new member and feeling good in spite of chronic illness

[Guest guest]

Darlene,

I am not sure that I have a mitrochrondial disease, but I frequent this list

because my doctor believes that I am sick on a cellular level. I have

dysautonomia (dysfunction of the autonomic nervous system) with postural

orthostatic tacycardia (POTS) --meaning my heart races and I feel dizzy when I

stand (I get some control from taking a beta blocker). I have orthostatic

intolerance and exersice intolerance, chronic fatigue, fibromyalgia, multiple

chemical sensitivities, allergies with asthma, and severe sun sensitivity.

I know what it is like to have no energy. I have been this way for over 25 years

now. It is impossible to live a " normal " life, and I have suffered times of

depression because of my condition.

HOWEVER, I am now 58 years old and I have a wonderful life in spite of the fact

that my husband has stage 4 cancer! And I have recently stopped hormone

replacement so I am also having hot flashes, insomonia, sweats and chills on top

of the dysautonomia symptoms. I also started a new business right at the time my

husband was diagnosed (June) that is making me work harder than I could ever

imagine while being a cancer caregiver. And I am HAPPY.

So YES, I think depression must be working on you. It does not always have to be

a big, in-your-face kind of depression. Chronic illness puts limits on normal

life and it becomes almost normal to have some degree of depression because of

it. I don't fully understand why I am doing so well in spite of everything that

is wrong, but I have figured out some things that have contributed to my good

mental state in the midst of all my problems. Here is my list. If anyone else

reading this has anything to add, I want to hear it.

1. Being creative. (You are certainly that with your children's books.) My work

is doing that for me. I too, am a children's writer. In 1990 Macmillan published

my young adult novel, Secrets of a Summer Spy. Then I turned to writing for the

book packagers, providing content for both teacher and student texts for

elementary schools. Now I have started my own business making jigsaw puzzles

with grade-leveled readers on them that build reading and language skills. I

figured out how to do this and tested my puzzles in a school and they do help

kids read. I applied for a patent, and now I am a one-woman business to get them

out there on the market. It is a tremendous task -- I have thousands of puzzles

just sitting in a warehouse that charges me rent on how many are in there. This

is motivating me greatly.

2. Having control of something, anything. Even thought I can't control my

husband's cancer, I can go with him to get his chemotherapy, I can nap with him,

I can make sure he gets enough hydration during chemo, I can write new puzzles.

I can prune one shrub in my yard on a good day. We have a fall invasion of box

elder bugs here--they are all over the house bricks around the door and we

couldn't get the door open, so about 4 times a day, I go out there with a spray

bottle of dish soap and a broom and now on day 4 they are almost all gone. So I

have control over the bugs at the door.

3. Keeping contact with family/friends. We have 2 grandchildren ages 2 and 4 and

if more than about 10 days go by we make a point to see them. One thing we do is

every season, we make a trip to the shoe store and buy their shoes. It will soon

be time to take them for their winter boots. I also call one of my good woman

friends just to share a joke at least once a day.

4. Getting enough sleep. I usually take naps and I also seem to need about 10

hours at night. However I have not needed naps lately, in spite of all my

symptoms and I think this is because I am happy.

5. The most important thing of all for me has been to concentrate on what I CAN

do and not dwell on what I CAN'T do. I think of myself as The Little Engine That

Could and I think I can, I think I can. I think up of all the things I can

still do and I do them. I have learned I can sit at a computer, I can write, I

can encourage others, I can help kids read. The heck with all the other stuff.

This attitude does not mean that my symptoms and limitations go away, it means I

have just learned to coexist peacfully with them.

Here is an example. Yesterday I was at the hospital with my husband who was

going in for chemo. We were sitting in a lounge waiting for them to put him in a

room (his chemo is give overnight as an inpatient) and the cell phone rang and

it was a reporter wanting a story on me about the puzzles, so I went out into

the hall to get away from the lounge TV. While standing there, answering her

questions, my POTS symptoms came on (dizziness and headache and brain fog) so I

sat down on the floor. I almost got run over by a zamboni-like floor cleaning

machine that came by. I said to the reporter, sorry about the noise--a zamboni

with a mop just passed by and then I finished the interview. I had to sit there

a few minutes after I hung up before I could get up. If I had had to sit there

for an hour, I would have done it.

