Coping Consciously with Confidence

Chronic Fatigue Syndrome symptoms ebb and flow like the tide except with far less predictability or consistency. How do you cope with a constant changing symptom list that varies in severity by the hour, day, week, month or year? Today, I am concentrating on my reliable coping mechanisms. These coping techniques to handle the invisible disease that CFS is, also help me handle the stresses I face in my life, working and living a life in 2015, never mind with CFS.

Hobbies, Interests and More

My techniques vary in only way, whether it’s a physical activity or if it is about observing or listening. Everyone’s list will be different, plus the way the individual technique is utilized could alter. Music is one of my coping mechanisms; this is all about listening to music with a little side brain activity of learning about the artist or the songwriting. Another person may play guitar, write music or sing (none of which has not happened in my world so far!). These are the most common ways I’ve found to cope with CFS and life in general:

• Music (listening to music, learning about the artists, how songs were written, etc.).
• Movies (re-watching favorite movies ranging from romantic comedies, classic movies (Hitchcock especially), to a random horror – ultimate favorites are an inspirational true story like Moneyball [official trailer], Rudy [official trailer] or a great mystery story like Along Came a Spider [official trailer]).
• Reading (when I cannot read either due to my eyes bothering me, falling asleep too fast or too busy doing other things, I listen to audio books).
• Crafts: knitting, crocheting, counted cross-stitch with a little of adult coloring books, drawing, card-making.
• Visiting with friends/family: regular FaceTime chats with my Mom plus on-going conversations with those closest to me,

Stampin’ Up cards

Crocheted Blanket

Coping with Confidence

These techniques are simple, easy and inexpensive. When I was very sick, I listened to music and learned inspiring stories of singers who overcame the odds to follow their dreams and reach success. This helped me immensely to know others struggles, while different, they persisted until they met their goals. Today, I still use music to de-stress. I almost always have music on in the car, cranking the volume for those fun, dance-able songs, singing along (out of tune and not caring!) to get my groove on and forget for three minutes about anything else but this moment.

Simple techniques that can be used whether you’re in bed 18 hours a day, working part-time or even cooking supper for your family and running out of time and energy can make all the difference in the world. This can alter whether you cry yourself to sleep, yell at your spouse or give your kids a hug good night and laugh at their silly jokes.

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What makes coping with Chronic Fatigue Syndrome the most difficult for you?

How do you handle the various symptoms and the different degrees the symptoms appear/fade? 

If you are a friend or family member of a person living with CFS, how do you cope?

 

Endometriosis and Chronic Fatigue Syndrome

Right now, I’m napping on a daily basis and struggling with newly diagnosed, Endometriosis. I finally have a real reason for the pelvic pain I’ve experienced for years. I thought it was just part of getting older; I’m very glad to have a gynecologist to finally explore this and discover the source of my pain.

I will be having surgery in early December; exact date will be determined later. I admit that with so much happening this year, I’m struggling with my Chronic Fatigue Syndrome symptoms. It’s mostly my energy that’s lacking right now. I still work every day; but need a nap every day when I get home/finish if I work from home and the weekends spent at home include 2 – 3 short naps each day (usually 15 – 30 minutes).

I’m working on improving these symptoms the way I know works for me:

• Cut out refined sugar. No desert!
• Rest when I need to. Sometimes that means sitting more than I prefer but in the long run I’ll get back to my earlier energy levels.
• Exercise lightly (jog/walk for 30 – 45 minutes 2 – 3 times a week).
• Take care of my brain; audio books to stimulate me, detailed coloring books to keep my brain focused, great conversations.

I believe that with proper medical and self-care, diligence and the support of my friends and family, I will get back to my “normal”. Endometriosis, Chronic Fatigue Syndrome, life’s challenges; not one of these are obstacles that will stop me from being who I need to be everyday.

What do you do to overcome obstacles that seem to hold you back? What motivates you to keep working on improving your own life?

 

Reflections Then and Now: A Typical Day (what is that?!)

Today I got up at 4:15 am (on purpose) because I have a busy at work and need to catch up on things, or at least have 2-3 hours before the meetings begin. As I drove the 45 minute commute, I thought how much my world has changed since 1988 when my symptoms first began. Back then, I was in high school, working part-time in the family janitorial business and doing hours of volunteer work. When I got sick, I began sleeping in – as you saw by my first sentence – not a common thing in my world. I could not stay awake. I came home, if I made it to school, exhausted. I fell asleep, Mom woke me up for supper, and then after eating, I was back asleep until the next morning. This went on with numerous doctor appointments, school discussions, etc. trying to figure out what was going on with my exhaustion.

