Hi, I’m new to this forum. I’ve had some fibro symptoms for 20 years, but in the last 2 years it has really altered my lifestyle. Some people in my life know I have fibro and some don’t, but with everyone (except for my closest friends) I feel embarrassed when I rest a lot. I almost feel ashamed. I know I’m harder on myself than other people are on me, but my self-esteem has taken a big hit. I’m very lucky because I can work 28 hours a week, so I have a lot to be thankful for. But it feels sad to come home and go to bed at 4pm. I think I’m in that place where my life still looks pretty normal unless someone knows that I rest a lot when I’m not at work and part of me really wants to keep up the appearance that there is nothing wrong with my body. How have other people coped with this?
Wow, I can relate but I admire the fact that you can work because I would not be able to work 28 hrs a week! I do a couple of things each day. We have to pace ourselves or it will get worse to do too much. Today went and took items to donate, showered, did some art work and will go to a meeting later but by 8pm I will be falling asleep!!! I am also 62 so maybe that is part of it but I know what you are saying. They say meditation helps stress but may not be for you or prayer. And a good Rheumatologist. Not enough is known about this condition but they can help.
People really don’t understand Fibromyalgia and it is important to educate them. There was a letter I saw on a Fibromyalgia site where it explains energy and how we have to pace ourselves. The energy explanation is explained by the spoon theory. But sometimes they still don’t get it and I guess that is their problem!
The more I talk about this with people the more people I find who have this! It is actually really a relief to find like people!!! I just keep reminding people that I have to pace myself! Talk about this with people. I think the more awareness there is the more people will get it. And some people are so understanding but not all will be.
It does effect my self esteem but I have had to find the new normal! And celebrate my own successes and not compare myself to others cause everyone is different. I still feel guilty, don’t get me wrong. I hope you have a support system. So I guess I even have to be proud that I rest a lot cause that is what I need for me, not anyone else! I have a sister in law and friends who have it and they get it. Please take care of yourself and rest. If someone does not understand then, again, that is their issue! Take care. Hope this helped. Also maybe just do things u like less often or spread it out over many days. Do something that makes you happy every day. That does not take a lot of energy!! I just think it is not good to hide this from the world put it is your decision.
I just wanted you to know that “I hear ya”. Over 30 years ago I went back to school so I could have a profession where I could work for myself and have complete control over my schedule and work environment. Mind you I did not do this because i had children or another breadwinner in the house, I’ve always been single and lived alone, no kids, because my CFS symptoms hit me early in my life. But as an owner of two businesses, I had to maintain the impression of health and that I was so sought after in my field that I was working more than full time. Potential clients and colleagues wouldn’t value me as an expert in my field if they knew I spent half the time in bed, or laying on the floor of my office to rest from the chronic pain.
So much of my energy went into hiding my illness just so I could maintain professional reputation, some income…not to mention friendships. At 63, I am only now feeling like I have the permission by society to disclose sometimes that I am “part time retired”, a more socially acceptable excuse for my reduced work schedule, although depending on the situation, indont disclose I am reaching retirement age because there is also a stigma on age. Fortunately and so far, I look ten to 15 yrs younger according to some folks, thanks to red hair genes, so I am able to co tinge that facade awhile longer.
The online and phone support groups that I have discovered this last year have been invaluable in helping me reduce the I internalized stigma of being "ill, but looking fine to others, and reconciling their expectations and image of me with the actual reality of my life which no one knows.
Keep connecting with others who are chronically ill in order to reduce the shame and embarracement of lack of productivity. I think it is each persons job to figure out how we want to balance our outer image to others with our actual reality, but knowing you are not alone in your reality is so important. Being able to confess to somebody who understands, how much time we have to crash, or fuss over our diets and health. Best wishes to you.
I also need to rest a lot. It is very hard on my 11 year old daughter as she often mentions my resting. I feel real low at times and have been to counseling to learn how to deal with my low moods. I must always remember that my daughter has me at home every morning and evening and all weekend long. Quality time is what I aim for. Quantities of time are often unattainable. My adult children seem to understand my symptoms and are real supportive of my efforts with their younger sibling. All I can do is reach out to the few who do understand and lean on them at times for moral support.
I hope that you can find a supportive friend or family member to talk to it does help.
Fllinstone
I can definitely understand how you feel. I work and by the time I get home, I’m exhausted and in extreme pain. I have fibromyalgia and arthritis. It’s like you are trading the rest of your day to look normal to people. It is depressing to know that a large part of your day is resting. It takes time to get used to it, I don’t think I’ve gotten to that point yet. Sometimes I want to do other things like clean my house or cook a meal. Sometimes I can’t. I will sit in an office chair and sweep, mop, or cook. It’s not what I want, but it’s the only thing I can do. I tried prepared food and hot dogs, because they are quick to prepare. I didn’t like either of those things, because I feel like one day in the future prepared food will be my only choice.
I’ve also isolated myself from people because I’ve noticed, no matter how many times you tell them, majority never get it. I can walk like Frankenstein in the privacy of my home.
It might be worth opening up to a colleague you trust to gauge how others might react. I teach and I’m only 30, so people have a certain expectation. It’s meant I’ve had to be honest, which has been a struggle, especially as I’m on temporary contracts, not a permanent position, as well as having self-esteem issues that predate fibro, so I’m developing that as I go too. We have to learn to see beyond what people expect. I’m blessed with being in a very supportive school community, but the more I’ve spoken to others the more support I’ve received and the more people I’ve found just like us- hiding a condition that causes challenges and keeping on keeping on.
Take a breath, ignore the assumptions. You know how hard it is to manage to do anything with the condition, so don’t let others make you feel less (easy to say, I know). Sometimes it helps to list how many little things you achieve in a given day. Since you will be the only one who sees it, no-one else can judge and you can see how far you’ve come.
Surround yourself with people who understand, and will remind you how far you’ve come (my physio is amazing for this!)
And at the end of the day- we who understand will always have your back!
The older I get, the harder it is to keep up the impression that I feel fine. I’ve been diagnosed for 10 years. I’m 58 now. Fortunately, I work full time in a small off campus of our university. I’m open with students and the two people I work with. But other staffers on the big campus is another thing. I don’t want to be seen as incapable to do my job. I sit most of the day. Even though it may seem that people are understanding, it’s hard to get out of my head those comments by people that I just need to exercise more or eat better. I was very active before fibro so that’s not what caused it. Keeping up that same pace pre-fibro is not an option. I sit when I get home, I’m mentally and physically spent. Lately, I’ve been feeling a little depressed which is not something I’ve experienced my whole life. Going to seek psychological help.
Thank you so much for all these replies! It helps a lot to hear from other people. Just knowing that I’m not the only one experiencing this is helpful. I think part of my challenge is that I have not accepted my situation - I am still judgemental towards myself. Perhaps if I can accept my reality and not judge myself, it won’t matter so much what other people think. It helps a lot to read other people’s posts.
Julie: I tend to go back and forth with my acceptance of this disease. Most days, I’m okay. But then it’s like I just lose it. I have faith in God to keep me going, but in the end, it is me that has to accept.
Hi yes yesterday I spent all day in bed I started out with good intentions but lately the exhaustion has been horrible I also lay there feeling guilty and thinking about what I have or should be doing I also feel ashamed I cry a lot because of it my husband supports me mostly but sometimes he says things and I don’t know if he means it or just wants to motivate me he can be so understanding and I don’t think he really realizes that I feel that way but I do tell him over and over again because the exhaustion has really only really started a little bit ago don’t get me wrong with the pain and everything else that goes along with fibromyalgia I’m glad that people are still working but I’ve have had this disease for over 25 yrs and it’s just gotten worse I wish I could say anything has helped me and believe me I’ve tried alot of things in those years I wish everyone a good day and hoping one day for a cure
Same here. I can accept it most days, but when I’m having a bad day, it can be hard to realize this is my reality.
The Power of Positive Thinking is not a myth. Read books, go online to discover techniques, meditate or do whatever you can do to get out of a negative mental rut that just feeds the vicious cycle of depression, apathy and weakness. I was amazed when on a terrible weekend (muscle spasms, shooting pains, etc) I got up on a chilly Sunday morning, went to the local track and ran three miles. Yes I felt the physical pain afterwards but the mental and emotional high was heavenly. Plus for me one or two glasses of red wine a day does wonders for my mental energy and awareness. Anything more and I’m a total brain foggy mess so I know my limits.
Hi Julie,
My name is David and just happen to be one of the Moderators on this site as well as a fellow fibromyalgia sufferer. When I read what you wrote I feel as I wrote it myself because I know exactly what you are going through as I’m sure most on here do. I’m 36 with a double transplant and since I was diagnosed each year I’ve seemed to become less active. It does feel embarrassing when I get up late and because I didn’t sleep well due to pain and chronic sleep apnea and after being up for 2 hours I need a nap. Or being at a friends house and having fun but wishing I was on my couch to relieve the symptoms. Even my close friends don’t realize what I’m going through as I can see it in their eyes. They feel bad but know they can’t do anything to help so they just make a face. I can’t even work at this point due to the fibro. I think people have a hard time relating because its something they themselves have no idea what it means to have “nerve pain”. Not to mention you have doctors all over the place who will argue and say there is no such thing. I’m noticing people in the middle of our country seem to have the most challenging time with just being diagnosed. The doctors are unfamiliar with the term and the studies and anything that relates to the subject. The rheumatologists don’t even diagnose the patient. I digress. My point is the only people who can really relate is other patients who have fibro. Having said that, we are hear, we understand, and we all have each other for support. We have answers to questions and we all give great advice I believe. Staying positive is something that helps me to cope. I love to make people laugh and I love to talk to people and make them happy. That is my coping mechanism (shhhh don’t tell anyone). 
Welcome to Ben’s friends Julie!
David
To Davey–thank you for your post. You are so right that we need to be there for one another. The longer I have this disease, the more I realize that I need others to express my feelings. I have always been a positive person, some people would say “too positive” if there is such a thing. I’m glad that we have each other and that we can encourage one another to stay positive. I work full time, and my students come to mfor encouragement or to just “dump” their sorrows. Like you, I love helping others. A kind word, a gentle hug-- can go a long way in making someone feel loved and cared about.
Blessings to you! And a gentle hug!
Even though most of my friends are aware of my fibromyalgia, they just don’t get it. I get criticized for resting so much and going to bed so early. They don’t understand why I can’t keep up. My thought is this: if you are my friend why don’t you take my word for it OR do some research of your own so that you CAN understand. Friends should be supportive, not critical.
i’ve had fibro 37 years. am now 74. for years i managed to work and care for my family, even making it through a divorce. but now i have days that i PLAN on accomplishing a few things, but just dont have the desire, drive or energy, so my day is wasted. then i feel pretty bad about myself and start over. I do better in the summer when i can get outside. I also feel selfish about expressing pain when i see people in wheelchairs or wounded warriors without legs. all i can say to everyone is Hang in There… we are important in our own way no matter what.
I am fairly new on this site also. I was diagnosed with fibro about 25 years ago and it is not until recently that I started to realize that I needed to talk about it with my peers. Admitting to it was a big part for me. What also has really helped is being on this site and see that I I am normal in this group.
My counselor told me to keep a day planner and I write down what I have gotten done throughout the day and some of the errands I need to do. I look over my day and realized, that I am not lazy there are just times when my fibro is worse than others.
I am glad you are here, because you have helped me.
@fibrohelp Right back at ya 
Reading a positive message addressed to ourselves can do great things especially to people who are understanding. I enjoy helping people realizing they aren’t alone and when I see a message like you just sent, it heals me better than you can imagine.
@Hobbit Exactly! Well said. I can’t tell you how many dates I have been on and be with someone for over a year and they still will criticize me. I have great friends who understand that I’m going through this but the ones that choose to critique my life on something they know nothing about I end up letting them go. Life is too short to be surrounded by people who don’t truly love, respect, and care about you. If they are going to not be supportive then that is a deal breaker. Cut them loose!
@Beasle Welcome to the group. It is definitely good to write down those things. I do the same thing and then when I look at my month I go wow I’m pretty busy. Nobody with fibro is lazy. Fibro is a disease. It also worsens when it affects the most. I’m glad you are here!
@carolyn I feel better in the summer as well. I tend to get seasonal depression during the winter because I don’t want to go out in the cold. I have always told people a line that speaks truth to me. I will mention it in a second. I have had a heart and kidney transplant so when people end up sharing their pain and I share mine, they feel embarrassed that they even brought up their pain because they start comparing illnesses. I’ve always said “We all go through illnesses in our lives and we all have pain. Just because I had organ surgery doesn’t make your illness any less than mine. We both experienced agonizing pain and problems so your problem is just as big as the next ones. We simply can’t compare”. We all equally go through stuff in our own way. Comparing makes you feel like your illness isn’t worth anything compared to someone who has had more surgery or whatever. We all suffered or continue to. We can be thankful if we aren’t in wheelchairs but we aren’t any less or more important than the next individual who is sick.
Davey
Thank you Davey. I hope you had a good day.
Davey02766
January 12 |
@fibrohelp Right back at ya Reading a positive message addressed to ourselves can do great things especially to people who are understanding. I enjoy helping people realizing they aren’t alone and when I see a message like you just sent, it heals me better than you can imagine.
@Hobbit Exactly! Well said. I can’t tell you how many dates I have been on and be with someone for over a year and they still will criticize me. I have great friends who understand that I’m going through this but the ones that choose to critique my life on something they know nothing about I end up letting them go. Life is too short to be surrounded by people who don’t truly love, respect, and care about you. If they are going to not be supportive then that is a deal breaker. Cut them loose!
@Beasle Welcome to the group. It is definitely good to write down those things. I do the same thing and then when I look at my month I go wow I’m pretty busy. Nobody with fibro is lazy. Fibro is a disease. It also worsens when it affects the most. I’m glad you are here!
@carolyn I feel better in the summer as well. I tend to get seasonal depression during the winter because I don’t want to go out in the cold. I have always told people a line that speaks truth to me. I will mention it in a second. I have had a heart and kidney transplant so when people end up sharing their pain and I share mine, they feel embarrassed that they even brought up their pain because they start comparing illnesses. I’ve always said “We all go through illnesses in our lives and we all have pain. Just because I had organ surgery doesn’t make your illness any less than mine. We both experienced agonizing pain and problems so your problem is just as big as the next ones. We simply can’t compare”. We all equally go through stuff in our own way. Comparing makes you feel like your illness isn’t worth anything compared to someone who has had more surgery or whatever. We all suffered or continue to. We can be thankful if we aren’t in wheelchairs but we aren’t any less or more important than the next individual who is sick.
Davey
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In Reply To
fibrohelp
January 10 |
To Davey–thank you for your post. You are so right that we need to be there for one another. The longer I have this disease, the more I realize that I need others to express my feelings. I have always been a positive person, some people would say “too positive” if there is such a thing. I’m glad tha…
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