Re: relatives

September 18, 2009

I hope the SSI comes through soon. I tend to agree with you and thank G-d for

your mother being able and willing to help you. I suffered from depression and

an anxiety disorder long before I got FMS, also due to childhood trauma.

Support groups and counseling are a wonderful help. I could not do without my

therapist. She's great and helps me figure things out when others are putting me

down.

Barbara

>

> I can totally relate. As a matter of fact, when I got really sick this

summer, I ended up losing my apartment, all my furniture and had to move in with

my mother 450miles away from my kids. Because I have CFS/FM it was difficult to

diagnose what was wrong with me. I was in bed the entire summer. Three weeks

ago I was terribly ill and insisted we go to the ER. I had a Bacterial

infection and didn't know it. No fever, no " realative " pain it jut all seemed

to be part of my CFS. To make a long story short, my family 4 brothers and my

sister were extremly sceptical and my father flat out disowned me, and refused

to believe I was ill at all.

September 18, 2009

, if anything happened to my husband, I don't know what I'd do. I

have problems with my neck

and can't turn my head in traffic. The other thing ... I'm alsolutely

TERRIFIED to drive. We recently

moved to a big city. All the cars are big and all the people drive fast.

I'm afraid to even ride.

I don't know if " anxiety disorder " would get me the little bus that carried

disabled people.

It's strange about your walking. I hope they find out what it is. That

happened to my aunt also but

it was years and years ago and I don't have an information on her

condition.

People simply do not understand pain and disability. I'd think a wheel

chair would " prove " something

but ... maybe not.

I must stop now but I hope to speak with you soon on the forum.

Pamela

September 18, 2009

I truly believe the suffering of this/these illnesses would be mitigated by

understanding by relatives or friends. I got sick at 17, 25 years ago, and I

had really bad mono that just never went away. That's how I can describe it.

Somewhere along the way, probably from the chronic insomnia, I developed

Fibromyalgia. In 1995 my husband infected me with Chlamydia when we were

engaged, which led to Reiter's Syndrome (Reactive Arthritis) which is also

extremely painful, and they thought I might develop Ankylosing Spondylitis after

that, though I haven't so far and the Reiter's had pretty much cleared except

for long term joint damage and dry eyes (which I already had). And I started

out with Interstitial Cystitis when I was 16.

I have never, ever been able to get disability, though at least two doctors have

been supportive of it.

Not that many friends/family know I have this. They didn't understand why I

never worked when married the first time. They didn't understand why I had to

drop out of college multiple times, and it took 11 years to get my BS. My mom

" understands " now, but she has a severe personality disorder and often just goes

off on me, and was extremely abusive to me when I had mono, and in the years

following (part of the reason I moved out when 17 and very ill- and got much

sicker over the next few years- I knew living with her could literally kill me).

My first husband, who I probably got mono from one of the first times we dated,

left me because of this disease and my " refusing to work " and just how in

general, I'm an awful person because I wouldn't stop pretending to be sick.

Doesn't help that a marriage counselor insisted I was " just " depressed and that

I was " refusing " to help him. He left shortly after I had to go to the ER

during a weird, seizure-like instance I'm prone to, in which I begin shivering

and shiver so hard I can't move outside of that, and have broken teeth during

such episodes. At the ER, an intern wanted to admit me, so he got his

consulting doctor in, who came up pretending to examine the tremors in my hands,

grabbed it and then violently pulled me from the bed, shouting, " We have sick

people here! " He then told my husband that I " needed to be spanked " more often

and left me there.

This wasn't even my worst experience with doctors, but I'll spare you the

details. When able to work, I'm in the mental health field and have a friend

who was a teacher in high school psych, and both of us are convinced I have Post

Traumatic Stress Disorder from experiences with medical " professionals. " I now

won't go to the ER. My husband has strict orders that I won't go, unless

unconscious.

