How To Convince Family You Can't Work?
 

I do my best to do what I can around the house but what a normal person can do in 5 minutes it takes me an hour and everytime I do much of anything I end up in bed for days! What I have is not better with exercise, it causes more flare ups and pain and I will scream the next time someone calls me a faker! No Dr will give you 100 mg of Morphine to take every 8 hours and 15 mg of short acting 2 x a day for breakthrough unless there is a damm good reason! I have never failed a drug test or come up short on my pills...I usually have extra since they don't ever make the pain go away anyhow.I get so tired og the true druggies and drunks calling me a junkie...I sure as hell never feel high! Sorry for the rant, just getting fed up!

(((Junie))) I'm sorry. :hug:

Thanks for the link but if I wanted to end it all.., I would never come here! I will stay alive to spite them!

That link is a permanent part of my signature dear Junie...I would never assume that you would want to end it all. We lost our only son that way. :grouphug:

dearest junie
 

I am so sorry you are going thru not only physical pain but the emotional aspect of it also. Trust me when I say I know what you are going thru. I have the same type of pain. I hear all the time..."try to exercise for maybe 15-20 min. a day, you never know it may help". Well trust me it doesn't. I have to take a shower/bath in two different settings. First shower and wash and condition my hair. Then get out and rest approx. one to two hours. Then in tub and shave legs, and arms and finish washing. Then out and back to bed for another 1-2, sometimes three hours. I can barely unload the dishwasher. Pain is bad, not as bad as yours, I don't think, my problem is with exhaustion. Just sheer exhaustion. I used to be able to babysit 4 young toddlers at a time. Before that I held an Office Manager position for a big publishing firm and worked about 60 hours a week. But after I had my complete hysterectomy (at age 29, which sucked) I haven't been myself. I can''t make decisions, I am forgetfull, I hurt so much and I AM SICK AND TIRED OF IT.

So thank you for your rant...it gave me the chance to rant also. I wish I could help you with your pain, but unfortunately I can't. I can though tell you to speak your thoughts on here as much as you need. Get it all out. It does make you feel better.

Missy :sorry:

Sorry Alfie, just did not want anyone to think and I have been off forums so long I forgot how sig work:(
Thanks Missy,
So many people don't understand how my one little effort is like climbing a mountain to them! I too not only hurt all the time but also have no energy and when I get a small burst (it usually comes from hurt or anger) I have to grab it and if they see I washed dishes then it must mean I fake the rest of the time! I went on vacation for 10 days and not one thing was done, and someone even had the nerve to call me in Fla to cuss me for not washing dishes, Grrrrrr, I was not home to dirty them!!

HI Junie,
I'm sure if I searched, I'd find the answers...but I'm wondering what is causing your pain? What's your story? I've had episodes like you from MS symptoms as well as my bad back. Just wondering what is going on with you.

Off to work so I'll check in at a later date.

HUGS
J

symptoms
 

yes June , what do you have for a illness or what happened ? Can surgery be done ? Have you been to a Pain Clinic ? Have you had recent Xrays. Tell us your story. :hug: Roz

I'll pray for you...Sorry..

pete

It is called arachnoiditsis, nerve pain, no cure, came from fusion surgery in 06 when NS cut into my spinal cord twice and my spinal fluid filled with blood. I had to lie flat on my back for 5 days, was in hospital for 12 days instead of normal 4-6. The nerves that are supposed to dangle below my tailbone are now balled up forever in a clump and there is nothing they can do. I am fighting for a pain pump and will never stop since that is only thing I hear that gives others like me any quality of life! I am waiting on disability since may of 06, was told my aJL hearing may be another 18-24 months, was denied twice already. I had to begin self cathing Prn this year and I see colon surgery in my future...hope I can afford it! The numbness is here there and everywhere, it travels as well as the pain, although it never leaves my back and left leg, left arm is losing some functioning. Other then that I am just fine!!
Sorry all,
I am in terrible mood, another fight with loving son!

:hug: Sorry to hear about this. It sounds like a hard way to live. Words escape me as this condition is new to me.

My clock is ticking and work beckons me to appear, so I must sign off. I'll be back to chat more with you at a later time. Until then, prayers sent out for you that you are comforted and that you can achieve some kind of resolution to getting the help you need to live a functional life sooner than later.

Good to meet you Junie
J

Thanks everyone,
I am just in a dark place right now and am trying to dig my way out:(

Hey Junie~ sending prayers and hugs your way.

http://dl5.glitter-graphics.net/pub/...ydv0iscv2c.gif

I can certainly understand what you're saying, Junie. I haven't been able to explain to people why I take a half-hour break between washing sink-fulls of dishes, or other things. I've even had member of my own family insist that it was all in my attitude. My brother said I just needed to get out more. That if I went out on a few side-jobs with him it would fix me right up. I think it's an issue that will always exist, because until you experience it, it is definitly hard to understand.

