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

Now lets get down to business.  CFS Squared is of course about Chronic Fatigue Syndrome, and all of the stuff that goes with it (good and bad), and there is a lot of good that comes with this illness.  For the most part, I write about my personal journey with this illness.  I share what works for me, and what doesn’t.  Sometimes I write about the happenings in the Chronic Fatigue world, but most often I get myself into trouble, when I do that so I tend to shy away from hot topics.  If you have a topic that you would like to see addressed, please shoot me an email to laura@b5media.com and hopefully I will be able to write my take on something that you would like to see.

There are some things that CFS Squared is not.  CFS Squared is not written by a medical professional.  There is a disclaimer that can be found on the sidebar.  I will always suggest that you talk things over with your health care practitioner before making a decision on something that you have read here.  What has worked for me, may not work for you.  Please understand that we are all different, and our illness varies between person to person.  The same goes for commenters.  Any comment that you have read on this blog, can not be taken as advice from a healthcare practitioner. These are people living with the illness, just like you and me.  There is a big range of how we each deal with CFS as individuals.

CFS Squared is not a forum.  I encourage comments, and I applaud readers for reaching out to each other via my blog posts.  Sometimes a topic that is covered, can get some pretty enthusiastic responses, and while I think that is fantastic – people who subscribe to comment feeds, can get more than a little overwhelmed.  I just think there is a better medium out there to communicate on topics with like minded individuals.  For instance, there are many forums on topics such as chronic illness or certain medications.  Support groups can be found everywhere (and this includes online groups). If you can’t find one that is suitable, you can try setting up your own.  There are lots of applications available.  Even Facebook will allow you to set up a little something.

Like I said, I don’t want to discourage comments. But I also don’t want the message of this blog to get lost.  In case the message has already gotten lost, let me reiterate it again.  CFS Squared is about living positively with a chronic illness.  It is a journey on how to go from living in your pajamas to regaining a positive life.

Thank you for your continued support. I appreciate all of you.

Post from: Blisstree

CFS Squared Is….

I found a video of a beginner pole dance class from The Flirty Girl Studios, on YouTube. This is very similar to the class I saw tonight. If any of you have any experience with this kind of exercise, please tell me what you think of it. I would be interested in hearing your opinions.

Post from: Blisstree

Pole Dancing- A Way for PWC’s To Exercise

Your doctor gives you a few options:

• suggests you stop working, and implement the 50% rule, gives you a schedule of medications to take everyday
• gives you just the meds
• tells you to continue doing whatever you are doing, but make lifestyle changes
• refers you to a psychiatrist
• says that there are various alternative therapies that you should try, that can help

What would you do?  When I was first diagnosed, I followed the advice to follow the 50% rule, and take medication.  Now (keep in mind hindsight is 20/20 – and I am A LOT more informed these days) I would follow the combined advice of continuing to do what I was already doing, see a therapist, and seek out alternative treatment.

If all routes can lead to the same result – and they can (for many)- why do you choose your method?

I  know lots of people disagree with my reasoning (meds – bad!) – and I think its cool that they do.  Please leave a comment telling me why you feel differently….or why you agree?

Post from: Blisstree

CFS – You Have a Choice

• Ambien
• Zopiclone
• Valium
• Zoloft
• Xanax
• Donormyl

This is the list of prescription drugs found at the scene of Heath Ledger’s apartment, at the time of his death. I have taken 5 of the 6 drugs listed, at various times to help deal with Chronic Fatigue Syndrome. On several occasions, I took some of them at the same time. You may ask, which ones? – It makes no difference. All of them can be dangerous, if not taken properly. Even when taken properly, and under the care and guidance of a doctor – there is a big risk involved.

Doctor’s are human – they make mistakes. How many doctors did Heath Ledger see, in order to get all of those prescriptions? Want to know how many I saw, in order to get mine? No fewer than 4. I could not be trusted to remember every single drug I was taking (my memory wasn’t capable – and I could never remember to write things down). Doctors, don’t always read charts provided by other doctors. I was the one that was ultimately responsible for my pill taking regime.

Want to know why I now choose not to take pills for Chronic Fatigue Syndrome – I am terrified of ending up the same way that Heath Ledger ultimately did. I have come close (with an encounter of Ativan – when first diagnosed, and had absolutely no business taking a drug like that), and I am done with it (and all others).

I would much rather not sleep, than take something for a problem, that will eventually sort itself out.

It’s unfortunate that this has happened to a great actor of our time, it saddens me to think about this loss – but maybe there is something that we can all learn from this.

For me at least, I know that my choice to not take anykind of drug to help me sleep – is the right one.

Picture Source

Post from: Blisstree

The Heath Ledger – CFS Connection

Not that any of you care, but the second best thing about Christmas arrived in the mail today.  The first best thing about Christmas, is picking out the tree (I have to have the kind that smells like grapefruit).  The second best thing is getting new pajamas.

Mine arrived today.  They are cutest jammies you have ever seen.  They are cream, and have cowboys on them.  Too cute, right?  I get way too excited about flannel pajamas….I know – its a sickness.

Anyway, if you want a pair just like those – and I know you do.  You can order yourself a pair, here.

Post from: Blisstree

My Christmas Pajamas Have Arrived

Music can be very restful. I often fall asleep while listening to music. If I am really into what is playing, I often feel like I am enveloped by the music. It makes me feel comfortable and safe – which promotes really good rest (for me).   Although not everyone agrees with me.  Not everyone wants to hear soothing sounds while they are trying to get some sleep.  So what do you do, sleep with headphones plugged into your ears?  That isn’t necessary any longer.

