Re: Work, Fatigue, and limits?

[Guest guest]

hey holly!

after 12 yrs of complaining someone has finally put a name to all of my

ailments and wrapped them tightly into a ball and wrote fibromyalgia & CFS on it

and threw it at me and hit me over the head!!!!!!!!!!!!!!!!!! Thank God! I

knew i wasn't going insane and wasn't making all of these things up. started

out with headaches and it was right after i had just had my 1st child at the age

of 19, 9 lbs and 8 ozs...she was so big! she tore me but i had her

naturally...She is definitely a God-Sent Child! she cooks for us, she cleans

for us, she helps the youngest with her homework, she does the

clothes...etcetcetc. SHe knows when i should stop, just like your husband

knows. They have been living with us for the last couple of years. They see us

at our lowest! My youngest who is 6 shaved her mamas legs and underarms because

her mama just couldn't do it. Anyway, what i am trying to get at in all this

mumbo jumbo is that we as fibro/cfs victims have to learn who we are

after the fibro. I do not let the fibro run my life but it has definitely put

a wrench in the plans. I know that if i work fulltime, then i am not going to

be able to do alot around the house. guess who does it? my girls. I know that

if i want to take them to a b-day party, that i must make sure thats the only

plans and go home and rest after the party, instead of going home and washing

the dog or cleaning out the fridge....because if i do those things, i'm going to

pay for it the next day laid up in the bed in agony. so work on you!!!! if

people get angry/upset about your limitations then thats there problem, not

yours! take care of numero uno! i think i'm done. billie

Holly <hollybgroovin2003@...> wrote:

Hope everyone is doing well today. I just have a couple of questions

today. I am home on short term disability and and trying to learn

what living with RA and lupus means to me. Does everyone have

overwhelming fatigue? I get up in the morning, take a shower, then

lay back down. I get up, make the bed, and have to lay back down

again. It seems like I have to rest sooo much, I am exhausted. The

last 2 nights I have slept very well, but still I am so tired. Is

this normal? Also who still able to work and how long were those, who

are now on disability, able to work after they first started having

symptoms. Just onw more question. When my husband came home last

night he saw that I had made the bed, did one load of laundry, and

started dinner. He was proud of me even though I was so upset that I

physically wasn't able to do more like I used to. After dinner he

finished my chores, gave the kids there bath and let me rest. It

seems that he understand my limits better than I do. Has anyone else

experienced this? And is that even possible? Sorry for the long

post, and thanks for your time. Best wishes, Holly

[Guest guest]

hey holly!

after 12 yrs of complaining someone has finally put a name to all of my

ailments and wrapped them tightly into a ball and wrote fibromyalgia & CFS on it

and threw it at me and hit me over the head!!!!!!!!!!!!!!!!!! Thank God! I

knew i wasn't going insane and wasn't making all of these things up. started

out with headaches and it was right after i had just had my 1st child at the age

of 19, 9 lbs and 8 ozs...she was so big! she tore me but i had her

naturally...She is definitely a God-Sent Child! she cooks for us, she cleans

for us, she helps the youngest with her homework, she does the

clothes...etcetcetc. SHe knows when i should stop, just like your husband

knows. They have been living with us for the last couple of years. They see us

at our lowest! My youngest who is 6 shaved her mamas legs and underarms because

her mama just couldn't do it. Anyway, what i am trying to get at in all this

mumbo jumbo is that we as fibro/cfs victims have to learn who we are

after the fibro. I do not let the fibro run my life but it has definitely put

a wrench in the plans. I know that if i work fulltime, then i am not going to

be able to do alot around the house. guess who does it? my girls. I know that

if i want to take them to a b-day party, that i must make sure thats the only

plans and go home and rest after the party, instead of going home and washing

the dog or cleaning out the fridge....because if i do those things, i'm going to

pay for it the next day laid up in the bed in agony. so work on you!!!! if

people get angry/upset about your limitations then thats there problem, not

yours! take care of numero uno! i think i'm done. billie

Holly <hollybgroovin2003@...> wrote:

