Go Back   NeuroTalk Support Groups > >

The grief of being well to being chronically ill

Reply
 
Thread Tools Display Modes
Old 03-12-2015, 05:42 PM   #1
baba222
Member
 
Join Date: Sep 2014
Location: Down South
Posts: 408
My Mood: The grief of being well to being chronically ill
Default The grief of being well to being chronically ill

Is there any good information on this that any of you have found helpful?

I went from very healthy to now chronic neuropathic pain that prevents me from functioning like before.

I am disabled by it.

I am grieving for what I had before.

Any suggestions, oh wise ones?

baba222 is offline   Reply With Quote
"Thanks for this!" says:
eva5667faliure (03-19-2015), RSD ME (01-13-2016), zinnia (01-12-2016)
Old 03-12-2015, 05:59 PM   #2
Healthgirl
Member
 
Join Date: Dec 2014
Posts: 791
Default

I am grieving as well.

This is what I'm doing:

On the days that I can see straight I am reading.
I am becoming better at meditation.
I am listening to music.
I am being distracted by some Netflix series

I am trusting the universe
I am living in the present, reminding myself to be grateful, trying not to be fearful of the future.
I am realizing that worrying is only sending more vibrations to my cells to cause them to misbehave.

I am crying in between all of these other things. It's been 7 months for me since I went from on top of the world to..... what ever this is.
Healthgirl is offline   Reply With Quote
"Thanks for this!" says:
Diandra (03-21-2015), Enna70 (04-11-2015), eva5667faliure (03-19-2015), ger715 (03-12-2015), indigo (10-26-2015), RSD ME (01-13-2016), SylvieM (03-18-2016), visioniosiv (04-18-2015), zinnia (01-12-2016)
Old 03-12-2015, 08:01 PM   #3
EnglishDave
Magnate
 
EnglishDave's Avatar
 
Join Date: Dec 2014
Location: Yorkshire, England
Posts: 2,098
My Mood: The grief of being well to being chronically ill
Cool Smirk

Healthgirl you are working through the mental exercises needed to help you Cope with a long-term or life-long Chronic Pain condition.
To both of you, the Goal is Acceptance, of being in constant, excruciating pain. Losing one's social, and possibly work, life. Being restricted in what tasks one can do. Losing friends/partners. Warding off Depression.
I have suffered extreme Chronic Pain that has become worse year on year for 25 years with added complications like TN, Cluster Headaches and Cancer. I Accept that the damage done to my body causes some of the pain. Other factors cause other problems which I also have to Accept.
But I don't do it meekly. I still see all my Doctors, even Neuros again this month, to see if there are any improvements over the pain/neuro meds I take. I also read when I can. Today I found out there may be a link between some of my Neuropathic problems and heavy use at work of Xylene and Toluene in the '80s.
Work on Accepting your conditions, while fighting it every step of the way.

Dave.
EnglishDave is offline   Reply With Quote
"Thanks for this!" says:
Enna70 (04-11-2015), eva5667faliure (03-19-2015), ger715 (03-12-2015), indigo (10-25-2015), RSD ME (01-13-2016), SylvieM (03-18-2016), zinnia (01-12-2016)
Old 03-12-2015, 10:57 PM   #4
ger715
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,162
My Mood: The grief of being well to being chronically ill
Default Baba & Healthgirl,

I had dealt with headaches, back pain, etc. for several years; but still could lead a pretty active live. Since I had my spinal fusion/laminectomy over 8 years ago the world that I had known rapidly started to change. Continuing spine pain, along with Periphereal Neuropathy pain, Narcotic meds to help with the 24/7 pain, leading to bladder surgery with additional medical issues. I felt the depression deepening and not wanting to pick myself up. Just wanted to hid and cover myself under the blanket as a safe haven.

Thankfully, I realized all this would only lead to additional disability and depression which by my own actions was bringing me down. My biggest enemy was my dwelling on what I could no longer do instead of being grateful for what I am able to do. I still can do laundry; maybe a little slower and takes a few extra days. I can still put some meals together; not like the ones I use to enjoy making. I felt satisfaction at being to accomplish a whole list of things that were now done just differently.

The biggest accomplishment was/is acceptance of my life as it is now instead of dewelling on how it once was. Of course, there are times when I feel a bit down; but don't stay there for long. Since it takes me longer to accomplish certain things; I don't have time to be on the "pity pot" for long. Also found other areas I now enjoy that I hadn't even thought of before.


Gerry
ger715 is offline   Reply With Quote
"Thanks for this!" says:
alatini (05-12-2018), EnglishDave (03-13-2015), eva5667faliure (03-19-2015), Healthgirl (03-13-2015), Hopeless (01-12-2016), indigo (10-26-2015), RSD ME (01-13-2016), zinnia (01-12-2016)
Old 03-19-2015, 11:29 AM   #5
eva5667faliure
Grand Magnate
 
eva5667faliure's Avatar
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,498
My Mood: The grief of being well to being chronically ill
Default

Quote:
Originally Posted by baba222 View Post
Is there any good information on this that any of you have found helpful?

