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Long Walk to Freedom

Posted by amber | My Diary | Posted on February 22nd, 2011

Now as some of you might or might not know “Long walk to Freedom” is a autobiographical book by Nelson Mandela. And in a some what connected yet totally unconnected way I went to see the U2 concert on Friday. There are a band who stands for freedom of speech and are politically outspoken.

Anyway Friday I walked a fair distance to go to see the concert. A distance far greater than I am used to. And the concert was superb. Unbelievably loud; the sound vibrated in your chest. The stage and big screen construction was out of this world and really made the experience even more spectacular.

HOWEVER the price I paid for enjoying my “long walk” and “freedom” songs was delivered to me this Monday morning!! Oh my God. My throat felt like someone had dragged it behind a 747 as it was taking off. My body felt like I had done 12 rounds with Mike Tyson. And my head was pounding like I was the drummer for Kiss. Other than that I was fabulous!!!!!!!!!

So I dragged my self off to the doctor. He knows I have CF and he is probably one of the few of his kind that acknowledge that there is such a thing as CFS and treats it. Anyway I got no sympathy here. His diagnoses was that if you do a marathon without training you have to pay the price. And as much as I didn’t want to hear this it is so very true. I constantly forget that in the last almost 3 years I have done no actual exercise other than yoga and a couple of gentle walks. This does not prepare you for a 5 km walk and a two hour concert in which all my senses were assaulted.

And the moral of the story…

Was the walk worth it?

Did the “claw” (the name of the U2 stage construction), get me?

If I only did the walk and the concert, or visa verse, would I still be suffering?

Or maybe I should just understand that what Mandela went through was far worse and longer, yet have you ever seen anyone who looks happier and more content?

Addict or Fashionably Intoxicated??

Posted by amber | My Diary | Posted on February 13th, 2011

I have recently been given Wellbutrin, a anti-depressant for my CFS. It contains dopamine and is meant to get me up and out. I have been dead set against anti-depressants and have avoided them like the plague for 2 years. But since I have tried everything else, my new doctor who had recently been to a CFS conference in Amsterdam, said Wellbutrin was the way to go.

Now in my world the celebs are always taking tabs – to wake up; to go to sleep; to be happy; to loose weight; to get it up; in fact just to cope with being famous. And it looks to me that initially these meds work fantastically. It is only when we hear they have gone to rehab; overdosed or committed suicide; or they are in a nasty divorce and the dirt’s been dug up, that we realise these drugs don’t always benefit. I mean when things are going swimmingly, there’s is a life of pure fabulosity. And whats not to admire and envy? Who doesn’t want it all and then some. And maybe if I try these super drugs my life might to reach meteoric heights?

In fact these medications are so common place that even prozac is suggested to cure dogs of aggression and cats of spraying!!!

So I have been on this drug for 3 weeks.

I am not miraculously cured.

I am not running around with a silly grin on my face.

I am not the happiest I have ever been.

I have not reached my true fabulosity potential.

In fact I dont even feel vaguely famous!!!

Yes, I have more energy mentally but physically my body still seems to be slow and tired.

On the other hand I seem to sweat more and sleep less.

My hair seems to be falling out … more than usual/normal. I have been told that I am more moody, anxious and argumentative. Oh, and I am swearing more – actually not possible but there you have it.

And if you read about some of the other possible side effects of this med … well don’t because it will scare the hell out of you … you are likely to be living on borrowed time. In fact two of the nastier side effects are bulimia/anorexia and suicide. But don’t worry, that’s only if you have a predisposition to those things.

Soooooooooo, I am wondering why I said “YES” to drugs and why I am not feeling superb …

Brighter tomorrows

Posted by amber | My Diary | Posted on February 1st, 2011

I guess one of the hardest things about CFS or any chronic illness for that matter is not giving up.

Never mind how many useless doctors and medicines, and homeopathic remedies and practitioners one has, or encounters, one has to believe that one person or tablet WILL make a difference.

After all if we dont have hope what do we have.

If we don’t believe that tomorrow will bring sunshine then we might as well give up now.

We need to surround ourselves with positive and understanding friends, colleagues and medical practitioners.

We need sympathetic and empathetic family and partners.

These last few days has reinforced that for me in a number of ways…

  • I tried a few new medicines and I had no bad side effects. In fact they could be making a difference!
  • I have a little more energy and though it might not last for long it is blissful.
  • My partner, once again showed me why I need him, love him and cherish his support and positive outlook.
  • I had a glorious, delicious glass of champagne, and feeling slightly off the next day was worth it.
  • Every day I am touched and inspired by those I work with and being there for them is so easy to do.I went to a new doctor and he made me feel good and hopeful. Not unreasonably so. He sounded positive and he understood and related to what I had to say. He shed new light on CFS for me and he explained everything as if I was a lay person. More to follow…

So try just for a few moments to reflect on the little rays of light in an otherwise bleak horizon.