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

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

The last few weeks have been difficult ones for me. I have had some heinous cough- that is not really going away. I have all sorts of mono symptoms that haven’t really been going away. My skin has been peeling like crazy. And some other stuff has been brought to the surface, that I am not quite ready to divulge on here (don’t worry- it will get under control). Due, to the chest cough, and the skin peeling thing, it has been suggested that I give up dairy products. Remember when I tried to give up coffee. This is pretty much as hard as the coffee sabbatical. I can give up cheese, and ice cream (no problem), but I need milk, if my coffee is too strong….and I am having a very difficult time giving up yogurt. This also means, that I must give up cereal (because there is no way that I am eating it dry).

A week or two ago, I came up with the plan to try milk of different sources. I already know that soy milk will not work for me. In my mouth, it tastes terrible (unless its chocolate)- and besides, it gives me headaches. The only form of soy that I can tolerate is the edamame bean. Then comes the rice milk. And I may as well be drinking ground up chalk powder mixed with water. This stuff is vile.

But yesterday, I happened to be in the neighborhood upscale grocery (the one that sells the grapples) and discovered Almond Milk. While, this milk doesn’t taste like actual dairy milk. It doesn’t make me gag either. There is a hint of almonds in the flavor. While I do not think I could drink this milk straight up. I do think I could tolerate this milk in my coffee. I also discovered that the coffee flavored almond milk, gives my morning coffee a little extra kick!

Anyway, its not a bad alternative – if the real dairy stuff has been banned from entering your body. Now, if I could just find a yogurt substitute.

**Picture Source – flickr

Post from: Blisstree

Almonds – A Good Source of Milk?

Post from: Blisstree

How to Be Happy According to Jack Lalanne

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

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

Now here is the featured post:

The last thing you want to do when you are tired and hungry, is slave over the stove attempting to pull together ingredients into something edible. When you get to a certain degree of hunger, cooking becomes a chore, and eating becomes something you do only to take away the discomfort of hunger. So you decide to eat yet another frozen dinner, or order take out from the restaurant across the street because its easy. Your body is giving you every signal possible that it needs nourishment, yet you respond by feeding it processed, fat-laden, sodium-filled “food”.

Those who eat healthy most of the time will tell you that they feel fabulous inside and out. Good food makes you feel good - mentally and physically. I have a sweet tooth and spent one Christmas at a family dessert buffet, sampling everything on it. I ate until I was stuffed full of fat and sugar, and my stomach hurt. The next morning I woke up feeling lethargic, bloated, and nauseous. Despite having gotten a good night’s sleep, I even looked horrible with a puffy face and circles under my eyes. I made a note to self: remember how you feel right now.  So far it has worked as a reminder that what you put in your mouth, is distributed to every cell in your body.

When living with a chronic illness, it is especially important to keep your body optimally fueled with balanced meals filled with nutrients, vitamins, minerals and energy. While you can’t control your illness, you can control the foods you eat. Your best defense is to have a fridge stocked full of fresh foods that are ready when you are. When you’re feeling well, chop your vegetables for the week and cook some rice, so that when you aren’t you can reheat and eat on a whim. When you have the time and energy, cooking can be very therapeutic. I love to chop vegetables on a Sunday afternoon but Thursday night at 7:00? Just get them in my belly ASAP! I’ve learned that a little planning goes a long way.

Remember that the choice to eat a healthy diet is your own. No one is forcing you to eat those French fries – it’s your decision. Choose to eat real food and your body will thank you.I close with some food for thought:

Make a Healthy ChoiceA robust and satisfying life doesn’t happen by accident. It’s the nurtured, crafted culmination of a series of south and conscious decisions. From the work you do to the food you buy, from what you take on to what you turn down, your wellness is ultimately determined by the quality of each and every choice. Not that they’re all going to be perfect, nor should they be. They just have to be ones you make mindfully. That’s when magic happens. Life starts to become something you do, not something you merely leave to chance.

~ Terri Trespicio, Body +Soul, March 2008

Thanks again to Kath, for her take on eating for wellness. It’s motivated me to ignore the “eat me” callings from the gelato that resides inside my freezer.

Post from: Blisstree

A Little Planning Goes A Long Way

Ever read the book, Who Moved my Cheese?  Well I am moving the cheese far far away, and it will never find its way back in my refrigerator again.  I have been off cheese for about 6 weeks, with the exception of Laughing Cow cheese (and one little piece of oka – which I didn’t really like the taste of).  Today, I actually ate some type of danish cheese, and ended up with a major crash that put me to bed in the middle of the afternoon.  Something that rarely happens anymore.  The good thing about this, is that I know the cause.  And so cheese goes back on the list of forbidden foods.  Problem solved.

I got up a little while ago, and had a shower, which is my first attack against feeling crummy, and when my hair dries, I am going to take a little walk in the night air to the grocery, to pick up some lemonade, tonic water, and as many bottles of water I can carry home.  A little bit of cool fresh air should perk me right up.  Since a regular meal is the very last thing I want right now – dinner is going to consist of apples and blackberry yogurt.

Been a long time since this has happened.  Great reminder, that even when you are doing things right, something can go sideways on you.

**Picture Source – flickr

Post from: Blisstree

My Sunday Crash Was Caused by Cheese?