Processing: Conversation with Carl

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Carl Said >>It can be very hard to accept privately, let alone reveal

publically, the difficulties you are experiencing. The difficult challenges you

face and deal with. Especially when there are some you cannot conquer. Thanks

for telling us. >>

I know alot of people who have MCS, lyme and co-infections, CFS/ME. Most lyme

folks I know ar enot so severe with MCS that they have to leave their homes, but

many are very impacted. Some are questioning mold and some very much need to in

my opinion.

I am starting to wonder how much is going on with me is truly lyme and

company...it is easy to lump all symptoms as " lyme " .. I am beginning to see

connections with laundry room and neuro-inflammation where as before I might

have said.. lyme..

Im not sure if folks effected by mold and company (meaning the mold colony

habitat) have CFS, gait issues, crazy nerve firings, creepy nerve sensations..

and I am not sure any more what is what.

>>What I read between the lines is how you attempt to deal with

uncertainty. We all abhor uncertainty. We want absolute facts,

absolute knowledge, absolute solutions, magic bullets, and

absolute future. We want the suffering to stop. Now!>>

Yes.. the nuances are so hard to comprehend and deal with because they are not

absolute. Absolute feels so much safer and faster. .do this and its done. And I

will probably follow some absolutes for sanity's sake and because I dont want to

put myself through a torturing decision making process.. I will probably throw

out all my books and stuffed furniture just to get it done and over with.

But I realize.. what about next time? Esp with my daughters computer.. its a

laptop and not as dusty as a desk top but its dusty.. gets dust in the keys..

was not even purchased when the house had stachy growing and I am still not sure

what I am going to do.

I can only take this so far.

There is no absolute reaction,either, no perfect reaction. We do the best we can

with what we know and keep learning I am guessing not just about what to do the

right way but who am I in all this and what is right for me and you cant know

that until you make a move, a decision.

>>One of the more difficult factors of any chronic condition is that

there is a reason it is called chronic. Chronic means there is no

cure. Or, at least, not yet.

If no cure then we are left at the mercy of not knowing if it will get worse or

better, when, and how will it leave us in our life. We are hard-wired to fight

not knowing, to obliterate ignorance, to

conquer life! And when we can't we feel failure, weakness and

defeat. Isolation. And intense fear!>>

Yes... we are hard wired to fight now knowing.. thats so very true. Fight or

flight.. trying to know is a way to fight.. its fighting to stay alive and

healthy. And its hard to let go of this fighting (which of course is not a bad

thing) even when it is making us sicker.. I see this in the lyme community with

my circle of friends.We talk about this and watch ourselves go back and forth

trying to settle on a perspective that feels balanced, and it is very difficult,

esp when not every answer is an absolute. We reach the painful edge and back

off. The search for the answer (which never comes, esp since the cure is

" unknown " )gets so relentless, its painful.

Yes.. It is terrifying not to have absolutes OR not to be able to make personal

sense of all the incoming info. Not moving feels devastating, but moving is

terrifying.

It does come down to personal sense because the answers can be so relative and

because long term illness is life changing. It is personal. Just like the

solutions are... though there have to be some absolutes in there.

>>How do we deal with conflicting information? We search the

internet and participate in groups like this one and more often

than not come away even more confused. How do we know if we

are in a burning building or in a non-burning building but perceive

it as burning? Others say you must leave. But others don't leave

and successfully fix their house. How do you figure out what is

true for you? What if you decide wrong?>>

That about sums it up. And it looks like there are times the answer is just not

clear. And times when we just make peace with our decisions.. very difficult for

a second guesser who worries about making the right decision the first time. Esp

one who questions everything and esp whe info comes in from all directions. So

you go insane or pick a " fact " or fact.. and go with it. Which can be a blessing

or a curse depending.

The man I ran into at the grocery store who told me he recovered from mold

illness just left his house with chlid and wife.. found another to rent.. and

his house is in foreclosure. He is in a rough financial position but he is

happy with his decision. He is 90% better. He is happy to be alive. He is not

second guessing. Did he have to? I dont know. But he is happy with his decision.

he brought some things over, reacted to them then trashed them.

He doesnt seem to linger on decisions and he didnt test his new house.. he

seemed to be getting better and better and that was how he judged his decision.

He still has issues and is working on them.. addressing gut issues. He " cross

contaminated " by brining some things in but when he realized he reacted, he got

rid of those things and I dont think he lingered on it. He is at peace with the

decisions he made.

>>We must listen to the experience of others and test it to see if it is

also true for us. There is a reason there is no cure. Nobody

knows. Yet. For most people. And you are a specific individual

whose condition may be the only one in the world exactly that

way.>>

True.. not all issues may be due to mold or lyme as well. Which takes us back to

the not knowing.

>>Moving on with life as best we can is what we must do. For some

that means a life of desparate lonliness. For others it's limited but

not isolated. Many eventually figure out enough and have a body

capable of recovering quickly - like your sister.>>

Or the man I met in the grocery store. Im not sure how much MCS my sister had..

she def had mold exposure and if she shares my HLA type, difficulty detoxing

from it.. her solution was to not call her illness anything but dysautonomia

which she sees as dysfunction of the autonomic nervous system. She knew it was

not all in her head so she didnt conflict over that. I think by not breaking

her illness down into smaller sub-labels it helped her, not going into the

details helped her in a spiritual, emotional way .. not sure how that might

apply to anyone else.. but I do think a bout that with lyme and company because

the more you delve into it, the more pathogens and other culprits pop up and

terrain theory starts to sound reasonable and terrain starts to expand into the

body mind, etc.

She also did not have the luxury to be able to chat with others and figure so

much out.. she was alone.... she had to act on instinct and was at the mercy or

blessing of life unfolding.. and thank goodness that instinct or luck was on her

side. She got out of the moldy basement apt. She survived the stroke. She had my

parents taking care of her financially as well as her children.

Ive envied the fact she didnt have to figure much out. She developed a faith in

herself and a higher power that I envy. The man at gro store is the same.. he

didnt think so much... he just did and let go it seems. If he reacted to

somthing, he threw it out and I think forgot about it. Im not sure if he has

reacted to his new home and if so he was able to sort out quickly what it was

and " fix " it. Some people are very good at sorting these things out while some

of us arent.

He in fact had good luck with some absolutes..he ditched the house and he;s done

with it.. paying a price but he is at peace with his decision.

>>Good luck with your journey. Focus on what you try and what

happens. Not on what happens to others. Focus on your unique

adventure. Let us know what you discover.>>

It is an adventure, scary and deeply profound. I dont know about all people who

recover from a lengthy illness but most I have run into have discovered so many

good things about themselves and have walked out of the experience feeling as if

they are richer people. I know others who are still sick who will say the same

thing.

Right now I need to make some decisions and stop tormenting myself over them and

get out of here.

Thanks, Carl...

Robin