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Lonliness
7 Replies
How to Survive - October 12

Is there anyone out there that has a family that understands and treats you like a person rarther than an absolute pain? If so how did you get to that stage? I am alone unable to work now due to my symptoms, my family despite books I have bought which they refuse to read, so they might understand, treat me as if they wish I were already dead. When I am in flare-up its even worse. If I cant stand the smell of the cooking and comment, or are so exhaustewd I want to go to bed in stead they have friends over late. I'm not sure but I think its worse in Australia as so little is known about CMP or Fibro we just make it all up, the symptoms are just imaginery.

 

Fantod - October 13

Hello - Yes, many of us are in the same boat to one degree or another. My family wants me to go on holidays that involve long plane rides, a lot of walking and basically all of the things that I can not do. Then they become angry when I decline. Honestly, who in their right mind would want/choose to live like this? I guess I manage because I am pretty well educated on FMS and accept my limitations. I stopped feeling sorry for myself and got on with some things that I am able to do and enjoy. I don't think it is realistic to expect your family members to stop living life because you don't feel well. I encourage my family to go about their normal business and I join in when and if I am able. I have had quite few battles over my situation and finally realized that the only person who suffers is me. Being upset, stressing myself out etc only makes my symptoms worse. Then I decided to make a concerted effort to refuse to be baited, calmly state my position and do whatever was necessary for my own well being. Some may call that selfish; I call it self preservation. I think that finding some new things that you enjoy and can do would help your perspective. I work on genealogy which requires brain power but not much physical effort. Have you considered looking for a support group in your area? Even a chronic pain support group would be a good alternative. And as a final thought, how about showing someone in your family this site; specifically the forum? It may be more difficult for them to ignore your situation when they see other people commenting about the same issues. Take care and keep in touch with us.

 

Gabbie - October 13

Hi. I think when people first find out they have fibro, there are a lot of different feelings they have; anger, frustration and loneliness. I believe each person needs a certain amount of time to work through those feelings but feel that it is important they not let those feelings take over. It is hard for others to understand because we don't necessarily look sick. My mother-in-law suffered from fibro years ago and complained about pretty much all the symptoms there are. Shame on me and a few others because we, are you ready....didn't believe her, because she didn't look sick either. Now here I am years later, with the same thing. A few people know that I have it but I don't talk about it much with them because I don't know if they really believe it anyway. Actually, since I've "toughened" up I don't find it important anymore if they do or they don't. Fortunately my husband (and a couple of immediate family members) has been supportive (guess because he believed his mom when she said she had this "condition"), but even with him, I don't dwell on it too much. After I was diagnosed, I spent time not wanting to do much, feeling sorry for myself and found that I actually started feeling worse. So, I decided that I was going to be stronger than the fibro and pushed to get going again. About that time I also found this forum where I was able to learn more about it. Just "talking" to the many people here made me realize that I wasn't all that alone because it is here that we can share with others who really understand. I encourage you to visit this site often because I really believe that it can be a great help to a fibro sufferer. If you begin to talk to others here, you may not feel alone anymore either. I wish you well.

 

Sofie - January 6

Hi,
I have had fibro for 23 years. I have four children, a supportive husband (who works a lot overseas) and I study medicine also. We work around my limitations but it is difficult and depressing at times. But I wont let this thing get the better of me. I am having a very bad flare up atm and it is so hard. Keep educating your family and in time they will hopefully be if not supportive, at least tolerant.
I wish you all the best.

 

Anne Hillebrand - January 6

They may not ever understand. You will have to get back your life.

To get sleep, even with people in the house, wear and eye mask and ear plugs to block out all light and all sound.

Do acid foods make you flare? Try a little baking soda in whatever you drink.

Remember that FMS, untreated, can make you very negative. Make yourself notes to remember to talk about things that are interesting to others.

Listen to them.

If you spend long hours on the computer or watching tv, cut way back.

Keep a notebook of what you eat, drink and do. Later, do you feel better or worse? Cut out the things that make you feel worse.

 

jacquie - January 10

It took many years to get some family members to understand, but some still don't believe that I'm sick. Do they realize its a disease of the central nervous system? If you live with them, you're going to have to ignore their ignorance or else move out. I live alone and can't work, but I have two cats that keep me company. It was worse when I lost my job and became homeless for a while. You know how well America takes care of their citizens, lol.
Jacquie

 

Lenzi - January 19

I know it is hard for one to understand this disease. It is so invisible to someone that doesn't have it. Depression and Stress also cause flareups though. I am currently taking Lyrica(the only med proven to help with fibro) Cymbalta(an antidepressant that helps with some of the pain, muscle relaxer(it is a disease of the muscles) and a sleeping pill(because fibro causes sleep disturbance) If you are able to get these meds try them. Here is something that has helped my family and friends understand this disease that took over my life.

An Open Letter to All Who Do Not Have FMS

Having FMS means everything has changed, and a lot of these changes are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS and its effects, and of those that think they know, many are actually mis-informed.

In the spirit of informing those who wish to understand .. These are the things that I would like you to understand about me before you judge me ..

Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about my work and my family and friends, and most of the time I'd still like to hear you talk about yours too.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.

Please repeat the above paragraph substituting the act of standing with "sitting", "walking", "thinking", "being sociable" and so on .. it applies to everything. That's what FMS does to you.

Please understand that FMS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!" If you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to lose (or gain) weight, get this exercise machine, join this gym, try these classes .. may frustrate me to tears, and is not correct .. if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS does not forgive.

If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS, if something worked we would KNOW.

If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor. In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too .. you're my link to the outside world... if you don't come to visit me then I might not get to see you. ... and, as much as it's possible, I need you to understand me.

 

axxie - January 19

Lenzi
Well said, that's everything I want to say and sometimes don't have the voice or the energy.
Thank you
I shall keep this one and pass it on to some of people I know.

 

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