"Walk a mile in my shoes"
 

Junie, I have been thru that one b-4 too. I had to Quit taking morphine 200mg. Slow Release my A..,it sucked-I was on"breakthrough pain. I Quit Cold Turkey it may not help your pain-U talk about Withdrawels....Sweating,nausea,diareah.Honey, please do not try this @ home ! 2 Weeks of hell. Dilaudid 4mg. They are reasonably priced #120 of the 4 mg. generic is about 30.00-Brand-is a buck a piece. Ask your Dr.to at least let you try them. Sincerely,Mack Doss [/SIZE][/B][/COLOR]

Dealing with my family has been one of the worst parts of my chronic pain struggle. It's bad enough when we get comments or looks from strangers, but it's a betrayal when our own family members turn on us.

So many times, issues have come up ......like somedays I can drive, but others I cannot due to pain. My kids, my husband, and my extended family seem to forget that it hurts me to drive. If one day I am able to push myself to do it, then the next 10 times that I cannot drive I feel like I have to defend myself against their questions and insinuations that I could do more if I just tried harder. I talk to them, lay it on the line and explain about TOS and RSD and how much it hurts me to feel like they doubt me. Everything goes smoothly for a while and then their attitudes get revealed again. Is it any wonder that I (and many of you) are depressed ?!?!

Hi Junie,

I wish you luck in digging out of that dark place, I have been in places like that emotionally before and it's awful. You have my sympathy and my prayers that you feel better soon emotionally. I am so sorry that you're in pain (the emotional kind) and wish there was something I could do. It's not fair people want to call us druggies....

My son's father, he watches a show on A&E called Intervention and talks about how I will need to go to rehab one day. I could just spit fire on him! He's pretty insensitive about it and even though I have an MRI repotr stating a partially herniated disk on like C4-5 he could care less. Just wants dinner on the table and a sink free of dishes at night. *Sigh* Now my family? Mom and Dad, (he's passed on back in the late 90's) always showed nothing but kindness and understanding, NEVER passing judgement on me for all the drugs I had to take to cope while my body healed.

But this isn't about me, I just wanted to show you that some people, even ones who SHOULD know better can be pig headed about us NEEDING medicines for the pain and DOUBT we're still IN any pain while taking them. Big surprise it doesn't cure the pain! :(

Hope you're feeling better tonight...:hug:

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Letter to People Without Chronic Pain

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This letter was posted on another site and I copied it years ago. Its a good message for those who don't "get it".

Letter To People Without Chronic Pain

Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about chronic pain and it’s effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those of you who wish to understand…
…These are the things that I would like you to understand about me before you judge me…

Please understand that being sick does not mean that I’m not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit, sometimes I don’t seem like much fun to be with, but I’m still me—stuck inside this body. I still worry about school, my family, my friends, and most of the time – I’d still like to hear you talk about yours.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy, that’s all. It doesn’t mean I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things. Please don’t say,
“Oh, you’re sounding better!” or “But your looking so healthy!” I am merely coping. I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases
You’re either or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest most frustrating components of chronic pain.

Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable”, and so on… it applies to everything. That is what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible )for many it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!’ or “Oh come on, I know you can do this!” If you want me to do something, then ask if I can. In a similar vein, I may need to cancel a previous commitment at the last minute. If it happens, please do not take it personally. If you are able, please try to remember how very lucky you are--to be physically able to do all the things you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to get my mind off it may frustrate me to tears, and is not correct and if I was capable of doing some things any or all the time, don’t you think I would? I am working with my doctor and am doing what I am supposed to do. Another statement that hurts is, “You just need to push yourself more, try harder…” Obviously, chronic pain can deal with the whole body, or be localized to specific areas. Sometimes participating in a single activity for a short period of time can cause more damage and physical pain that you can imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down/stay in take these pills now, that probably means that I have to do it right now- it can’t be put off or forgotten just because I’m somewhere, or I’m even in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure for me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.
Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I. In some cases, I may have been made sicker, not better. This can involve side effects or allergic reactions. It also includes failure, which in and of it self can make me feel even lower. If there were something that cured, or even helped people with my form of chronic pain, then we would know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked we would KNOW.
It’s defiantly not for lack of trying. If, after reading this, you still feel the need to cure, then so be it. I may take what you said and discuss it with my doctor.

If I seem touchy, it’s probably because I am. It’s not how I try to be. A matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot. Chronic pain is hard for you to understand unless you have had it. It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and accept me as I am. I know that you can not literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try and be understanding.

In many ways I depend on you – people who are not sick. I need you to visit me when I’m too sick to go out… Sometimes I need you to help with the shopping, cooking or cleaning. I may need you to take me to the doctor, or to the store. You are my link to the normalcy of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.
I know I asked a lot of you, and I do that you for listening. It really does mean a lot to me.

AUTHOR UNKNOWN

I have saved this on word and have been know to print copies for people who have given me unsolicited advice on what I should do to "help" myself.

Dottie

Wow Dottie...thanks for your post...

Junie, my husband...Olhipie was reading your post and his heart goes out to as well does mine...he said that your family is missing out on some pretty great blessing in serving you...he is thinking about your question and what is possible.

I can't imagine not caring for my honey or any of my family when they are in need of assistance...:hug::hug: