the travel scooter I use to walk my dogs and go shopping.




PERSONAL CARE:

I love Batiste Dry Shampoo. It makes it possible to wash my hair every other day, which keeps my "workouts in the shower" to a manageable number each week.




By the way, shopping online is a huge energy-saver for me personally. I discovered the $79 Amazon Prime membership that gives me two day shipping on all my purchases, regardless of amount, for an entire year. Plus at Amazon.com, there is no sale tax, which helps me save money and stay within my budget too.

Happy shopping!




Amazon Prime Membership

Image: I'm not lazy ... I'm pacing myself.

Here is the Post-It note that inspired my blog post from Tuesday: My Routine: I'm Not Lazy, I'm Just Pacing Myself.

My Routine: I Just Want to Have Fun!

Image via Wikipedia

I became a young adult in the 80's and fell in love with 80's music. I remember going to dance clubs in Hollywood when I was an undergraduate in college and dancing the night away ... and I know they played the 1983 Cyndi Lauper song Girls Just Want to Have Fun.

My days of clubbing in Hollywood are long gone, but my pursuit of fun remains. In fact, fun is one of the most important tools in my bag of tricks for dealing with my life with chronic illness. Where pills, patches, injections and procedures have failed to bring relief, fun is an escape to somewhere better, where the focus temporarily shifts away from my chronic pain and fatigue. Fun is a great distraction.

Distraction is my number one coping mechanism. Fibro-friendly activities like reading a book, watching a movie on TV, listening to music, writing a blog post, gardening in my container garden, spending time with my pets and arts and crafts projects redirect my focus onto something other than the symptoms of my illnesses. Fun is a respite, fun is rejuvenating, fun feels good. Fun is a reminder that there are other things going on, both internally and externally, besides my fibromyalgia, dysautonomia and chronic fatigue.

I believe that my pursuit of fun, despite my chronic illness, is what keeps me from feeling discouraged, defeated and dismal. Being in pain and fatigue every waking moment can really wear you down; fun brings me back up. On the surface, it may seem impossible to have fun when you constantly don't feel good. Quite the contrary, I've found that fun is exactly the prescription that has worked for me, that has helped me feel good about life once again and that has built my strength to cope with the unpleasant aspects of my illnesses.

I've learned that all pain and fatigue and no fun makes me a very unhappy person. Since I've accepted the reality that my chronic illness is continuing on indefinitely, unhappy is NOT how I want to live the rest of my life. So this Chronic Babe will continue to build a list of fibro-friendly activities to do for fun, 'cause Chronic Babes just want to have fun, too!

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My Routine: I'm Not Lazy, I'm Just Pacing Myself

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Some days, I am slower than a herd of turtles stampeding through peanut butter. ~Unknown

A friend of mine who I correspond with on Facebook recently posed a question to her friends: If you could have a super power, what would it be?

Remember Samantha Stevens from Bewitched? Remember how she used to think of something, twitch her nose and, presto, it would appear or happen? For lack of a better label, let's call this Think-Blink-Done! That's the super power I want!

See, the pace of my life with chronic illness is slow. I do not have any gears higher than 2nd---a stick-shift car reference. (By the way, I can no longer physically handle driving a manual transmission car any more.) What works for me is the 15 minute rule: I am active for 15 minutes and then I stop. Depending on the activity, I evaluate if I can go another 15 minutes and if the answer is yes, I proceed. If the answer is no, or the activity is too strenuous for more than 15 minutes, I rest. Throughout the day, each and every day, I pace myself 15 minutes at a time.

Another important part of pacing is to alternate activities. I rotate between physical, mental, social and passive endeavors. It is obvious that physical activities are both tiring and prone to exacerbating my chronic pain and chronic fatigue; what I learned is that using my mind, being with others in-person or even on the phone and passive pursuits like watching TV or reading a book can be just as tiring when you have limited energy to exert in a day. Keeping a balance between the types of undertakings I engage in during the day helps me not overdo it. If I expend my energy wisely, I find I can stretch it across the day and into the evening and engage in the things I want and need to do.

Both of these strategies keep me in the Energy Envelope, that is, only expending the energy I have. It's all part of the Golden Rule of Chronic Illness:

If I pace, I can play. If I push, I will pay.

I want to play, so I have learned to accept my life at a turtle's speed. I embrace my inner turtle! The turtle motto is: I'm not lazy, I'm just pacing myself.

