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

Other sites that I use occasionally are: 

Flickr is an interesting site. One that I love looking through. I don’t take enough good pictures to use it properly though, hopefully that will be remedied, but in the meantime – I love looking at the works of people with a talented eye. Some readers of CFS Squared use this site, to showcase their talent – and I am in awe of them.

I use a site called Good Reads, to keep track of the books I am reading.  I have tried others before, but the maintenance was too much.  This one, doesn’t take up too much time – and the people are friendly, and don’t force themselves upon you.  I like that.  But I always end up feeling guilty that I don’t read enough.

And finally, I was invited to a networking site called Alopecia World – because of the Baldiness blog that I write.  Unfortunately, I have not spent enough time there, to know how it will work for me.  However, it does sound like an interesting idea.  I won’t be able to spend any time there though, until I have completely recovered from my facebook experience.

What social networking tools do you use – and how do you use them, so they don’t overwhelm your life.  If you don’t use online social networking sites- tell us what kind of activities you do to reach out to people.   I am all for real life interaction- so let us know what you are doing.

Post from: Blisstree

Is Social Networking Tiring You Out?

I started watching people on the street, I began to quiet myself during my work day – and really paid attention to what my coworkers were saying. Then I really listened to what I was putting out there.  I discovered that I was contributing to the problem. Harmful things that have even appeared on this blog – and for that, I am sorry.

So I decided to do something about it.  While I am not always able to stop my actions (or shall I say, reactions), I am now aware of what is going on. I have chosen to really pay attention, and slow down my responses so that I don’t contribute to the “madness” any longer.

I will take responsibility for my actions.

And so I will end this post, the same way I started it.  With the words….

Do No Harm.

Post from: Blisstree

Do No Harm

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

A lot of really interesting people will be speaking about all of the different ways that invisible illness can affect your life – and how to live a life with a chronic illness. Some speakers have even been known to hang out at CFS Squared. This thrills me to no end.

It’s a really important week, and if you have some time – I hope you will get a chance to check out what is happening.

Find more videos like this on Illness-Disability-Healthcare-Caregiver Ministry Network

Post from: Blisstree

I am not Invisible

Here is the excerpt that I read – the question comes from a med student, who is tired a lot of the time, and is disenchanted with life:

Dear Dr.

I’m a second year medical student in one of the universities here in Cebu, the eldest and the only girl in the family of five. The previous year of college was okay – I passed all the subjects.

Lately, however, I observed that I’ve lost my eagerness and enthusiasm to continue my course. I find my friends and classmates unexciting. There is no problem with my love life since I don’t have any to start with. I noticed that I’m always tired. I have no energy even to walk towards school.

My appetite is good as I am taking multi-vitamin tablets. My apprehension is this constant feeling of fatigue. I’m sure, pretty soon this will have an effect on my grades.

Doc, I also don’t want to disappoint my parents. They have high expectations for me and they work hard for me to be able to pursue a medical course in college. My brothers are also expecting that they will have a doctor for a sister.

I know that your column has assisted many in dealing with various concerns. Please help me. What is the best thing to do?

I am not a doctor, or a health care professional….but I do know enough, that this could be just about anything, or simply nothing. Certainly not something that can be diagnosed from a letter.

Here is the response:

Dear Mallory,

I think you are suffering from Chronic Fatigue Syndrome (CFS). This is one of the medicine’s most recent mysteries. The cause is unknown so there’s no way of making a diagnosis and treatment. The only common complaint in this ailment is persistent chronic fatigue. There is no known cure for CFS. Therefore, what one is to cope with it. Here are some coping strategies I can share with you:

* Practice basic healthy living, such as having a good and nutritious diet, getting enough rest and participating in a regular exercise program.

* Accept the fact that you might have this chronic disease.

* Don’t blame yourself – it’s not your fault that you have it.

* Have fun – maybe you can entertain yourself by spending time with friends outdoors.

* Keep your sense of humor intact and use it often.
* Maintain a prayerful life.

If your symptoms still persist, consult a doctor. There might be a more serious problem.

May God bless you and good luck on your future medical career.

Very truly yours

Dr.

What is this person thinking? Telling someone through what is basically a tabloid that they have CFS. Not that I am a big advocate of taking meds, but if this “patient” had gone to see a doctor, tests would have been given, and then a game plan could be decided upon – including taking appropriate medications.

This is what upsets me about the Chronic Fatigue Syndrome diagnosis. No wonder CFS gets such a bad rap. A person may as well self diagnose themselves. I am a little choked about how irresponsible this is. I would really love to know what you think about it.

Post from: Blisstree

Tabloid Makes a CFS Diagnosis

So for all of those who take these serotonin boosters, I present Paxilback – a parody of Justin Timberlake’s Sexyback. The video by Gray Kid is delightful (in a parody sort of way), and kind of on the edge – (by which I am referring to the razors).

put a little serotonin in me…..put a little serotonin in me…put a lot of serotonin in me….

GENIUS!!!!

Thanks to the editrix Jenni at Chronicbabe for passing this along.