Hope everyone is doing well today. I just have a couple of questions

today. I am home on short term disability and and trying to learn

what living with RA and lupus means to me. Does everyone have

overwhelming fatigue? I get up in the morning, take a shower, then

lay back down. I get up, make the bed, and have to lay back down

again. It seems like I have to rest sooo much, I am exhausted. The

last 2 nights I have slept very well, but still I am so tired. Is

this normal? Also who still able to work and how long were those, who

are now on disability, able to work after they first started having

symptoms. Just onw more question. When my husband came home last

night he saw that I had made the bed, did one load of laundry, and

started dinner. He was proud of me even though I was so upset that I

physically wasn't able to do more like I used to. After dinner he

finished my chores, gave the kids there bath and let me rest. It

seems that he understand my limits better than I do. Has anyone else

experienced this? And is that even possible? Sorry for the long

post, and thanks for your time. Best wishes, Holly

[Guest guest]

when I first got sick, it hit hard and fast and intense. Intense pain that came

on very sudden and made me literally scream, even faint. my old rheumy and new

rheumy think mine was triggered by some vaccinations I got, but, who knows for

sure?

These intense pains would come up sudeenly and be so severe the air current in

the room made me scream. I literally could not move. Nothing our local ER

offered gave any relief. Eventually I sorta drifted off into a never never land

in my mind for some months. I stayed in my room, alone, in my bed, out of my

mind, dozing in and out of the world, often shrieking in pain.

Eventually the pain level decreased dramatically. THANK GOODNESS!

Now the pain is nowhere near that intensity. Not even close. But, I sure could

not work that way, truth is I could not do ANYTHING. SOmetimes hubby or one of

the kids would feed me. But work? Heck I could not even move.

As I slowly came back to the world, I stayed tired. The tiredness makes me

nuts. when this illness struck, I had been working a full time job and overtime

and going to college and commuting an hour each way, and taking care of an

invalid husband and I have 3 kids, 2 of which are disabled.

HA! just going potty was a major chore for me.

Gradually I have settled into a routine that for an average day, I wake, wake

the kids for school, nap. wake and shower, nap have a sandwhich, nap, greet

kids from school. MAYBE attempt to make dinner. nap. eat a small bit of

dinner. bedtime.

On days I go to shop? I hafta squeeze it in and not shower and not make dinner.

If I hafta be at on eof their schools for something? same thing, I cannot

shower or make dinner the same day, usually.

BUT slowly I have been able to add in a few more activities here and there if I

take advantage of better days and I have learned to be spontaneous, LOL. If I am

having a good day, I change our whole day and off we go to a movie or concert.

or whatever.

I also guard my energy and use it MY way. I use a scooter for longer walks,

like going thru the kids school at conferences or getting across the park. Or

going thru the store.

My clothes are now no fuss.

I no longer straighten the couch cushions 6 times a day just cuz someone mussed

them. I got a comforter for my bed instead of a bedspread, so making the bed is

a breeze. I no longer vacumme daily. I settle for weekly.

Little changes you develop as you go, ones that work for you. Ones that fit

your own priorities. Gradually you learn ways to accomodate the changes in your

life.

- In , " Holly " <hollybgroovin2003@...> wrote:

>

> Hope everyone is doing well today. I just have a couple of questions

> today. I am home on short term disability and and trying to learn

> what living with RA and lupus means to me. Does everyone have

> overwhelming fatigue? I get up in the morning, take a shower, then

> lay back down. I get up, make the bed, and have to lay back down

> again. It seems like I have to rest sooo much, I am exhausted. The

> last 2 nights I have slept very well, but still I am so tired. Is

> this normal? Also who still able to work and how long were those, who

> are now on disability, able to work after they first started having

> symptoms. Just onw more question. When my husband came home last

> night he saw that I had made the bed, did one load of laundry, and

> started dinner. He was proud of me even though I was so upset that I

> physically wasn't able to do more like I used to. After dinner he

> finished my chores, gave the kids there bath and let me rest. It

> seems that he understand my limits better than I do. Has anyone else

> experienced this? And is that even possible? Sorry for the long

> post, and thanks for your time. Best wishes, Holly

>

[Guest guest]

Hi Holly,

Yes! I very much relate to what you are going through, thank for

putting it into words.

I was diagnosed with RA about a month ago, after 3 months of tests,

tests and more tests. I am on Relafen and methotrexate. The

methotrexate puts a strain on my weekends due to the Brain Fog. Does

the brain fog lessen with time on the meds I wonder?