I feel the government also deserves some of the blame, as they have worked hard

since the '80's to marginalize and make fun of us, and give this disease a

loathe worthy name. How do you tell people, " Oh, I have Chronic Fatigue

Syndrome, " without almost expecting the, " Oh, I get tired, too! Maybe I have

it! " Often followed by laughter. My in-laws, though I've tried at various

junctures to explain, don't think anything is wrong with me, other than I sleep

too much (I don't- I have severe insomnia, of course, but they see me go lie

down a lot because I'm just plain exhausted, and they think I'm always

" sleeping " ). Of course, even the salt I need added to food has been explained,

and yet my mother-in-law is constantly critical of that. Unless I outright pass

out in front of them from the Neurally Mediated Hypotension and Postural

Orthostatic Tachycardia, they will never understand. Yes, my house is a mess

and I'm a failure as a woman </eyeroll>, but they do give me points for staying

home with my 11 month old. I could never, ever work and take care of my

daughter. I didn't even think I'd be able to take care of a child, but at 25

years I'm in better shape than I was in my 20's and can modify things and cope

better than I could then. Not that I get any real help, so I better do that!

My husband just pretty much ignores the whole thing and isn't much of a

caretaker- like not at all. He gets sick, it's double duty for me when it's

just a cold he's got. I'm sure many of you have experienced that! But without

disability and without health insurance if I left, and without the ability to

work, I have stayed through really, really difficult times. And yes, I do have

a child, who I adore and my life is much, much better with her in it. Of course

I do love my husband for the most part but if he was able to even advocate

for me with his parents or doctors, or if he was more understanding with me on

our own, it would be a better marriage and a better life for me. In some ways,

I'm almost lucky right now, as my daughter has Down syndrome so I'm getting some

help now because of her, and the workers she sees understand and believe in

these illnesses and are very supportive, so that's a strong positive in my life.

Life with this disease/diseases is full of compromises I never thought I'd make,

never thought I'd have to. Getting sick so young- disaster. I wasn't " proven "

yet, so people accused me of " wanting " to be sick, or trying to get attention.

'Cause yeah, women who leave home at 17 to go away to college though they are

working class and there is no financial support outside of loans and me working

30-40 hours a week on top of school- we're all essentially " lazy " and attention

seekers. If I'd wanted attention, I would have stayed with my mom. I hate

attention. I don't like doctors and won't go to them unless I absolutely must,

and unless they are very trustworthy based on our past relationship. However,

getting sick so young I do believe that my brain had some room to reorganize,

because for a number of years early on I lost the ability to read (in college!

Necessitating dropping out, etc.), but then it came back. At times my cognition

is worse and there are many words I can't find, or can't pronounciate (anyone

else have that? Because there are so many words I have knowledge of, but for

some reason can no longer pronouce many things, so I just don't use those words

anymore unless in writing). And while it sucks that I've had to be married to

have health insurance and a stable income through my husbands (this is not to

say the relationships have been about money and nothing else- but getting

married earlier than I wanted, or even than I wanted, as I was very not

pro-marriage and kind of having to stay when things have been really awful at

times, so I've had to suck up a lot when I would have left if not sick- It's

been damaging to my self-esteem and the way others treat me when they think my

relationships are awful but I " just stay anyway " ). As a woman, it is almost

intolerable to me, and as a very independent minded person, it has really

challenged how I see myself and how I relate to others. But I do feel for men

who have this, as many of them won't even have that option. So what do they do?

It may be

at least easier to survive as a woman if you can be and stay married, and your

husband can support you. Then you can " pass. " I hate how ashamed that makes me

feel, but it's the truth. I doubt men have even that.

This disease sucks incredibly, and it ruins lives. But others around us treat

us so awful. If people had just the ability to believe I'm sick, such as

someone with MS has, it would have made a huge difference in my life. There are

so many similarities between this illness and MS or lupus, but since I am not

paralyzed or have visible symptoms, and since the name this disease is commonly

known as is so degrading and ridiculous, I am treated with scorn.

Anyone else have a similar feeling regarding the difference it would make if

others were even somewhat supportive or understanding?