Here are some things I tell myself:

If I wait to feel better before living a full life, I may be waiting around the

rest of my life.

When walking through He**, just keep walking.

and my favorite quote from Mother Goose

" For every ailment under the sun

there is a remedy of there is none

If there be one, try and find it

If there be none, never mind it. "

Sorry this post is long. I really, really want to inspire others with chronic

limitations. Sharing is one thing that helps me.

Darlene, if you want to tell me about your children's books I would love to hear

what you are doing. You can email me at: writeplace@...

If anyone would care to look at my website, it is at:

http://astorypiecebypiece.com Building a website is something I found that I

can do.

Michigan Jan

[Guest guest]

Wow - think I will have to put this on the wall! Your website is lovely Jan.

Many thks Pamela

new member and feeling good in spite of chronic illness

....I don't fully understand why I am doing so well in spite of everything

that is wrong, but I have figured out some things that have contributed to my

good mental state in the midst of all my problems. Here is my list. If anyone

else reading this has anything to add, I want to hear it.

1. Being creative. (You are certainly that with your children's books.) My

work is doing that for me. I too, am a children's writer. In 1990 Macmillan

published my young adult novel, Secrets of a Summer Spy. Then I turned to

writing for the book packagers, providing content for both teacher and student

texts for elementary schools. Now I have started my own business making jigsaw

puzzles with grade-leveled readers on them that build reading and language

skills. I figured out how to do this and tested my puzzles in a school and they

do help kids read. I applied for a patent, and now I am a one-woman business to

get them out there on the market. It is a tremendous task -- I have thousands of

puzzles just sitting in a warehouse that charges me rent on how many are in

there. This is motivating me greatly.

2. Having control of something, anything. Even thought I can't control my

husband's cancer, I can go with him to get his chemotherapy, I can nap with him,

I can make sure he gets enough hydration during chemo, I can write new puzzles.

I can prune one shrub in my yard on a good day. We have a fall invasion of box

elder bugs here--they are all over the house bricks around the door and we

couldn't get the door open, so about 4 times a day, I go out there with a spray

bottle of dish soap and a broom and now on day 4 they are almost all gone. So I

have control over the bugs at the door.

3. Keeping contact with family/friends. We have 2 grandchildren ages 2 and 4

and if more than about 10 days go by we make a point to see them. One thing we

do is every season, we make a trip to the shoe store and buy their shoes. It

will soon be time to take them for their winter boots. I also call one of my

good woman friends just to share a joke at least once a day.

4. Getting enough sleep. I usually take naps and I also seem to need about 10

hours at night. However I have not needed naps lately, in spite of all my

symptoms and I think this is because I am happy.

5. The most important thing of all for me has been to concentrate on what I

CAN do and not dwell on what I CAN'T do. I think of myself as The Little Engine

That Could and I think I can, I think I can. I think up of all the things I can

still do and I do them. I have learned I can sit at a computer, I can write, I

can encourage others, I can help kids read. The heck with all the other stuff.

This attitude does not mean that my symptoms and limitations go away, it means I

have just learned to coexist peacfully with them. Here are some things I tell

myself:

If I wait to feel better before living a full life, I may be waiting around

the rest of my life. When walking through He**, just keep walking. and my

favorite quote from Mother Goose

" For every ailment under the sun

there is a remedy or there is none

If there be one, try and find it

If there be none, never mind it. "

I really, really want to inspire others with chronic limitations. Sharing is

one thing that helps me.Darlene, if you want to tell me about your children's

books I would love to hear what you are doing. You can email me at:

writeplace@... If anyone would care to look at my website, it is at:

http://astorypiecebypiece.com Building a website is something I found that I

can do.

Michigan Jan