To broach the topic...or say nothing...

[Woof!]

So this is something I've wanted to ask y'all for awhile (I'm from the south, so I can say y'all ) ...when and how do you broach the topic of your limitations with others?

Being a Type-A+ person who loves helping others when she can and knows that too much inactivity can be detrimental, I occasionally volunteer to do low-impact things side-by-side with blessedly normal folks who have "normal" limitations (hey, everyone gets the concept of a "bad" back or "bad" knees, right?). My motto is 'I do what I can until I can't and then I don't' and, yes, I know the importance of pacing since it's something I usually (but not always) do.

With people I'm only seeing once or twice, ME/CFS is never something I bring up, bummer-for-all that it is, but with people I expect to be seeing more often, I often wish I had a bright and cheerful, well-timed soundbite to say "I look good now, but that's not always the case. In the meanwhile let's enjoy this time together" without going into unnecessary detail. Got a good soundbite, anyone?

 

[andyguitar]

Got a good soundbite, anyone?

"I make the most of my good days"

 

[Rufous McKinney]

I sort of decided, should I ever be near others again, that I'd just be very matter of fact about what we deal with.

I'll likely mumble: neurological. Dealing with someting neurological.

Thats a good one as nobody seems to dare ask about that further.

 

[Woof!]

"I make the most of my good days"

I've definitely said that one before before adding a positive note about the present circumstances.

 

[Woof!]

I'll likely mumble: neurological. Dealing with someting neurological. Thats a good one as nobody seems to dare ask about that further.

Neurological. That's excellent, Ruf! Short and to the point without sounding like I want to start a pity party or get into a long conversation about health issues. Thanks!

 

[keepswimming]

I've started saying "I have a condition called CFS/ME, which means my cells don't make energy properly". Then I might briefly explain how it affects me, or what limit it's going to put on the current activity - e.g. "I can manage half an hour but then I will have to go and rest". If they seem interested I might say more. If not at least they will understand why I'm limiting my activity.

As to being bright and cheerful... I just say it with a smile

 

[keepswimming]

I like @Rufous McKinney 's suggestion too! I will remember that.

 

[Woof!]

"my cells don't make energy properly"

Short, to-the-point and informative. Love this, too!

I think one of the issues with me saying "ME/CFS" is I get tongue-tied. The term doesn't exactly roll off tired tongues! Of course the other issue is the number of people who look puzzled (or skeptic) when you use the word 'fatigue.' ("You look good to me....")

 

[keepswimming]

Short, to-the-point and informative. Love this, too!

I think one of the issues with me saying "ME/CFS" is I get tongue-tied. The term doesn't exactly roll off tired tongues! Of course the other issue is the number of people who look puzzled (or skeptic) when you use the word 'fatigue.' ("You look good to me....")

I'm glad it's helpful! I agree, I never felt people got it when I talked about fatigue... But saying my cells don't produce energy properly seems to get the point across better.

 

[Pyrrhus]

Got a good soundbite, anyone?

"I'm hanging in there."

It's accurate, without making the other person uncomfortable.

 

[Rufous McKinney]

I think one of the issues with me saying "ME/CFS" is I get tongue-tied

currently, I avoid the term CFS at all costs. It leads too often to - "Oh yeah, I had that. It went away" type conversations which on the one hand, you feel some empathy so thats nice, but on the other its just more invalidation. Mine hasn't "gone away yet". And they don't actually know...what we know.

Then uttering the ME name out loud just never computes.

"What? Huh? "

For years, my own story in my own head was Chronic Eppstein Barr. Whatever I had, that critter got me, followed me around and did not leave.

I'll say that long before I'll say ME.

 

[Rufous McKinney]

"I'm hanging in there."

well, then under the hypothetical circumstances above, you would also need to be willing to say Your Not Hanging In There.

 

[alsalyn]

my cells don't make energy properly

This is so great--making a mental note of this one!

I usually say ME/CFS, but pronounced 'mee-siffs.' People are less likely to focus on the label itself if I'm not asked what the letters stand for!

 

[Woof!]

Today I told someone having ME was like being a car with a bad alternator - once my battery is drained, that's it. Do not run for GO; do not collect more energy out of the blue. (Someone on PR said this a short time ago, but I can't remember who to send all my hugs to...)

She totally got it!

 

[Rufous McKinney]

Today I told someone having ME was like being a car with a bad alternator - once my battery is drained, that's it. Do not run for GO; do not collect more energy out of the blue. (Someone on PR said this a short time ago, but I can't remember who to send all my hugs to...)

car analogies are very helpful.

I was thinking about tires, flat tires.

You've got four great tires, and a spare but no air in the tires. Each tire is part of a body system- metabolic, neurologic, immune, hormonal and well one more.

so with no air in your tires, you go along..more slowly more wobbly and then the tires, which were fine, and working great, start getting damaged because no air...

Ok this version takes longer to explain!

 

[SnappingTurtle]

I like my doctor's suggestion to have a printed card like a business card ready to share, so I don't have to waste my energy with a speech that I am likely to forget, then attempt an impromptu one that takes even more energy away.

I have not decided yet what to put on the card but I am thinking of intorucing it with a slight modification of @ajdyguitar 's "I TRY to make the most of the few good days..." and append "... that my chronic disease allows me. If you are interested to know more, here is a card that explains it".

Borrowing from a PR member's system of using color wristbands to indicate how she feels at any given time (so that she doesn't have to waste more energy explaining and friends and family act accordingly), I am toying with the idea of explaining on the printed card a similar color coding system. I am thinking of using elastic bands but, the color writband idea works because the one on top/outermost is the indicator. Woth elastic bands, I need a way to cover the unused colors.

 

[keepswimming]

Today I told someone having ME was like being a car with a bad alternator - once my battery is drained, that's it. Do not run for GO; do not collect more energy out of the blue. (Someone on PR said this a short time ago, but I can't remember who to send all my hugs to...)

She totally got it!

That's good.

One I have used is, it's like if your phone had a faulty battery, it would drain quickly and you would have to charge it multiple times through the day. My battery is faulty and I have to rest to charge back up.

 

[Rufous McKinney]

One I have used is, it's like if your phone had a faulty battery, it would drain quickly and you would have to charge it multiple times through the day. My battery is faulty and I have to rest to charge back up

yes- important to point out we don't charge back up to full capacity. So its only partially been recharged.

Much like actual equipment I own which never had a correctly working battery..

I like my doctor's suggestion to have a printed card like a business card ready to share,

this is a great idea, you could include Where To Donate For Research, on the card as well!

 

[godlovesatrier]

I went with immune defiency today. Guy I told seemed nice and trustworthy enough. Was easier than lying about why I can't really be around groups right now.

We will see how easy it will be to remain remote.

 

[Rufous McKinney]

went with immune defiency today.

thats also a good one here lately.- there is generally more awareness of something called immune compromised folks- via the COVID saga.

For me, the eye issues which are likely autoimmune, unless the are also IH, are quite debilitating.

could not get either diagnosed on the two occasions I tried. That eye doctor request I come back for a check up.

NO thanks.