This will be my last post for CFS Squared – Tales of CFS. I have enjoyed writing here, for the past two years. But it’s time for me to move on now.

I must say, that this last word stuff is a little daunting. I kind of want to sneak away – and leave you with fun and quirky posts. But, I owe more than that to all of you, and to myself.

On more than one occasion, I have written about Do No Harm. I am going to share a little secret with all of you. Writing and/or following a health blog about chronic illness eats away at the energy you have. It most certainly eats away at mine, which is why I don’t read illness related news blurbs or other blogs. Spending so much time thinking about your illness and how others cope = self harm.

What we should be doing is enjoying life. We should be singing songs to our friends on the phone, hosting dance party in our living rooms, reading Dr Seuss to our favorite 3 year old, playing catch with our dog and his best tennis ball, and throwing fancy dinner parties where we serve pizza and KFC with very expensive wine.

We need to savor the small stuff. Stop analyzing every pain and cough.

Sure, reading about how other people cope with their issues can be somewhat helpful – but this journey is about learning what works for you. My tricks won’t work for everyone. Just like yours won’t always work for me. The best thing to do, is to get out there, and start figuring out what helps. The only way to do that, is to just do it. Be your own Nike advert.

Reading about recent developments for Chronic Fatigue Syndrome or Fibromyalgia, is not going to help you get well. The latest drug may make life slightly easier for a little while, but will most likely become less effective. I will say one last thing. And this will be the most important advice that you will hear….

Get out of your head!

Now go outside and have some fun!

It’s been a pleasure.

**Picture Source - flickr

Post from: Blisstree

The Swan Song

Image details: Hammer breaking alarm clock served by picapp.com

Today’s theme is all about the alarm clock. I have posted a poll in the sidebar, asking if you use an alarm clock in order to wake up.

Please vote in the poll, and then come back here – and let us know what effective method you use for waking up on time…if you use one at all. If you don’t have a method, that’s fine too – just let us know how you wake up.

Post from: Blisstree

New Poll- Inquiring Minds Want to Know

I have a lifestyle where I rely on the use of an alarm clock.  I hate being late for anything, so time pieces are very important to me.  I use a simple clock/radio for when I am home.  But have been known to use alarms on my computer or cell phone (when I remembered to use it).  Once upon a time, I used to rely on the sun.  However, the sun doesn’t shine in my neck of the woods very often – so that method didn’t last long, after I moved here.

I have previously written about how I use my current alarm clock in a positive way to rouse me from sleep. However, I have just come across one, that appears to harm people.  Even people without a sleep condition.  For me, it would make me absolutely crazy.

Here is the deal with the Puzzle Alarm Clock,

When the alarm goes off -it shoots 4 puzzle pieces into the air, and then makes this horrible honking sound until you put them back in the proper place.  How ridiculous for someone who lives with brain fog during the middle of the day, not to mention at 5 am.    Most of the time, I am not able to answer the phone, when I have been asleep – how do you expect me to complete a puzzle?

Although, I do think the idea is a fun way to get up – it is absolutely not the right alarm clock for me.

So tell me, what is your most favorite way to get up in the morning?

**Picture Source -  Big Bam Banana

Post from: Blisstree

Alarm Clocks – Helpful or Harmful?

Image details: Man asleep in bed holding large alarm clock served by picapp.com

Every morning at 5 am, my radio is set to play selections from the classical music station. I listen to the music for an hour, before starting my day.

This is the only way for me to wake up properly. I can not wake up without assistance. If I decided to wake up, when my body (and mind) was ready – I might now get out of bed until well after noon (such is my curse of Chronic Fatigue Syndrome). The 5 am start is necessary – I have a job, where I need to be everyday – and it takes about an hour to get there.

The 1 hour of listening is imperative. First it brings enjoyment to my day (important!). It gives me an opportunity to awaken my senses in a way that is calming and energizing at the same time. Because of the genre of the station – the music is rarely of a jarring nature. Although, occasionally they will play a jig – or something by Vaughn-Williams – and then it becomes harder for me to wake up in a good mood. Often when this happens, I usually close my mind off, and roll over and fall back to sleep. It happens, when I am forced to listen to music that I do not like.