Sorry about the long rant!!!

September 18, 2009

August 15th was my 21st year anniversary since becoming ill with cfs,

fibromyalgia and mcs. Time does not lessen the pain, it does change how

you look at it. Finding a helpful doctor and the right combination of

medications and supplements has helped me a bunch.

Any questions ask, I'm not shy.

Take care of you, you're important to me.

Big gentle huggles,

Di (Dimntd) in Feasterville-Trevose, PA, USA )

I'm on Facebook, Flickr, LiveJournal, My Invisible Disabilities Community,

Photobucket & Pogo

Be the person your pets think you are.

pamelaneckpain@... wrote:

I don't believe anybody can understand chronic pain (unless the person

is in a wheel chair or has to stay in bed all the time) If you look ok,

it's not pain as far as they can understand. After 7 years of pain, I

understood this. I'm now going into year 8. I don't know if I can

take much more.

Pamela

September 19, 2009

,

How do you meet people? I'm new in my neighborhood and new in this big

town. I can barely go out.

When a family dinner comes, I'm just in panic. Can I make it? Will I be

sick? on and on.

I think there's no answer for me. This is my life and it's different from

others. A wheel chair wouldn't help me because the area of severe pain is

my neck and my tail bone.d

,

I don't think anyone understands my disability. I can kinda fix up and be

ok for a couple of hours.

That's how people think I can be. They don't know how difficult it is for

me. I think now that it's

impossible. Something changed in my neck ... I'm scared.

This Alliance in my only outlet ... and my husband. Thank God for him. He's

understanding but I feel

bad because I'm holding back his life.

He loves me. If I " left " he'd miss me so much. I know that. I'm scared to

leave anyway if you get my drift there.

(read between the lines)

Pamela

September 20, 2009

I'm so glad you wrote in. My experience with my mother has been the same. She

can help me financially, but nurturing is not one of her strong points. She

never did nurture, hug and kiss us kids. Now I understand that she cannot give

what she doesn't have. I've also been blessed to have learned that she does

love me...on her terms. And today, that's ok. I have to stop expecting people

to meet my needs. Only God can meet my needs. I am blessed with a wonderful

support group that gives hugs after the meeting. I get a lot of love and

support from my chosen family, not my biological family. I had to let go of the

hope that my family will be what I want them to be and just accept them the way

they are. That makes things less stressful. I " ve stopped people-pleasing and I

just take care of my own business. I'm going through another divorce, and I'm

almost through. I've made amends and I am ready to let go. It's difficult to

forgive when I hurt so bad, but I read something by Joyce Meyers that said, " if

you're in pain, feel it, embrace it, God is using it to show you something. "

And, for me, He showed me a lot.

Dr. Selfridge wrote a book on Fybro and she told me, I went to see her in

WI, that some people have actually wrote themselves healthy. It's no mistake

that we all have similar family issues.

God bless, and keep you

>

> You hit it right on the head Toni. There is really only one person that I want

to understand what I am going through, have been going through for over 25 years

and that is mo mother. I asked her to close her eyes and put herself in my

shoes. I told her I needed compassion from her, not pay my electric bill when I

get behind, or buy me something I needed. She thinks the stuff she does for me

is compassion. I want feeling, emotion, hugs, kisses, understanding, supportive.

I don't think that is going to happen for me but all I can do at this stage in

my life is pray.

> Thank-you for writing what you wrote. It filled my heart for you and yes, I do

understand.

>

> from Illinois

>

September 20, 2009

FMS is fibromyalgia. What I've done with my three little grandsons is invite

them to spend time with me one at a time. I don't know if you can do this, even

for a little while. They love to get the one-on-one attention and I enjoy their

company with very little if any stress. They are very good at remembering whose

turn is next.

lol.

Barbara

>

> Stress makes me soooo sick. I have chronic pain and it gets more severe

> every day. I don't know

> what FMS is but I do relate to your speaking of stress.

> I have to take my daughter out of my life because her three children drive

> me nuts when they come

> to my house. They are 4,2, and 3 months.

