I was a bit upset tonight when my sister came home from work and said she had been talking with her boss about lower back fusion surgery. He apparently had the surgery and he swims now every day to help with the pain. Anyhow she is telling me that he didn't take anything stronger than paracetamol. He told her that I should not be taking strong pain killers as he went without and apparently sometimes had to crawl to the toilet as he couldn't walk. The thing is she started to tell me that some people have a low pain threshold and I must be one of these people. So she was comparing my problems to his!
Now he is a glasses dispenser and Chinese so I could not possibly compare myself to him. I worked as a concreter for over 10 years and first damaged my spine at work about 12 years ago and my problems have been getting worse ever since. I have been in chronic pain for over 8 years and have been battling pain and trying to get doctors in the public system to try to get the proper treatment. He has got private insurance and got in and had the surgery years ago.
How can she possibly compare me to him. He is a dainty looking small Asian man. There are no similarities except that he got a similar operation to what I need. And I am not even sure if he had a 360 degree fusion maybe not.
It just really upsets me that my own sister would say this to me. Does she really think I could get by on Paracetamol? Oh well I give up on her,she just doesn't get it. She can come out with this stuff and doesn't even realise how much it hurts to have her say things like that. I just give up on it and will not take her seriously any longer.
Allan
Sorry to hear about your sister's views...My brother is the same way..he's never had to deal with the type of pain that we deal with..and he is a 'buck up" and get over it type of guy...I have learned through the years to just say.."ok..sure"...and let it go and ignore it...it made me cry in the beginning since I wanted his support..but realized that he is not an empathetic guy and has no clue about chronic pain...I'm thankful my mom and wonderful friends support me..
And NO ONE should compare their pain to yours..even if someone has the same surgery...we are all different..and having acute pain..is totally different then living with pain for years like we have..that just takes such a toll on us..
My second surgery....the surgeon was such a jerk..when he came in that evening after the surgery..he was saying to me.."You should only be taking Tylenol..i've had shoulder surgery and only took that...I fixed you..you should be fine.."...
It turns out that I was in worse pain than before the surgery..and thank goodness to my last surgeon who is amazing..who had to go in and fix everything this guy messed up...replace all the hardware, etc...
I reported that guy to my state medical board for his treatment...i was in agony..
Just wanted to say that I can understand it's hurtful when our own relatives can't understand what we go through...
I truly hope that you can find relief with your surgery...
My brother who works in the medical field, recently discussed this very issue. Fact is even with all his knowledge and experience working with pain clinics, the only way he can try to relate to what I am experiencing is to try to use his imagination since he's never experienced it. Even so his imagination isn't enough to make that leap. The only family member I can relate to on my condition is my cousin who has arachnoidiitis. She finally has relief with an opiate pump implant. The other person who can semi-relate is my sister-in-law who has "loose joints" so she easily dislocates her joints. Sometimes she has to pop her shoulder back into place by herself. Anyways she can relate to the debilitating back and shoulder pain.
For the rest of my family its like trying to explain color to a person born blind. They can logically grasp what I am saying, but can't fully relate not having the experience. By the same token, I know I can only imagine what my dad is experiencing with his MS but I read the MS boards so I can attempt to relate better.
Point is beyond those of us experiencing the same conditions, to the rest of the world its an alien concept. Like a language that only we speak. Same goes for depression or any other aliment you can't relate to without experiencing. Everyone can probably relate to having a cold or toothache or scraps and cuts or even a strained muscle or sprained ligament... because most everyone has experienced it.
So accept that your family can not understand your condition and ask that they trust your word and empathize to what ever degree they can.
The summer before last my mom asked me to help out in the yard trimming some shrubs. She understood I have limited range of motion and limits in lifting. Somehow I turned/twisted/positioned myself the wrong way and my back objected by going into a series of muscle spasms that lasted over half an hour. So there I was with my shirt off so I could use it as a pillow laying on my stomach as she watched my back "ripple in waves of spasms" (her words) each muscle contracting independently of the others for over 30 mins. She still doesn't "understand" my condition but that image has stuck in her mind and made an impact so that she is willing to listen to a greater degree.
