Old 08-15-2014, 12:05 AM #1 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 6
shinebright is on a distinguished road
shinebright shinebright is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: *
State: Ontario
Country: CA
Diagnosed: 00/1998
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
shinebright is on a distinguished road
Default Grieving

I've lived with, no, suffered with ME, fibro and sensitivities since I was 15...I'm 37 now. It has been such a struggle and a huge roller coaster ride. So, what's brought me to post a message today? To be honest, I'm not exactly sure. I had an appointment today with a new doctor and I suppose it stirred things up. Going over my entire history, daily challenges and replaying examples of my limitations has caused me to grieve...deeply.

This illness is not new to me or my family and friends and yet, I feel it's somehow become normal to all of us, which is why I don't think they'd understand my current level of grief. We've known me this way for more than half of my life and I think it gets forgotten about and/or maybe we all thought I'd accepted it. Who knows?

Anyway, today, I feel sorry for myself. Sorry for having lived so much of my life this way, sorry for the daily struggle, sorry for all I've missed, sorry for all of the thoughts and emotions that, at times, plague me, sorry that I've pushed myself so hard and have tried so hard to be normal while 'living' with chronic debilitating illnesses...and sorry that this doesn't seem to be going anywhere any time soon (if ever).

I was reminded today that what I have is REAL. With real symptoms and real limitations. On the one hand, that validation is extremely freeing; on the other, it caused me to accept my illnesses in a new way.

One of my hardest challenges with these illnesses, is that I find it hard to reconcile the REAL me - the parts of me that have goals, ambition, dreams, passion and that enjoys spontaneity - with the limitations of these REAL illnesses.

So, that's where I'm at. Thank you for reading.
shinebright is offline  
Old 08-15-2014, 05:29 AM #2 (permalink)
Member
Registered Member
 
Join Date: 2014
Posts: 326
Ruralchick is on a distinguished road
Ruralchick Ruralchick is offline
Member
Registered Member
Join Date: 2014
City: ********
State: AZ
Country: US
Diagnosed: 09/2013
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 326
Ruralchick is on a distinguished road
Default Re: Grieving

I'm really joined in sympathy with you! I really feel your grief with your well- written post and am so glad you wrote it. I grieve for my lost life as well; the horses that I used to work with, the livestock that filled my corrals, life and heart.The grandkids will never know their grandma for who she really is-or I should say, for all she was. But surely in all this mess of life we carry on in other areas, in other ways. My belief is that as I belong to the Lord, He will never leave or forsake me. That ALL in my life is orchestrated by Him and it sure takes a lot of polishing to make me fit to see Him in His perfection in heaven. ( Not to mention I'm so much more ready now to turn loose of this life . ) It's okay to feel sorry for yourself, tomorrow you'll be better.
Ruralchick is offline  
Old 08-15-2014, 11:55 AM #3 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 6
shinebright is on a distinguished road
shinebright shinebright is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: *
State: Ontario
Country: CA
Diagnosed: 00/1998
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
shinebright is on a distinguished road
Default Re: Grieving

Thank you kindly for your response and I am so sorry for your loss as well. I really resonated with the line "my grandkids will never know their grandma for who she really is - or I should say, for all she was." That is so poignant. I'm newly married and my husband has only known this version of me. (I had a further health crash 2 years ago that has prevented me from working.) He has not know the accomplished me or the 'owned my own house' me.
I feel tender today - emotionally bruised - but, Rome wasn't built in a day(!), and I'm know, in time, my grief will subside.
Thank you for reaching out, and for your support and understanding. <hug>
shinebright is offline  
Old 08-17-2014, 04:48 PM #4 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 10
Kemene is on a distinguished road
Kemene Kemene is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: Sioux Falls
State: SD
Country: US
Diagnosed: 06/1997
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 10
Kemene is on a distinguished road
Default Re: Grieving