My point to this, is that it is much easier to wake up to sounds that are gentle, than something extremely high energy first thing in the morning. Pop music belongs on the ipod, dance floor, or the car stereo, and not in the bedroom. An equally good substitute is listening to sounds of nature. But usually that can happen naturally in the spring and summer (at least in my neighborhood).

Another trick is to remain consistent. Don’t let yourself sleep in on the weekends.

What do you to start your day on a good note?

Post from: Blisstree

A Positive Start to The Day With CFS

Lately, I have discovered the sounds of Radiohead. I know I know – they have been around for a long time. Well, I just discovered them. And this band totally relaxes me. I often miss the message of the song, but I like the sounds. So tonight, I am going to post their video “Go To Sleep”.

Here it is:

Post from: Blisstree

A Musical Interlude

Last night, I had an opportunity to speak to a group of CFS Sufferers. I am not a big fan of support groups (outside of 12 step programs, and then again not exactly a fan – just believe they are necessary). I suppose one could argue that this blog is somewhat of a support group – but then again, I am not asking for weekly attendance – or participation (although I love it when you do). I don’t really have much to do with people feeling sorry for themselves, and from my experience, that is what support groups do.

But last night, a group asked me to speak – and so I did. Will I go back as a member, absolutely not. Will I be invited to come back to speak – it is doubtful. A group made up entirely of women much older than myself, who had absolutely no desire to get well, with the exception of one (interesting to note that she was around my age). What makes me think this? Well the first thing I saw upon entering the lecture hall, was a very large table filled with pastries, 2 urns of coffee, and bottles of soda pop and sunny delight. Interesting fare for people who are suffering from chronic illness – in which diet can hugely affect ones “performance”. Yea Yea – I know about my own coffee addiction – but really coffee was the least poisonous thing in that environment.

So I start my talk…and it is a good one. Trust me on this. My topic was “You Know You Best – And So You Are the One In Control”, something that I have written on this blog more than once. I honestly thought that people would respond well. I was mistaken. Perhaps my anger is clouding over my memory slightly, but when given an opportunity to speak, the first thing a member of the group said was – “you can’t possibly understand what this is like – even my husband doesn’t believe me”, and so I asked her what she does, thinking that may perhaps give me a way to understand. She replies, “well I am sick – I go to the doctor and attend support group meetings”.

WHAT????? Who says that because you have been diagnosed with CFS it means that you do nothing. If that’s the way you think, then what kind of hope do you have. No wonder the husband doesn’t understand. This woman goes to her doctor to get pill refills (she shared that info with me-its not made up), and then goes to weekly support meetings, where she can consume massive amounts of sugar, and dial in to how sick she is, with others who in turn feed the addictions.

I don’t have to tell anyone here, that this is not going to work. You are not going to get better, unless you want to. No amount of passive pill popping and commiserating is going to help. My breath was wasted last night….and as a result, it upset me a great deal. I admit that the timing of my talk and how I am feeling was not great. Because the result was not what was expected, it made me feel a lot worse than I normally do…(I am now bouncing back). However, it did help me to figure out some things.

For example:
I can not be responsible for anyone else’s wellness except for my own, talking about being ill -makes one feel horrible a lot of the time, if people are happy the way they are- then who am I to try and bring about change to their lives.

But for the woman at that meeting last night – and all the rest that nodded in agreement with what she said, I have just one thing left to say.

Do you not miss the woman you used to be…or the woman you had planned on becoming?

**Picture Source – flickr

Post from: Blisstree

Do You Want to Get Well?

If you are anything like me, you try to get more fruit into your diet (because you know its good for you), but you either can’t seem to commit – or the good fruit that you like, seems to be seasonal. I fall into both categories, by the way. I always have good intentions, and buy fruit at the produce market. But when I get it home I tend to lose interest. Or I can never find what I am looking for, because its out of season. For example, I will only eat apples during September and October. Don’t ask me why that is. It’s just because. The rest of the year, I don’t like the way they taste. However, I love to eat grapes, all year long. But – in certain months of the year they are more expensive than others, so I tend to stay away.

