I met a new friend in our support group today. She was expressing how she found that" people in her life expect her to be able to do the things that thy do." Knowing fibromyalgia is knowing that... and accepting that... this is not realistic. It has come to my attention ( and I wonder if others may feel the same) that It will never be about others understanding or accepting. Its always just going to be about me accepting it. I say "H-E- DOUBLE- L" with those who do not or will not ever give a S@!T. Further more, We are funny species. This we have to remember! In side a type of natural order or (Survival instinct) of things controls our focus. Just as we are focused on our selves each day because of our pain of infliction at the time, so are the ones around us, when it comes to them selves. By this I mean, they get to busy, they are unhappy about something, the list goes on. All we can do is give the ones we love and care about the heads-up. I have already told my family that I do not need to hear them ask me how I am each day. And also...WHEN I CRY...Its ok!!!!
It's hard for us to accept ourselves isn't it. Even after 7 years I have my moments where I just think, "Sod this, I'm going to do what I want to do. There's nothing wrong with me. I'm just being lazy and need to get off my backside. l will be much better if I do..."A whole list of things. I will never learn and have myself to blame for some of my own suffering because I try to be a superhero. A lot of the time its worth it though because I have achieved something really important to me, or what "normal" people do. But then "normal" people see this and think I can do this all the time. They don't see you when you get home and collapse in tears.
It IS ok for us to cry. I tend to hide my tears because I don't want to upset others but they need to know that we feel sad sometimes because of the pain and everything. We dont expect them to fix us do we. Just to be there is enough.
You both are right. I think this is a subject close to heart. In the beginning of my fibro journey my family was there for me 100% and now it's like they don't want to know. I try my hardest to keep my emotions to myself and hide in the bathroom to let the tears fall. It's sad but me to, I have to accept what it really is...Hope you gals have a good day, Gentle hugs to you both, Robin
One of the reasons people have a hard time believing/understanding our condition is that we all become good at hiding it. I feel silly out in public if I all of a sudden get a sharp pain and can't walk, then 5 minutes later its gone and i can walk again....hard to explain to non fibro people, so I just pretend I have to stop for some reason until the pain goes. last week I met some friends for coffee and then at the end said I was off to get a taxi home, one friend said "why get a taxi when it's only 20 minutes walk home" well I tried to explain that if i walk 20 minutes home in the heat and up hill I'll be too knackered to do anything else the rest of the day.....she had a look of complete shock and replied "why is that". I could have knocked her block off as I must of explained to her about fms about a million times...lol. most of the time I don't tell people I have fms unless i'm going to spend a lot of time with them, I just say I've got a bad back (well it's not a lie, I do have)
I too sometimes think I'll do a job around the house like I used too, last week I cleaned and cleared out under the sink, went and bought a shelf unit, put it all up, put up some hooks for my washing gloves and scrubby brush and then put everything neatly back away. It took most of the day and I was so proud of my tidy cupboard, I showed it to my daughter and husband when they got home with a kind of drum roll ta da....... they looked like they were going to piss them selves laughing at me being so pleased over my cupboard lol. Anywho I payed for it the next day as my body was so stiff and painful, (that was my point ) ha ha kind of lost my thread of thought. xoxo
I think accepting our limitations is the hardest thing to deal with when you find out you have fm. I went from being a teenager active in sports to sitting on the sidelines watching everybody else and feeling like poo because I couldn't join. I continued in dance and gymnastics through high school and paid dearly for it. My teacher didn't understand why I couldn't always participate. I think the hardest for me was to except that I wouldn't be able to compete as a gymnist. That broke my heart! I now work full time and MOST days it is tolerable. When it's not I'm in bed before my husband gets home at 7 pm. I feel terrible because we don't get to spend much time together and I slack around the house. On top of that he hates when I hurt because he can't fix it, so I feel like I need to cry alone. He always asks why I hurt or what he can do. It's so hard for me to tell him I always hurt and there will never be anything he can do about it. He is having a hard time getting to the point where he understands that it's ok for me to cry about the pain or the depression it puts me in and that I just need him to hold me or let me cry it out.
It is very difficult for us to fully understand everything going on in our bodies, so imagine how difficult it is for others to understand and deal with it! I am certainly not taking up for anyone who has been insensitive, or unkind toward you, but this is FMS very complicated!
Knowing where other people are 'coming from' can probably keep you from being deeply wounded, sometimes people are not compassionate toward others until they actually become ill themselves, and still, some just never seem to 'get it'. Wisdom comes at a high price sometimes!
Silent, we are so fortunate to have you here with us, it is a pleasure to get to know you, please know that you can turn to us anytime. We care, and we understand, as much as all of this can be understood!
