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PhillyFibro

Member
Joined
Aug 19, 2015
Messages
12
Reason
DX FIBRO
Diagnosis
03/1997
Country
US
State
Pennsylvania
Hello ... I'm PhillyFibro, and have had FMS for nearly 30 years. It was like a bad nightmare for 7 years before I was diagnosed in 1994.

OK, so I wasn't a nut job, there's a real illness here. I believed knowing what was happening would be a giant help. But it took years to find meds that helped. And one of the unexpected reactions was gradual loss of support from family and friends.

There have been many events that chopped my life to pieces, the first of course being fibro.

I've learned to understand that well people and sick people are not in the same world. Once you're ill, you are tossed out of the "river of life" and remain on the bank watching everything pass you. It just makes sense. Well people have to remain active to survive, ill people will remain mostly inactive ... and have to learn to do what we CAN, not what we want to do!

It's October 2015, and I have just one friend left who gets it and stays in touch. That's it.

My husband deserted me, the younger of my 2 sons is ridden with anxiety and decided I'm not a "good Mom, or grandmother" ... so I can only see my grandgirls 2 times a month for 2 hours. It is eating out my heart. My older son lives with me, but he is an alcoholic ... so usually is only here to sleep and shower.

Do any of you have the same problem? Loss of support from family and friends? Very often I think there's just something bad about me that drives people away. And I try to examine my behavior to see if I'm being a jerk. Mostly it just seems no one cares. No one.

I've done counseling several times ... read a lot online to see what's current in FMS care.
I don't mind being alone ... I do digital art. I do mind that no one seems to care. And now I find myself actually resenting people who remain active with friends and family.

This is kind of a jumbled writing ... yet I hope some of you who are nearly, or totally, alone will reply. I am definitely sliding down and down further each day. :cry:

Thanks for reading ... and good luck to all of us!​
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi Phillyfibro. I am so sorry that you have been so deserted. I think it is very common as even our partners and children and parents don't always get it. I have only had fibro for 8 years but have had enough already.

You are so brave living with it for so long. I have a partner although we don't live together.

Its kind of better for us to have our own space so that when i need to rest or am not having good times he can do his own thing.

Things are a bit strained at the moment as the kind of things you are talking about caused a big emotional upset a while ago and since then my fibro has changed dramatiically for the worse. It is hard for others to get it.

I was doing well and could still go out a few times a week for an hour or two albeit with my partner driving...opening heavy doors carrying any shopping etc but now i cant do any of that. I could do the house work little by little but now i can't do much of that....i try but my body wont have it.

I am sure there is nothing bad about you. This is an evil illness beyond a healthy persons wildest imaginings. My parents think i have depression and don't try hard enough...my brother just ignores it....my son is lovely but thinks i will get better ...my partner is kind but will probably run out of steam as our life together is more like carer than partner now which breaks my heart..and his.

I have only 2 friends left now and only 1 who really has stuck by me. Gentle hugs to you

Hugs to you
 
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PhillyFibro

Member
Joined
Aug 19, 2015
Messages
12
Reason
DX FIBRO
Diagnosis
03/1997
Country
US
State
Pennsylvania
Hello Willow ... many thanks for your supportive reply and for sharing experiences.

This' my first try at fibro forums, and you are a bright light of understanding and encouragement. You probably thought, as I have, that going shopping, getting in & out of the car, and then putting stuff away was too little a task to wear you out. But it does. I've managed over the years ONLY by doing what you said: stop when the "body won't have it". Easier said than done when one's been previously very active.

FMS had made me feel useless at times ... but what's made me feel just "emptied" is the continuing loss of support and contact from family and friends. I wonder if I complained too much? Did I miss just one too many event? I tried to give folks a short but definite account: "today's a really bad day ... messed up sleep". "Today's better... but the pain is always there". When I was well, I too didn't understand how illness overturns your life. But I did was able to understand that a friend was in trouble! So I guess I expected the same ... and like you, have only 2 friends left ... and 1 who really has stuck by me!

