sleep and vacation

[Guest guest]

Ruthie,

Why do you think we would be hard on you? Fibro is NOT your fault!!! You are

suffering and doing the best you can!! And it is not because of you that you

and your husband are drifting apart! He took vows too.......It's his choice to

drink instead of finding a productive way to support you. If he had become ill

instead of you and you didn't try to support him and turned to alcohol, would

that be his fault? No....and wouldn't be. Ruthie, it's not your fault and it's

not all because of you. You are dealing with a lot just like the rest of us, so

why don't you come on here more often for support? We can help give you the

support your not getting from your husband.

Maybe you shouldn't go on this vacation. If you don't get your rest for a week

you are going to crash hard an wind up in a horrible flare. I won't even

consider going on one right now because they can be so draining. Especially if

your in-laws don't get it and will judge you. You don't need that. I won't go

to my in-laws anymore, but my MIL comes to stay with us....and I try to pretend

I can do things that I really can't. I'm wiped when she leaves. Maybe someone

else on here will come up with a suggestion for sleeping on a vacation that we

don't know about. That's why this group is so great since we all have great

ideas to share to make our lives a little easier. I'm sorry you are going thru

this. And you are NOT be silly and selfish!! You have a chronic and very

difficult disease! Would you say someone with MS is being silly and selfish if

they had the same concerns that you do? I don't think so......so why can't you

give yourself the same understanding and compassion? You deserve it! And if

your in-laws don't get it, that's not a reflection on you, but them and their

ignorance.

That's funny......I love to spring clean before I go anywhere too because

there's nothing like coming home to a beautiful, spotless home. I do it before

all my surgeries too. I can't relax in a messy house. It drives me

crazy..........

Give yourself a big hug from all of us and start posting more to get some much

needed support. You need to be able to share you own personal struggles to help

cope with them.

Take Care,

Jill

sleep and vacation

Hello to all and thank you for being part of my family. I hardly ever

post but I do read the postings. Right now I am so stressed about

something so silly and selfish that I needed to vent so maybe I could

get some suggestions, In two weeks we are going on vacation for a

week. It's a 6 hour drive to my in-laws and we will be going to

burg and a few other places in Virginia. My problem is sleep.

I too require at least 12 hours of sleep and wake up groggier than

when I went to bed, needing at least 3 hours to start to feel a

little better. Lately I have just started staying up for 24 hours or

more and napping for 4 hours and I wake up feeling better than if I

went to bed and slept all night. Does anyone else do this or have

recollections of doing this? Does anyone have advice for me and how I

can cope on this trip as my family does NOT understand Fibro and why

I act the way I do. I am so worried over trying to keep up with

everyone else that I have been stressing over this for weeks now and

two weeks today and we are leaving. During my pre-fibro days when I

could do things I loved to do spring cleaning before a trip so when I

came back home I could continue to enjoy my vacation. Now, just

dusting and sweeping is too much but it has to be done. Weekends are

the worse for me as my husband is home all day and the more he sees

me limping around, the more it makes him want to drink. During the

week I care for my seven year old granddaughter when she comes home

from school and I only see my husband for a few hours at night until

he goes to bed. We are drifting apart and it's all because of me and

I am having troubling handling this anymore and I am hoping someone

has advice for me. I am 48, I act like 100, I feel dead inside and

everyday is the same as the one before. My head always feels like

it's in a fog and if I could just shake my head hard enough maybe I

could clear it. Does anyone have that feeling? It's like I need to be

guided through my days and I have regressed to a child again. Thank

you for listening and try not to be too hard on me as I am hard

enough on myself. Bless you and huggs to you all............Ruthie

[Guest guest]

Hi Ruthie:

I can relate to what you are saying. Vacation for me tends to be me

wanting to rest and my husband wanting to run, run, run! I usually get

home feeling no relief and like I need a vacation to catch up!

What I find helpful is talking with a therapist. I currently have

two. I recently was diagnosed with PTSD, which is common for fibro

people. They both help by listening to these issues and giving good

feedback. I have included my therapists in my support system, which

has been a great help. My family, sisters, friends, coworkers...all

of them are understanding of my situation...even when they can't maybe

totally understand.

I also babysit for grandchildren quite a bit, but I have 6...it means

lots of weekends my husband has to help me with them. Luckily, he

loves them and is good about spending time. He took our 10-year-old

with us to DC this year to tour the city while I was working. Spending

some time with my grandchildren adds joy to my life...even so, I have

had to draw some boundaries and not take them as often as I used to.

My kids have been good about understanding this. It is nice. I am

blessed to have so much support. I pray for the same for others.

[Guest guest]

Not going on the vacation is one option.

