Coming to terms with an illness

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Date Joined Jun 2008
Total Posts : 716
   Posted 2/17/2009 3:11 AM (GMT -6)   
Hi all, I tell you, it's like pealing an onion.  Everytime I think I have come to terms with this illness, I find I haven't.  It hit me today when I was having lunch with a friend & she was telling me how her sister, who has CFS, has also been dx'd with Fibro.  She was saying that Kate is a realist & has always been a realist.  She really has come to terms with it & doesn't feel the need to fight it or feel guilty about being ill. As I sat there & listened I realized that I was "still" fighting it.  I told her that I am still making plans that I know I won't be able to keep but do it with the attitude that I am going to "win" this time.  I want to be done with this guilt I feel for being sick.  I want to be done with the mind games I play on myself. I am constantly gauging whether I am too sick to go do something I promised to do.  How sick do I have to be to stay home?  Or am I just lazy?  How have you all come to terms with this?  Was there a day or time when it suddenly hit you & then you broke through the denial?  I have a good denial system (I lived with an alcoholic/drug addict for 10 years & helped to keep him drinking guilt free).  I am the eternal optimist of the family, there is always a way out.   Anyway, I just thought maybe someone could tell me how to live, guilt free, with this illness, to accept it.  Thank you.  Hugs to all, Denise   

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Regular Member

Date Joined Dec 2008
Total Posts : 478
   Posted 2/17/2009 7:07 AM (GMT -6)   
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.


Veteran Member

Date Joined Aug 2008
Total Posts : 1771
   Posted 2/17/2009 9:52 AM (GMT -6)   

Oh Denise and Patsie, I could have written both of your posts.  Today my right leg hurts so bad from my hip down to my toes that I just want to pull my hair out!  Yesterday, I felt pretty good.  Why the difference?  Who knows....

I swing back and forth from frustration, denial, guilt, acceptance, optimism, depression, anxiety, hope, and despair.  On any given day, my emotional pain/distress is just as varied as my physical pain/distress.

There are days when I feel like I'm doing okay with my acceptance of fibro, then a new symptom will hit me, and I have to start all over again.

I've also had trouble with guilt over not being able to be all things to all people like I used to try to be (I think a lot of us are giving perfectionists.)  I also have moments of thinking, Is this "real"?, because I don't look sick.

I've been having a lot of trouble walking lately, and I'm having a really hard time accepting the fact that I may need some kind of "walking aid" soon.

I'm really working hard at acceptance and not feeling guilty, but it is so very, very hard.  Patsie, one of my husband's favorite sayings is, "It is what it is."  I'm trying to adopt and live by that phrase myself.  No guilt.  No fear.  No embarrassment.  No feelings of inadequacy.  No apologies.

Hugs - Austen

"There is no charm equal to tenderness of  heart." - Jane Austen
Fibromyalgia, 2 back surgeries, Meniere's Disease, 30+ kidney stones, GERD, IBS, Asthma, Allergies, Endometriosis, Heart Arrythmia, Myofascial Pain, TMJ.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17061
   Posted 2/17/2009 10:48 AM (GMT -6)   
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:
Middle English, delinquency, guilt, from Old English gylt delinquency
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
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!

Forum Moderator/ Fibromyalgia
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

Post Edited (Sherrine) : 2/17/2009 9:31:28 AM (GMT-7)

Veteran Member

Date Joined Jun 2008
Total Posts : 716
   Posted 2/17/2009 5:17 PM (GMT -6)   

Thank you, thank you, you have all helped me so much.  I came earlier & read your posts & had to go & think about them for awhile.  There was so much there to process.  Mind kept jumping from one thing that was said to another.  It is hard, sometimes, to apply counsel to myself & make a change in my thinking but with your help I have been able to start.  You have all helped me to see that this is something we all have to go through & somehow I am stuck.

Patsie, your right I have been thinking negatively about being ill & putting on a strong front.  It is wrong.  I can see that, wow, I have always done that, been the strong one.  & your right I don't want people to see me any different even though I am.  I want to be normal.  I really have thought I could get my old life back, maybe not consciously but I know it was there.

Austen, the swinging back & forth in my emotions does keep me off balance too.  I guess I never look at this a an emotional thing as well as physical.  I have been trying to deal with the physical symptoms & not addressing my emotional issues.  I do have a tendency to clamp down on them like I shouldn't have them or they are bad.  I hadn't realized that. 

