For my friends...

I've been cancelling a lot on my friends lately. And I know that while they try to understand, sometimes it can be difficult.

So here's a list of what friends/family of CFS/FM patients should know:

1. I will cancel. Despite all my best intentions, there will always be times when I will cancel at the last minute. I'm not trying to be inconsiderate, I usually cancel only after I have tried all alternatives like coffee, rest and energy drinks and they haven't helped.

2. I will be late. I usually need to start getting ready at least 4 hrs before I go out. I need to rest after taking a shower, again after combing my hair, putting on make-up, or getting dressed. I hate being late, but it's often impossible for me to correctly gauge how much time / rest I'll need.

3. I will not understand. I get terrible brain fog. Sometimes I just won't understand what you're saying, however simple. I simply have to wait for my brain to clear - I'm not being deliberately obtuse or difficult.

4. I will forget. You may tell me something 5 times and I may still forget that you told me. With the brain fog, it can be very difficult to simply understand what's going on around me, much less remember stuff.

5. I may not be able to help. I love to help my friends in any way I can, but sometimes this is just not possible. Again, not being selfish or thoughtless, just can't do it.

6. You may not hear from me. Sometimes weeks, even months, go by and I don't call/email friends. I do think of you, it's just that talking on the phone or even spending time on the computer can be exhausting. Pls do call / mail me sometimes, even if it feels like you're always taking the initiative. It rly means a lot to me.

7. I appreciate your support. Even simple things like knowing that you will understand if I cancel go a long way in helping me. Sometimes I may need your help, other times just knowing that I have friends who truly care abt me can make me feel better.

I know it's not always easy being my friend, but I truly hope that you will still think it's worth it. I hope this helps you understand me a little bit better.

If there's anything else that CFS/fibro patients or friends / family of patients would like to add, your comments would be welcome.

Holtorf Medical Center

Today I went for my blood test. I had 9 vial of blood taken. I'm kinda chuffed abt that. Last month, there were 13 vials taken. Maybe that means they're honing in on something?

I've tried various kinds of medicines over the years - anti-depressants, anti-migraine pills, anti-epilepsy pills. I've tried allopathy, homeopathy, ayurveda, acupuncture, herbal supplements, vitamins, minerals you name it. And I know that this is the case with almost all CFS patients.

But last month I tried something new. I went to the Holtorf Medical Group, which specialises in fatigue syndromes. The founder Dr. Kent Holtorf suffered from CFS himself. He has now opened a center for "natural, prescription Bioidentical Hormone Replacement, Complex Endocrine Dysfunction, Fibromyalgia, Chronic Fatigue Syndrome, Infectious Diseases, Fatigue Syndromes and Neurological Illnesses".

It's just been over a month since I started treatment at the Holtorf center and over the years I have learnt not to get too excited about a possible treatment for my CFS, but I have to admit, I am "cautiously optimistic" about this.



Some of the reasons for my optimism are as follows:

I have been tested for hypo-thyroidism time and time again, but I was only tested for T4, and never for reverse T3. Holtorf prescribed a number of tests for me, which, in 7 years, had not been tested by any of the doctors (endocronologists, neurologists, GPs, gastroentologists) that I had visited. And some of these tests, including the reverse T3, are positive.

I know it sounds kind of whacky, but any CFS patient will understand why I whooped for joy on learning that some of the test results were positive. This was the first time I had physical proof that something was actually wrong with me! It wasn't "all in my mind"!

I don't think that the mild hypothyroidism or the other deficiencies they found are responsible for my CFS in it's entirety. However, I do believe that curing these will help my overall health and energy levels.

Till now, I couldn'y fight my illness because I didn't know what to fight. All the causes seemed invisible. But now that I have somthing to focus on, well, just let me at it!

P.S - In case youre wondering, I got all the tests and medicines given to me by Holtorf, double-checked by my GP as well as another doctor. Both doctors agreed that the diagnosis and treatment seemed correct & logical.

Ms.F.August 11, 2011 3:00 AM

Update - sorry for the long delay in writing this update, but you know how it is when you have CFS - nothing is ever done on time :)

So, to answer some questions below:
1. I did complete abt 6 months with Holtorf, and found no long term benefit.
2. It was extremely expensive, which would have been ok if it had helped, but it didn't.
3. They put me on cortisol which a couple of other docs later felt was a v bad idea.
4. I do know of a couple of people who this has rly helped. I think they do have a 'system' as someone below put it - if you fit into their 'one size fits all' philosophy it can help you, but it's certainly not a miracle cure.
5. What has helped me has been yoga and other alternative therapies like acupuncture and hypno-therapy (both were very helpful with the fibromyalgia pain).
6. For more info abt Holtorf, you can check out their site: http://www.holtorfmed.com/chronic-fatigue-syndrome-fibromyalgia.html

All the best!

Invisible illnesses & the spoon theory

It's often difficult to explain what life is like with limited energy. that's why I enjoyed reading Christine Miserandino's Spoon Theory so much.

Check it out at: butyoudontlooksick.com

I've been having a rough couple of days with the fatigue so don't have the energy to write more now. Hopefully will be back to my fab self soon :)