There is a pillow being made, that has built in speakers.  These speakers can be dialed down enough, so that the only person who can hear the music, will be you.  Great idea, don’t you think?

Of course, there is another upside to these pillows.  Since you can plug your mp3 player into them, it would make it that easier to learn through osmosis.  Now that college lectures are available through itunes – all you have to do is search for the right lecture, plug it into the pillow, rest your head…and voila – instant studying.

Genius-ness!

Wanna know more – go here.

Picture Source – Hack a Day 

Post from: Blisstree

Music to Help You Sleep

I just wanted to reiterate that any information found on this blog, whether it be something I wrote or a comment from a reader, should not be considered as advice from a health care professional. This blog is for educational (and sometimes entertainment) purposes only.

I write about treatments that work for me, but that doesn’t necessarily mean it will work for you…why is that? It’s because you are different. I will occasionally write about other interesting developments…but that knowledge isn’t always first hand.

I learned a long time ago, that prescription drugs do not work (for me), which is why I choose to practice other types of healing. I still have a team of doctors that monitor my progress. They are needed. I wouldn’t be doing this well, if I didn’t have them. When the topic of starting a new medication arises with my “team” – we discuss it thoroughly, and I will often leave the doctor’s office with lots of information, but no prescription. I almost always think about the treatment before saying “okay”, or “no” as the case may be. It requires an extra visit, but that’s alright….in my opinion its better to be safe than sorry.

Lately, I have noticed comments on certain posts regarding problems with certain drugs, and other readers chiming in to comment on the experiences,  telling people what else they should be trying. I think its great that there is such a forum on this blog….I really am so pleased about this!

But….

I just want to make sure that you approach these posts and comments, like you would wikipedia (or something similar). Think of it as a jumping off point, a start to your research. Or talk it over with your doctor, and ask for more information before starting something new.

Keep in mind, that no two people are going to react exactly the same way to any kind of drug.

That said, I have lived with this illness for a long time now, and I know what works and doesn’t work for me. I am never going to recommend something dangerous. I know that we all want to get better, and live happy and productive lives…I just want us to be careful.

Post from: Blisstree

I am not a doctor, in life or on television

It’s the final installment for my series on brain fog. Before we get started on the final episode, I would like to thank everyone who participated. I learned so much about this topic. I had no idea that people other than PWC’s experienced brain fog, and that it takes different forms. I am especially grateful of all the new ways that I can cope with it, when the fog comes to visit me again. You guys have such creative ideas. I loved them all! OK back to the series. Today I am profiling Kelly Phillips Erb. Kelly writes Taxgirl for b5media. In case you are wondering, its quite an interesting blog. That says a lot coming from me…..as there is nothing I find less interesting than the subject of taxes. However Kelly’s “passion” makes her blog a fun one to read.

When I asked my fellow b5 bloggers if they suffer from brain fog and what they do about it, Kelly had this answer about her “mommy brain”:

I’m a big list maker. I have post-its stuck to my computer all over the place. I thought I’d go high tech and started putting my lists in the iPod but I forgot that I put them there. And then I’d forget to sync with my computer so that all of my lists were outdated. So I’d see “buy milk” and not realize that I’d already bought it… At one point, we had six bars of cream cheese in the fridge. And I like bagels, but please. So, the iPod lists had to go. We’re back to post-its. And I do blame “mommy brain” for most of my memory loss. Pre-kid, I used to be awesome at remembering things… I think.

What a great idea – to put your to do lists on the ipod. Wait, let me think about this for a moment. OK I am changing my answer – what a great idea for everyone else to put their lists on the ipod. Mine just ends up in the laundry, and I will lose my life. I totally hear you about buying something that you have previously purchased, because you forgot that you already did it. This is the reason why the only thing in my freezer besides ice cubes is about 25 frozen bananas. I use the post-it idea, especially since they have made them a whole lot stickier these days, and now they stick to the inside of my wallet. I never seem to forget to look there, perhaps that says something about my spending habits.

Post from: Blisstree

Brain Fog – We Have Reached the End

In case you are wondering what kind of things have been brought on by all of this sleeping. Here is a list of all sorts of out of character stuff that has been happening to me, because of this latest development.

• This morning, I discovered that I bought banana flavored milk for my coffee, instead of my usual 1% – I did not do this on purpose. I decided to use it anyway – it’s not terrible…but I won’t be buying it again.
• I have fallen asleep at work 5 times, in the last 5 days.
• I did a face plant (aka bad fall) in a very busy intersection – a kind man got out of his car to help me out. – OK so this is not entirely out of character for me, but I was very tired when it happened.
• I have absolutely no patience for anyone these days
• The urge to move away and live in a cave is very strong. Caves are dark, I think I might do alright living in one.
• I am completely covered in hives – I believe this is stress related – brought on by too much sleep???
• I want to get a cat. This is completely absurd. I am a dog person, I don’t even like cats.
• I have attempted to write about 13 posts for CFS Squared, but have fallen asleep in every single attempt. For whatever reason, I keep forgetting to save my work. It’s been a very frustrating experience.
• Most meals that I have made have consisted of Ramen noodles, because I am too tired to cook properly. I am even too tired to throw in some pieces of broccoli into it. I must remember to buy some fruit today.

I am not even going to talk about the “real” symptoms that I have been experiencing because of the last two weeks. I suspect you know all about the “other stuff” that has been going on with me.

Post from: Blisstree

Random Notes on My Life with CFS