new article "Top Ten Things Not to Say to Someone with Chronic Fatigue Syndrome"

[Jody]

CJ,

Not to worry, I understood what you were saying about it -- that so often people will suggest one thing or another, as though it could "magically" fix us.

And I have the same reaction you do to those types of suggestions.

I just had to chuckle when I read your post, because the example you gave was one that I had been thinking about for my article.

I've used them too and find them to be relaxing. Maybe even having a bit of a helpful detox-ing action sometimes.

Alright! It will be one of the things I mention in my article about things that can help us ease through the holiday season, after all.

It's too bad it can't just magically "fix" us ...

 

[Finch]

Salt baths!

Hi - I use the epsom salt baths - not as often as I should. Sometimes they can be magical, sometimes they can be, well, disappointing. If you can handle it, the thing to do is to soak until you get good and sweaty. Then be sure to wash off, or your body will just reabsorb the toxins you release with the sweating. I've heard of adding baking soda and hydrogen peroxide to the bath but haven't tried that yet.

Do FIR saunas make you sweat?

 

[Frickly]

Finch

My son's doctor does recommend adding baking soda with the epson salt. I admit we do not do these baths very often but it is another thing on my list of things I should do.

 

[CJB]

Okay - one more recipe from me. this is Martha Stewart's bath salts recipe and I don't often have the energy/motivation to make it, but I'm very happy with myself when I do:

3/4 cup Epsom salt
1/4 cup baking soda
1-1/2 cups coarse sea salt
10 drops essential oils
2-3 drops food coloring

Mix in a large bowl. Store in glass bottles.


Mmmmmm. I keep this recipe in a box with the essential oils and it smells heavenly. Obviously, if you're sensitive to fragrance, you can leave it out.

Best bubble bath ever: Seventh Generation dish soap

 

[Marylib]

for Jody

Thanks so much Jody. Your heart shines through your words.

 

[Finch]

CJ - thanks for that recipe - it looks yummy!

I have Seventh Generation dish soap! Don't much care for bubble baths, though. Weird, I know. Good to know, anyway!

 

[CJB]

LOL! Just add enough 7th Generation to keep the ring off the side of the tub. That's why I started doing it. Who has enough energy to scrub the tub.

 

[Jody]

Thanks so much Jody. Your heart shines through your words.

That is very sweet, Marylib.

Thank you.

 

[liverock]

" Well its not like you have cancer, is it?".

This is one of the cruellest things anyone can say, because in many ways this fatigue is very similar to someone with cancer, but there is no way to make people believe that.

Well now I can , thanks to a one of a series of mitochondrial tests I had done recently by Acumen Lab.

The test measured Cellular DNA, which measures the amount of dead cells floating around in the blood.

PWC's have a high level of cell die off especially when overdoing it and crashing. These dead cells cause an immune reaction which is thought to be the main cause of post exertional malaise.

According to the lab report,

" Cellular DNA are present in malignancy,stroke and CFS. Positive results have been found in 93% of CFS sufferers up to a duration of 5 years. In those with with CFS who have suffered from 5 to 14 years it was found in 75%."

I came in at high level on the results, now if anyone starts on me I can just pull out the report and prove that the fatigue we suffer is in the same bracket as those with cancer.

Let the fight back against the doubters begin.

 

[Finch]

Wow - good one lightrock! I've never heard of that one. Why don't all the doctors know this? So frustrating.

 

[Dreambirdie]

"All you need is a steak and a new outfit." is on the list for me. (thank you mom)

 

[Tammie]

When I read, " 'You don't look sick.' This one used to really bother me. Till it occurred to me that maybe it would be worse if I looked as bad as I felt. Didn't want THAT peering back at me from the mirror," I burst out laughing....all too true.

Usually my response to being told how good I look is along the lines of "Thank you, I am so glad I don't look as bad as I feel." or "Thank you. If I looked half as bad as I felt, I would be scaring everyone away." Gets the message across w/o appearing to be ungrateful (if they were trying to compliment me) or w/o stooping to their level (if they were being mean).

As to the first one, that is my absolute biggest pet peeve....makes me want to slap the person every time! I recently realized that my dad finally got it (at least more so than he used to) when I made a comment about being really tired and he said that he was too, but then he qualified it as "but not anything like you are" or something along those lines (he was not being sarcastic or anything - he genuinely understood that it was different)....I was mentally jumping up and down and cheering, bc I cannot tell you how many times in the past I have tried to explain to him that it is not the same type of tired.

