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Avatar universal

Family

Has anyone with a back injury,surgery,fusion, had your family act as if since the surgery is over, and you have healed, that you should be up and back to your old self? and as much as I have tryed to say I am still in so much pain, they do not at all understand.My husband can not understand why I do not have the house spotless anymore, and my kids keep asking me to babysit my grandkids. I wish I could be the person I used to be, but until they get the pain under control it is what it is.I have come to the point, that unless you have been there, then you can not begin to understand.I may look ok, but in truth, I am always in some level of pain and never pain free.Oh and that whole rate your pain thing 1-10 Really! is that hard for anyone else or is it just me?
14 Responses
547368 tn?1440541785
Sorry Timber that I am a bit tardy to this very important thread. In the past we have discussed the extreme difficultly most of our family members encounter when trying to understand our Chronic Pain.

Chronic Pain is a disease, just like diabetes. We didn't ask for it and there is generally no cure. Even the most loving family members just can't wrap there heads around the true meaning of Chronic Pain. It saddens me that the normally loving and kind family member can turn into your worst nightmare  when dealing with a loved one in Chronic Pain (CP)!

Education is the key. If anything is going to help that special person in your life understand Chronic Pain.... it's EDUCATION. As Sherry said it may be benefical to take your husband on an appointment with you... or better yet, several appointments. Finding educational articles on Chronic Pain for his  "reading pleasure"  can also benifical.

There are several good  "letters"  or articles directed at ppl that do not have CP but have loved ones dealing with the animal. There were written in an attempt to help others understand CP. I've copied several into my journals. I have actually sent these to friends and loved ones. Maybe it will be helpful for you also.  

Here's a link to one of my favorites.

http://www.medhelp.org/user_journals/show/155544/Letter-To-People-Without-Chronic-Pain

Here's an small portion of that letter:...... "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 live my life to the best of my ability.  I ask you to bear with me, and accept me as I am.  I know that you cannot literally understand my situation unless you have been in my shoes......"

The Media has done a great job of making Pain Patients look like Addicts. We're thought of by many uneducated ppl as "weak" and drug seekers.

I am blessed to have a God-Sent husband that truly gets it. I have many close family members that simply don't!! So if it helps, we understand what you are going through.... it's common to those of us that have CP.

My heart goes out to you. Please remain active in our community. It's been helpful for me and I hope it will you.

Your Colleague in Pain,
~Tuck
Avatar universal
It took my husband a long time to understand, you see he never even had to take an Advil or Tylenol. It's really depressing to hurt all the time and not be able to do the things you once were able to do. He is much more understanding now than six years ago. It's just going to take time for them to accept that this is the new you and there is nothing you can really do about it and that your not exactly happy about not being yourself either. It's definetly a life changing experience.
Avatar universal
Yes that is has been, it is funny how one day within just 10 mins my whole life changed. It has been hard for me, I had my dream job and was on the right track to retire, and it was gone and I was on an operateing table. I had hope until the thrid surgery and then I new this was all here to stay.
Avatar universal
How long ago was your last surgery if I may ask? I'm no longer able to work either and our income has suffered tremendously but I'm a believer that things happen for a reason and just because I don't understand now why this happened doesn't mean I eventually won't. I used to be really bitter about things but all it did was make me feel worse. I have a close family member that is my inspiration and she tries to keep me on a positive path. I'm not going to lie to you, it's hard but I have faith now that everything will be ok. I hope your family learns to understand you better. It's not your fault. :)
1801781 tn?1461629469
It is hard to understand how they do not get it.  I had back problems for years. I worked when I thought I would die.  Back at that time, surgery was an option I was not willing to take.  Years later I finally got an MRI and they found two places that were bad on my spine.  I did not realize that others did not get how hard it had been.  I had crawled to the bathroom, I had worked when all I wanted was to scream in pain, but had no options then.  One day a friend's husband called me to say he was sorry that he had been so cavalier about my pain.  He had pulled his back out working on his car and had been down and in pain for several days.  Until then he had not realized how hard it is to do anything when your back was hurting.  Until then I did not realize that if you have not been there you do not get it.  Give yourself time to heal from the surgery.  It takes a long time for things to get right!
Avatar universal
I, too, know where you are coming from.  Even after all of these years with back pain they don't understand.  

Have you ever taken them with you to a Dr.'s appointment and let the Dr.  attempt to explain it to them.  It doesn't always work but a lot of times it doest work.  It's worth a try.  

It's not only back surgery but any type of surgery that families as well as friends seem to react this way.  Just know that you are far from being alone in this!!  We are here with you.

I wish you the best and please keep us informed as to how this plays out with you.