My Routine: Working Out In the Shower

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I remember a time, five years ago, when I used to roll out of bed in the morning and right into the shower without giving it a second thought. Then again, I used to do a lot of things five years ago without giving them a second thought. The point is that today, chronic illness makes me stop and reevaluate everything I do or want to do in terms of how much energy the activity requires and how much energy I have to expend.
I've discovered that one of the places that takes a lot of my energy is the bathroom.
One of the great things I learned through my participation in the Cedars Sinai Chronic Pain and Fibromyalgia Program was the art of making activities "fibro-friendly." I can tell you with certainty that the bathroom is not a fibro-friendly place. The culprit is the standing involved in most bathroom activities.
So one of the first things I changed was how I take a shower, or rather, the position in which I shower: sitting. For years now I have been taking my showers seated on a shower bench. When I get out of the shower, I sit down to dry off. Drying my hair with a blow dryer is a thing of the past too; by necessity my hairstyle has been wash and air dry for years now. Time in front of the sink brushing my teeth or washing my face has been modified by resting one foot on a stool while standing. Putting on makeup, the standing in front of the mirror and the use of my hands in holding the various tools of the task, is now limited to special occassions only; it is too painful a task to do on a daily basis.
Wow! Did I just call putting on makeup a task? How things have changed for me in 5 years...
The bottom line is taking a shower is a real workout now. In addition to modifying how I take a shower, I also follow these 3 rules: I only take a shower at night, I only take warm water showers and I only take a shower every other day. For

Image by BitchBuzz via Flickr

reasons I don't fully understand, if I take a shower in the morning I am left with no energy for the rest of the day. If I take my shower at night, I have just enough energy afterwards to get myself to bed, which works out much better. Hot showers leave me too exhausted and almost unable to move, so I take showers with only warm or tepid water. While I would prefer to shower every day, much like working out at the gym for healthy people, showering is best done every other day for me to avoid flare-ups of pain, fatigue and soreness. Thankfully I have discovered Batiste Dry Shampoo which helps my hair look fresh between showers.
Life with chronic illness is complicated, but at least I manage to stay clean while living it!

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My Routine: Starting With a Clean Slate

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Today my post is just a quick note to let you all know I am still doing O.K. after my hard reset of my sleep routine. Three nights have passed and I'm getting to bed and asleep when it is dark. This is probably not unusual for most of you, but for a delayed phase sleep disordered person like me this is a BIG change and accomplishment .

So this puts a twist on my routine. All the activities that I did in the wee hours of the morning need to be shifted into the newly available time slots of my newly more humanized schedule. So I need to

Image by kuddlyteddybear2004 via Flickr

literally go back to the clean slate and reconstruct the ebb and flow of my day. I have my work cut out for me. It's a brave new world full of sunshine.

I am also struck once again by how the NaBloPoMo July theme of routine seems to perfectly fit with what I am doing right now. I am embracing the challenge of routine and making changes in my life! Looks like I WILL have a new routine by July 31st.

My Routine: Hitting the Reset Button on Sleep

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So it's 8 am on Thursday morning and I still haven't fallen asleep. Which is not as atypical for me as it might be for you. I am thinking about my delayed phase sleep disorder and how trying to go to bed a half an hour early over a series of days and weeks just doesn't seem like it is working. So I decide to take the drastic approach.

I didn't go to bed.

I basically stayed awake for 33 hours straight.

I never pulled all nighters in college; I just couldn't hack it. Remember, back in college, prior to chronic illness, I had a double major---kinesiology and sleep! O.K., I'm just kidding ... or not.

I did surpri

Image by Articulate Matter via Flickr

singly well. I kind of "hit the wall" around 7 PM on Thursday and felt not so good. I craved sleep when bedtime arrived and I jumped into bed right away. Amazingly, I fell asleep rather easily. I woke up a few times---1am, 2am and 3am---but then settled in a longer stretch of sleep. I awoke when my alarm went off at 9:30 am, in time to take the dogs to the groomers for their 10 am appointment.

I amazed my husband and friend Cyndie with my radical approach to resetting my circadian clock. They both commented at dinner tonight that they were surprised it worked after just one day. To be honest, I'm a little surprised too, but also grateful. It will be nice to get back on a more human schedule instead of keeping vampire hours.

Now if only I didn't need to sleep 9 to 10 hours a night...

DISCLAIMER: If you think you have delayed phase sleep disorder, you need to talk to your doctor about personalized strategies to deal with your particular situation. I am not a medical professional.

