qscholar: support groups

[Guest guest]

Hello, that sounds like a great support group, sounds like the group

covers all issues, but where do you get all that energy, Im tired

just reading about you, are you riding a bike also?(curious) Thanks

for your input. Hugs......Joanne

[Guest guest]

In LUPIES , " mariy220032001 " <mariy220032001@y...>

wrote:

Hello, that sounds like a great support group, sounds like the group

covers all issues, but where do you get all that energy, Im tired

just reading about you, are you riding a bike also?(curious) Thanks

for your input. Hugs......Joanne

Hi again Joanne,

Thank you for asking, feel free to ask me questions anytime, as you

can see I love typing.

LOL, I suffer from Fibro and CFS also. I truly cannot tell you where

I get the energy. I guess its the passion that drives me. I am

however learning to pace myself. I have crashed numerous times

attempting to be superwoman. It is definately a no no. I am a

thunderbolter as my ex-Rhuemy put it. I am one of those types that

when I feel good I feel totally normal, but when I feel bad every

realm of my being suffer and I crash. My late Father, (who was

suspected of having lupus but died before it could be determined

which autoimmune disease he actually had) used to always tell me that

I am too high strung.

No I do not plan to ride a bike. Unfortunately I have actually

forgotten how to ride one.(I wouldn't have done it anyway) Many will

be at the event for support only. For the most part the outings

involve sitting in an audience taking notes. We also carpool and that

helps.

My Facilitator is currently in the 3rd year of her remission. She

usually return to the part time workforce when this happens, but this

time she chose to just devote her time to lupus awareness. Because of

the low stress level, her current remission has lasted longer than

any other thus far.

There are times when I miss events too. 2 weeks ago I was all set to

go to a Kay cosmetics workshop to hear about a sun sensitive

product line and whammo! my potassium dropped and I spent a week in

bed with tingling legs and feet. So I just try to make use of the

good days by directing what energy I have left to activities such as

the ones mentioned.

I am hoping that I stay well enough to follow through on my current

schedule. The one I surely do not want to miss is the annual Spring

meeting. One of the workshop topics will be medication affordability

and how to get the help needed.

This is the time of year that things kind of get hopping in Michigan.

During the Winter, I only devote my time to our local support group

that meet only once a month. My fatigue is usually at it's worst in

the winter during the day time hours. Our Meetings are held in the

evening, so I have been able to manage.

Thanks again, qscholar