Sherrine,  Guilt definitely doesn't apply with this illness.  So I tried to think of the alternative which is shame but that doesn't apply either.  It made me think about where that has come from & it is because I look at how I think others feel about my illness & not how I feel, & what I know to be true.  So I try to be ok for them.  Boy, how disfunctional is that??!!?  Wow, you tell people once & that is it & it should be it.  As I said earlier, I put on a strong front but not a positive front.

Well, i will need to think about this for awhile but I can tell it will be one of those "AHA" moments in my life.  Thank you for the good advice & for helping me to see this illness for what it.  "It is what it is".  What a great place.

Many hugs to you all, Denise

 I have:  Fibromyalgia, ME/CFS, Holt-Oram Syndrome, nasal allergies, food allergies, depression, TMJ, anxiety

Married to a wonderful supportive husband & between us we have 4 children & 7 grandchildren

As apples of gold in silver carvings is a word spoken at the right time for it.    Prov. 25:11

Regular Member

Date Joined Dec 2008
Total Posts : 478
   Posted 2/17/2009 5:28 PM (GMT -6)   
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

Regular Member

Date Joined Oct 2008
Total Posts : 257
   Posted 2/18/2009 12:54 AM (GMT -6)   
Denise: I hit a wall with my pain at the end of September. For me, I believe it was a change of season that brought on a nasty flare. I wasn't sleeping and started missing more and more work, until I finally just said, I can't do this anymore. I can't go to work and make costly mistakes. I went to my GP and was pretty well panicked by the whole thing. I have been home ever since. I think my pain and fatigue have gotten worse. I go out of the house maybe once a week.

Guilt for me is brought on when I read some of the posts here and start to compare myself to others and think I should be doing more.

I'm still working on acceptance - I keep thinking about all the things I'd like to do in a day, and then when I don't get anything done, it's downright depressing. I hate it. I don't recognize my life anymore. I need to re-imagine myself, and yet, I don't think I'm done grieving yet.

It really stinks, doesn't it? I don't know what else to tell you. Everybody is at their own level and their own speed. Just keep hanging in there - sometimes that alone is a victory! (stolen from my very wise pastor, who just happens to be my husband!)
Still learning how to manage my Fibromylagia, and all the lovely gifts it brings.   
I had severe spinal stenosis, had fusion done on C5-7, and my life has changed. 

Veteran Member

Date Joined Apr 2008
Total Posts : 1522
   Posted 2/18/2009 2:02 AM (GMT -6)   
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.

Regular Member

Date Joined Jan 2009
Total Posts : 376
   Posted 2/18/2009 2:28 AM (GMT -6)   

I've had to deal with losses before - but this time is different.  Right now I'm wondering if there's difference between resignation and acceptance.  I think there are different phases.

I can accept my physical condition.  Like most of you, I knew there was something really wrong for several years before we figured it out.  So putting a name to it didn't seem to be that traumatic.

Accepting the sudden change in life is another challenge.  I hit a wall too with the work thing.  Pretty hard.  But in the last 40 years of school and work, the most time I've ever had off at one time is 3 months.   Over the weekend I was still hoping treatments might stick to some kind of a vague schedule.  NOT.  I meet with my doc on Thurs and I'll discuss this with her ... what are realistic expectations.  I think we're settling in for the long haul.

My parents were from the Depression era, and maybe that's where we got our strong work ethic.  There's probably some guilt over not working now.  But it's also a 40 yr. habit.  Can you do something that long and then all of a sudden ... bam ... can't do it anymore .... and that's all OK?

B. emailed a letter to the kids over the weekend.  Basically we can't do visits to grandkids, gifts, etc. like we used to.  It was very difficult for her to put it together.  But it was a part of her grief process. 

Does anyone else ever feel like they're just hanging on to life like a roller coaster ride and just tyring not to get thrown off?

There is Seattle area Fibro/Fatigue board and their site has a number of suggestions for dealing with low energy.  I was already doing most of it.  But one that stuck with me was the idea that ... try to come up with a realistic plan for each day .... cut it into two pieces, and then do the smaller one.   lol  ... seems to work.. 



Lyme, anxitey, depression, chronic C. Pnuemoniae
"... expect the unexpected ..."  (O. Wilde)
"I am an old man and have known a great many troubles, but most of them never happened." (Mark Twain)

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