I can do that to. Its kind of fun to tackle things you have been wishing to do for a while but have to wait just for the right time. Sometimes I think the time will not come soon enough. Sometimes, I the time will come, and I think I will wait for the next break in pain and just rest here and enjoy not being in pain. That s usually a regretful decision though. know I really know the meaning of the saying "Why put off til tomorrow what you can do today." OMG, I bet its the most beautiful cupboard in the whole world! xoxoxo
Awww lol. I know exactly what you mean. Yep, we're good at faking being "normal", then people actually start believing we are. Grrrrrrrr. Gotta bite them when they make their stupid comments though
What you said about " On top of that he hates when I hurt because he can't fix it, so I feel like I need to cry alone. He always asks why I hurt or what he can do. It's so hard for me to tell him I always hurt and there will never be anything he can do about it." This is such a good topic. How do we express this to the people in our lives, and yet at the same time expect them to except us at our worst. I don't know...Its like...I don't want to fight this battle for affection everyday...I'm to tired.
You have a really good perspective. A healthy perspective. One that only comes from living and experiencing life and all of its difficulties. I think we as humans often times have great expectations placed on other people and they in turn place great expectations on us. People are people and we all think about ourselves to some extent. And we view the world through our own frame of reference based on our own experiences. Some people don't have a lot of experience. And some people are insensitive especially men. I being a man did not understand my daughter in law with FMS. Now I sure do and I am a better man for it more sensitive more humble and more in pain. I am a better man because of my circumstances.
Actually I found out that when we cry the chemicals in our body help with the pain and gives some relief...I have experienced this when i couldn't get any relief from the arthritus pills....or my massage mat...or even a warm shower!!!! Those days I find are so hard to deal with when everything aches and you just want it to go away and never come back!
I understand your husband for I am one. We me do feel the need to fix things especially when it involves the ones we love. But we also have short memories. He does need to be reminded often of what his task is, that he can't fix it and that you need him just to hold you and that is enough. My wife says she can handle my pain and my issues with FMS as long as I don't shut her out. Together is better. So please don't cry alone. Just don't give up on training your husband. We need it believe me.
Let it out people! Cry, let the tears flow. It's good to cry; it is a good release even if your eyes do get all puffy, it is totally worth it! I have cried my share of tears, both alone, and in public. Just the other day, after one of my acupuncture treatments, I cried, it didn't help me at all & I guess I was again, disappointed with another treatment I tried to cure this constant pain. I'm so frustrated because I have tried so many things. I'll hear about something, or read something, or someone suggests something and I'm such a sucker, I'll go and buy it, or try another alternative vitamin or massager, or tens unit and on and on. Then I try it with high expectations & get so excited that this new remedy will really work, but, in the end it doesn't. I've read so many articles from doctors trying to find out what causes fibro, and they are all different. I suggest things to my doctor for various tests. She is open-minded & will try my suggestions but nothing works. Now I'm thinking about getting laser therapy. Has anyone tried this? Please let me know if you have and the good results before I spend more money on yet, another treatment. I'm running out of options. Luckily, I have love and support from my wonderful husband and friends. They all believe me because they know me & I am not not a fake, if it hurts, they know, if I'm okay, they know. This is a good support group but it would be really better if we could do something about this condition we live with everyday, but then, as sad as it would be not to share each other's story, this chat line would not exist if they found a cure for us. Until then, here we are with our stories.....
I don't know if my input will help but, I have been battling FM for about 12 years now, the first four it got progressively worse, then they found out that I also have Chiari Malformation. After the decompression surgery, it was not as bad, but was still there. The one thing that I have found that helps, is heat. An electric blanket on low, or a heated throw seemed to help a lot. I spent 4 years coming home from work and wrapping up in an electric blanket, and staying there until I went to bed, after doing that I found I could sleep a little better, and sleep is the big thing that helps. A hot tub or jacuzzi is good also. If only I could follow my own advise, one of the last times my Mother was with us at Christmas, I had pushed a little too much, I got maybe 4 hours of sleep in two days, when they arrived at 3:00 am, I was up wrapping Christmas presents. The next day I could hardly get out of a chair by myself, so she got to see FM at its worse and I got a lecture at 40. Needless to say, being inactive lets your body gain weight, and it is hard to explain to people that going to the gym everyday or running just does not fit into your game plan. I have explained it too a few people by asking them if they have ever came down with a bad case of the flu, when they tell me yes, I tell them congratulation, now they know how I feel everyday. My flu like symptoms have set up a permanent home so I guess they are here to stay. However, I am very blessed with a family that loves me and tries to understand, I have a job that I love and luckily it is not real physically demanding, I can still shop with the best of them, I just have to pace my self, and having FM has taught me a lot about understanding, acceptance, and patience, so until they find a cure, I am still going to be here in the slow lane but still here.