So we'll follow our body's messages ... do what we CAN, not what we want or used to. Know that you have a new buddy here who knows what you're going through: we experience the same struggle in our lives.

Big time thanks for the uplifting smiles your message brought along :) I like the "gentle hugs" idea, and ditto back to you!

PhillyFibro
 

LucyJane666

Member
Joined
Oct 10, 2015
Messages
15
Reason
DX FIBRO
Diagnosis
05/2004
Country
US
State
AZ
Hi, PhillyFibro, I understand, since no one in my family will even bother to educate themselves about FMS, much less the other autoimmune diseases that keep me sick much of the time. My mother insists that I "stop trying to be sick," (her words last week). My husband tells me that I just "need to get out of the house!" He's still nagging me to ride my motorcycle, but I honestly don't think I will ever ride it again. My adult children completely ignore me if I say anything about my 'bad day,' or 'in pain.' But they still ask me to babysit, run errands, pay for things, etc.

You're lucky to have one good, loyal friend. Work friendships dry up quickly when you no longer see each other on a daily basis, and the odds of making new friends when you have FMS and stay home most of the time are nil. One old work buddy (at least I thought she was at one time), says, when she sees me: "I wish I was retired!" She also said that she was "jealous!" I told her that she should never be jealous of me. I tried to give her an idea of what life is like, but as most people, she wasn't listening. It's hard to understand someone else' pain, especially when they don't LOOK sick.

You said, "Very often I think there's just something bad about me that drives people away. And I try to examine my behavior to see if I'm being a jerk. Mostly it just seems no one cares. No one." I concur. My mother is not speaking to me, my husband and I have a rocky relationship, and I'm about ready to give my kids up to God and let them make it on their own. It's a sad lonely life to be disabled or in chronic pain. Especially when "no one cares."

I understand your resentment for those who stay active with family and friends, and how you feel that you're on a daily downward spiral. Please don't give up because so many of us feel as you do. So you are not alone.
 

BadPatch

Member
Joined
May 17, 2015
Messages
14
Reason
DX FIBRO
Diagnosis
01/2003
Country
US
State
**
Hello ... I'm PhillyFibro, and have had FMS for nearly 30 years. It was like a bad nightmare for 7 years before I was diagnosed in 1994.

OK, so I wasn't a nut job, there's a real illness here. I believed knowing what was happening would be a giant help. But it took years to find meds that helped. And one of the unexpected reactions was gradual loss of support from family and friends.

There have been many events that chopped my life to pieces, the first of course being fibro.

I've learned to understand that well people and sick people are not in the same world. Once you're ill, you are tossed out of the "river of life" and remain on the bank watching everything pass you. It just makes sense. Well people have to remain active to survive, ill people will remain mostly inactive ... and have to learn to do what we CAN, not what we want to do!

It's October 2015, and I have just one friend left who gets it and stays in touch. That's it.

My husband deserted me, the younger of my 2 sons is ridden with anxiety and decided I'm not a "good Mom, or grandmother" ... so I can only see my grandgirls 2 times a month for 2 hours. It is eating out my heart. My older son lives with me, but he is an alcoholic ... so usually is only here to sleep and shower.

Do any of you have the same problem? Loss of support from family and friends? Very often I think there's just something bad about me that drives people away. And I try to examine my behavior to see if I'm being a jerk. Mostly it just seems no one cares. No one.

I've done counseling several times ... read a lot online to see what's current in FMS care.
I don't mind being alone ... I do digital art. I do mind that no one seems to care. And now I find myself actually resenting people who remain active with friends and family.