Another is to let ev1 know in advance that you will only be able to participate

in some activities and will have to rest at the motel/hotel the rest of the

time. If this is unacceptable to them, go back to option one.

Sorry, I don't know what else to suggest. It is not your fault. It is there

attitude's that are stressing you out. I'd recommend you give them the book

" Fibromyalgia for Dummies " and have them read it. There are 2 chapters

dedicated to education the family members of fibromites. If they still don't

come around, you can try counseling.

Good luck with the vacation problem. I hope it gets resolved for you. Take

care.

Jeanne in WI

Hello to all and thank you for being part of my family. I hardly ever post but

I do read the postings. Right now I am so stressed about something so silly and

selfish that I needed to vent so maybe I could get some suggestions, In two

weeks we are going on vacation for a week. It's a 6 hour drive to my in-laws and

we will be going to

burg and a few other places in Virginia. My problem is sleep. I too

require at least 12 hours of sleep and wake up groggier than when I went to bed,

needing at least 3 hours to start to feel a little better. Lately I have just

started staying up for 24 hours or more and napping for 4 hours and I wake up

feeling better than if I went to bed and slept all night. Does anyone else do

this or have recollections of doing this? Does anyone have advice for me and how

I can cope on this trip as my family does NOT understand Fibro and why

I act the way I do. I am so worried over trying to keep up with everyone else

that I have been stressing over this for weeks now and two weeks today and we

are leaving. During my pre-fibro days when I could do things I loved to do

spring cleaning before a trip so when I came back home I could continue to enjoy

my vacation. Now, just dusting and sweeping is too much but it has to be done.

Weekends are the worse for me as my husband is home all day and the more he sees

me limping around, the more it makes him want to drink. During the week I care

for my seven year old granddaughter when she comes home from school and I only

see my husband for a few hours at night until

he goes to bed. We are drifting apart and it's all because of me and I am

having troubling handling this anymore and I am hoping someone has advice for

me. I am 48, I act like 100, I feel dead inside and

everyday is the same as the one before. My head always feels like it's in a

fog and if I could just shake my head hard enough maybe I could clear it. Does

anyone have that feeling? It's like I need to be guided through my days and I

have regressed to a child again. Thank

you for listening and try not to be too hard on me as I am hard enough on

myself. Bless you and huggs to you all............Ruthie

[Guest guest]

I'm going to beak up this response into parts to make them easier to

follow:

1. Sleep, you're right on track with knowing how much sleep you need

with Fibromyalgia. 12 hours is optimal, staying up 24 hours is normal

for FM sufferers. Grab sleep when you can, until you can work on

reaching as normal a sleep cycle as possible. People with FM rarely

reach a REM stage in their sleep cycles, which is the main cause of

the Fibro Fog upon awakening. If they do reach REM its very short and

ineffective. Also in deep sleep two important brain chemicals are

released, Serotonin and Human Growth Hormone. These chemicals are not

produced in sufficient quantities due to the abnormal sleep cycles of

the FM sufferer.

2. Dealing with the Family, this is a touchy subject and each of us

has a similar or slightly different response from family members when

we try to draw on their support when dealing with our Fibromyalgia.

This is an objective view point - Your spouse is " self medicating "

himself with the alcohol or numbing himself when the opportunity is

available to spend time with you. This kind of response is completely

unhealthy and can quickly get out of control. Also realize that you

cannot control what other people think or do. It's a matter of choice,

the family can choose to help you or not to help you. If they choose

not to, then you will have to help yourself for your own sake.

3. Your Marriage, and how you fell about it. This is like issue #2,

it's a touchy subject. We all took our marriage vows hoping our

spouses would take them as an absolute - particularly the " in sickness

and in health " part. Sickness is here and when you look around for the

spouse's support, you can't find it. Realistically, this is going to

take " willingness " to get a handle on it and the services of a health

professional.

4. Your Self Esteem, various factors regarding dealing with FM can and

do end up making you feel this way. This next statement has to, at

some point come to light - It is not your fault-. You did not choose

to have the syndrome, you are not responsible for other people's

choices, Fibromyalgia will " mess " with your head. You will have ups

and downs some days, to degrees that you will feel out of control.

Learning how to self-manage how you think and respond to the FM roller

coaster ride is the key to dealing with your day to day life.

Knowledge is the start of allowing yourself to have a better quality

of life. Arm yourself with tools that will help you cope with the FM

symptoms, be they doctors, medications, books to include a journal,

support groups including local, and remember to be good to yourself.

5. Venting, has a restorative factor. You'll feel better if you let

out whatever is bothering you. Either here on the board or you can

develop a system that will allow you to vent without lashing out at

those around you. See a qualified counselor who will give you coping

skills.

