Holidays with family who don't understand! - Pain Management Message Board

Bictwin · 12-24-2006, 12:09 AM

Okay, so let me reintroduce myself...I'm Ashley. 21 years old, with Scheuremanns disease in my back. I had a spine fusion from t10-L1 October 31, 2005. But my pain started 6 years ago. They didn't figure out what it was until 2 years ago. I have been in pain management for like 3 years? Maybe more. My meds are this: 8mg Dilaudid (pain-killer)every 4-6 hours. 10mg Flexeril (muscle relaxant) once before bed. 10 mg Zofran (anti-nausea, mostly used in chemo patients) as needed. Anyways, my family is not very understanding I have an identical twin. I don't know about the rest of you but my family seems to think my pain is exaggerated. My immediate family and other relatives. They ask: Are you still addicted to those pills? You should really stay off those! Weren't you supposed to stop taking those after the surgery? Your pain is not THAT bad! I hate that people, not just people but my family think my pain is in my head. They say I dont need the meds.
So then someone stands up and goes "Gosh my back has been hurting the last 2 days" so i say "Yeah mine hurts too" and they just go O Ash your back always hurts. Exactly my back ALWAYS hurts, but when I complain they say Im overexaggerating. When I dont complain and keep to myself we go to the doctor for a visit and she asks how my back is doing. I say it hurts still, sometimes worse than it usually is. And my mom says no its not hurting that bad..she hasn't complained at all this week...I want to lower her dosage. Now I know I'm 21 but my mom drives with me because sometimes I get shots or something and im too drowsy to drive home.
But its not just my mom when the holidays are here so is everyone else. I dont take my meds in front of anyone, but they still pick on me. Im the person in the family that people are embarrased of, and push to the back and ignore until they feel like picking on someone! UGH!!! Any suggestions?? Let me know! Hope everyone else is doing good.

djemcee · 12-24-2006, 01:21 AM

Ashley,

I can not imagine being in your shoes. That is so very sad. Why would your own family be so harsh. It's obvious that you have an illness, and its obvious that you are under a doctors care. I think your pain and problems should be between you and your doctor only. It's fine to have mom drive you to the doctor, but in no circumstance should she come into the room and answer questions directed to you on your behalf. If I was your doctor, I would ask you mom to leave the room (politely of course). I think you should contact your doctor when no one is around and ask the doctor to do exactly that if mom starts to even but in when you go. If asking mom to wait in the waiting room doesn't work, then your own doc can step in and say "mom, do you mind stepping out into the waiting room while I talk to your daughter". That is the very first thing to do on your list.

Secondly, you are to never bring up your pain schedule to your family. If they can not be of some support, then they need not be in on the cure. If they ask how is the pain pills going and are you still taking those things, I would reply with "that is a personal matter I rather not discuss at this time" That will end it right there. Just always say exactly that!! If they keep asking keep saying the same thing.

I am lucky to have had a very supportive family from the time I became very ill at age 18. I have been through a heck of alot and they have been there to help me through everything that has ever happened.

I wish better luck for you. Try these steps and see if they work.

Merry Christmas

California Chris

ozzybug · 12-24-2006, 08:46 AM

Ashley-
I truly feel for you sweetie. I have people, even family members, who just don't understand. And many of us say this over and over, but I'll say it again, here goes...

People who don't live with long term, daily, chronic pain do not understand at all. They can't begin to imagine how much pain we function with on a daily basis. They don't realize that we have "adapted" if you will, to living with constant pain, therefore we have basically forced ourselves to act as if things are ok...we smile and laugh, we spend time with family, we go to work, we just function because we have to. We have become used to "hiding" most of the pain mostly because we don't want people making the comments that are made to us and behind our backs. I mean, just because we don't complain, doesn't mean we don't hurt.

I don't know what the answer to fixing this problem is other than having those people who make such comments live for one day with our pain so they might better understand, but we all know that isn't possible. I do know that the pain we feel on a daily basis would make most people climb the walls!

You are an adult, and regarless of what others say or think, you have to do what is right for you. If they can't understand that, or aren't willing to at least try and be more understanding of it, then they should just keep their comments to themselves- period. Don't speak of something you know nothing about.

If they ask, do as DJ suggested and simply tell them you don't wish to discuss the matter. If they get upset about that, it's their problem. Sometimes you are darned if you do, and darned if you don't.

Please take care and try and enjoy your holidays sweetie. We are all here to help support you.

erfan · 12-24-2006, 10:29 AM

Your family needs to know the difference between addiction and dependence.

All CP'ers on opiate therapy become dependent. That means that if the meds are stopped abruptly, we suffer withdrawal.

That is NOT addiction. Addiction is a social disease. Addicts don't adhere to the docs directions, they take the med for the high, not for pain relief. They doctor shop and buy meds on the streets.

The rule of thumb is that if the meds improve the quality of your life and allow you to live a fairly normal life, then you are ok.

If the meds ruin the quality of your life and you lose your job, money, home and spouse, then you are addicted.

Good Luck. Also, as noted, keep your med schedule to yourself. No need to be disrespectful and say it is none of your business, but tell them that you'd prefer not to tell them.

Alan

conductor · 12-24-2006, 04:47 PM

Dear Bictwin,

Since invoking violence on family members and close friends doesn't really go along with the spirit of the season, I suppose we have to resort to some of the more practical advice given!

Seriously...Djemcee offered SUPERIOR advice that was supported by the others! I add my own "Amen" to the support. Your time with your doctor is yours and yours alone! Plus, I've learned to keep my whole pain situation as quiet as I can. I have family members who have expressed a serious lack of understanding (and I've had a family member steal medication from me).

So, the best thing to do is VENT RIGHT HERE!! THAT'S WHY WE'RE HERE!! We support you wholeheartedly, and we believe you!

Take care, Ashley. You are a young PM patient, and your age--unfortunately--will probably be a factor for many people for a while.

Sincerely,
Jon (Conductor)