My kids understand what's going on with me, but it seems as if others just don't have the patience, so I don't bother explaining to them what's going on. They just see me limping and in pain and are not curious at all about what's going on with me. Yet they want to be my friends and take me out to 'party!'They are disappointed when I have to turn them down, even though I explain to them how I am feeling. They just don't get it. I guess. These type of people I have learned to have limited contact with because I always feel that they really don't want to understand what's going on. Of course, I can't force the issue on them either. I do have some really great friends that I hang out with and they are so good to me too. I think I will stick with them!! (smile) Gentle hugs, Laurie
No. No one really seems to care, in my life. It's sad, but it's a fact. Apparently, everyone I know thinks it's perfectly normal to inject a chemo drug (for lupus) in order to be able to get out of bed and function somewhat normally.
I don't get it, Laurie, but it sure has made me look at chronic illnesses and pain a totally different way.
HI Red - I understand perfectly what you are saying The old saying that ''if you were in my shoes you would know what pain is like,'' is really true, isn't it? There is no way I can force this issue of Fibro on anyone, so when they ask how I am feeling, I find myself giving them the answer that I think they want to hear. Otherwise, they want me to explain what's going on and it is just ridiculous. They are not interested. But yet, they will invite me out to party or go dancing and when I have to turn them down they are disappointed! Jeez! I can't win sometimes! However I am grateful that I have my kids support. I view chronic illness and pain a lot different nowadays to. I have accepted that most people are not interested in what's going on with me. Being on this website has really saved me in a lot of ways - especially the isolation I feel at times. I do hope you are having a fairly good day, Red! Laurie
I have had both sides of the coin, people who don't understand me and when I don't understand others. You are one lucky Mom that your kids understand or are at least trying to. I remember I was 15 when my Mom took some time, went back to school and switched careers due to her arthritis, at this time I had very little compassion (snarky teenage daughter to mother crap), didn't offer to do things that I was at the time perfectly capable of... Any ways what I'm trying to say is go and give those kids a big hug and a thanks. Next, the side where few people try to understand, I learnt people who aren't in pan will never understand it, you say worse than your worst flu, they don't get it or better yet say no way. You can say, you know the normal pain scale, while when your thumb gets caught in the door that hits what number? (I usually get an answer of 6) And I then went to say, well my pain is that painful or more painful, rarely less painful and imagine it's your thumb then your hip then foot... It just confused the poor mortals. So my studies have shown you have to be in pain to truly understand it.
Hi Shawna - The answer that you give to those that don't understand, "It's worse than your worse flu" - is almost the same answer I give to them. They just don't get it. It is absolutely true that, at least with Fibro, a person would have to be in that kind of pain and REALLY feel it, to understand what we all go through. Yes, I am grateful that my 2 kids understand. They are in their 30's now with families of their own. There is one concerning factor that I have, and that is my daughter, in her early 20's had to have left knee surgery. Her right hip has been bothering her now and I fear that maybe she is going to get Fibro. I haven't mentioned this to her, as I don't want to scare her, but I am sure she has thought of it, after seeing all that I go through. She works at a animal hospital as a Vet Technician and has a degree in Anesthesiology. So, she does lift heavy dogs and does a lot of bending down and so on. She is recently divorced and has an 8 year old son, Hunter. She is going through some heavy stuff right now, and I do know that this can trigger flare-ups. She lives a couple of hours away from me, but we do talk often and she will give me up-dates on how she is feeling. My son is doing great. No problems so far. Hug! Laurie
I would like to think that my kids understand. they are also grown. I was talking to my one son the other day and I said I wish you could go through this for one day to understand.( not that I would wish that on any of them. and it was not a mean talk.) and he said I wish I could have it for one day. it brought tears to my eyes that he would go through this pain to see what it was like for me. I never loved him more than at that minute. so do they understand, probably not, but maybe sometimes they would like to. I will also stick with them Laurie. have a great day and thank you for the great discussion.
My Mom is the best at understanding, my husband is not bad as husband's go. After he heard the autoimmune with spinal stenosis, he just tells people I will end up in a wheel chair, and that is where it ended, he just really doesn't want to know much more. The rest of the world expects me to be the old me, no matter what, as they don't feel good either. So not a lot of understanding.
That is why this site is so important to us all! Here is where we get our understanding, we hold each other up!