September 20, 2009

Thanks, . The only thing is I can't take iron pills because they make me so

constipated and laxatives don't work on me.

Terri

September 20, 2009

Hi Pamela again

FMS = Fibromyalgia Syndrome.

Have you seen a rheumatologist or pain specialist for your pain?? It can be

better managed. I can say this although you may not believe me yet!

I didn't believe that it could be true and it is a lot better managed now than

it was 12-18 months ago

September 20, 2009

Not sure what the law is here. I hope they would give me a precise diagnosis but

the problem is that my situation is very very complicated. I will let you know

what happens after I have seen the new specialists

It makes me feel so much better that a lot of others have relatives that dont

understand I know that sounds horrible but I just feel so alone sometimes my

husband and other friends and peer educator that I know who have FMS/CFS are the

only people who truly understand. I want my aunty to realise why I get up late

and sleep during the day is NOT because I am lazy but because I have these

conditions that do this. She seems to belive that my rheumy the one who gave me

the meds that interacted is a miracle worker. He isn't and he doens't know all

the answers, in fact I just didn't tell her about seeing anyone else because I

dont want her pestering me especially if they dont know anything or cant find

anything new!!! It might take them more than one appointment as well if I tell

her she will be pestering me forever this way if they find something that she

needs to know I can tell her if not she wont pester me!!! Makes it more simpler

thats for sure.

----- Original Message -----

From: b1write

It IS very hard when family don't understand and dismiss our problems as

minor.

I think I posted that I try to let it go, but I am much older than you (early

60's) and have dealt with a family that has both scapegoated me and called me a

hypochondriac since I was a child. At the same time, Mom frequently was keeping

me home from school because I was sick--even she could see that.

September 20, 2009

I totally agree with what you say, these conditions are not considered

disabling in Australia. I have to get help from an agency that up until 3 years

ago was solely for the elderly they have NO idea how to help me and they have no

funding to help me either. These conditions and whatever unknown thing I have

are considered temporary yet I have according to one dr had FMS for 10 years and

CFS since 2002 and have been in a wheelchair which the hospital did not want me

to do even though I cant walk can hardly stand etc since december 22nd 2008 and

was bedbound for a month before that in hospital. I was treated as though I was

making it up in hospital even though the tremors did not stop for 10 days

straight. they couldn't work out why they came on when I was awake and went away

when I was asleep. I have muscle dystonia and I looked it up on the net and it

actually says that that happens with dystonia. As soon as my rhemy saw me (in a

private hospital) he said I had dystonia and he has his theories which do NOT

make sense but at least he doesn't believe I am making it up. Now the tremors

come on when I try and stand and I can move enough to transfer to another chair,

toilet etc but they have to be high enough. Sometimes like after hydro I was so

sick I couldn't even do that 9 months after the hospital told me I didn't need a

wheelchair (and this was the private one) the hospital system here sucks. If you

go to the ER in a public hospital and are admitted you can not see your own dr.

If you go to a private one you can but you have to pay AU$200 just to walk in

the door and most ambos take you to a public hospital. I was kicked out of one

ER despite the nurses protesting but they said if it continues go to the Royal

Adelaide (which is the biggest hospital in Adelaide in the city) so we did and I

was treated as a physcho somatic patient for the whole 10 days I was there they

discharged me and I went to my rhemy without an appmt and was admitted to the

private hospital within 24 hours. It was horrible. So I too have had bad

experiences with drs. What they did to you in the ER is terrible. My friend is

working with chronic pain australia to try and make pain known as a disease so

that when you go to ER or admitted to hospital it is a recognised condition like

arthritis or something else rather than a symptom of a condition. its exciting

stuff and I hope it happens soon.

I agree if I was treated as a person with a disability instead of someone who

makes everything up I reckon that life would be nicer!!!