Remember the message board is here 24/7 for you and are going through

the same or similar issues. A common ground is good medicine.

[Guest guest]

>

> Hi Ruthie:

> I can relate to what you are saying. Vacation for me tends to be me

> wanting to rest and my husband wanting to run, run, run! I usually

get

> home feeling no relief and like I need a vacation to catch up!

> What I find helpful is talking with a therapist. I currently have

> two. I recently was diagnosed with PTSD, which is common for fibro

> people. They both help by listening to these issues and giving good

> feedback. I have included my therapists in my support system, which

> has been a great help. My family, sisters, friends, coworkers...all

> of them are understanding of my situation...even when they can't

maybe

> totally understand.

> I also babysit for grandchildren quite a bit, but I have 6...it

means

> lots of weekends my husband has to help me with them. Luckily, he

> loves them and is good about spending time. He took our 10-year-old

> with us to DC this year to tour the city while I was working.

Spending

> some time with my grandchildren adds joy to my life...even so, I

have

> had to draw some boundaries and not take them as often as I used

to.

> My kids have been good about understanding this. It is nice. I am

> blessed to have so much support. I pray for the same for others.

>

I have had this beast for 30 years now! First bout was in April,

1978, and it was the most horrible, awful pain I had ever had. That

year, it did not last for very long --- no longer remember time span.

Next year it was back and I called a friend of my ex's who is a

doctor and as we were living in Chicago at the time, he told me to go

to one of the big medical centers as a walk-in --- I keep remembering

it as being the hospital that is the location ER is based on, but

there are so many in that area, I can't be sure. I checked in early

the morning and was sent on a day full of seeing people in different

departments, had different tests and at the end of the day the

conclusion was that I had degenerative tissue diesase in my sterum

and ---- shock of all shocks I could take up to, ready??? 24 asprin a

day for the pain! I never took that many but since asprin and I have

been good friends since I was very small, I think my stomach must be

cast iron!!! So for a few years, the pain was pretty much localized

in my upper body -- once the pain started in my sterum, it would

radiate to my left arm, eventually encircling my body and going down

the right arm.

EX was and wasn't supportive! But the pain did eventually start

raising it's nasty head more often and I learned I could not do

somethings. One of the most touching parts about the early years

happened when I was visiting my sister and her family. Her daughter

who was probably five or six, reached up at some point during that

visit and wanted me to pick her up! Then she stopped and said " Oh, I

forgot, you can't pick me up anymore! "

But I did have a hard time explaining to a boss at one company that

there were times when I could not take the coffee pot to the ladies

room and carry the full pot back to the office. They all thought I

was nuts, but I learned to ignore some of the snide remarks.

By the mid eighties I never knew when it was hit.

Then I got a divorced and remarried, didn't have an attack for quite

sometime and for some reason, my present husband accepted that I

could not always do what I might want to do.

Over the years, I have learned to pace my self. We are presently

living in western Pennsylvania and most of our families live in

Illinois and Missouri. So when I drive back there, if I realize

before 3pm that my ability to drive another hour or so to the hotel I

have a reservation at, I call, cancel it and get a room much closer

to where I am. And while I am visiting family and friends, they all

know that I may not be able do something every day. So, I may spend

a day in the room reading or sleeping. My husband has some problems

with this when we are travelling together but for some reason that I

don't quite understand, I can usually get up and start moving so that

we might be an hour later than he really wanted us to do something.

But what is strange/interesting, is that MANY of my friends from

grade school and high school have fibro or very bad arthritis, so

they know what it is like to pace oneself.

On the other hand, I do not like spending much time around my mother-

in-law! She can trigger a flare in 4 hours!!! And I really am

concerned if we are going to have to spend much time with her when my

husband retires at the end of June and we have moved back to Illinois.

But the problem with my m-i-l is that she thinks she knows the answer

to everything and at least one of her children said she knows more

than many doctors!!

But, if I were in your position, I would try to say something to the

effect that you over did things one day and need some time to

recuperate, no need to explain the reason and if they can't accept

that, it's their problem and not yours.

