Re: everyday life....

[Guest guest]

Janet,

I am reminded of the 90's when I was still trying to work. I didn't have a

name for my condition. I just knew something wasn't right.

I walked into a coffee shop before work in hopes that a cup of coffee would

help. The guy serving took one look at me and said something to the affect

that...I should just run away and not go to work today.

I found that very amusing and it helped. I could just run away. But, choose

not too.

Then I was offered a new job at a new town. I did OK for about a year and a

half.still knowing something was wrong.

Then I woke up one morning not able to go to work no matter how I tried. The

strange thing is that several others at work at the same problem.

Since docs once again said there was nothing wrong and that all my tests

scores showed I was a walking picture of health I asked them to release me to go

back to work.

I tried to return to work 3 times. All three times, my body completely shut

down on me. The first time after the first day. The second time after about 3

days. And the 3rd time after about two weeks.

(I was working 3 days, sleeping around the clock 4 days due to holidays and

then working again.

I now am not able to drive myself. I do have a power chair that helps me get

out and about or do things around the house when I am able. That has made life

a lot easier for short periods of time.

I miss working. I have hopes of returning to work.

I don't know what the answers are. I don't know how long you have been on

treatment.

My hope is that you will improve with treatment and life will once again not

be so physically hard on you.

I, too, hope that I will be able to return to work.

I had plans of purchasing a home again and putting money away for retirement

and paying of student loans.

I had not planned on living in low income housing and receiving SSI and

having $80 a month for food to live on.

But, I am thankful for these things and for the people who have helped along

the way. I am thankful for my LLMD who has given me hope.

It doesn't make sense that I had to see over 40 doctors before I found one

that had the same goal I had...dx, treat and help me return to work.

I continue to send letters off to political figures in hopes that others will

not go through what we are going through.

The answers are out there.

PS My daughter kept me going a long time too. I am so thankful that I was

able to do that and that my body didn't crash on me until she was out and on her

own.

I don't know what I would have done if it had stopped on me when she was

still at home.

[Guest guest]

Jeannie,

I have stayed away from family and some friends due to the lack of

understanding.

It is difficult. I don't know if I would have understood if things had been

reversed.

I also have yet to figure out when I can expect to do something simple like

go to the local coffee shop for a cup of coffee and when I can expect that I

will not be able to do this.

If anyone has been able to find a way to figure out a pattern to this let me

know.

I would like to hear what others have been able to do. It helps me know that

there is still a world out there with people living normal lives.

It also gives me hope that I too will one day be living a normal life again.

I was able to go to church this last Sunday and to lunch afterwards. That was

a big surprise as I usually am not able to do this.

I also was able to go to see the movie The Passion much later that

day....10pm in fact. Since there was a waiting line, my friend got a blanket

she had in

the truck and I laid down on it in the waiting line for over an hour.

I don't know if I would have done this if I had known ahead of time that I

would have had to wait for an hour outside the theater to get in, but it all

worked out all right. We had traveled an hour to get there so I didn't want to

have my friend drive back home.

I also am thankful for this friend. She has been good. She tells the docs how

I use to do more than she ever would even think about and now I can do so

much less. Whets up?

Of course most docs don't know or don't even pretend to care so this makes it

worse.

I am rambling here now. Time to focus on something good.

You all take care and thanks for letting me vent.

PS Today is one of those days where even making my own cup of coffee is not a

possibility and I wait it out.

The good thing is that I do have the computer next to my bed and I can use

the keyboard to communicate and my eyes are not doing strange things right now.

The keyboard is on my legs as I am lying down. The strange thing is that I

can't type long. My hands first get ice cold as if the blood is being cut off.

This happens with my feet also when I am on them too long.

Keep breathing!

[Guest guest]

Jessie

Ditto here. I can't make plans either very much. Goes w/the territory.

[ ] everyday life....

I was supposed to be in NYC today for a work conference, but nooooo -

my body decided to lay the full herx on me last night - joint pain,

headache, nausea, all sorts of weird aches and pains, etc. So I am

home today, wallowing. I feel like it's impossible to make solid

plans, because everything is so variable with this illness.

Does anyone else have trouble with this? How the heck do you have a

normal life - or don't you? I feel guilty for dragging everyone down

with me.

~Jessie

[Guest guest]

katherine,

Don't know if this helps, but I do farmwork. Right now I have a virus which

slows me down. I do housework and feed/hay/water the livestock every afternoon.

Re: [ ] everyday life....

Jeannie,

I have stayed away from family and some friends due to the lack of

understanding.

It is difficult. I don't know if I would have understood if things had been

reversed.

I also have yet to figure out when I can expect to do something simple like

go to the local coffee shop for a cup of coffee and when I can expect that I

will not be able to do this.

If anyone has been able to find a way to figure out a pattern to this let me

know.

I would like to hear what others have been able to do. It helps me know that

there is still a world out there with people living normal lives.

It also gives me hope that I too will one day be living a normal life again.

I was able to go to church this last Sunday and to lunch afterwards. That was

a big surprise as I usually am not able to do this.

I also was able to go to see the movie The Passion much later that

day....10pm in fact. Since there was a waiting line, my friend got a blanket

she had in

the truck and I laid down on it in the waiting line for over an hour.

I don't know if I would have done this if I had known ahead of time that I

would have had to wait for an hour outside the theater to get in, but it all

worked out all right. We had traveled an hour to get there so I didn't want to

have my friend drive back home.

I also am thankful for this friend. She has been good. She tells the docs how

I use to do more than she ever would even think about and now I can do so

much less. Whets up?

Of course most docs don't know or don't even pretend to care so this makes it

worse.

I am rambling here now. Time to focus on something good.

You all take care and thanks for letting me vent.

PS Today is one of those days where even making my own cup of coffee is not a

possibility and I wait it out.

The good thing is that I do have the computer next to my bed and I can use

the keyboard to communicate and my eyes are not doing strange things right

now.

The keyboard is on my legs as I am lying down. The strange thing is that I

can't type long. My hands first get ice cold as if the blood is being cut off.

This happens with my feet also when I am on them too long.

Keep breathing!

[Guest guest]

It is so good to have lymeaid and lymenet to turn to....actually it is the

people on these sites.

I don't know about you, but I probably would be running across the fields

screaming and waving my arms if it were not for these sites. Smile.

That is if I could run. HA! I must admit sometimes I scream and run in my

mind.

(Kate)