Not that I think that I have MS but what are the differences between FMS/CFS and

MS? Does anyone know? I read on MS Australias website that MRI scans can come

back clear but you can still be diagnosed with MS anyway and that similarly to

FMS/CFS there is no real way of diagnosing the condition

Not being able to find words is a common symptom of FMS/CFS I get it mostly when

I am fatigued but since last year I also stutter its like I know what I am

trying to say but cant get the word out or I just say you know whats that thing

called when such and such happens and usually my husband knows the answer but I

cant find the right words. Happens a lot actually. Dont know what to do about it

though

Invisible conditions are really hard as you say also like I am deaf and opposite

to what most people believe they do not notice my hearing aids. I was so

conscience of that when I first had them but because I am only 28 people dont

believe I am deaf or if they do they forget a LOT. Its annoying. Even when

people see me in the wheelchair some move out the way and are polite but you

know the thing that really bugs me we park in the disabled car parks and until

they SEE me in the wheelchair I get these awful stares cause they dont think I

am disabled cause of my age. Then they see the wheelchair and realise oh shes in

a wheelchair. The other thing is sometimes they say this is for the disabled

(before they see the chair) and I say I know I use a wheelchair and they go oh

sorry I didn't realise...Also before I used any walking aids I used public

disabled toilets cause I found the higher toilet and rail useful just when I had

FMS and CFS and nothing else well because it was an invisible disability they

got so cross this is for the disabled. Once I started using a stick cause I

couldn't walk without it they stopped complaining. Its annoying though isn't

it?? Do others have this problem??

I hope oneday that our conditons will be recognised by all medical professionals

and that our relatives and friends will do the same.

----- Original Message -----

From: sagefox

I truly believe the suffering of this/these illnesses would be mitigated by

understanding by relatives or friends. I got sick at 17, 25 years ago, and I had

really bad mono that just never went away. That's how I can describe it.

Somewhere along the way, probably from the chronic insomnia, I developed

Fibromyalgia. In 1995 my husband infected me with Chlamydia when we were

engaged, which led to Reiter's Syndrome (Reactive Arthritis) which is also

extremely painful, and they thought I might develop Ankylosing Spondylitis after

that, though I haven't so far and the Reiter's had pretty much cleared except

for long term joint damage and dry eyes (which I already had). And I started out

with Interstitial Cystitis when I was 16.

September 20, 2009

> Sure you can handle it Pamela. I'm going on over 25 years. I'm still

> alive. It is harder than hell to get through each day but I do it. I have

total

> strangers have more compassion for me than my own family. It sucks that's

> for sure.

>

Blessed ... Yes, strangers are kinder about my illness than my own family

many times. Blessed, your words

helped me. I don't feel so alone. Also, I see you made it a long, long

time.

I too will make it.... I'm too scared not to.

September 21, 2009

Hello there,

I am also someone who has suffered due to lack of support from relatives. I have

also found that total strangers can be more sympathetic. It is quite distressing

on some levels at times as it makes you feel more like you are having to fight

your own corner- it can sometimes seem that the least sympathetic people are

those who should really have the most sympathy.

I can understand how you feel over this one. I do feel constant pain emotionally

due to the lack of understanding by my family. It can seem like an uphill

battle. People say that you should hand them a leaflet etc. to educate them but

they don't really see the fundamental issue that if people are ill, some

relatives really don't care and they think that you should just get on with

things.

Take care.

September 21, 2009

> " Nobody move! I dropped me brain! "

>

nana ... I agree that this is a wonderful accepting group. I must add that

some have a wicked sense

of humor. : DD

Pamela Neckpain

September 22, 2009

, I love what you wrote. My mother was similar to yours. She loved us but

was irritable and sometimes even harsh due to her own problems that had nothing

to do with us.

I have learned that increasing my spirituality and gratitude to G-d help me have

a better attitude. Even when I have a lot of pain, it is a bit easier to handle

within this more positive framework. I am working on that " chosen " family part,

but I will get there.

Thanks for sharing.

Barbara

>

> I'm so glad you wrote in. My experience with my mother has been the same.

She can help me financially, but nurturing is not one of her strong points. She