Hi SK - I'm sorry about your husband not understanding what you go through. I guess all of us have some family members and other people who don't show an interest in what goes on with us. I agree, this site is what really helps us through! Laurie
Hi gram - my son, Jason is the same way as your son. He is so sweet to me and always offers to help me if I need it. I can do a lot of things on my own, but on those days when I am just too sore, he comes over to help me and also will drive me to the store, if I can't drive due to the arthritis in my neck. I can't turn my neck from side to side when it hurts, so NOT a good idea to drive like this! LOL On heavy snow days, I used to be able to get all the snow off my car. Can't do it anymore. Usually I can just wait for the sun to eventually melt it off. But if I have an appointment, Jason will either take me if he's not working that day, or he will get the snow completely off my car so that can I drive it. I am very blessed to have him in my life. My daughter lives in California, but we talk often. Laurie
I think it just crushed him, Laurie! He's good, but not the same, afraid I will fall apart, or perhaps he sees that I am falling apart! He's a good ole' guy though, he says I cry and scream in my sleep, so I guess that would put anyone off, somehow. He feels helpless after running me all over 4 states for 7 years to get me help!
Forgive me for saying this but at a certain age, the mind is not yet completely finished growing in maturity and self-control. The people who don't understand you and like you well enough to party but who don't understand anything beyond that may well be the same people to sympathize with you once they get a bit older and better able to understand what's going on. Or not. Fibro is a hard illness for most people to wrap their minds around.
I've been extremely lucky in having a family that is trying to understand what's going on with me, plus other people I share it with seem to get it. Maybe because I look so awful? I don't know.
You'll find people who are as good as gold who care and "get it." They are the ones worthy of your time and friendship. It's a harder situation if it's your family. Be thankful that your children do. That's a huge plus.
SK, my husband sounds very similar to yours. I dont think he understands everything that I am going through...but not necessarily that he doesnt' want to..it's more that he's scared of the unknown and what shape I'm going to be in in the future. He is a "fix-it" type of person and gets very upset when he sees me in severe pain or so severely fatigued and can't do anything to "fix" me! He has been great and was always suggesting "getting another opinion" just to see if there were any other treatment options that we werent currently aware of. We, too, have traveled to several other states for second opinions and advice. I feel very blessed to have him in my life!
How sad that no one seems to care in your life and they think it's no problem for you to be taking chemo drugs. I sincerely hope that changes for you and you find more mature, caring people who think your illness is worthy of their notice and caring.
I agree, fibro does help one to see chronic illnesses and pain (or any illness) in a different light.
Thanks for responding Peturnia - I do have friends that are 'as good as gold' - including a friend that I have known for 60 years! We met when we were only 3 years old. We have been through just about everything together. We email each other every day and chat on the phone twice a month. I am divorced, and I had a very hard time with my husband understanding what I was going through. He was very impatient with me as well. However this isn't the reason I asked him to leave. Even though I have Fibro, once I ended the marriage I was the happiest I could ever be, however the illnesses I developed while married to him have stayed with me to this day. It's a price I paid, I guess for not having left him sooner than I did. Stayed with him too long. My fault! Laurie
Laurie, I think you are incredibly blessed to have support & understanding from your kids, and that you have really great friends that are good to you.
I also am very blessed, but have lost certain friends not because they didn’t want to be my friend, but more so because they didn’t understand why I continued to make excuses for not being able to do things, I only share my dx, & symptoms with those I am close with. It can be very hurtful when a friend does not understand, but when I think about it, I think unless you are suffering or living with someone that is suffering how can there really be an understanding. I’m not sure, or perhaps I’m just making excuses for them.
I have a friend, very educated, have known her for 35 years, I finally explained to her about my fibro ( she never asked why I didn’t go back to work) been out of work 6 months, anyway, I spent a lot of time explaining my symptoms and still every time I talk to her she says you have just had to much stress in your life, she thinks if I eliminate my stress, I will get better, another friend thinks if I had a few drinks ( alcohol ) I’ll be fine. They have only known me to be so active, another friend thinks I must be clinically depressed, in fact with this pain and fatigue I should be depressed. Lol
So I just go with the flow, thank. God for my family and take one day at a time.
Hugs & blessings
dee
Hi Dee - I think you and I must be twins! I have had friends suggest the same things you mentioned. When the Holidays are around - and I get invited to a really nice party, people know that there is something going on with me and they always try to 'push' alcoholic drinks in my face, saying I will feel SO much better if I relax a little bit. I make excuses too , as My Fibro is a personal thing to me with quite a story behind it. It doesn't need to be shared all the time - only to those I trust. Some people also thought I was clinically depressed too! LOL If only they knew just how deep fibromyalgia goes in regards to pain, emotional and mental disruptions. Never a dull moment for us, that's for sure! Thanks for responding! Gentle HUGE hugs! Laurie