I would rather be dead than have this, sorry folks, but the whole thing sucks, and no one in my family gives a rats **** if i live or die, oh well, lying there, they want me to go to work coz hubby doesnt work. He said he doesnt care about my pain, he doesnt care if i have pain. And right now, i dont care either, coz i just want to take more and more drugs till i cant feel the pain in my body. Is that weird, or is that normal? the whole thing stinks, and i hate it, i hate the tiredness, i hate the pain and i hate not feeling normal anymore. Good luck to all of you who still feel ok. I will probably not see this posted, i guess i am feeling pretty bad today. i guess that is normal too, good and bad days, but i have to go back to work full time and put on the bright smile and yeah sure, all great, and yeah i am doing wonderful, and really i just want to scream and shout that this stinks and i hate it, and i hate my husband for not caring, and my daughters never ask me either ... so i was only diagnosed a few weeks ago and already no one cares a **** what happens, i hve to suck it up princess, put on the bright face... i dont want to.

Im glad you vented, it needs to go somewhere.

Family!

Well family is a structure. It has been a certain way for a long time.
Now you have a new situation.
Your family cannot accept it.

No wonder, if it is you that has been going to work and not your husband, you obviously to some degree are leant upon by all members of your family.

They need educating, but this is not easy.

Its like trying to explain colour to a blind man.
They may get it in time but it will be the way they see it not how you want them to see your pain.

Be strong.

Give this time, give them time to adjust to your new diagnosis.

You have my sympathy, which is currently what you need.

Use the drugs to control pain and not thoughts.

You are normal wanting and needing attention and love.

A meal time is the best time to talk to anyone.

If they will not listen then ask them to watch something about your condition or read something.

It will not make a difference tho until they see you, accepting the way things are and doing your absolute best to adjust.

Take care.

The ugly thing about this is that it usually doesn't show much physically, it's all internal, and nobody believes how much it hurts, or even how it hurts. It's not an organic type of pain where you have an injury, your pain peaks, then gradually gets better and goes away. My mother gave me some topical cream ARNICA that helps numb boo-boos. I put that on my right foot, and five minutes later my whole foot is stinging out of control. Mom thought it would 'numb' the pain, but all it did was penetrate and excite the nerves that are damaged. ***** I couldn't move fast enough to wash that crap off. I tell her my feet sting at night, and she asks if it was because of something I was doing or eating during the day. I said no, with this disease it's much worse at night. Must have something to do with the moon, or gravity or something. So, YOU CAN'T EXPECT A MERE MORTAL TO UNDERSTAND SUPERHUMAN PAIN. I was going to work on crutches before I got the edema (swelling) under control, but I was taking the handicapped lift up the stairs, and it got so bad, I requested to work from home. And that's what I'm doing now. I'm one of the lucky ones. But yeah, it really sucks, and what sucks worse is that there are no cures on the horizon. That REALLLY SUCKS-

I feel your pain. I havent even been diagnosed yet,.don't know if this permanent or a pinched nerve or what. But the way people have been treating me has been horrible. My dh actually called me lazy the other day. I about had a nervous break down. Last night I had to explain to him and my kids what is actually happening to me inside my body. Just because you do not see it doesnt mean it isnt happening. And Lord knows I dont want to live like this,.I would rather be doing more things. And even when you tell people if they havent gone through it themselves they cant even imagine.

I'm so sorry for your hurt and pain! I am praying for you today.

My deepest sympathies for what you are going through. I was also someone with absolutely no support behind me. I was able to vent on these boards and also to my GP. It may be worth looking into some counseling, meditation therapy, hypnosis , pain management etc.

Nobody should have to go through this alone.

As far as work is concerned, it's hard to concentrate on work when your in so much pain, but we all have to put bread on the table one way or another. You may consider asking your husband to get some paid work and if you can scaling back your hours?? I dont know if that's even possible.

If all else fails just vent and vent on the forum. Trust me I totally get you.
Yes it sucks big time!!

Hi Linda,

You're not alone. Though we -- all of us here -- may be separated by great distance, the internet has made it possible for us to be together for support.

There are a couple things "they" don't tell you (maybe because "they're" hoping they won't -- or don't -- always happen(?) I dunno. ).

First, Depression is part of the package. It comes with any kind of chronic illness, and the two feed on each other in what has been well-documented as the "vicious cycle". Google: chronic illness depression vicious cycle

Second, the stages of grief. Chronic illness is a life-changing event that affects not only our bodies but our minds. Google: stages of grief chronic illness

Knowing about these things won't make them go away. Learning about them will help you recognize what you're feeling, understand why, and hopefully how to better cope with them. I believe knowledge is power because I have seen and experienced it in/on my own journey. Knowing and recognizing is more than half of the battle in coping, living with it, and moving forward. It is not the end; there is still great joy and wonder ahead.

Venting is fine and healthy. Anger, frustration, depression... are understandable and forgivable. All of this is human. Forgive yourself first.

Doc

You are not alone , people dont take anything they cant see as serious unless its something terminal like cancer . Nobody gives a ***** in my family either ,and actually provoke me by suggesting the opposite most of the time to beep me off with result now we rarely talk.

In the end we cant change people we can only change ourselves .

If you try options here maybe you will get lucky or at least improve so its more bearable , but your going to have change ,rather hoping for everything else too or you'll be in for a long wait.

m

My feet hurt so ******* bad today. And nothing is working. Had a bad night - always seems like I have a bad night but this was even worse. Told people to lay off me and they ignored it and kept going. I exploded and it made my feet even worse. People can't understand. In addition to that, I tell them to read about it, and they can't be bothered to do it for 10 minutes. People suck. ****** People are still animals. They're idiots.

My right foot feels like it's gonna explode so bad, I'm afraid to take my compression sock off. And the old lady is wearing me out about throwing vegetable pulp that just went through a juicer -- down the disposal. Wtf is wrong with people? Oh that's right - she's not in pain 24/7 like I am! I knew I'd figure it out. This tune just about sums it up. For your enjoyment. As much enjoyment as you can get anyway.

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