Still my family (dad, oldest brother, mother) insisted that I walk regularly contrary to my doctor's instructions. My oldest brother said I should get a letter from my doctor explaining that walking was bad for me which my doctor laughed off as folly. This year I got letters explaining my disability to Vocational Rehab and Mass Transit ADA Policy Director, of course my doctor was willing to write these as they were needed for governmental agencies. Still it took me writing a draft of each letter to convey what each government agency needed to hear. Which my doctor then rewrote. Even with these letters my family failed to accept my word that walking was "bad excercise" for me until I permitted my mother to speak directly with my doctor and he told her directly.
I guess where I am going with all this is don't set your expectations too high when it comes to your family "understanding". Best I can advise is to refer them to these boards and let them do some reading. That's probably the only way they are going to get an objective understanding of your condition. All other communications, unless it comes from a doctor, is going to be subjective and colored by your family's experience with you.
~Myo
Last edited by Myofascial Pain; 03-04-2010 at 04:35 AM.
Thanks guy's I understand how they don't get it and I know how unless you experience it yourself you just can't understand. I went through a breakdown when I found out my wife cheating on me. We ended up divorced. I completely lost it for at least a year, So I know what serious depression is like, and rejection. It was the most devastating thing I have experienced. I feel for those who are going through that it is just truly heart breaking. I could not compare anything with the feelings that you go through in those times. It is like your partner has been torn away, as you know you may never see them again. I did see her once since then and that was hard. Sorry to go on about it.
Allan
Everyone experiences pain differently. The med he was on obviously helped him or perhaps he felt it was the only thing they would give him etc. Or perhaps chinese medical therapy worked for him. What works for one does not always work for others. Everyone has their own pain thresh hold and many of us go years and years in circles trying to find the right doctor to treat our condition then go on to find the right one to treat it correctly. I too suffer from family that either thinks I am full of blankety blank and a med seeker or just a lazy bum that won't do anything to help myself. I do everything I can just to function. I finally went back to work a nearly 2 years ago and it is physically torturing me. I have recently found a new doctor that is going to try many things to manage my pain WHILE on many different types of medications for the many different symptoms. And hopefully one day I will be med free. The only support I have is my mother because she chose to finally start going with me to some of the appointments to educate herself better on my condition and treatments. I work, come home and basically put on my pj's, sit on the heating pad for a little while (as I do all day at work) then I have to lay down for the rest of the evening and most of the weekend. Some life huh? My brother had a laminectomy where they shaved off part of a disk and oh he knows everything and can't believe I have taken it so far and given up so much of my life etc etc and I am just weak human being. Father is the same way. It is all mind over matter. Well ********. If that were the case, I would be enjoying life instead of apologizing to my 14 year old daughter that I can't create wonderful memories for her instead of her mom always in pain.
I have had good spells thank goodness but far more bad than good and since my fusion in 2006 I have gone continuously down hill. I hear it all, you should be exercising, you should throw away the meds, docs are all about the money, you are weak and the list just goes on and on as if what we deal with on a daily basis isn't enough to leave you feeling hopeless in a sense. I refuse to give up finding a solution to manage my pain. I know I won't be able to continue working which is why I sought out a new doctor. I have dealt with my own pain issues for 11 years now (I am 40 now but don't tell ) ) and I am sick to death of the negativity and lack of support. I have a husband that not only doesn't believe it, will not go to the appointments with me, does not help me when I am at my worst (or any other time) and helped me zero when I had my surgeries. It is all about him. Makes me sick. Being 'broken' as I call it, I am stuck for now.
My point to all of this and trust me, this is just an overview, is that you are not alone. Until they walk in your shoes, they will not understand. Ever. My mother recently asked my doctor, "shouldn't she be exercising to help herself?" As if I am pain free enough or have the energy left after working to even fathom the idea. His response to her was absolutely not. All that would do at this point would make her worse. I wanted to kiss him. I knew this, but to have a doc state it plainly to a family member was like gold.
We are your family and we believe you. We are here for you when you need us. Never forget that. Someone once told me that because of the treatment I receive in regards to my pain and life, the next time they ask tell them you are really doing great and change the subject. If they can't offer support then they have no business knowing anything further.