Yesterday, when I was at the supermarket, I saw a really cool cross breed of fruit. It’s called the grapple. It looks and has the texture of an apple, but it smells and tastes like a grape. Seriously, it actually tastes like a grape. I have now found a way, to get more apples into my diet, without having to spend $10 for a bunch of grapes.

As everyone knows, fruit and vegetables are an essential part of one’s diet. They are even more important when living with a chronic illness, especially one that can compromise your immune system. Thanks to great developments in science and agriculture, the tastiness of certain foods are changeable. Just like people who are lactose intolerant can drink milk, and high strung people can drink decaf coffee – people who don’t like apples can eat the very ingenious fruit called the grapple. Since I have decided to incorporate these into my diet, my doctor can stay away (for longer periods of time).

Oh it must be said, the grapple was invented, as a way to stave off childhood obesity, but I think its a really great idea for adults, who just don’t like certain types of fruit.

If they could just find a way to change the smell and taste of liver – then I would be one happy camper. Perhaps they could find a way to make liver taste like chocolate chip cookies.

Post from: Blisstree

A New Way to Eat Fruit

In between sleeps, I managed to watch Fahrenheit 451, a totally trippy movie made during the 60’s based on the book of the same name by Ray Bradbury. It got me thinking about things that I missed, when I read the book when I was 14. Things that applied to my illness, like if “the man” gave me permission to be sick, would I? – You know, that whole reverse psychology thing. I may be stretching here….I am quite medicated, after all.

Another thing that hit home really hard with this movie, is the idea of television. Or rather interactive television. As you know, I am off television right now. But perhaps the day will come soon when television becomes more interactive. Maybe then my opinion will change, slightly. Then again, maybe that is why the internet is so popular.

Anyway, here is an example of what I am talking about.

Post from: Blisstree

In The Future…

I came across this hint recently (not sure where) but it sounds like a good idea.  Next time the insomnia monster comes to visit, I will be putting it into practice.

Here is the hint:

Start counting backwards from 100.  I know sounds too simple, right?  There is more to it.  Instead of just counting backwards, you have to spell the number.

So for example:

• 100 is O-N-E H-U-N-D-R-E-D
• 99 is N-I-N-E-T-Y-N-I-N-E
• and so on

I know myself well enough that I wouldn’t be able to get past 98 or 97.  I just don’t have the patience to think, when I am tired.  Most likely I will have given up, and gone to sleep – just from using that much brain power.

Do you have any fail safe tricks to help you get to sleep?

Post from: Blisstree

A Helpful Hint on Getting to Sleep

This past week, people in British Columbia recognized “anti-bullying day”.  By this, many people wore the colour pink.  Parts of my life are spent in hostile environments.  And even though several people “acknowledged” this day, not everybody did.  Too bad really.  Because, these people have no idea how much harm they cause.  Hours go by, where people give barbs to each other (me included, most often to protect myself).  People who know better, are encouraging this behavior.

It has come to my attention, that this “bullying” is even worse than I suspected.  There is back stabbing. I suspected it, of course. However,  I didn’t realize how serious the problem was, until yesterday.  And I only found out about it, because I was the victim of such an attack – no need to remark on how I found out.  It hurts!

Last night, I made it home exhausted, and near tears.  This morning, I got up to make some breakfast, and then returned to bed.  Its now 3pm, and I am still in bed.  Completely wiped out.  My brain is focused with a plan of attack, but the energy isn’t quite there to execute it.

This leads me to think, about what our environment does to us.  I have written about energy vampires, and people who throw negative energy darts.  These people are real, and we do our best to either live with them or to avoid them completely.  I am not strong enough, to be able to find a way to co-exist with these bullies any longer.  It’s affecting my mind and my health.

I have no choice but to find a way to move on.

**Picture Source -  peasap via flickr

Post from: Blisstree

People Suck!