I went from very healthy to now chronic neuropathic pain that prevents me from functioning like before.

I am disabled by it.

I am grieving for what I had before.

Any suggestions, oh wise ones?

dear fellow sufferer
it wasn't to long ago i was playing volleyball
barefoot in the sand
a 4 mile walk a day
light weights more reps for definition
i had a powerful body
standing tall at 5' 9-1/2" tall
at 145lb to 150lb
no problems until i was in my latter 40's
delivering a child natural at 38 carried her 42 weeks

i don't know

one night getting up from sleep
to get ready for my evening job
and thought i had a terrible stiff neck
well after the pain becoming unbearable to the
hospital we go
ruptured disk bla bla bla
neuropathic problems
peripheral neuropathy
hand and feet shot
fibromyalgia that riddles my right side
shoulder to waist

keep coming to this beautiful helpful arena
and may you not suffer
as miracles do happen
me
__________________
someone who cares
eva
eva5667faliure is offline   Reply With Quote
"Thanks for this!" says:
EnglishDave (03-19-2015), RSD ME (01-13-2016)
Old 03-19-2015, 11:40 AM   #6
eva5667faliure
Grand Magnate
 
eva5667faliure's Avatar
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,498
My Mood: The grief of being well to being chronically ill
Default

Quote:
Originally Posted by EnglishDave View Post
Healthgirl you are working through the mental exercises needed to help you Cope with a long-term or life-long Chronic Pain condition.
To both of you, the Goal is Acceptance, of being in constant, excruciating pain. Losing one's social, and possibly work, life. Being restricted in what tasks one can do. Losing friends/partners. Warding off Depression.
I have suffered extreme Chronic Pain that has become worse year on year for 25 years with added complications like TN, Cluster Headaches and Cancer. I Accept that the damage done to my body causes some of the pain. Other factors cause other problems which I also have to Accept.
But I don't do it meekly. I still see all my Doctors, even Neuros again this month, to see if there are any improvements over the pain/neuro meds I take. I also read when I can. Today I found out there may be a link between some of my Neuropathic problems and heavy use at work of Xylene and Toluene in the '80s.
Work on Accepting your conditions, while fighting it every step of the way.

Dave.
Amen to that
the answer is that simple
it is the truth
some harder for other
but we must strive for this truth
all else will be easier to deal with
it is what it is
wishing all well
__________________
someone who cares
eva
eva5667faliure is offline   Reply With Quote
"Thanks for this!" says:
EnglishDave (03-19-2015), ger715 (03-21-2015), RSD ME (01-13-2016)
Old 03-19-2015, 11:42 AM   #7
eva5667faliure
Grand Magnate
 
eva5667faliure's Avatar
 
Join Date: Aug 2011
Location: new jersey
Posts: 3,498
My Mood: The grief of being well to being chronically ill
Default

Quote:
Originally Posted by Healthgirl View Post
I am grieving as well.

This is what I'm doing:

On the days that I can see straight I am reading.
I am becoming better at meditation.
I am listening to music.
I am being distracted by some Netflix series

I am trusting the universe
I am living in the present, reminding myself to be grateful, trying not to be fearful of the future.
I am realizing that worrying is only sending more vibrations to my cells to cause them to misbehave.

I am crying in between all of these other things. It's been 7 months for me since I went from on top of the world to..... what ever this is.
so beautifully said
wishing you well
me
__________________
someone who cares
eva
eva5667faliure is offline   Reply With Quote
"Thanks for this!" says:
ger715 (03-21-2015), RSD ME (01-13-2016)
Old 03-21-2015, 09:51 AM   #8
Diandra
Member
 
Diandra's Avatar
 
Join Date: Nov 2007
Location: Connecticut USA
Posts: 548
Default

Quote:
Originally Posted by baba222 View Post
is there any good information on this that any of you have found helpful?

I went from very healthy to now chronic neuropathic pain that prevents me from functioning like before.

I am disabled by it.

I am grieving for what i had before.

Any suggestions, oh wise ones?


hi baba,

Like dave, i am 20+ yrs in this and, as dave said, acceptance. As difficult as that seems right now. Keep fighting though, fix what you can fix, keep going for all the methods or treatments that ease your pain and your soul.

Focus only on what is good in your life, do not look at the things you cannot change because you are wasting your very precious energy and time. It is so hard, i know, but cherish the people in your life that are still coming around and helping and being with you. Don't stew over the family and friends who maybe are not there for you.

Losing my career was the hardest for me. Feeling productive was hard. I volunteered as i could. When i first lost my job, we gave up our house for a small apt so we could save money. We lived across the street from a hospital so i walked across the street to the volunteer dept, told them my story and my limitations and asked them if they had volunteer job for me. Three hours a week i worked in the family icu waiting room tending to, holding the hands and just trying to help the families who were distraught over their loved ones brought to the icu by car accidents or sudden severe illness. I was helping them, with all my limitations, i was still able to help someone and these people were so grateful for the help. Many were alone and elderly and crying. Holding someone's hand or an arm around a shoulder and kind,soft word was all i could offer but, it helped. Little did all these folks know, they were helping me learn, i did still have some value. The distraction of all this took my mind off my health and pain issues.