I wish you the best and by the way, I believe you 10000000%
I am lucky that my parent believe me and help when they can but because of there age I also help them when I can. You know what it is like sometimes all we can do is go to bed and shut the door to keep all the problems outside while we try to just get some sleep. At least I don't feel much when I am asleep but even then I have woken up dreaming the pain and it was there to greet me as soon as I woke. I didn't think you could feel pain when asleep but I have. So we can't even escape it then at times.
Mostly my family are ok but they just come out with things that just really hurt and they don't even realise what they have done. Anything I say is taken with a grain of salt. I am so glad to have my family here who understand and empathise with the bad times. And I can give back when I am able.
I'm sorry to here that things are getting worse for you, I hope it turns around soon and you can be a little more comfortable. I understand about sitting I just can't unless I can spread out on the lounge. If I am going somewhere that I can't lay down, I know I won't be able to stay long. I start to go pail then my lips go blue and it is time to lay down now.
I wish you all the best. Allan
Anyhow she is telling me that he didn't take anything stronger than paracetamol. He told her that I should not be taking strong pain killers as he went without and apparently sometimes had to crawl to the toilet as he couldn't walk.
I'm sorry to hear about your family situation. I know it can be particularly tough since we should be able to count on family the most.
Ironically, I wrote in my blog about this very topic just tonight.
http://www.healthboards.com/boards/blog.php?b=374
I really would try to come up with a plan to make her think you're not taking pain meds anymore. I discuss this in my blog entry.
My next door neighbor had a 2 level fusion about a month before my recent fusion (mine was L3-S1). My neighbor is in his 50's and used a local surgeon known to be good but does not buy into pain medications. My neighbor said he used the pain pump in the hospital 1 time only (right before he was to take his first steps with PT the day after surgery). And though give a 7 day prescription of percocet, he filled it but did not use it.
Now, here I am on the opposite end. I can't understand that at all. I offered him my PM doc's card and my neighbor said "I know it's rare, but there's really no pain, I do take an occasional Tylenol and that's all" and he says this while he and and I are both standing outside oru houses with our big custom LSO braces on.
So I've now seen tha some people who have the same kind of problems have very little pain. This is fascinating to me. For them, they don't see how we can describe our condition or surgery as painful.
My husband seems to get it, and some friends do, but my family (they don't live nearby so we don't see each other more than a few times a year) generally does not understand. My dad had a hip replacement last year, my brother has broken an ankle, my mother had a discectomy years ago and a shoulder replacement. So they've all had stuff, but none of it chronic. The only thing I say to them, or anyone, who has had an injury or surgery they describe as painful is "imagine that it never got much better, that is what I'm dealing with" and they kind of get it (but never fully).
I'm sorry to hear about your family situation. I know it can be particularly tough since we should be able to count on family the most.
Ironically, I wrote in my blog about this very topic just tonight.
http://www.healthboards.com/boards/blog.php?b=374
I really would try to come up with a plan to make her think you're not taking pain meds anymore. I discuss this in my blog entry.
Best of luck to you.
Regards,
Ex
Somehow I just knew I was going to see this post from EX.
I have been sitting here thinking the EXACT same thing. When I first started coming to the boards and I heard posts like this I thought it might be a bit of overkill. I was wrong!! I wish I had NEVER told anyone except my hubby about my pain.
Just two days ago on the radio they were talking about a huge increase in robbery in a neighboring community and guess what the robbers were after???
Yep... prescription pain meds!! I worry because my sister lives in that town and she is on the patch. I can't tell you the lectures she has had to endure from me. LOL
I'm sorry Allen for what you are going through. These posts have been great. It's not enough that we have to live with this dreadful situation, but then to be questioned and criticised by family is so sad.
Keep the good thoughts Allen and as Frosty said.... we are your family, and we understand.
Anyhow she is telling me that he didn't take anything stronger than paracetamol. He told her that I should not be taking strong pain killers as he went without and apparently sometimes had to crawl to the toilet as he couldn't walk.