[Guest guest]

***Note from Co-Owner: Yes, there really is a book called Fibromyalgia for

Dummies. It's a good book. ***

Thank you all for your kind emails about my upcoming vacation and for

offering advice. I was scared to come on here and check my email

replies as I was afraid someone would think I was being selfish about

such a silly thing. I WISH I could stay home while my husband and son

and his girlfriend go to Virginia but my husband would NEVER allow

that. He would throw such a fit and say that he wasn't going without

me and I would end up ruining a vacation that everyone worked so hard

for. My 'ideal " vacation would be to stay home by myself and do

what " I " wanted to do and when I wanted to do it. To have the house

to myself would be a dream come true, I could actually start to clean

and tear the house apart and not worry about stopping because someone

is hungry and I have to fix a meal. Don't get me wrong, my husband is

very kind to me and would do anything in the world for me but he just

doesn't get this fibro thing. Is there actually a book called, " Fibro

for Dummies " ? If so I am buying it as soon as possible. Right now I

am so tired I don't even have the energy to get out my spring clothes

for the trip, I would rather just go and buy a new wardrobe. I take

Hydrocodone and I think I am having side effects to this drug. I took

perocet and it bothered my stomach ulcers and legs so badly I

couldn't take it anymore. Does anyone else have side effects with

Hydrocodone? I take morphine at night and 4 doses of Lyrica a day,

and 3 doses of flexeril and Skelexill, (spelling). I also take

Cymbalata and Abilify and Trazadone and Estratest. Is there any other

pain meds that I can ask my pain manager about that doesn't have such

side effects? What works for others? I would love to get feedback on

this as I see my pain manager on Wednesday.

To Jill; you and I must be on the same wave length as I love to clean

before surgeries too so I can actually rest in a clean house. Thank

God I am not the only one out there like this. I am so glad my

Primary care doctor suggested I join this group so I know I am not

alone. Bless you all and many huggs..........Ruthie

[Guest guest]

Ruthie,

I am allergic to both hydrocodone and codeine. I'm a basket of fun

when I get sick and get a cough as most good cough syrups have one or

the other in them. I also cannot take percocet because it is in the

codeine family. Also, I reacted to Lyrica and am off that. Too many

allergies.......

Perhaps your pain manager or someone else can suggest something. I

know that since I've been diagnosed I have had one or two " good days "

where I didn't hurt or ache most of the day.

Call Merry Maid in to clean the house if you don't feel like it. Then

it'll be clean when you come home!

I saw where someone else got a scooter which helped with the mobility

part (I have a hard time walking too far; I get short of breath and

then my asthma/copd flares); would DH consider allowing you to rent

one for your vacation? Then perhaps you wouldn't " wear out " so fast?

I think I'm going to check out " Fibro for Dummies " as well. I try not

to say anything except in here because I don't think anyone realizes

how bad it can get.

Darlene

>

> ***Note from Co-Owner: Yes, there really is a book called

Fibromyalgia for Dummies. It's a good book. ***

>

>

>

> Thank you all for your kind emails about my upcoming vacation and

for

> offering advice. I was scared to come on here and check my email

> replies as I was afraid someone would think I was being selfish

about

> such a silly thing. I WISH I could stay home while my husband and

son

> and his girlfriend go to Virginia but my husband would NEVER allow

> that. He would throw such a fit and say that he wasn't going without

> me and I would end up ruining a vacation that everyone worked so

hard

> for. My 'ideal " vacation would be to stay home by myself and do

> what " I " wanted to do and when I wanted to do it. To have the house

> to myself would be a dream come true, I could actually start to

clean

> and tear the house apart and not worry about stopping because

someone

> is hungry and I have to fix a meal. Don't get me wrong, my husband

is

> very kind to me and would do anything in the world for me but he

just

> doesn't get this fibro thing. Is there actually a book

called, " Fibro

> for Dummies " ? If so I am buying it as soon as possible. Right now I

> am so tired I don't even have the energy to get out my spring

clothes

> for the trip, I would rather just go and buy a new wardrobe. I take

> Hydrocodone and I think I am having side effects to this drug. I

took

> perocet and it bothered my stomach ulcers and legs so badly I

> couldn't take it anymore. Does anyone else have side effects with

> Hydrocodone? I take morphine at night and 4 doses of Lyrica a day,

> and 3 doses of flexeril and Skelexill, (spelling). I also take

> Cymbalata and Abilify and Trazadone and Estratest. Is there any

other

> pain meds that I can ask my pain manager about that doesn't have

such

> side effects? What works for others? I would love to get feedback on

> this as I see my pain manager on Wednesday.

> To Jill; you and I must be on the same wave length as I love to

clean

> before surgeries too so I can actually rest in a clean house. Thank

> God I am not the only one out there like this. I am so glad my

> Primary care doctor suggested I join this group so I know I am not

> alone. Bless you all and many huggs..........Ruthie

>

[Guest guest]

>

> ***Note from Co-Owner: Yes, there really is a book called

Fibromyalgia for Dummies. It's a good book. ***

>

>

>

I have a copy here at the house, my wife who does not have FM has been

reading it and is now understanding what I am going through despite the

years of describing the symptoms. I just had to give her " the look " ,

after hearing, " well the book says x-y-z,...just like you said " . Uh-Duh