I also understand the things you've expressed. I have had fibro my entire adult life, and I'm 57 years old. There have times in my life when it has been worse, and times when it has been better, but it has gotten very much worse over the last year. I had to take a lower paying job because I couldnt handle the stress of what I was doing anymore. But this job is harder on my physically. I have to limit my friendships because I got very tired of trying to explain to friends why I don't have the energy to do things with them. People just don't get it. My family has never expressed any interest or empathy for my problems, except for my wonderful daughter who is a med student now.
You are still young, so it must be so hard for you to accept your limitations. But I think one of things those of us who have this are meant to learn is that it is all right to do what you have to do to take care of yourself. It is okay to find simpler, easier ways to shine or play a positive role in life.
I guess I have reached the point where I just want to be able to take care of myself and the two cats that I have and love dearly. I am no longer interested in living up to other people's expectations, especially when they have no comprehension of what it is like to live with this. I want to be there for my daughter and the few friends I hold dear, and I am so happy to have found this forum. Because I need to be understood, too. The grief that is a part of this illness is real. I hope the best for you.
Kemene is offline  
Old 08-19-2014, 10:10 AM #5 (permalink)
Member
Registered Member
 
Join Date: 2014
Posts: 105
wulfman is on a distinguished road
wulfman wulfman is offline
Member
Registered Member
Join Date: 2014
City: New York
State: New York
Country: IN
Interest: I am a relative of someone with Fibromyalgia and/or chronic pain.
Posts: 105
wulfman is on a distinguished road
Default Re: Grieving

Please have a positive outlook although it is difficult I know. The mind is very important in controlling the body's feelings and even pain to some degree. Be mentally strong and do whatever needs to be done to minimize your pain and control your symptoms.
wulfman is offline  
Old 08-24-2014, 09:51 PM #6 (permalink)
Trellum's Avatar
Very Helpful Member
Registered Member
 
Join Date: 2013
Posts: 1,788
Trellum is on a distinguished road
Trellum Trellum is offline
Very Helpful Member
Registered Member
Trellum's Avatar
Join Date: 2013
City: NL
State: NL
Country: NL
Diagnosed: 04/2011
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,788
Trellum is on a distinguished road
Default Re: Grieving

Hi there! So sorry to hear you are feeling like this, I used to feel like this as well in the very beginning and still continue to feel like this when several things overwhelm me at the same time. But I really think we could really benefit a lot by learning how to cope. A positive outlook makes wonders!
Trellum is offline  
Old 08-25-2014, 07:14 AM #7 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2013
Posts: 86
GemmaRowlands is on a distinguished road
GemmaRowlands GemmaRowlands is offline
New Member (Say Hi)
Registered Member
Join Date: 2013
City: Liverpool
State: Merseyside
Country: UK
Interest: I am a relative of someone with FIBRO/CFS/PAIN
Posts: 86
GemmaRowlands is on a distinguished road
Default Re: Grieving

It's perfectly understandable that you feel like this. One of the problems with having a disease that is so rarely understood is the fact that nobody knows what you're going through, and you may well find it difficult to explain to them. However, you need to make sure that you have a very strong group of friends and family around you, as having the right type of people can really make a huge difference when it comes to being able to enjoy your life. There will still be a lot of things that you can do, and you have every right to the life that you both want and need.
GemmaRowlands is offline  
Old 08-27-2014, 07:01 AM #8 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 49
junebugrobts is on a distinguished road
junebugrobts junebugrobts is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: springfield
State: oregon
Country: USA
Diagnosed: 08/1989
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 49
junebugrobts is on a distinguished road
Default Re: Grieving

I am new to the forum as well. The last 2 yrs have been the worse for me with the Fibro, but i have had
it for almost 30 years. I also have Crohns disease so I agree it is hard to be positive.
People are not going to get it...If I think about it, seldom do I get myself into someone else's
health problems. The only people who are going to get it, have it...they understand why you are feeling down
because they have been there and done that and maybe still are...one day at a time...today is good, but none
what about tomorrow, who knows...maybe two good days in a row...a good day is when I get out of bed first of
all and get dressed and get on with the day.. now going to a pain management clinic and am on meds and a pain patch which help a lot.
I rely on faith and really try to remember to be thankful, so many people are worse off
Actually I had over 18 years of remission from both of these illnesses...it can happen to you as well,
Try to get as much information and help as you can...Keep on trucking'
junebugrobts is offline  
Old 08-27-2014, 07:08 AM #9 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 49
junebugrobts is on a distinguished road
junebugrobts junebugrobts is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: springfield
State: oregon
Country: USA
Diagnosed: 08/1989
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 49
junebugrobts is on a distinguished road
Default Re: Grieving