This is kind of a jumbled writing ... yet I hope some of you who are nearly, or totally, alone will reply. I am definitely sliding down and down further each day. :cry:

Thanks for reading ... and good luck to all of us!​

Hello PhillyFibro, et al... I had to reply to this, because-- although I normally hide my location-- I will say that I am in your general geog. area, and I, too, have been deserted! I also think it's something about the "busyness" of everyone on the East Coast, or in this messed up world? In any case, I also have had one person after the other desert me. In my case, it has to do with church problems, and rides (I don't drive-- long story). It has often caused me to lose my faith. I have friends, but most of them are long-distance relationships; every one I know locally is stressed out with other problems. Most people are too busy to help, and God knows I need it! Various agencies also don't come thru (the funding has dried up!) I too have wondered: "What am I doing wrong?" Well, the answer is for both of us: probably nothing-- it's just today's world. Most people off-line really don't care, or are busy with their own problems. The only solution seems to be to go into a nursing home (God forbid), or just stick to yourself, and hope that an angel comes thru, at the last minute (that has occurred to me on many an occasion!) So in one sense, I am NOT deserted, but it often seems that way. I will say that there is no one I can really depend on regularly-- even family. I have multiple pain problems along with fibromyalgia... well, it gets worse and worse. I don't know what the answer is, but just wanted you to know that there is someone in your area going thru a similar thing. Take care. I hope that things get better for both of us. : )
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Hi philly fibro .....how are you? You can be honest!
 
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diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Thanks Phillifibro for your response i have just read it.

You are right when we were healthy we could never have imagined the havoc this illness causes. I had a friend with fibro before I got it and we spent a lot of time together...me visiting her a bit further away as we had been neighbours for years before.

She explained pain and fatigue and we spend a lot of time chatting and drinking tea and eating cake she baked! very English

I could never have imagined she was sat/laying on the sofa with so much fatigue and pain even though i am a very compassionate person so i guess we have to forgive those who don't realize it can be this bad.....i wish it wasn't.

I kind of feel like you....could i have made more effort to keep up with friends or should i have not said what pain i am in. It is really boring for others as it's just words to them...for us it can dominate our thoughts sometimes so we tell our nearest and dearest looking for hope and reassurance.

I wish i had found this forum or maybe made a fibro friend i could phone who didn't mind listening before.

Hoping you are a touch better today.
 
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cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
03/2008
Country
USA
State
Texas
hello folks.

I understand how you feel. i too have lost some friends and family to FMS.

I finally understood why i was losing them.

First, the folks you mention are loved ones and caring friends.

They care about you and want to help. so they ask you how are you doing today?
they say if you need anything just call.. ETC.

When you show and try to explain FMS, its all about pain. pain they cant see or feel.

(see my post what is fibromyalgia) this will teach you how to show folks what fibro is and how it feels.

day after day they hear you talking about pain and how you hurt and have no strength to
get things done.

They want to help you and they cant. they cant make your pain go away.

So, they no longer want to be reminded each time they speak to you or see you that they cant help.
they begin to distance themselves from you.

As most FMS are inactive they have no one to talk to. I found that i only talked about my pains and weakness.
this will get very old very fast to your friends and family.

some peoples reaction is to run from it and never surround themselves with your pains.

some will just check in over the phone and never invite you to go any where. they are tired of hearing about your pains
and how you cant go where everyone is going. so they stop calling.

most of these things i didnt even know i was doing. I also do a lot of moaning with the muscle spasms. didn't know i was doing it.

I found out i was doing it when i had a friend paint my house. he asked my son, does the moaning ever stop? my son told him no, never stops.

This is a big part of fibro that your doctor does not explain when you get the FMS diagnosis. the things you need to learn and how to deal with
are not taught to you. so each of us is on our own.

this forum is the place to learn.

Do the things you can do. when you can do them, make a call to a friend and go do it. Once its you contacting them
to go do something the pressure is off them.

dont talk about your pains and drugs. those things get told to a doctor not a friend or family member.

the more you keep your body moving the less pains you will have. stay moving.

good luck and may you all have low pain days ahead.
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,547
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
Nice post cmetryme.......i will just reiterate i wish i come here to vent..talk about pain etc before. I think my relationships would have stayed healthier as my partner often doesn't reply when i say how much i hurt...I asked him why he is silent and he says because he feels he should be able to do something to take my suffering away and feels bad that he can't . Nobody wants to feel bad about themselves so you are spot on!
 
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