Coming to terms with an illness

Good Morning Denise,

Ah, this is such a big issue for us!! I am now no longer in denial but it took me a long time to accept that this is what it is. I would constantly go on with my life just as I always had until I learned how I paid the price. Now I pace myself. Yes, I still plan but often have to change or amend my plans.

A week ago I was determined to play tennis and man did I suffer.. now I thought I took it very easy but apparently even that was too much. Soooo I am going to start back at even a slower pace, but give up, definitely NOT. A friend I had lunch with yesterday who has a real understanding of fibro encouraged me NOT to give up but to go at it very slowly.

It seems most of us want to be "normal' for those around us and feel guilt about that. Well we have to deal with that too. WE all talk about how our significant people don't really see it and face it, don't really get it. I personally think having to put on a strong front is very negative. This disorder is so "out there" because even the so called experts don't know what causes it. WE all think is this really fibro or will it just magically go away. I think we also feel guilty because we cannot do what we used to and perhaps carry our end of things. Well again it is what it is.

Hope everyone has a good day.

Patsie

I would like to respond to the "guilt" thing. We have absolutely no reason to feel guilty. We didn't ask for this illness and we didn't plan for our lives to be the way they are. I looked up the definition of "guilt" and we don't fit the description, unless we allow ourselves. Here it is.


Main Entry:
guilt
Pronunciation:
\ˈgilt\
Function:
noun
Etymology:
Middle English, delinquency, guilt, from Old English gylt delinquency
Date:
before 12th century
1: the fact of having committed a breach of conduct especially violating law and involving a penalty ; broadly : guilty conduct

2 a: the state of one who has committed an offense especially consciously b: feelings of culpability especially for imagined offenses or from a sense of inadequacy : self-reproach

3: a feeling of culpability for offenses

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We have done absolutely nothing wrong. This illness is just a fact of our lives. I know many people are not willing or capable of understanding what we are going through. Unfortunately that is an "illness" of many in today's society but that's not OUR fault.

I found that accepting this illness and facing it head-on with a positive attitude was a key in helping me function fully with fibromyalgia. I've always been an independent soul so I never needed or wanted anyone's sympathy or acceptance. It was only me that needed to accept this illness.

I was "matter-of-fact" with fibro and with my family. I told them I had chronic pain and some days are better than other days. They accepted that as fact since I always spoke the truth to them. So, they didn't demand things from me. Most of your families don't demand things of you, either. You put the demands on yourself! That's the perfectionist in us. I rarely brought up how I felt because I already told them how I felt. I didn't discuss things with my husband because he knew I wasn't feeling well because I wasn't acting like I always did. But, I was very blessed that he pitched in and helped me. He would run the vacuum when he could tell I was having a bad day and he always cleaned up the kitchen after dinner. You all know we are pooped by that time!

I rarely talked about fibro. Actually, I refused to have my life revolve around fibromyalgia so I didn't mention it. Fibromyalgia is a part of my life but I will NEVER allow it to become my life. I go on living the life I'm able to live. I won't sign up for the Boston Marathon but I will sign up for a walk in the park. I will have friends over for dinner but I won't do that every week. I won't give in to fibro and slow down to a snail's pace because I know that if I do, pretty soon that will be my regular pace for life. The saying, "If you don't use it, you lose it" is quite true and I don't want to end up incapacitated because of fibro so I continue to push myself. I want to keep my independence so I keep moving. I find if I have several days where I have been sitting too long at the computer, I will be sorer and extremely stiff. But, if I keep moving it helps keep the blood flowing and I do feel better.

So the bottom line is, don't feel guilty! You have no reason to be guilty and those people that try to make you feel guilty are clueless. Live your life fully and to the very best of your ability and you will have a very successful life with fibromyalgia.

Jewelrylady, you said that, "I am still making plans that I know I won't be able to keep." Listen to that sentence. I'm a very positive person and that isn't positive thinking! Oops! LOL You see, that's like a self-fulfilling propecy. You actually don't believe you can keep your plans. But, you know, you really can keep your plans if you make plans that are within your range. That's what you shoot for. Aim high and you will be surprised how your spirit and your body will respond!

Austen, I just wanted you to know that several times in my life I have had difficulty walking but I continued exercising and moving and didn't give in to the idea that I might need help walking. To me that can become a self-fulfilling prophecy, too. And, you know what? My walking is fine! I know I'll probably have more spells where I have some difficulty but I also know that if I persist, it passes. I do use a cane at night because I have osteoporosis and don't want to fall because of stiffness. If you need a cane for walking don't hesitate using one but do keep moving and this just might pass!



Sherrine

Hi Denise,

I want to add something else about the unconscious and emotional side to this thing. I kinda like to call it "Thing". In our unconscious mind, which we know less about than the surface of Mars, we are very angry that this has befallen us. No, we cannot see it or feel it but the rage is there. Then couple that with others looking at us like, what's wrong, is enough to send us right off the deep end. The mind is a very powerful thing and does not always influence us in a positive way... ahhh! you mention the emotional side. Personally I think my toll is greater there. I had never recognized myself as an anxiety ridden individual but man this Thing has changed that.

Also I think your post was excellent. You are honest and that is suppose to be what this forum is all about. If we didn't have this pain and accompanying fear we would not need one another. For me this is the one place I feel understood and can complain like crazy if I need too. We all have our days and must help each other through them. That is the one positive, right??

Take care, Patsie

I don't think I will ever fully accept fibro. I can have weeks where I can do a lot with only mild/moderate pain and mild fatigue, then out of the blue, I hurt and can hardly get out of bed. I can sometimes accept the days where I do nothing because I have revised what nothing means.

When my husband comes home from work and asks about my day, I'll tell him I was busy all day. I tell him that I digested some food, made urine, grew some new cells, blinked a lot, shed some hair and skin cells, took in oxygen and expelled carbon dioxide, had a few thoughts, etc. He then realizes my day wasn't' so great and he makes (usually orders!) dinner. I made it through another day.

Comparing yourself to others will make you miserable. With fibro, you can't even compare yourself to yourself. I can't even compare this morning to this evening.

My fibro group recently talked about weakness. Many of us feel "weak" when we can't get anything done, or we need pain meds, or we need a cane, or we can't work. Others can tough it out, why are we so weak that we can't fight this? It was a fascinating conversation. It really hits home when someone thinks they are weak and you KNOW they aren't and try your best to tell them how strong they are. Then you realize you feel the same way and you aren't weak either.