He is a dainty looking small Asian man.
Hey allan. As I told you before, he's from asia right?. They only allow the use of paracetamol/tyneol over there. Narcotic pain meds are BANNED over there in Asia.
Don't take this man seriously.
Allan, what new meds are you taking now. You've written us your new doctor has you on a new script
Yes instead of strait Paracetamol or what others may call Tylenol it is called Norgesic. It is 450mg of paracetamol and Orpheadrine Citrate BP 35mg. I take 6 a day 2 at a time. Obviously it has an Analgesic which I don't recognise and my pharmacy had to order it for me. But it does seem to make that bit more of a difference that T have only needed endone occasionally. Which suits me ok, it just costs nearly $50 a month and I haven't heard back from my health insurance if they will cover part of it or not as yet, I might have to ring them before I go in for another script from my specialist. But surprisingly it has helped me a little anyhow so it might be worth it.
I have been having trouble getting up in the mornings as the meds don't kick in for about an hour. So I have been making sure I have a glass of water next to my bed at night so I can take most of my tablets before I get up, it just makes getting up that little bit easier. And I have been having more trouble walking as the pain has been moving down my butt to my thighs. It sucks and obviously my condition has got worse. I wish I could have this operation sooner so I could get rid of this extra discomfort.
Thanks for your support nochange, my sister is very set in her ways much like my father has been in the past before he had broken his leg. She was talking to me about a TV program and I tried to say to her that everyone is different and just because they don't behave just like you doesn't mean they are mentally ill or wrong, they are just different and have different issues and life problems as I have experienced with school and with alcohol since then and others with there lives. Maybe they were mistreated etc. Any way she went all angry and said if that is the way I think that I need treatment so and so and got ****** off because I was only trying to explain it.
She just doesn't get any of it. She has always had a job and a man that has provided for her. She has never gone without so I don't think she can understand any of us only her world of material possessions. So I have learned just not to talk to her about these things though it is hard not too. She is very judgemental even though she has a problem with her weight and mood. She doesn't treat her partner as well as she should either but I'm best to stay out of that as I may get tossed out.
Sorry if I went on about this just she presses some of my buttons.
Allan
I truly can relate to the frustration you describe, as I too have experienced family, friends, etc. lack of understanding, their insensitivity, their being judgmental, etc. Over the last twenty plus years of battling chronic pain I have come to less and less expect anyone to understand what my life is like. I adopted a motto / axiom in this regard in order to remind myself that my expecting people to understand only leads to my own frustration: I tell myself that Expectation equals Frustration! I say very little about my pain, condition to others. I realize that they can no more understand all that chronic pain involves, just like I cannot fully understand, appreciate and even empathize with the sufferings in their own life. So, I try to never "expect" others to understand. One of the few places you can expect understanding is on these boards. Expectations = Frustration
I wish you the very best!
cb
P.S. I was thinking of all those poor suffering individuals in Haiti, and wondering how many of them feel like no one understands the depth of their suffering. I know that I can't. At least I have meds, a roof over my head, etc. It made me grateful. Gratitude helps me fight off self pity.
Alan, any chance of your sister going to a counselor with you - some impartial person who could help explain your situation to her? I am pretty sure your pain doc could recomend somebody.
"Narcotic pain meds are BANNED in Asia"
I'm sorry, but thats not correct. Narcotics are used in asian hospitals as they are in the west. "strong" narcotics arnt commonly used in the community, but codeine and hydrocodone/dihydrocodeine are widely used in compound analgesics in ambulatory patients. If you're in a car accident in asia, and end up with multiple trauma, you wont have to suffer with a couple of aspirins for comfort.
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The desire to take medicines is what seperates man from the lower animals - William Ostler
I agree. no one can really understand let alone grasp what it means to live with chronic pain. I lost a lot of friends cause I told them I'm suffering 24/7 from neck pain. How dare they dump me like that, you know?. There is one woman I know which I "confided" to her about this, for a while she stayed a friend and then dumped me. I see her walking down the streets and she doesn't even BLINK towards me.