I have a full time job and am a single mom of a 19 month old. I used

to be very active and now the smallest things cause me pain and -even

more so- a lot of fatigue.

I worry about depression because of my limitations.

I agree with the fact that others possibly see the fatigue and starin

before we do ourselves.

I am fortunate to have a supportive boyfriend but my moods and fatigue

scare him a little too.

Thank you for sharing your experiences.

I hope to learn a lot from this group!

>

> Hope everyone is doing well today. I just have a couple of questions

> today. I am home on short term disability and and trying to learn

> what living with RA and lupus means to me. Does everyone have

> overwhelming fatigue? I get up in the morning, take a shower, then

> lay back down. I get up, make the bed, and have to lay back down

> again. It seems like I have to rest sooo much, I am exhausted. The

> last 2 nights I have slept very well, but still I am so tired. Is

> this normal? Also who still able to work and how long were those, who

> are now on disability, able to work after they first started having

> symptoms. Just onw more question. When my husband came home last

> night he saw that I had made the bed, did one load of laundry, and

> started dinner. He was proud of me even though I was so upset that I

> physically wasn't able to do more like I used to. After dinner he

> finished my chores, gave the kids there bath and let me rest. It

> seems that he understand my limits better than I do. Has anyone else

> experienced this? And is that even possible? Sorry for the long

> post, and thanks for your time. Best wishes, Holly

>

[Guest guest]

Holly, besides having RA, I am also getting on up there in age (66).

After I get up, I don't need any naps during the day because I get up

so late to begin with, LOL. I can't get used to Daylight Saving Time,

either, but it makes me even later getting up, even though it's the

same time that it was last week. I don't know if it's good for someone

to sleep as long as I do or not. But since I'm retired, I can do it.

Sue

On Wednesday, April 5, 2006, at 01:34 PM, Holly wrote:

> Does everyone have

> overwhelming fatigue? I get up in the morning, take a shower, then

> lay back down. I get up, make the bed, and have to lay back down

> again. It seems like I have to rest sooo much, I am exhausted.

[Guest guest]

Hi Holly;

I'm embarassed to say that I got up to brush my teeth today, ate

enough food to take my meds and went back to bed. This is day 3 of

this behavior after feeling relatively good last week. I feel so

worthless and depressed....

Praying for better days,

e

>

> > Does everyone have

> > overwhelming fatigue? I get up in the morning, take a shower,

then

> > lay back down. I get up, make the bed, and have to lay back

down

> > again. It seems like I have to rest sooo much, I am exhausted.

>

[Guest guest]

Holly,

You have a very supportive hubby, and that is so wonderful. Some are

not so lucky, it's hard for family to understand. I have been on

SSA, a little over three years. I am always fatigued, it's really

controlling my life, and I don't like it. I can't hardly do anything

right now. I sure get enough rest time, but it doesn't do any good.

My doctor doesn't seem to get it. So, I would say, yes it's normal,

it goes along with your illness. I do a little at a time, just do

the best you can. When I clean the house, I do one room at a time.

Hey, it's not going anywhere,lol It's hard, but you have to change

your life, and it's not easy. My mind is like a race car, but my

body is like a model T. Take care, Tawny

--- In , " Holly " <hollybgroovin2003@...>

wrote:

>

> Hope everyone is doing well today. I just have a couple of

questions

> today. I am home on short term disability and and trying to learn

> what living with RA and lupus means to me. Does everyone have

> overwhelming fatigue? I get up in the morning, take a shower, then

> lay back down. I get up, make the bed, and have to lay back down

> again. It seems like I have to rest sooo much, I am exhausted. The

> last 2 nights I have slept very well, but still I am so tired. Is

> this normal? Also who still able to work and how long were those,

who

> are now on disability, able to work after they first started having

> symptoms. Just onw more question. When my husband came home last

> night he saw that I had made the bed, did one load of laundry, and

> started dinner. He was proud of me even though I was so upset that

I

> physically wasn't able to do more like I used to. After dinner he

> finished my chores, gave the kids there bath and let me rest. It

> seems that he understand my limits better than I do. Has anyone

else

> experienced this? And is that even possible? Sorry for the long

> post, and thanks for your time. Best wishes, Holly

>

[Guest guest]

Hi Holly,

I to am currently on disability after leaving work last November due to injury

from lifting a client.

