Re: can get going anymore My saga (long)

[Guest guest]

When I first got sick it hit me very hard and very fast. I was working full

time, going to nursing school full time and taking care of my disabled dh and my

kids.

But then I got sick with this RA and I hurt so badly, I could not even move, and

even when I did notmove I was sobbing in pain.

My family was not used to having me around in our house, our house is small..and

I did not know where to be in the house and not disturb my family. At first

they tried hard to make me feel better, but, soon, when they realized nothing

was helping, they got sad and had a had time being around me.

Of course having worked always and then going to school, I used to fantasize

about being a stay at home mom, BUT, yikes, this was NOT what I had in mind!

Becuz I hurt so much, I rarely went thru getting dressed. Eventually, feeling

helpless, hopeless and in the way, I started staying in my room. On my bed. At

first my kids would pop in and visit me in there, but, eventually they stopped.

I did not care and began to sleep off and on day and nite as pain would permit.

I missed working, I missed having a life, and I missed being busy and being able

to do things for myself. All my life since age 12 I had worked usually 2 jobs

and rarely slept more than 3 hours a nite.

My old rhuemy was not aggressive at all treating my symptoms. So, I languished

that way for a few YEARS. My older kids were heartbroken that fun loving

playful mom now was hidden away in a bed 24-7. My youngest child really did not

know me any differently.

But then my new rheumy changed my meds and treatement. He lit a spark under me.

I remember him telling me in March or April that he was gonna help me feel LOTS

better. I remember looking at him and well, I was not so confident in his

ability to do that, but I also got scared. I know that sounds really weird, but

I thought gosh, if I feel better, what will I do? What will people expect from

me? It took me a long time to get so fatigued and down and immobile and get

used to it. I am NOT a " go getter " by nature, my " previous " life pre RA kinda

just happened, but who would I be if not in pain and quiet and in my bed? Would

I be in my familys way? Would I become a shopoholic, wandering the mall

spending money I do not have? Pre RA I used to exhaust my dh and kids with my

energy. I worked hard and played harder. I kept an immaculate house. After I

got sick, my family kinda liked my lack of concern over the messes in the house.

I was really nervous about what if I really did feel better? Change is hard for

some people.

Even if it is good change.

Well, at first I was driven by nicotine withdrawl and prednisone mania so I

kinda got in everyones way and paced a lot and was restless and goofy. Scared

of being considered crabby, I got silly. I kinda walked around my house in

circles, and giggled a lot and I sang goofy kids songs. But I was still tired.

Doc and I played with the pred dose and mtx dose and then I started Humira, too.

The pain like magic disappeared. But I still spent a lot of time in my bed and

in my room. After so long of disuse my body gets tired. It is weak. Thats

depressing.

I convinced myself to plant a couple flowers in a pot and put it outside. Every

day I would force myself to go outside, and check my little pot.

My kids thought it silly how I would go out and peek at it every day, but

gradually I began to be excited abut it. DId any new blooms open today? Did it

need water? This poor little plant depended onn me. LOL. ANd if I made myself

go check it and take care of it no matter how I felt, it would reward me with

pretty flowers.

Each day it was the tiniest bit easier to trek out there to check it.

Eventually I found myself concerning myself with gosh, it needs a little table

to sit on. Then, oh gosh the lawn looks so shabby around it. Well, YIKES the

first time I tried to mow the lawn, (which I used to do after working 16 hours

but before cooking dinner and doing the laundry) I can tell you, WHEW! I got

the mower out. Had to rest 4 hours. It took me 3 days to mow my teeny tiny

itty bitty front lawn. But my flower pot sure looked better on it's little

table on a mowed lawn. LOL.

This week I managed to mow the whole front yard at one time and it only took me

an hour! Each little thing I accomplish motivates me more. It also builds up

my stamina and energy level a little more.

Until the last week or so, tho, I had not yet forced myself to do things I do

not enjoy. So, that meant we are still living in the filth and mess that

happened thru my years of isolation and pain. BUT this week, I did begin to

tackle some of the chores. And I do still take a nap or a break when I feel

like it.

For me, the key was to find something that would help me push myself a little.

Took baby steps....and slowly built up some steam.

I am sure part of my fatigue was from pain. It takes a LOT of energy to be in

pain. IMO part of my fatigue was meds. While I was off meds due to changing

docs, my fatigue was a little different. I do think the kick I got from the

pred helped push me, and I KNOW the turmoil from trying to quit smoking pushed

me into hyperness. But even once the pain was gone and the meds were not

fatiguing me so much, I was still in the habit of inactivity and listlessness.