I;ll be looking for your updates...........Sherry  :)
Avatar universal
The last one was three years ago and was a multi level fusion, so because I am over weight and have high blood press and am diabetic, my doc brought another nuero in to help cut down on the time I was on the table. Even with that I was in ICU for three days. Now they are telling me I need more surgery and to tell the truth, I am so scared I cant stand it all I do is cry.
1801781 tn?1461629469
I have always had great blood pressure, but when I was diagnosed with Diabetes 2 I also noticed my blood pressure was higher than normal.  Since my mother died from a stroke related to the D2 it scared me to death.  I lost weight (70 lbs) in about 18 months.  I went low carb and high protein.  My back got lots better since then.  My blood pressure went down to the normal that I was and my D2 is sorta in remission.  Not taking any pills or shots at this time.  Guess what I am saying, is maybe if you can lose some weight (my girlfriend is doing Weight Watchers online and lost 30 so far) it will probably make everything better.  Not perfect, but better.  It is not easy for sure, but it could change a lot of things that could make your life manageable!

I agree with taking your husband or other problem family member to the Dr.  Maybe it will help.  
Avatar universal
Thank you so very much your post made me cry, and I am so happy you are blessed with a husband who is understanding, mine remember the woman who he married and could take in the world, he has been to several doctor appt, but it has not helped. he says Its the bed, or maybe the fact you dont walk long or sit long, and come on burning pain in your legs?. It also  does not help haveing a doctor who says after five tears that the four norco 10/325 should be enough, even tho the new MRI shows more damage. I just keep telling my husband it is not the bed ect, it is them ripping my back open two times within six months and then a thrid a yr later. Plus all the cracked ver and a number of other things. If I did not have faith in God, who knows what I would have done by now. I just joined and will stay, You all are so nice, and get it really get what I go thru. Thank you Tuck so very much. KIM
Avatar universal
Sorry, spelling was bad, was crying.
547368 tn?1440541785
Sorry... I didn't meant to make you cry! :o(

Sounds like your husband is in denial!! He wants his healthy, active wife back.... just as much as you do. No one wants our path!! It certainly doesn't help if your Physician is in a bit of denial too... which it sounds like he may be.

I don't know the laws of your state. In my home state it is your PCP that prescribes for and follows their Chronic Pain patients. In the state I currently reside it is only a PMP that can prescribe for and treat Chronic Pain. So determine the laws of your state as you deserve better pain control.

If your PCP will not keep you comfortable than find one that will. ..... OR .... You may require a referral to a PMP if they are the ones directed by your state to follow/treat CP patients.

Once you find a Physician that understands CP your life will be easier. They will also help educate your husband. Be assertive, insist on comfort! Refuse to accept that favorite sentence, "learn to live with it."   While it's true that we must and do learn to live with CP we also deserve and require good pain management. For most of us there is no magic pill or treatment that will take our pain away. However there are medications and treatments that will reduce our pain.... and make life worth living again.

I am glad to hear that you will be active in our community. Until I came here I didn't know there were "others."  I thought I was in this journey alone. I'd read a post and think, "OMG, I could have written that, word for word!!"  This community has made a huge difference in my life. I am confident you'll find the same. We are not alone... there are thousands and thousands of other CP patients. You'll find that all important support and understanding in our community!  

Welcome!
~Tuck
441382 tn?1452810569
My husband in a Godsend.  He is truly my rock.  My parents, were they still alive, would be the same way.  It's the REST of my family that has basically written me off over the years since my injury and subsequent surgery.  You see, the surgery went well and everything would have been perfect, but after the pre-surgical myelogram, I developed adhesive arachnoiditis in my spine when the nerves in my spinal column reacted badly to the dye used in the myelogram.  I am now a lifelong pain management patient whose family, except for one cousin who has always been more like a sister to me than a cousin, now thinks that I am pretending to be in pain because I am, in their minds, "hooked on pain pills".  They all think that being in pain is a case of mind over matter and that I am merely saying that I am in pain so that I can get pain pills.  I haven't spoken to any of them, save for my cousin, in over 10 years because of this.  

The reaction you are getting from your family is not, sadly, an unusual one.  Too many people just don't, or WON'T understand what people who go through back surgeries have to live with.  They think that because the surgery was done, everything should be fine and after a short recuperation period, we should all be good as new!   I don't know what to tell you to do to change them, I don't think there really is anything.  It's a realization that they have to come to on their own.  

This forum, however, is a WONDERFUL place to come for support!  The folks here are educated, friendly, and, most importantly, supportive to those who are living through difficult situations.  You'll find them to be a great comfort.

Ghilly
Avatar universal
I want to thank everyone for the help, you all are kind, and understand everything, because you also have and are, where I am. and Tuck is right I need a life of comfort. I know that I will never be pain free, but it is everyones God given right to live, and I am just askin to shop!  :)
547368 tn?1440541785
"Just asking to Shop"  :o)  One of my likes too!!

There are days I can't shop or do the things I enjoy. However those days are less now that I have good Pain Management. I also know that I will "pay for indulging in the pleasures on life..... but I weight it out. I chose to live. That is one of the advantages of Pain Management. You do have choices, at least most days.

I hope you'll find some comfort. Life is short and should come with some pleasure.

Peace,
~Tuck
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