Re: Need support close to tears

[Guest guest]

Donna-Marie,

Take a breath! Don't judge yourself! What is " normal " for you may not be

" normal " for someone else! If you need to go to bed, do it. No one can feel

your pain or take care of you but you! What you need and experience today is

different from what you needed and experienced yesterday, and will be different

from what you need and experience tomorrow! The only person who can truly

understand what you're going through is someone who walks a mile in your shoes.

You are amazing for reaching out! You made it through this minute and all we

need to focus on is making it through the next minute! Hell, call me if you

need to!

At another time, if you think it may help, there are other people with the same

diagnosis who can speak to your family about your experiences, and how they can

help support you, what they can do, how they can cope, (sometimes family members

just get so frustrated by the illness that they take it out on the person who is

ill), they can call too!

Be well,

Jen

914/751-5670 home

917/318-3133 cell

> Donna-Marie wrote:

> I keep getting feelings that I should be getting over this being in pain every

day but I can't. None of my family truly understand. I also forget what I am

doing countless times today. I found I am always tired again today I had to go

to bed in the afternoon. Is this normal?

[Guest guest]

Hi Donna-Marie,

 

Me too, I am so tired of being tired and trying to cope everyday with this

Chronic pain I just want to crawl in bed and cry my eyes out.  I am taking

aspirin after I eat to help with the inflammation of whatever is going on in my

joints, my back and legs kill me sometimes.  It sucks, I know. 

 

The pain that you are feeling can really mess with your mind/memory.  I have to

double/triple check what I am doing to make sure I am doing everything right.  I

am a 49 years young at heart woman but my body is otherwise.

 

Feel free to email me if you want.  I admit it, I am lonely. I do not live alone

yet I am lonely, go figure.

 

Take care, Coleen        

> Donna-Marie wrote:

> I keep getting feelings that I should be getting over this being in pain every

day but I can't. None of my family truly understand. I also forget what I am

doing countless times today. I found I am always tired again today I had to go

to bed in the afternoon. Is this normal?

[Guest guest]

Folks who don't have to deal with unrelenting chronic pain day in and

out haven't a clue what it is like for us. I've been told so many

times to " just live with it " and " tough it out " that I've been tempted

to kick people in the butts.

Pain like we live with takes a huge amount of personal energy. There

are days and even weeks when I have to lay down more than I can sit up

and that includes not being able to sit at the computer. My best

friend can't understand that and is rather peeved with me because I

haven't been e-mailing or chatting every day. She just doesn't

understand what I say when I tell her I'm just too exhausted to get up

and sit at the computer. After all, SHE works (teaches, which is hard

work - I used to teach) and all I do is sit on my backside all day

long.

I've cancelled doctors' appointments because I couldn't even get the

energy to shower, dress and go to the office. You guys understand

that. Today I showered and had to go lay down for 2 hours. Then I did

the dishes and laid down again. Now I'm doing a couple of e-mails and

my vision is blurring because I'm tired.

It makes me furious when people don't understand what YOU and the rest

of our chronic pain family endure every day. It really does. I wish I

had the words we could all use to tell them what hell we're going

through and how we just can't do what they think we should be able to

do. Not won't - CAN'T.

Anyway, rant over. You take care of YOU and know that the rest of your

c-p family here is thinking about you. I'll send some knee mails out

too.

Love and gentle hugs, Jeanne B in GA

(fibro, osteo and rheumatoid arthritis, Crohn's disease and other

silliness I should be able to " just ignore. " Grrr)

>> Donna-Marie wrote:

>> I keep getting feelings that I should be getting over this being in pain

>> every day but I can't. None of my family truly understand. I also forget

>> what I am doing countless times today. I found I am always tired again

>> today I had to go to bed in the afternoon. Is this normal?

[Guest guest]

I have to deal with the same thing from my family and my sister is a nurse

practitioner. However I feel like if you've never experienced this level of

pain then you do NOT know what it feels like. I have been so tired and

mentally overloaded that I thought of checking my self into the psychiatric

ward at the hospital. I have neuropathy in my right leg and have

contemplated cutting it off, rationalizing to my self that the pain would

end (I know it wouldn't) but chronic pain essentially will drive you insane

in my opinion.

I wish there was some way for me to help you, it hurts and

is frustrating to feel like you are all alone. I will be praying for you.

With warm hugs and best wishes.

Jeanne wrote:

Folks who don't have to deal with unrelenting chronic pain day in and

out haven't a clue what it is like for us. I've been told so many

times to " just live with it " and " tough it out " that I've been tempted

to kick people in the butts.

[Guest guest]

The only person who knows what your pain is like is you. My pain is pretty bad

right now, but it is my pain. My wife and kids take on an extra burden for me

even mowing the lawns. My employer is supportive. The problem with pain that

unless its out there like a plaster cast or crutches then it remains unseen.

Therefore families don't physically see the pain.

See a cousellor to get help coping maybe take the family as well. You are not

alone at any time. I am sure there is a 24 hour phone support service where you.

Use them even if they only listen

God bless

[Guest guest]

I totally understand! I'm only 24 but my life has been consumed with

chronic pain and illness for the last 12 years, and I feel like my life

stopped in middle school, and I've been in this constant limbo, trying to

live, but never getting anywhere.

My parents didnt understand when I first

got sick (neuroborreliosis, dysautonomia) and always told me to stop

complaining, tough it out, exercise more, sleep less, etc, etc. It got

to the point that I just shut myself up emotionally and did my best to

" suck it up " and all that got me was exhausted adrenals, seizures, more

physical problems, and a ton of emotional problems.