That was very hard to break for me.

SO this week I have been really busy again, almost like the " old me " BUT then

yesterday? ACK! I hurt my knee..or maybe it is breakthru RA? I was

devastated. Scared. But today it is better again.

When I was most sick, I used an electric scooter and used that to conserve and

ration my energy. (and sometimes I used it cuz I literally could not walk from

pain and swelling)

SOmething I learned from being so sick? Life is short, and we tend to spend a

LOT of time and energy doing things that really in the BIG picture, noone will

really care if we did them or not. I used to be very rigid and did things just

becuz we are " supposed to " or we are expected to.....I was anal about my

housework. I worked overtime (yes even on top of my already busy schedule) I

ironed TSHIRTS. I wa shed floors that were not dirty, but it was " that day of

the week " or whatever.

And then when I was so sick, NOTHING got done AT ALL (I had spoiled my family SO

bad, they did NOTHING- and we ate in restaurants or had food delivered- YIKES on

the credit cards!!!!)

I am now learning to make priorities. Noone will die if the dishes do not get

done within an hour of dinner. T shirts do not usually require ironing. My dog

does not need a bath twice a week. My teens CAN wear a pair of jeans a 2nd day.

I know this becuz.while I was sick none of us died even tho nothing got done.

BUT I wonder if my rigid thinking maybe killed some fun and pleasure in life?

Now that I feel better, I plan to use my time and energy for things that bring

me pleasure.

I think sometimes that helps with feeling fatigued, too.

And yes, my little potted plant is VERY happy out in my yard, now. ANd it is

rewarding me with some very pretty flowers. ANd yes, it is still the first

thing I do every day. The other day I cut off a bloom and wrapped it in a paper

towel with water and wrapped that in foil and carried the flower around with me

while I went about my day.

I hope you can find some little thing you enjoy that can help perk you up. And

maybe your doc can find a way to help with the fatigue.

[Guest guest]

Hiya Dreamer,I enjoyed your coming to terms with RA,it happend to me

too.I run the home like my life depended on it being clean and spick

and span,and worked every hour god sent.

Until we realise that we have to respect RA,we cannot live with it

easily thats for sure.Good luck for the future.

--- In , " dreamer_plus " <dreamer_plus@...>

wrote:

>

> When I first got sick it hit me very hard and very fast. I was

working full time, going to nursing school full time and taking care

of my disabled dh and my kids.

> But then I got sick with this RA and I hurt so badly, I could not

even move, and even when I did notmove I was sobbing in pain.

>

> My family was not used to having me around in our house, our house

is small..and I did not know where to be in the house and not

disturb my family. At first they tried hard to make me feel better,

but, soon, when they realized nothing was helping, they got sad and

had a had time being around me.

> Of course having worked always and then going to school, I used to

fantasize about being a stay at home mom, BUT, yikes, this was NOT

what I had in mind!

>

> Becuz I hurt so much, I rarely went thru getting dressed.

Eventually, feeling helpless, hopeless and in the way, I started

staying in my room. On my bed. At first my kids would pop in and

visit me in there, but, eventually they stopped. I did not care and

began to sleep off and on day and nite as pain would permit.

> I missed working, I missed having a life, and I missed being busy

and being able to do things for myself. All my life since age 12 I

had worked usually 2 jobs and rarely slept more than 3 hours a

nite.

>

> My old rhuemy was not aggressive at all treating my symptoms. So,

I languished that way for a few YEARS. My older kids were

heartbroken that fun loving playful mom now was hidden away in a bed

24-7. My youngest child really did not know me any differently.

>

> But then my new rheumy changed my meds and treatement. He lit a

spark under me. I remember him telling me in March or April that he

was gonna help me feel LOTS better. I remember looking at him and

well, I was not so confident in his ability to do that, but I also

got scared. I know that sounds really weird, but I thought gosh, if

I feel better, what will I do? What will people expect from me? It

took me a long time to get so fatigued and down and immobile and get

used to it. I am NOT a " go getter " by nature, my " previous " life

pre RA kinda just happened, but who would I be if not in pain and

quiet and in my bed? Would I be in my familys way? Would I become

a shopoholic, wandering the mall spending money I do not have? Pre

RA I used to exhaust my dh and kids with my energy. I worked hard

and played harder. I kept an immaculate house. After I got sick,

my family kinda liked my lack of concern over the messes in the

house. I was really nervous about what if I really did feel better?