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My Routine: Trying to Get a Good Night's Sleep

Image via Wikipedia

To die, to sleep;
To sleep: perchance to dream:
ay, there's the rub...

~from Hamlet by William Shakespeare


I used to love to sleep, put my head on my pillow each night, drift off to dreamland and enjoy a restful slumber. I loved sleeping in on the weekends. I had no problems going to sleep and getting a good 8 hours in every night. Insomnia was a rare occurrence. Dreams were my refuge from the world...

Not any more.

Chronic illness changed my life in so many ways, and one surprise was the development of not just one, but multiple sleep disorders! Now I have problems falling asleep, staying asleep and being a light sleeper. I have gone from needing 8 hours of sleep to 9 to 10 hours a night. I was finally sent for a sleep stu

Image by babblingdweeb via Flickr

dy in 2006 and was diagnosed with sleep apnea and problems getting enough deep, stage 4, sleep. I also have something called delayed phase sleep disorder, where my body clock is set incorrectly for time zone I am living in: check out the widget in my blog sidebar to the right and you can see what I mean.

I treat the sleep apnea by using a CPAP machine. The CPAP fixed the sleep apnea, but the other sleep problems persisted. When I was diagnosed with dysautonomia and started treating it with a beta blocker in 2007, my pounding heart stopped waking me up in the middle of the night. But I still had problems so I was prescribed a medication to help me get more deep sleep.

My current sleep doctor

Image via Wikipedia

has suggested a few other medications to try too. He also recommended trying gradually going to bed 30 minutes early each night over a period of time to get back into a schedule that fits the Pacific Time Zone. He also mentioned that some people just stay up 24+ hours and reset their clock by not going to sleep one day and waiting for the next night to go to be at a more appropriate time.

So guess what I did Thursday?

You'll find the answer in my next post...

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My Routine: Take a Deep Breath and Relax

Image by Roslan Tangah (aka Rasso) via Flickr

Today has been one strange day. I am just too tired to go into the details right now ... suffice it to say I am ready to go to bed, sleep and start again tomorrow. During the day, when I hit some rough patches, I remembered to stop and just breath. Here is a 4 1/2 minute long Breathing Relaxation Exercise video to help you remember to take a deep breath and relax too. Enjoy!

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My Routine: Spending Time in the Garden

Image by yuankuei via Flickr

Selena, Selena, so fibro-friendly,
How does your garden grow?
With radish, pepper, tomato
And green bean all in a row.

One of the good things to come out of the six weeks I spent at the Cedars-Sinai Chronic Pain and Fibromyalgia Program in 2007 is my container garden. I was challenged to turn my interest in gardening into a fibro-friendly activity and gardening in containers fit the bill. I can tend my garden from a seated position, with minimum reaching, lifting, digging or bending. I have also outfitted my containers with a soaker hose system; I purchased the parts for the system I created on eBay (a fibro-friendly way to shop.) My watering set-up is automated, attached to a DIG Irrigation Products battery operated hose water controller which is programmable for multiple days of the week and watering duration.

Unfortunately, my gardening routine seems to get a late start each year; seeds that can be started between April and June inevitably are planted in June. It seems that Spring is often a time for flare-ups, infections and calamities---last year I broke my foot in March, this year I caught the flu and developed a persistent sinus infection starting at the end of April and lasting a whole month. So if I were to change one or two things with my garden routine, it would be to figure out a way to better survive Spring physically so I can start planting earlier.

My Lightweight Barrel Containers
-Established in 2007, My First Year of Container Gardening

(click on any picture to enlarge)



The BIG Container from Naturalyards
-circa 2008 and Built to Last 30 Years!

(click on any picture to enlarge)




My garden wish list includes another large container from Naturalyards. I was able to order an exact size that perfectly fit the space I designated for the container. This container was wonderfully easy to put together---tool free and like stacking Legos. Robert helped me put my Naturalyards container together in about 1/2 hour and it will last for a long, long time thanks to the Port Orford cedar used in its construction. I highly recommend Naturalyards: their customer service was excellent and shipping via FedEx is included in the price of the container.

Surprisingly, time in the garden has turned me into somewhat of a novice bird watcher as well. Among the birds I have seen: the black Phoebe, the wrentit, the red-winged blackbird, the red-tailed hawk, Anna's hummingbird, Stellar's Jay, the lesser goldfinch and our local flock of green parrots.

As you can tell from my impassioned description, I wholly enjoy my garden routine.

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