I was just wondering if anyone else is going thru what I am? I have been invited to different events and then when the time comes it might be a bad day so I have to back out of the plans. Instead of the person understanding they seem to take it as a personal thing. Another thing is one of my children will ask me to babysit on such and such and such a day and my reply will be i will let you know that day. It seems as if noone can understand that I just dont know how I will feel that day and that I have to plan day by day. This makes me feel bad when they seem to think that I am just making excuses. I sometimes feel as if they dont beleave that I am in pain and I often wonder how to make them understand. Maybe we should write a book for family and friends of chronic pain suffers and then maybe they will find truth in what we tell them.
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HOW DO WE MAKE THEM UNDERSTAND?
- By MORNINGDOVE
- Posted February 23, 2009 at 10:35 pm · 12 replies
- In Family and friends
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Carisoprodol Cancer Surgery Pain Chronic pain Advil Depression Morphine
12 replies
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- By quietthyme
- Posted February 28, 2009 at 5:28 pm
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Morningdove, It is the same with me. And it makes me feel so bad that I can't be dependable. Have you ever heard the spoon story? If you haven't google it. If you cant find it let me know. There is also another one, cant think of it right now. But when it comes to me I'll
write it down and send you a copy. We just need to be forgiving of ourselves. We do what we can. Just want you to know, I feel ya.
quietthyme
- By MORNINGDOVE
- Posted February 28, 2009 at 9:26 pm
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I appreciate your reply it came at the right time. My daughter wanted me to babysit over night tonight but I had to say no so now she is mad at me. It makes mr feel sad and angry for her not understanding.
- By deebelle
- Posted March 1, 2009 at 8:42 am
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Had the same issue this summer when my older daughter wanted me to watch my grandson for the summer who is 10.....I would be just taking him to the pool; just making his lunch; just caring for two large dogs...just...just..just.......I told her I did not think I could handle it. She was mad the whole summer at me. I stood my ground though with establishing concrete boundries to care for ME. I knew, given my pain, that there was no way I could do it as every day with pain is different......
Someday they will get it! You just need to care for you. We have as they say "just one body."
Take care;
Dee
- By MORNINGDOVE
- Posted March 1, 2009 at 7:35 pm
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I so agree with you and want to thank you for sharing with me. Its nice to know that I am not alone. Hope all is well with you.
- By Lisa35
- Posted March 2, 2009 at 9:44 am
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I completely understand my husband was very supportive in the beginning now it's like I should just magically be better. I have 3 young children and it's probably the hardest on my 9 year old. My family lives an hour and a half away so I've only been up there once since this started.
- By MORNINGDOVE
- Posted March 2, 2009 at 1:00 pm
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Lisa,
Wow you do have your hands full. I raised 7 kids and thank God I did not have the problems I now have when they were young. Maybe you could have a doctor explain to your husband what you are going thru-men do have a hard time understanding but boy when they are sick the world comes to a halt. I wish you luck.
- By angelquin
- Posted March 2, 2009 at 7:20 pm
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My honey and I were just talking about this the other day. I have 2 grandsons the eldest is 8 yrs old and the youngest is 5 yrs old and he is a special needs child. I feel so bad when I can’t baby sit my grandchildren (for my daughter). She doesn’t ask me to baby sit my youngest grandson anymore because she knows I just can’t do it, even if I was having a “not so bad day”. He requires constant attention and a lot of lifting and changing diapers etc. He is a lot of work, but it still makes me feel bad. I think that my daughter thinks that because she doesn’t ask me to watch my youngest grandson that I should always be willing to watch my eldest grandson one who doesn’t require all the physical work. She just doesn’t understand that suffering from Chronic Pain means; NEVER knowing how I’m going to feel from day to day. I’m ALWAYS in pain; I just have different levels of pain. I’m on very strong pain meds like Morphine, Hydrocodone, Carisoprodol and Pristiq (for depression)
You know what really makes me angry and hurt....is that my daughter knows that I struggle with chronic pain everyday but she doesn’t call me just to see how I’m feeling without ending the call “can you watch him this weekend”? It would be nice for her to call just to check on me or just to say hi and hope you feel better. But, I am NOT going to let myself feel bad anymore for not being healthy! I don’t wish what I have to deal with every single day of my life for the rest of my life on anyone. I raised my children very well...I was the super-mom type and I did it with chronic pain. I finally had to have surgery in 2004 which I feel, left me worse off in the pain dept!
So now I’m just going to say NO when I can’t baby-sit and not feel bad for it either. I love to have my grandkids over because I love and enjoy and miss them very much but she has to understand that I just can’t when I can’t and when I can then I can. I thank God that none of my kids have suffered from a major trauma in their lives. But she will never understand because she doesn’t know what it’s like to have chronic pain, and I pray to God that she never will! But she can have some “Empathy”. And that goes for everyone family, friends etc.
We need to ask ourselves this....if they want to be insensitive to our needs then why should we care what they think or how they feel. You see it works both ways. I know it may sound mean, but I'm tired of not being taken seriously just because I don't have an obvious disability, like leg braces or something like that. It does NOT mean that we don't suffer just the same! We are valid and our pain is valid!!! We matter if not to anyone other than ourselves, then so be it! I would trade places with their healthy bodies in a heartbeat.
Maybe we should write a book for those people who are insensitive towards our needs. I would call it "How to have Empathy for Dummies"
Let me know what you think....sorry the post is so long.
- By MORNINGDOVE
- Posted March 2, 2009 at 9:57 pm
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Angelquin,
Yes my daughter acts the same way. She is 21 the youngest of seven the other six are boys. I never so much as get a call where she ask mom are you ok or what can I do for you. I expected more from her seeing her dad just died in Sept six weeks after he found out he had brain cancer-but no she did not learn how short life can be. I feel like you, I have also choose not to call her or give in to her whims-it is not all about her I count also. You are right people do not think that one is ill unless they see something physicaly wrong with the person. This makes me so mad at times I say lets write that book I bet it would be a best seller.
- By SharBernie
- Posted March 4, 2009 at 10:05 pm
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Just read your post. It's sad but no one understand until they walk in your shoes or live with you 24/7. It's non-relate able to them.
Believe it or not my primary doctor does NOT understand. She thinks that Advil should take care of my pain. So how I am transferring to another doctor.
- By NCgrneyedlady
- Posted May 22, 2009 at 12:03 pm
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I fully understand and I don't have an answer. This is one of the reasons I no longer volunteer for events at church or participate in church committees or circles because I can feel good for several days and then WHAM, a flare. At least my close friends and family understand. In addition to FMS and RA, I also suffer from chronic migraines which are triggered by shifts in the barometric pressure. You can imagine the havoc that can wreck on plans!
- By Bex09
- Posted November 5, 2009 at 11:17 am
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Hello MorningDove.
I have only just joined Inspire and I was so relieved to read your discussion!
I am only 18 and have been in pain for 6yrs ~ with it being constant for the last 2yrs as a result of an operation which was supposed to help.
I was so relieved to find that its not just me who knows family and friends become fed up over long term/chronic pain. I have found out mine wont be getting better and I am saddened by that. Its nice to know I am not just seeing things negatively and there are actually others who feel exactly the same way I do.
Thankyou.
B
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