Post from: Blisstree

Eat your heart out, Justin Timberlake

Last week, I was reminded about an organization called Book Crossing. Essentially, they are the world’s largest book club.

They define themselves as:

bookcrossing
n. the practice of leaving a book in a public place to be picked up and read by others, who then do likewise.

It is VERY easy to join. There are 3 steps:

The “3 Rs” of BookCrossing…

1. Read a good book (you already know how to do that)

2. Register it here (along with your journal comments), get a unique BCID (BookCrossing ID number), and label the book

3. Release it for someone else to read (give it to a friend, leave it on a park bench, donate it to charity, “forget” it in a coffee shop, etc.), and get notified by email each time someone comes here and records a journal entry for that book. And if you make Release Notes on the book, others can Go Hunting for it and try to find it!

While I don’t go hunting for books, I do leave books around my city (and others) so these books can enrich other lives. I am also really bad about keeping track of the books that I cross. But I have gotten a few comments from people who have “caught” my “releases”. Its kind of fun, to see where they end up. I really need to start registering more books. I will remember that when I start on my summer reading.

Some of the places where I have released books are:

• on a beach in Naxos, Greece
• ferry ride in Greece (I tend to release books when I am on vacation, saves me from having to pack them home)
• Camden Yards in Baltimore (watching the Red Sox beat the Orioles)
• the train station (my favorite place to leave books behind)
• Starbucks
• My hair salon

As we all know, reading is a great activity for persons with CFS. When you use the service the Book Crossing provides, not only can you keep track of your own library (there are lots of other online services that do this as well), but you can do your part in helping to make your community a little bit more literate. Of course, you can always donate these books to your favorite charity; but I suspect that Book Crossing has a category for donations as well.

Now that you know about them, go forth and search for a book.

Post from: Blisstree

A Great Hobby for Persons with CFS

ChronicBabe is putting on a really fun little contest. You can win, one of five copies of the book, Beyond Casseroles: 505 Ways to Encourage a Chronically Ill Friend by Lisa Copen (Lisa is the founder of restministries.org). I haven’t read the book yet, but it’s on my reading list.

Everything you need to know about how to enter, can be found here.

Good Luck!

Post from: Blisstree

Crazy Cool Contest on at ChronicBabe

Anyway, because of her help, I can throw away 27 things a week (at least!!!), and that is not including regular garbage. Impressive isn’t it. Once you get started and are able to maintain, it takes absolutely no time at all to keep a somewhat clean house. While I live in a sort of small space….I can keep it presentable, eventhough I work 2 almost full time jobs, and write the occasional blog post (which I am trying to do with more frequency), and have the occasional cfs slip.

I was doing my regular round of throwing things out, when I realized that I can do a whole lot more. First thing I did, was look at my cd rack. Now being a classical musician, I have more cd’s than I can ever hope to listen to….same with the vinyl (although I am not yet ready to purge those). And since the invention of mp3 players and itunes (specifically), i have less and less use for my cd collection. Anything that I desperately want, is easily accessible in other forms (legally, of course). So I started a box for cd’s to give away to family and friends, or whatever charity comes knocking on my door first. Within 15 minutes I whittled my way through my collection. The total of cd’s that I could live without is 57. GONE!!!! So with 57 less cds, I no longer have the need for a cd rack. POOF! Its gone now, too. Next came the bookshelf. This one is a little harder, I have a hard time throwing away words. It’s not impossible mind you. I just remind myself that if I don’t absolutely love it, and can’t picture myself reading it again, then I should just pass that gem on to someone who will love it. My friends will be richer because of it. Next project to tackle is my closet.

Which reminds me why I started this post. I came across this article by Vicky White, when I was researching Feng Shui techniques on achieving a more restful sleep. I am highly suspicious of course, especially when she can come up with claims such as:

A woman with chronic fatigue syndrome gained a noticeable increase in energy by having someone help her
declutter her home, including getting rid of clothes that held memories of her life at the time she discovered she
had chronic fatigue

I do believe the article in question, is an advertisement offering her services; it did allow me to ponder the question of clutter in my life. She is right in a sense. When I have less “stuff” around me, I am not nearly as overwhelmed, and I find it easier to breathe. And of course there isn’t as much to distract me. I have problems focusing on the best of days….so a good purge of clutter now and then is beneficial for me. However, I can’t say that it does anything for my energy. Although, I am able to save time (and a little effort) on dusting.

If you decide to declutter your house, but can’t figure out what you should do with the stuff you are throwing away (because you can’t bribe your friends to take them). There are many charities that will be happy to take your unwanted treasures off your hands. I don’t know about you, but weekly I field calls from charities such as “Big Brothers” or the Canadian Diabetes Foundation, asking me to donate household items. Charities are more than happy to arrange pickups, and some will even take away that old couch that is taking up precious space in your basement.

Try throwing away 27 items this week, see if it makes a difference. Just this once, you can make magazines and newspapers count against your limit.

Post from: Blisstree

Will Clearing the Clutter, Help with Chronic Fatigue Syndrome?