I've been thinking about writing this for awhile, but usually do most of my posting on my phone while lying down, & this will be long. Another post talking about drinking while taking meds, & being very depressed spurred me to share my experience.
I grew up with a Mom who had chronic pain, she had pretty much every disc issue listed. I also recognize the names of many of the meds she took including soma, neuranton, (sp), flexiril & methadone. And oh yeah, lots of valium.
She also suffered from depression, and IMHO, had a small degree of biopolorism that was never diagnosed. For a time, she was also a pretty heavy drinker too. Not a good mix with all the meds.
I really had no understanding back then of what it was like to live with chronic pain, and here I am now, in the same boat as my mom. My mom truly was a "drama queen" so it was hard to know if the pain was really that bad, or she was exaggerating for attention,(she was a very needy person) & which was what most of us thought was going on. She lost her home, her (idiot) boyfriend, was on permanent disability, and had strained relationships with much of her family, especially her 3 kids.
This stuff started when I was maybe 11 or 12, and as the oldest, much of the caretaking of my 2 younger brothers & her, fell to me. She was a single mom with no spouse for "back-up" & was incapacitated much of the time. We had money for groceries, but many times there wasn't food in the house because she was either in too much pain or too depressed to go to the store. I don't know how many times we ate cereal for dinner!
The hardest part was her "woe is me" attitude. She was always down in the dumps, unless she had a new man in her life, but that's a whole nother story for another forum. She also blamed the world for her problems, & felt everyone "owed" her something. She complained CONSTANTLY about her issues, & my brothers & I would cringe if we were in a store & the clerk said "how are you today", because she would stand there & tell them everything that was wrong in her life! Quite honestly, & sadly, when we were out of the house, we did everything possible to avoid seeing or talking to her, because we were so tired of hearing about all her problems.
She made me her "therapist" (even though she had one) at the age of 5, and would have long conversations with me about all kinds of adult problems, including her health issues which were often way over my head. She also threatened to kill herself many times, & when I was in high school, I would tip toe in her room after school with a knot in her stomach, wondering if she finally made good on her threats, or it happened accidentally because of the mix of pills & alcohol.
As I got older, what became so literally maddening, is that for every complaint about her pain & how it was affecting her life, myself & other family members would offer suggestions to deal with it, & it seemed she would never take them. For example, with a lot of our meds, we have to eat with them right? My mom had a serious weight problem, & I remember once when she was blaming all the weight on the meds telling her that if she needed to eat with her meds, she should eat yogurt or a handful of crackers, not ice cream or brownies! Now I understand that it was more the depression about the chronic pain she was in, & her inability to cook healthy meals that caused her not to eat healthy.
I found out later that she resisted some of the Dr's recommendations like surgery (I don't blame her, I'm right there with her on that one, & I think it would have been disastrous for her). She also would not try the steroid epidurals, or any of the other stuff like that, which was her choice, but might have made a huge difference in her quality of life. She did have some interaction with a PM, but from what I could find among her papers, all he did was prescribe her methodone.
Speaking of meds, some of them made her so drugged out, it was hard to have a conversation, & her memory was a mess. After taking neuarontin for awhile, I now get that, & refuse to take it anymore.
And of course, with a chronic pain parent, do I even need to mention how many events she/we missed or were extremely late too?
Pain was so much a part of her life, that when I said her Eulogy & wrote her obituary, I included the fact that now she is pain free, and will able to dance to her heart's content (something she loved to do). She passed away on my daughter's 4th birthday almost 9 years ago of heart failure.
My mom really did live a sad existence due to chronic pain for a long time, & I am sorrier than I can say that I wasn't more understanding. It makes me cry every time I think about it, but as I think we all have experienced, people who don't live with chronic pain don't understand it.
For those of you who may be wondering how I could talk about my mom like this, let me tell you she'd want her story told if it helped someone else, so please don't think I'm disrespecting her memory, because she would not think that.
So here I am, floating in the same boat that my mom did, with 2 children of my own (10 & 12), trying desperately not to make the same mistakes my mom did with us, so my kids don't end up not wanting anything to do with me.
God knows, I'm not an expert, but here's a couple of things/ways I treat my situation with my kids, based on what I learned. I'd sure love to hear your thoughts & what you do, because I could use all the help I can get.
1. I'm blessed beyond words that I have an amazing spouse who picks up a lot of slack. If I was single, I'd make sure I had friends/family to help with whatever needed to be done, so that they weren't forced to grow up too fast. I HATE asking for help, I have a lot of pride, but for my kids I would do it if I have too.
2. No matter how bad it gets, I never, ever, talk about suicide in front of my kids. I think we've all had a thought or two about that (I'm sure 99% of us would never do it, but sometimes it gets so bad the thought of it flashes through our minds).
3. My door is always open. Meaning, I spend a lot of time laying down in bed, but my kids know they can always come in my room and lay down with me & talk about whatever is on their mind, or watch TV (we watch way more than they should, but at least we are spending time together), or I try to help them with their homework when I can. Of course, the big joke in our house is that Mom has a Master's Degree & can't do 4th grade math!
4. I am teaching my daughter to cook; not necessarily because of my pain, but at almost 13 it's a skill she should start learning anyway (as I'm typing this, she just burned some kielbasa, oh well, that's how you learn) . Hopefully as she gets better at it, she will be able to make full dinners. She enjoys it very much, & does not consider it a "chore" (yet, anyway).
5. No matter how bad the pain gets, I make sure to go grocery shopping. I've had to really change my "style" regarding that; first of all, I'm one who does not believe in taking pain meds & driving, so guaranteed I'm going to be 'dying' when I get home. Please, no debate about that, there are plenty of other debates about this issue all over the board. I also make sure that someone goes with me, so they can bend down to pick up the low stuff, unload the cart, & put the bags in the car. Also, when we get home, they have to carry the bags inside & put at least the perishables away, because by the time we get home, my back is toast.
I could have my husband do all the shopping, but, well, you know how that can go
He doesn't cook at all, except maybe eggs, so I really hate to send him to the store by himself. Plus, I'm not willing to let go of the control of that. I try to go shopping with him more than the kids, so all the burden doesn't always fall on them, but sometimes that's the way life goes. Since hubby doesn't cook & I often can't, they eat way more frozen stuff than they should, but at least there is always food in the house.
6. As far as what they know about my condition, they can't really understand the in's & out's, but I did show them a picture of a spine & explain that some bones are on top of each other because the stuff in between is gone, etc.
7. They have obviously seen me in pain, but I do my best not to complain about it in front of them. I'm nowhere near as successful as I'd like to be, but I do try.
8. They do know that my condition will never go away, but that I am trying get to feeling better so I can do more activities & things with them. Sadly, I have missed out on way too much this past year.
9. I also try not to be depressed around them. I went through a whole menopausal depression that was hard on the whole family, & they have dealt with more than their share of that.
10. If I am talking about my health to friends or family, I try not to do it within earshot of the kids. My daughter has already expressed that she finds it embarrassing if I do, & I remember that all too well...
Well, this is a really long post, & my back is really hurting from sitting at the computer so long. I really shared my story with everyone in case you are doing/handling some things similar to my mom, so you know how it might affect your kids. Believe me, I'm not judging, because there is certainly no handbook on how to make sure your chronic pain does not traumatize your kids, we are all doing the best we can. But maybe, someone out there might see themselves in some of the behavior and the affects it can have, & want to make some changes.
Best to you all. Susan
We can't always control the cards we are dealt in life, but we can control how we play the hand