So I stopped telling people about that. People I meet, friends I have now - they have NO idea. I was thinking once to go on disability and I told my friend and she said: "you can't do that, you are not disabled!" it's cause she doesn't know I'm suffering from chronic pain + insomnia and taking sleeping pills.
People think I'm normal and healthy. I was told: "you are so lucky, you're healthylet them keep thinking about that. I need to keep having people to talk with so I won't be alone or depressed.
I totaly agree Nochange - I try and keep it to my self as much as I can - when people ask "how are you today" they dont realy want to know, so I just say I'm good, or oh, I'm not so good today or somthing like that, without giving them the details of every ache, pain and pill.
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The desire to take medicines is what seperates man from the lower animals - William Ostler
So yesterday I decided that I am going to apply for Disablity SSI. Thing about it is I feel guilty knowing my family has the resources that if they were willing then I wouldn't be taking resources that others who don't have that luxury could use. But I realized they don't have an obligation to do so. So I'm going to do the adult thing and apply for SSI just to have a sense of more independence.
You wouldn't think it but there is such a thing as having too big a heart. After some helpful counseling from my brother, I now realize that "doing the right thing" has often been doing the wrong thing for my best interests. Too many times I have gone the extra mile, trusted too much and ended up getting burned by people taking advantage of my benevolent nature. Ever see the looney tunes where Elmer Fudd changes into a sucker (lollipop)?? That's me.
So I've resolved to be more conscious of situations where I can end up getting burned and insulate myself from people who would take advantage of me. Sad thing is one of those persons is my other brother.
Not to disparage anyone on these boards who have done anything but try and be helpful, but my latest drama was caused in part by trusting in the well intentioned advice provided by others and not researching things further. Here's my story so you can understand what am rambling about here.
So 2 weeks ago I went out to my parents house to "house sit" and extended my house sitting from 7 to 10 days at the bequest of my other brother. Three things happened first I had an adverse reaction to my first Myofasical Release therapy that lasted for 5 days. I later learned that this was a potential occurrence that I could have anticipated had I researched Myofascial Release therapy more throughly. Second mistake was trusting my Myoffascial Release therapist that had 12 years of experience. Her definition of Myofascial Release is not the same as others have elaborated on since my first session. Obviously I'm not going to get the same benefits if I am not getting the same treatment that provided relief for others,. Third mistake, in an efforts to expiate my recovery to my adverse reaction I took the NSAIDs that my doctor had prescribed. This resulted in my Ulcerative Colitis flaring up laying me up for another 2 days. So my week of house sitting turned out to be two weeks which was unacceptable by anyone's conventional definition.
Needless to say I won't be doing anymore house sitting. I've committed to going to my doctor appointments and coming back to my own apartment where if I get layed up again by my next Myofascial Release session, I'll be laid up in my own apartment which won't result in any drama. Along those same lines I've resolved to forgo any sedation for future Basal Branch Blocks and Radio Frequency Ablations. This will eliminate the need for me to have a driver so I will be able to return on my own to my apartment.
All of this is pretty drastic but I am convinced that any additional physical pain I may have to endure will be worth the reduction of emotional distress that comes hand in hand with all the drama.
So my advice Allan is to consider insulating yourself from your sister, that may mean you don't get to enjoy having her cook dinner for you but its a small sacrifice if you don't have to deal with the emotional distress.
I have no doubts it will be a painful transition, I know my transition will be. But in the end I think we will both be happier in the long run.
No one should feel bad for applying for SSDI (or any similar programs in other countries). American workers pay into the SS and medicare system via taxes taken out of paychecks so view them as premiums paid in (it's not as if you can opt out of those taxes). SSDI application and appeal is a frustrating process, so I recommend getting as SS attorney up front. A reputable SS attorney only charges you if there is eventual approval and the amount they can charge is capped by SS so read up on that on www.ssa.gov. Be sure to report all conditions that affect your ability to function (for example, the ulcerative colitis that may not fully disable someone but affects what meds can be taken and when flare ups do occur it also limits ability to work). I plan to be sure SS knows about every condition that affects my overall functioning consistently or intermittently.