Change is hard for some people.

> Even if it is good change.

>

> Well, at first I was driven by nicotine withdrawl and prednisone

mania so I kinda got in everyones way and paced a lot and was

restless and goofy. Scared of being considered crabby, I got

silly. I kinda walked around my house in circles, and giggled a lot

and I sang goofy kids songs. But I was still tired. Doc and I

played with the pred dose and mtx dose and then I started Humira,

too. The pain like magic disappeared. But I still spent a lot of

time in my bed and in my room. After so long of disuse my body gets

tired. It is weak. Thats depressing.

> I convinced myself to plant a couple flowers in a pot and put it

outside. Every day I would force myself to go outside, and check my

little pot.

> My kids thought it silly how I would go out and peek at it every

day, but gradually I began to be excited abut it. DId any new

blooms open today? Did it need water? This poor little plant

depended onn me. LOL. ANd if I made myself go check it and take

care of it no matter how I felt, it would reward me with pretty

flowers.

> Each day it was the tiniest bit easier to trek out there to check

it. Eventually I found myself concerning myself with gosh, it needs

a little table to sit on. Then, oh gosh the lawn looks so shabby

around it. Well, YIKES the first time I tried to mow the lawn,

(which I used to do after working 16 hours but before cooking dinner

and doing the laundry) I can tell you, WHEW! I got the mower out.

Had to rest 4 hours. It took me 3 days to mow my teeny tiny itty

bitty front lawn. But my flower pot sure looked better on it's

little table on a mowed lawn. LOL.

>

> This week I managed to mow the whole front yard at one time and it

only took me an hour! Each little thing I accomplish motivates me

more. It also builds up my stamina and energy level a little more.

>

> Until the last week or so, tho, I had not yet forced myself to do

things I do not enjoy. So, that meant we are still living in the

filth and mess that happened thru my years of isolation and pain.

BUT this week, I did begin to tackle some of the chores. And I do

still take a nap or a break when I feel like it.

>

> For me, the key was to find something that would help me push

myself a little. Took baby steps....and slowly built up some

steam.

> I am sure part of my fatigue was from pain. It takes a LOT of

energy to be in pain. IMO part of my fatigue was meds. While I was

off meds due to changing docs, my fatigue was a little different. I

do think the kick I got from the pred helped push me, and I KNOW the

turmoil from trying to quit smoking pushed me into hyperness. But

even once the pain was gone and the meds were not fatiguing me so

much, I was still in the habit of inactivity and listlessness. That

was very hard to break for me.

>

> SO this week I have been really busy again, almost like the " old

me " BUT then yesterday? ACK! I hurt my knee..or maybe it is

breakthru RA? I was devastated. Scared. But today it is better

again.

>

> When I was most sick, I used an electric scooter and used that to

conserve and ration my energy. (and sometimes I used it cuz I

literally could not walk from pain and swelling)

>

> SOmething I learned from being so sick? Life is short, and we

tend to spend a LOT of time and energy doing things that really in

the BIG picture, noone will really care if we did them or not. I

used to be very rigid and did things just becuz we are " supposed to "

or we are expected to.....I was anal about my housework. I worked

overtime (yes even on top of my already busy schedule) I ironed

TSHIRTS. I wa shed floors that were not dirty, but it was " that day

of the week " or whatever.

> And then when I was so sick, NOTHING got done AT ALL (I had

spoiled my family SO bad, they did NOTHING- and we ate in

restaurants or had food delivered- YIKES on the credit cards!!!!)

> I am now learning to make priorities. Noone will die if the

dishes do not get done within an hour of dinner. T shirts do not

usually require ironing. My dog does not need a bath twice a week.

My teens CAN wear a pair of jeans a 2nd day. I know this

becuz.while I was sick none of us died even tho nothing got done.

BUT I wonder if my rigid thinking maybe killed some fun and pleasure

in life?

> Now that I feel better, I plan to use my time and energy for

things that bring me pleasure.

> I think sometimes that helps with feeling fatigued, too.

>

> And yes, my little potted plant is VERY happy out in my yard,

now. ANd it is rewarding me with some very pretty flowers. ANd

yes, it is still the first thing I do every day. The other day I

cut off a bloom and wrapped it in a paper towel with water and

wrapped that in foil and carried the flower around with me while I

went about my day.

>

> I hope you can find some little thing you enjoy that can help perk

you up. And maybe your doc can find a way to help with the fatigue.

>