I have now been told that that was probably the trigger for my recent Fibro

diagnosis.

I to battle with fatigue, pain etc as well as running a house and raising three

boys, all I can say is listen to your body when it says no than thats your

answer don't push yourself to hard and on the good days don't over do it as you

can bet the next day will be a bad one.

You are so lucky to have such a supportive husband!!!!!

take care

in oz

[ ] Work, Fatigue, and limits?

Hope everyone is doing well today. I just have a couple of questions

today. I am home on short term disability and and trying to learn

what living with RA and lupus means to me. Does everyone have

overwhelming fatigue? I get up in the morning, take a shower, then

lay back down. I get up, make the bed, and have to lay back down

again. It seems like I have to rest sooo much, I am exhausted. The

last 2 nights I have slept very well, but still I am so tired. Is

this normal? Also who still able to work and how long were those, who

are now on disability, able to work after they first started having

symptoms. Just onw more question. When my husband came home last

night he saw that I had made the bed, did one load of laundry, and

started dinner. He was proud of me even though I was so upset that I

physically wasn't able to do more like I used to. After dinner he

finished my chores, gave the kids there bath and let me rest. It

seems that he understand my limits better than I do. Has anyone else

experienced this? And is that even possible? Sorry for the long

post, and thanks for your time. Best wishes, Holly

[Guest guest]

well you mine as well not feel bad about it because its going to happen. accept

it, watch some tv, read a book, or whatever you can do. don't beat yourself up

over it. doesn't help at all.

e <doggedame@...> wrote: Hi Holly;

I'm embarassed to say that I got up to brush my teeth today, ate

enough food to take my meds and went back to bed. This is day 3 of

this behavior after feeling relatively good last week. I feel so

worthless and depressed....

Praying for better days,

e

>

> > Does everyone have

> > overwhelming fatigue? I get up in the morning, take a shower,

then

> > lay back down. I get up, make the bed, and have to lay back

down

> > again. It seems like I have to rest sooo much, I am exhausted.

>

[Guest guest]

Hello,

I was recently diagnosed with RA 3 months ago and just joined this

group. I am looking for more support groups so any info would

greatly help (especially for those that are younger).

I was surprised with the diagnosis since I just turned 31 (many

think it doesn't happen until after 40/50). I have a 2 year old and

1 year old so I have to stay active to keep up with them. I'm

currently on plaquenil but my doc is adding low dose methotrexate

since my pains haven't stopped. Luckily my MRIs show that there has

been no erosion/damage yet. Still, I feel incredibly fatigued. I

don't get a good night's rest very often (motherhood), but find even

when I do - I'm still very tired. I've started exercising and get

winded very easily. QUESTION: Is the fatigue RA related even being

on meds? Will methotrexate make me more tired than I already am?

I'm bummed about all of this since I still hope to be active and get

to run around with my kids for many years to come. But the fatigue

more than the pain is more bothersome (probably b/c I'm in such an

early stage). My doc said the next few years are critical in

preventing damage.

Any advice would be very appreciated.

Thank you for reading,

Smita

> >

> > > Does everyone have

> > > overwhelming fatigue? I get up in the morning, take a shower,

> then

> > > lay back down. I get up, make the bed, and have to lay back

> down

> > > again. It seems like I have to rest sooo much, I am exhausted.

> >

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Methotrexate did not make me more tired. It made me less tired because

it took some of the pain and inflammation away.

Sue

On Thursday, April 6, 2006, at 08:27 PM, basak_s wrote:

> QUESTION: Is the fatigue RA related even being

> on meds? Will methotrexate make me more tired than I already am?

[Guest guest]

Makes sense. Who can sleep while in pain.

Sue <marysue@...> wrote:

Methotrexate did not make me more tired. It made me less tired because

it took some of the pain and inflammation away.

Sue

On Thursday, April 6, 2006, at 08:27 PM, basak_s wrote:

> QUESTION: Is the fatigue RA related even being

> on meds? Will methotrexate make me more tired than I already am?