I went out to a friends house last evening, my first real outing since my latest surgery which was 7.5 weeks ago. I am BLESSED by the 11 other ladies that are in this Bunco group (dice game we play once a month and we have dinner, etc). Each of them basically said "you should remain on long term disability and heck yeah you should apply for SS". Over the two years I've gotten to know some (a few I've known as long as 5-9 years) they have all heard about my back, neck, and knee issues as well as pain management. Somehow I've managed to find this group that cheers me on in pursuing SS while on LTD. I will say though, my answer to "How are you?" When asked by them is always, "I am doing okay" even if it's a bad pain day I don't let them know the extent. Only my husband knows what level of pain I have, and even then I hide it a bit (but if I retreat he knows). Since he's been out of work he's gone with me to PM appointments and the doctor explained to him why pain will never be out of my life and what they do to control it. My hubby encouraged me to go last night. He and my friends know these evenings can be taxing but they all want some joy and laughter in my life (there was a ton of laughter last night) to take my mind and focus away from medications, appointments and the chronic pain.
Today I'm paying for last nights 6 hour gaming and socializing (did a lot of standing and changing tables during the game). My hubby knows that the Sunday after Bunco is a rest day for me and we schedule nothing unless it's something we can't avoid.
I hope everyone finds a few people that can cheer them on and not get dumped by friends who can't handle the chronic condition of a friend or family member. A few years ago I had a co-worker who was diagnosed with breast cancer. She said some people seemed to drop out of her life even before the tough stuff happened (before surgery, chemo, hair loss, etc). Amazing considered how prevalent breast cancer how many lives it touches, and the media attention it gets.
Spine, I was just going to write exactly that - every worker pays in to these schemes incase he ever needs to use them - you are taking back what you have paid for all your working life, no different to making a claim on your health insurance. Dont feel bad, this is the reason everyone belongs to those schemes, incase the unthinkable happens.
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The desire to take medicines is what seperates man from the lower animals - William Ostler
Today I just feel nausea and depressed I stayed at my parents house last night just to get away as my sisters son and his wife arrived from the UK and I just know how my sister would have reacted. It would have been a big show and I just couldn't be there for that. But this morning my dad asked me to work on his computer but for some reason everything went wrong and I had to restore the computer to a month of so ago when we did a back up.
I am home in my room now but I still feel bad. I am on the verge of a little breakdown. I feel the nausea and emotionally just feel drained. I am going to have a sleep as my sister and partner just walked in without the visitors and I haven't said anything. It is as much as I can do to write this I am just completely exhausted. and feel like crying. I don't like what is happening and I can't say anything or I will make it worse. Why is it that she won't listen to me anymore? Has she just had enough of me? I don't know but it is hard to live under the same roof and have to hide what I feel. I can't mention pain again or she goes of at me. So I have to hide it.I am going to have a sleep now for a while. It is only 2.30pm but I don't want to see her. But this is where I live so I have to work through this some how. Wish me luck and I will try to hold it together without crying or showing her my desperation and hurt. She really hurt me but I am not going to let her see that. I will just pretend everything is ok and just spend most of the time in my room. I do isolate myself a lot now anyway so she won't even know. It is so cruel I will never forget and now this is causing my pain to get worse as well. Anyhow bye for now, I am exhausted and going to sleep for a bit then work it out later. Allan
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25-Nov-2010: ALIF fusion L5-S1. 9 years of Chronic lower back pain. Nearly 18 months of pain across my upper pelvis, through my butt and down my left leg into my foot. Sciatica relieved by surgery.
allanbruce, Sorry you have to be going through all this. It certainly is terrible to live under the same roof with someone you know who doesn't have any sympathy or empathy for you. Please don't plan to recover from your surgery under her roof. I hope you go to your parents for @ least six weeks after surgery. Is there a chance you could even live with your parents? Keep your chin up!!....janiee
) ) and I am sick to death of the negativity and lack of support. I have a husband that not only doesn't believe it, will not go to the appointments with me, does not help me when I am at my worst (or any other time) and helped me zero when I had my surgeries. It is all about him. Makes me sick. Being 'broken' as I call it, I am stuck for now.
Re: Family seem to have little understanding 
