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!

 

The Start of 2011

It’s been a rough start to the year. My vacation was not restful like I’d hoped between too much travel (little as it was), fighting a cold and plus my increased CFS symptoms. So my first two weeks back to work were beyond tough; even had to bite the bullet the second week and take two sick days.

What’s been happening? My CFS symptoms: exhaustion, nausea, headaches, muscle aches and pains, etc. have been in full force. I’ve spent as much time as I can resting, drinking water and relaxing. Yesterday I got a massage, went to see The Green Hornet and just chilled out. Today I spent the entire day in my chair knitting and watching TV or movies; only moving to get food or water. By the evening, I had enough steam to do some chores in slow motion. I am feeling better though – my nausea and headaches are much better. My energy is actually better; I made myself stay still for the active rest therapy that works well for me.

I am hoping that I sleep well tonight and can start the week with a realistic amount of energy. Last week was up, down and around; one day I would feel okay then the next it would feel like a truck snuck into my apartment and ran over me! I’ve got plans to bus to work again this week so I can sleep in an extra 20 minutes/day. I might walk once or twice, but I’m leaving that open. I have my clothes ready and my vegetables chopped for my snacks.

The week is off to a good start. Fingers crossed that my insomnia remains in moderation or even better – nil!

 

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!

 

Almost there!

It’s Tuesday of a short work week. My company closes down over Christmas so I’ll be off starting Friday until January 4th. I enjoy my job and am enjoying a decent energy week but ALWAYS am happy about time off! I especially like it when everyone is off, so I don’t have a huge pile of surprises when I get back. 😉

Life is good. Christmas presents  to wrap? Done. Christmas cards mailed? Done.  My time off work is deliberately quiet. I will have a couple of days out-of-town, but I keep that short and sweet so I can spend most of my time at home – chilling out with my relaxation favorites of computer time, crafts and movies.

My current status with my CFS is moderate. I’m still struggling with eating properly and drinking enough water. Why is it even though I know it makes me feel better, it’s so hard to do? Why does sugar taste so yummy and so hard to resist when I know in the long run it will only make me tired in a few hours? I was able to take a scheduled Monday morning off where I got to sleep in, watch the Survivor season finale from Sunday night and drink Chai Latte in the comfort of my home. Because it’s the last week of working for the year, I’m opting to sleep in a little more and take the bus to work every day. It’s way more fun to vacation where I can do fun stuff instead of forced into my bed and/or chair at home.

 

Time to relax

Another work week completed and the weekend is here! I started a new job 3 weeks ago – it’s a great job with lots of challenges and interesting things happening. The job is a positive change and my choice after spending 5 years with the same company. I am happy with change (I love change) but I won’t deny that it does cause some turbulence with my CFS. I work better hours, instead of 6:30 or 7:00 a.m. workday start, I get to come in for 8 a.m.! 🙂 The first week was just training and learning. Now into the 2nd and 3rd weeks, I’m doing, doing, doing… My task list is always good and long – the way I like it. The trick is to balance the whirling mind when I get home and relax.

Now here comes the fun part: trying to unwind enough to sleep at night. I come home pretty tired, usually not exhausted (which is great) but my mind is in overdrive with plans, ideas and strategies to make things better both at work and with my personal goals. I go to bed, read and fall asleep but then wake up an hour or two later. Insomnia has been a problem for years for me; which only is worse when I’m working through things. I have to use my coping techniques to relax!

This weekend – it’s time to relax; unwind, chill out and rest. I had a very good, productive first 3 weeks. I feel comfortable with the next week coming up and look forward to a relaxing weekend.

 

Hello world!

Welcome to my new blog, Life with CFS!

What is this about? Just what it sounds like – living with Chronic Fatigue Syndrome. I’ve had the disease (and for you non-believers, I’m here to tell you it is a real disease), since I was 15 years old. I had to quit high school, literally slept through most of my teenage years and have been through many ups and downs.

The first two years alone I slept 18-22 hours a day. Here’s the good news – I’ve been working full-time for the past 9 years. I even have the energy to have a social life, do mild exercise and sometimes volunteer. I’ve tried many things, different products, diets, everything under the sun. This is not a blog to promote a particular product (though I’ve got some that I use) but to share what has worked for me.

I live a full life. I”m happy. I enjoy good relationships with close family members and very good friends. This blog is to share my story and maybe give people in the throes of this debilitating disease some hope.