Fortunately, around a year after my symptoms began, I was diagnosed with Chronic Fatigue Syndrome. in this post, I will not go through the roller coaster of exhaustion, insomnia and years of herbal remedies, diets and various methods we used to give me some energy and relief of symptoms.Eventually, I was able to stay awake and live off between 4 – 7 hours a sleep most nights. Currently, this is still the average amount of sleep I get nightly. On this schedule, I’ve been working full-time since 2001, and most of the time have some sort of extra-curricular volunteer, part-time job and/or social life.

Today, I work 5 days a week, 7 – 8 hours per day, more hours when needed, write in my spare time, include time for many other hobbies and interests. I have a busy career, active life and work out a few times a week at my own pace. There are many more things I plan to do in my life: I intend to write full-time and leave this working for someone else (as satisfying as it is; truly it is!) so I can travel and pursue my other interests.

It’s been about 27 years since I began sleeping 18-22 hours a day. I am extremely grateful I can manage my symptoms enough to lead a full life and I will continue to listen to my body; feed it what it needs spiritually, emotionally and physically. I take one day at a time and treat my symptoms as it comes. Rest when I need to rest or as soon as I can get home. I appreciate the energy I have, the family and friends and support and I look forward to my future adventures!

 

Surviving the Holidays

Vacation is a wonderful thing. I am so glad that I have nearly another week!! At this point in my holidays, I’m not sleeping properly, eating way too much sugar and not walking nearly enough (or at all!). Moving forward, I will be starting a sugar-free sort of detox again. Normally I can have a little bit of sugar and be okay, but this is just over the top and I am seriously feeling it. I wish cookies didn’t taste so yummy! I put the chocolates away already. Next step is to put the cookies into the freezer (no, they do not get thrown away or given away – stop thinking that crazy talk!). After that it will be a massive intake of water daily and a reintroduction to light exercise. Wii Fit here I come!

I will starting Thursday, December 30, 2010. Why then? Why not January 1st when everyone else starts their New Years resolution?

1. Because I’m still around family and friends today and tomorrow.
2. I don’t buy into the New Year’s resolutions. Every single day is the time to start a new goal, new way of living, new start so it doesn’t matter when I start, as long as I start!
3. Waiting until January 1st puts me too close to back to work; having to deal with the sugar withdrawal and go back to work is no fun. It will be much better to get the sugar withdrawal over with. After awhile I’ll be able to have a little sugar – in moderation! 🙂

Here’s the plan laid out:

• Zero cookies, chocolates or sugar
• At least 8 cups of water/day
• No Diet Pepsi during the day
• Go to bed at a reasonable time (no later than 10:30 except maybe New Year’s Eve of course if I’m out)
• 30 minutes of Wii Fit/day while on holidays
• Rest as much as possible
• Rely on my friends and family for support

I realize the first couple days especially will be tough but as long as I’m disciplined I know it will be worth it. I anticipate massive movie watching, knitting and random calls to friends! Thank you in advance!

 

Little Things

Little things make a huge difference. I know it’s a cliché. However, with CFS and FM, it proves true. Last night I was limping around my apartment getting my things ready for work: lunch, clothes, bag prepped. The habit of getting my clothes ready the night before (another little thing) saves me the decision-making process in the morning and at least 10 additional sleep minutes (a little thing again!). Even with my limping around, still sore from the shoveling, I forgot to account for my extra pain in my clothes choice. Why would my clothes choice make any difference in my pain? Well, I planned to wear a dress and heels today. This is not a good plan when my entire body hurts; if there is ever a time for comfortable slacks and flat shoes, this would be it.

One of the advantages of CFS is my short-term memory or lack thereof. Absolutely at times, it poses serious disadvantages – forgetting how to get somewhere (coupled with my non-CFS related total lack of direction), having to write every little thing down, losing my train of thought in mid-sentence, etc.). Here is where the advantage for me is: sometimes I forget the disease and/or the current symptoms. Because my pain is usually under control, when I sit still or limit my movement, I forget that I have the pain. Until I stand up again. Last night, after I’d been sitting for about an hour with everything prepped for work, I stood up and my body reminded me of the pain I’m experiencing. I promptly changed my outfit from a dress to pants. No heels today thank you very much!

It’s the little things that differentiate the coping with this disease:

• Drinking enough water
• Resting
• Sleep – solid, restful sleep
• Practical expectations about physical strength
• Reality checks with what I can accomplish

My life is great; I have great family and friends. I have the support of wonderful people. I don’t put that in the little of little things. Why? Because that support is the BIGGEST thing. Without support, those little things wouldn’t add up to squat. Without support, without that major thing in my life, I wouldn’t count it as a life. I appreciate the people in my life. Thank you to all of you who love, listen and are there for me, no matter what I need!

“Only when you are safely sheltered… can you tell which way the wind is blowing. Only from the calm… can you see how to protect yourself from trouble.” The Book of Negroes, Lawrence Hill