And the one you mentioned about prayer......I am a Christian and have struggled with this type of thing a lot.....finally realized that there are people in the Bible like Job, whom God Himself said was "a righteous man, like no other", and yet who went thru tremendous pain, suffering, loss, and illness....and kept rt on praying and praising God.....I challenge anyone to try to say that Job's suffering happened bc he wasn't praying enough, didn't have enough faith, etc.....and there are certainly other exps on the Bible, too, of Christian heroes who suffered....not to mention all those places where it talks about love and compassion, etc

Can you tell that this article hit home?!

 

[Tammie]

" Well its not like you have cancer, is it?".

This is one of the cruellest things anyone can say, because in many ways this fatigue is very similar to someone with cancer, but there is no way to make people believe that.
:

Yeah, this one really bothers me, too....and the thing is that quite honestly I have often wished that it were cancer, bc many times they either get better or they die (and then they are no longer suffering)....this is not to say that people with cancer have it easy or anything - I do feel bad for them, too, but I really hate that kind of comment

One of the written testimonies to the CFSAC meeting in Oct was by someone who had had cancer and now has CFS - she said that the cancer was much easier to handle....she also said that her dtr had recently been diagnosed with cancer and that she was rejoicing that it was not CFS

 

[gracenote]

looking good or not

When I read, " 'You don't look sick.' This one used to really bother me. Till it occurred to me that maybe it would be worse if I looked as bad as I felt. Didn't want THAT peering back at me from the mirror," I burst out laughing....all too true.

Usually my response to being told how good I look is along the lines of "Thank you, I am so glad I don't look as bad as I feel." or "Thank you. If I looked half as bad as I felt, I would be scaring everyone away." Gets the message across w/o appearing to be ungrateful (if they were trying to compliment me) or w/o stooping to their level (if they were being mean).

Tammie, great responses. I get told that I "look good" or "look well" a lot and have never known what to say in response.

But one day, when I thought I was feeling pretty good and doing pretty well, having what I thought was a "good" day, I had one of my instructors tell me, while looking very concerned, that I didn't look well at all. Now THAT was really disconcerting.

 

[Tammie]

Tammie, great responses. I get told that I "look good" or "look well" a lot and have never known what to say in response.

But one day, when I thought I was feeling pretty good and doing pretty well, having what I thought was a "good" day, I had one of my instructors tell me, while looking very concerned, that I didn't look well at all. Now THAT was really disconcerting.

Thanks!

As to your good day, I have had that happen, too, and you're rt, it is disconcerting.

And, now I have gained some weight, lost some hair, and been having problems with dandruff, so I probably won't be getting the "you look good" comments much more, and I don't like that either .......perhaps it should just be illegal to comment on one another's appearance, regardless!

 

[Jody]

"All you need is a steak and a new outfit." is on the list for me. (thank you mom)

LOL Dreambirdie,

While it is true that I DO need a steak and a new outfit ... it isn't ALL I need ...

 

[Jody]

When I read, " 'You don't look sick.' This one used to really bother me. Till it occurred to me that maybe it would be worse if I looked as bad as I felt. Didn't want THAT peering back at me from the mirror," I burst out laughing....all too true.

Usually my response to being told how good I look is along the lines of "Thank you, I am so glad I don't look as bad as I feel." or "Thank you. If I looked half as bad as I felt, I would be scaring everyone away." Gets the message across w/o appearing to be ungrateful (if they were trying to compliment me) or w/o stooping to their level (if they were being mean).

As to the first one, that is my absolute biggest pet peeve....makes me want to slap the person every time! I recently realized that my dad finally got it (at least more so than he used to) when I made a comment about being really tired and he said that he was too, but then he qualified it as "but not anything like you are" or something along those lines (he was not being sarcastic or anything - he genuinely understood that it was different)....I was mentally jumping up and down and cheering, bc I cannot tell you how many times in the past I have tried to explain to him that it is not the same type of tired.

And the one you mentioned about prayer......I am a Christian and have struggled with this type of thing a lot.....finally realized that there are people in the Bible like Job, whom God Himself said was "a righteous man, like no other", and yet who went thru tremendous pain, suffering, loss, and illness....and kept rt on praying and praising God.....I challenge anyone to try to say that Job's suffering happened bc he wasn't praying enough, didn't have enough faith, etc.....and there are certainly other exps on the Bible, too, of Christian heroes who suffered....not to mention all those places where it talks about love and compassion, etc

Can you tell that this article hit home?!

Tammie,

Oh yeah. I discern that you were affected by this piece. Picked up on that.

These points ... they all drive us nuts.

 

[Tammie]

Tammie,

Oh yeah. I discern that you were affected by this piece. Picked up on that.

LOL

I have to tell you, your articles and comments are among the very few things that have been making me laugh lately.....& I SOOO need to laugh.....so thanks!

 

[Jody]

Tammie,

Glad to be of service.

Laughter is good medicine.