just thought of this...my great granddaughter was here from Illinois, she is 5. She and her mom and some visitors
were out on my back deck...this is after i had fixed dinner and it did me in. Evie asked me,
"Grandma, can i pick the tomatoes", I said no because I was afraid she would pick the green ones or
knock them onto the dirt. She said, "I know when they are ripe." I said no, then I had to go lay down.
Later I thought that was not the gram that played with squirt guns with the kids and ran through the
sprinklers, no that grandma would have gone to the garden with little Evie to pick the ripe tomatoes...and
big deal if she knocked some off..this is Oregon, most of them will probably end up green anyway.
And it might be another year before I get to see her again....smile....stop this sulking (said to myself)
junebugrobts is offline  
Old 08-27-2014, 06:36 PM #10 (permalink)
trayne91's Avatar
Member
Registered Member
 
Join Date: 2013
Posts: 154
trayne91 is on a distinguished road
trayne91 trayne91 is offline
Member
Registered Member
trayne91's Avatar
Join Date: 2013
City: Lake Geneva
State: Wisconsin
Country: US
Diagnosed: 10/2013
Interest: I have been diagnosed with FIBRO/CFS/PAIN
Posts: 154
trayne91 is on a distinguished road
Default Re: Grieving

I completely understand and I hope you feel better soon. Although, if you are like me, and probably a lot of us, you have these things on your mind all the time, but you just try to push them over so you can get through a day.

"One of my hardest challenges with these illnesses, is that I find it hard to reconcile the REAL me - the parts of me that have goals, ambition, dreams, passion and that enjoys spontaneity." - this is so true. Many don't realize we don't want to by like this. Sometimes, maybe, I just want to run.
trayne91 is offline  
Old 10-01-2014, 09:44 PM #11 (permalink)
Trellum's Avatar
Very Helpful Member
Registered Member
 
Join Date: 2013
Posts: 1,788
Trellum is on a distinguished road
Trellum Trellum is offline
Very Helpful Member
Registered Member
Trellum's Avatar
Join Date: 2013
City: NL
State: NL
Country: NL
Diagnosed: 04/2011
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,788
Trellum is on a distinguished road
Default Re: Grieving

Quote:
Originally Posted by junebugrobts View Post
just thought of this...my great granddaughter was here from Illinois, she is 5. She and her mom and some visitors
were out on my back deck...this is after i had fixed dinner and it did me in. Evie asked me,
"Grandma, can i pick the tomatoes", I said no because I was afraid she would pick the green ones or
knock them onto the dirt. She said, "I know when they are ripe." I said no, then I had to go lay down.
Later I thought that was not the gram that played with squirt guns with the kids and ran through the
sprinklers, no that grandma would have gone to the garden with little Evie to pick the ripe tomatoes...and
big deal if she knocked some off..this is Oregon, most of them will probably end up green anyway.
And it might be another year before I get to see her again....smile....stop this sulking (said to myself)
Awww, so sorry about that, sometimes I'm also so trapped in my own thoughts and pain I miss to see the big picture. But don't worry, next time you see her it will be much better!
Trellum is offline  
Old 10-25-2014, 03:16 AM #12 (permalink)
Member
Registered Member
 
Join Date: 2014
Posts: 428
terbaer is on a distinguished road
terbaer terbaer is offline
Member
Registered Member
Join Date: 2014
City: ??
State: Washington
Country: US
Diagnosed: 10/2010
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 428
terbaer is on a distinguished road
Default Re: Grieving

Shinebright, My counselor gave me some "things to consider". She said to me that I need to grieve the loss of who I was (I was competitive in sports, gardner, house cleaner, mother, wife, daughter, major bread winner). Allow yourself to grieve. It's normal. At some point though, its okay to accept who you are now.