Thankfully in the last

couple of years my mom became much more understanding, but its still a

problem with the rest of my family. and of course, I have no close friends.

Youth is the cruelest time to have a chronic illness, as peers are so hyper

& fun-loving that they don't want to give up their fun things to spend a

little time with a sick companion.

I have quite a few ppl that encourage me

these days, say hello occasionally and every once in awhile I even get a

little socialization. but all I really want is a close friend who is

willing to cry with me or just hug me through my pain. I'm praying that

friend will come one day, or that I can get better to be that friend for

someone else.

Meanwhile, it's been encouraging to meet others online who

are also struggling with chronic illnesses & pain. sad to know so many

others are suffering, but encouraging to know I am not alone in this.

I'd be more than happy to chat with anyone who is feeling lonely. I'm

not always mentally up for it, so I can't promise consistency, but I can

promise an ear to listen whenever I'm able. Email me, chat, anything:

happydinosaur@...

Skype: happysaurusrex

YIM: happydinosaur@...

Crystal

[Guest guest]

oh, and I totally agree that finding a good counselor helps!! but finding a

GOOD one is key- if you aren't comfortable with the person in the first

session or two- find another. The highlight of my week is going to talk to

my counselor, she doesn't judge or criticize, she listens to all I have to

say, and offers great suggestions for dealing with things,

but doesn't FORCE it upon me. It's just so validating- and that is

something that those with chronic pain do not often get- validation.

[Guest guest]

(((((((((donna-marie and fellow group members)))))))) I agree with the posts.

It is impossible to understand chronic pain if you don't have it. Chronic pain

never lets you forget it. The mind is amazing in letting us forget the level of

pain that is is no longer active. Remember labor? I thought someone was

slicing my stomach with a hot knife. However I can't recall the actual feel of

that pain. So for those not in pain can't really understand how we feel.

I find a lot of comfort in knowing you all are out there and struggling like me.

I have others that support my feelings so I know I am not imaging it.

Don't give up on your battle to get proper treatment! keep after the doctors

that you are still have symptoms. If we accept less, the doctors will think

that we are stable. Keep being the reminder that the treatment is not fine

tuned yet.

We all seem to have those flare ups. I have days were I double check my pills

to make sure I did take my dose. It seems like nothing touches the pain on

those days. When I have flare ups of pain or fatigue, I allow myself to have a

" rest period " . I used to feel so guilty but eventually realized that it was

only making things worse.

Have you tried heat or cold therapy to reduce the pain? I have found for me

cold makes it worse and heat really helps. It would be great if I could glue

the heating pad to my back from the neck down and go. The thermal heating

patches help. I get some relief from them.

Wish I could say more. Hang in there and keep venting. We are here for you.

Huge gentle hugs, Tami

--- Jeanne B wrote:

>

> Folks who don't have to deal with unrelenting chronic pain day in and

> out haven't a clue what it is like for us. I've been told so many

> times to " just live with it " and " tough it out " that I've been tempted

> to kick people in the butts.

> > >> Donna-Marie wrote:

> >> I keep getting feelings that I should be getting over this being in pain

> >> every day but I can't. None of my family truly understand.

[Guest guest]

You can count me in- i have chronic sciatica and 5 lumbar herniated disks, and

arthritis in my groin area and sometimes can't go anywhere- pain meds don't work

for me and I live alone with no way to get out when i am able.

But i made a goal- to lose the weight I have gained in the past 3 years with

this and i have lost over 10 pounds in 23 days so I have something to look

forwatd too.

Cathie in Ctd

Jeanne wrote:

Folks who don't have to deal with unrelenting chronic pain day in and

out haven't a clue what it is like for us. I've been told so many

times to " just live with it " and " tough it out " that I've been tempted

to kick people in the butts.

[Guest guest]

Jeanne B wrote:

> Folks who don't have to deal with unrelenting chronic pain day in and

> out haven't a clue what it is like for us. I've been told so many

> times to " just live with it " and " tough it out " that I've been tempted

> to kick people in the butts.

There are a few people I'd like to kick in the butt, but it would hurt

me more than it would them:-) Today, I couldn't fight my way out of a

wet paper bag.

Lyndi

[Guest guest]

Hope wrote:

> The only person who knows what your pain is like is you. My pain is pretty bad

right now, but it is my pain. My wife and kids take on an extra burden for me

even mowing the lawns. My employer is supportive. The problem with pain that

unless its out there like a plaster cast or crutches then it remains unseen.

Therefore families don't physically see the pain.

Boy, it the above ever true. Since I broke my leg and mangled my foot,

I have been receiving all sorts of kindnesses from people, including family.

These same people know that I live in pain 24/7, yet it is rarely

acknowledged. Now that I have forearm crutches and a brace on my leg

and foot, people are going out of their way to be helpful. Truthfully,

I've had lots of days where I felt worse than many of my days with the

leg break. But, people can't see it, so they just don't get it.

Maybe we should all use forearm crutches all the time? <grin>

Lyndi

[Guest guest]

I am on crutches anytime I leave the house. I get questions but when I

answer them people run like I am contagious or something. My bones are dying. I

don't know how I could possibly give that to anyone else.

I have known I had this since January 2011 but haven't used crutches much until

I found out recently that the AVN is so far up in both of my legs.

The only person I worry about giving this to is my little girl because I was on

steroids when I was pregnant and breastfeeding her.

Good Night!

Anne