RE: Close family with no clue

[Guest guest]

Hi Taffy, well, as wrong-headed as your sis & Mum’s advice may be, at least

they care…which is more than can be said about my family! Perhaps, if you

talk with them nicely (and I know how hard this can be!), you could give

them some information as to HOW they may be best able to help…not by sitting

around & theorizing in your absence (and not understanding the facts), but

by doing little things, like taking you grocery shopping (or doing it for

you, depending on how ill you are) and running other errands, taking you for

tiny, non-exhausting outings, tidying up a bit, changing the bed, doing

laundry…oh, I can think of a million things!

In fact, PWCFS/ME do sometimes develop heart issues over the years, so your

sis may not be too far off the mark after all! And our symptoms, especially

the stamina issues, can mimic heart disease quite well. Seem to me that a

lot can happen in 3 years. However, most cardiologists don’t know, or can’t

access, the right tests to show the particular cardiac issues we deal with.

I totally hear you, that often people can’t believe that it is all due to

the CFS, so they have to try and think of other explanations for what ails

you.

Have you tried giving them a simple CFS/ME handout that does explain things?

I know from experience that this often doesn’t work, but it’s worth a try. I

know you’re just venting, and how frustrating it can be, but I could only

wish that my family would talk about it, care about me, and generally give a

rat’s ass about my situation. They simply think I’m nuts. Period.

Here’s a wish that you get some “pep in your step” very soon! TC, Aylwin xox