Now, I'm a story-teller to my daughter of what I did as a teenager, or young adult. Since I can't work, I'm a better mother and I hope wife. I spend more time with my aging parents. I will no longer play competitive sports. I will no longer be a major bread winner. I have been unable to keep the house up, but my husband has stepped up to help. I get frustrated sometimes, or down sometimes. That's okay. I have come to love who I am. I'm still on the journey. I'm not completely there yet, but I'm working on it.

I wish for you to begin a journey of your own. It's been several months since this original post so maybe you've started it. Counseling has helped. This forum has been incredible, with the wonderful and loving women and men here to support each other. Give yourself permission to grieve and think about what you want to be, even with these diseases/illnesses. You'll get there....
terbaer is offline  
Old 01-08-2015, 10:27 AM #13 (permalink)
New Member (Say Hi)
Registered Member
 
Join Date: 2014
Posts: 6
shinebright is on a distinguished road
shinebright shinebright is offline
New Member (Say Hi)
Registered Member
Join Date: 2014
City: *
State: Ontario
Country: CA
Diagnosed: 00/1998
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 6
shinebright is on a distinguished road
Default Re: Grieving

Thank you kindly for your wise and kind words, terbaer. When I received this a way back, I must tell you that the timing was perfect. I have referred to your response regularly over the past several months and it has been a source of great hope and encouragement for me. The understanding and compassion I felt in your response also made such a difference for me - it felt like a hand up. I thank you to the fullest for that.

I have begun my journey and am slowly reclaiming parts of myself that I had shut off from. With the magnitude of everything I was experiencing, I shut off from my old self completely. I am in the process of accepting where I am now along with my limitations, and as well, am opening up to, and making room for, the things that nourish my spirit...those things have remained the same...so I am finding ways to create space for them.

Thank you again for such a supportive and heartfelt response. You have made a difference in my life.
shinebright is offline  
Old 01-13-2015, 08:17 AM #14 (permalink)
Member
Registered Member
 
Join Date: 2014
Posts: 428
terbaer is on a distinguished road
terbaer terbaer is offline
Member
Registered Member
Join Date: 2014
City: ??
State: Washington
Country: US
Diagnosed: 10/2010
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 428
terbaer is on a distinguished road
Default Re: Grieving

I am so, so glad to hear that. You sound like a wonderful person. Continue on your journey and open yourself to suggestions. I haven't found any one thing yet that has made a significant change but you never know. Keep connected on this feed once in a while so I know how you're doing. Most of all.....Keep up the good work and positive energy...Remember that you will have pitty party days. I still do, but that's ok. I think it helps rejuvenate me. When I'm done I take a deep breath and say "Onward and upward!"....

I wish the best for you....
terbaer is offline  
Old 01-14-2015, 08:46 AM #15 (permalink)
Forgetmenot's Avatar
Very Helpful Member
Registered Member
 
Join Date: 2014
Posts: 1,377
Forgetmenot is on a distinguished road
Forgetmenot Forgetmenot is offline
Very Helpful Member
Registered Member
Forgetmenot's Avatar
Join Date: 2014
City: London
State: Hertfordshire
Country: UK
Diagnosed: 70/2010
Interest: I have Fibromyalgia, chronic pain, or chronic fatigue.
Posts: 1,377
Forgetmenot is on a distinguished road
Default Re: Grieving

The real you is you. I still have dream but there diffrent now.what ever your feeling your still you don't forget that, you might not ever be the same as you were years ago, but then nor am I or anyone else here.allow yourself to feel sad you have every right to. Trying to be Mrs happy 24/7 isn't helping you.xxxx
Forgetmenot is offline  
Closed Thread

Tags
chronic, daily, doctor, emotions, family, grief, men, symptoms


Currently Active Users Viewing This Thread: 1 (0 members and 1 guests)
 
Thread Tools Search this Thread
Search this Thread:

Advanced Search

 
All times are GMT -5. The time now is 07:45 AM.
Copyright © 2017