You learn there is always someone worse off then you and you can help and that alone, helps your soul. Truly....i know it sounds corny, but it is true. I made some wonderful friends with that little hospital job, 3 hrs a week.

There is a book given to me in 1994 when it was written called
"a whole new life" by reynolds price about how he dealt with a life altering illness that turned his life upside down. He was a professor at duke univ, an author.

And obviously, seeing a therapist to talk about the grief and loss.
I not only went to a therapist but to a hypnotist who did hypnotize me and had me go back in my mind to an age when i was my happiest and healthiest....we went back yr by to the age of 25. He had me recall how i felt, my joy, my young healthy body, my frame of mind. He taught me that when i am at my lowest, to think about that time and oddly, that works. The mind is powerful, that is why meditation and guided imagery works. Go on youtube and there are many lovely guided imagery meditations with lovely music that are helpful.

My best to you as you deal with this,
diandra
Diandra is offline   Reply With Quote
"Thanks for this!" says:
bluesfan (03-21-2015), EnglishDave (03-21-2015), eva5667faliure (01-13-2016), ger715 (03-21-2015), RSD ME (01-13-2016)
Old 03-22-2015, 12:06 AM   #9
ger715
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,162
My Mood: The grief of being well to being chronically ill
Default

Quote:
Originally Posted by Diandra View Post
hi baba,

Like dave, i am 20+ yrs in this and, as dave said, acceptance. As difficult as that seems right now. Keep fighting though, fix what you can fix, keep going for all the methods or treatments that ease your pain and your soul.

Focus only on what is good in your life, do not look at the things you cannot change because you are wasting your very precious energy and time. It is so hard, i know, but cherish the people in your life that are still coming around and helping and being with you. Don't stew over the family and friends who maybe are not there for you.

Losing my career was the hardest for me. Feeling productive was hard. I volunteered as i could. When i first lost my job, we gave up our house for a small apt so we could save money. We lived across the street from a hospital so i walked across the street to the volunteer dept, told them my story and my limitations and asked them if they had volunteer job for me. Three hours a week i worked in the family icu waiting room tending to, holding the hands and just trying to help the families who were distraught over their loved ones brought to the icu by car accidents or sudden severe illness. I was helping them, with all my limitations, i was still able to help someone and these people were so grateful for the help. Many were alone and elderly and crying. Holding someone's hand or an arm around a shoulder and kind,soft word was all i could offer but, it helped. Little did all these folks know, they were helping me learn, i did still have some value. The distraction of all this took my mind off my health and pain issues.

You learn there is always someone worse off then you and you can help and that alone, helps your soul. Truly....i know it sounds corny, but it is true. I made some wonderful friends with that little hospital job, 3 hrs a week.

There is a book given to me in 1994 when it was written called
"a whole new life" by reynolds price about how he dealt with a life altering illness that turned his life upside down. He was a professor at duke univ, an author.

And obviously, seeing a therapist to talk about the grief and loss.
I not only went to a therapist but to a hypnotist who did hypnotize me and had me go back in my mind to an age when i was my happiest and healthiest....we went back yr by to the age of 25. He had me recall how i felt, my joy, my young healthy body, my frame of mind. He taught me that when i am at my lowest, to think about that time and oddly, that works. The mind is powerful, that is why meditation and guided imagery works. Go on youtube and there are many lovely guided imagery meditations with lovely music that are helpful.

My best to you as you deal with this,
diandra

Diandra, really liked your idea of volunteering at the hospital. I'm sure those you visited really appreciated. Just shows there are so many ways we can be useful; just have to give it our best. Learning new ways to work with the abilities we do have and not focus on what is gone only brings us down.


Gerry
ger715 is offline   Reply With Quote
"Thanks for this!" says:
Diandra (04-11-2015), EnglishDave (03-22-2015), eva5667faliure (01-13-2016), RSD ME (01-13-2016)
Old 04-11-2015, 09:38 AM   #10
Mark56
Grand Magnate
 
Mark56's Avatar
 
Join Date: Mar 2010
Location: Colorado, USA
Posts: 4,706
My Mood: The grief of being well to being chronically ill
Default Living Through, Then Beyond

Loss
So deep that wonder emerged whether I would survive
Body wracked by pain
So visceral
I screamed end on end until lapsing
Unto the bliss of unconsciousness
No more the athlete
Career not only shambles, but evaporated as mist
"Friends" in the profession turning away,
Probably out of fear
It could be catching
Or
They might feel it
Or
It is not honorable to watch one slip from vitality
Alone, but for family, very closest of friends,
Cash passes as though through a sieve
Lasts a while
Yet finally missing as though smoke from snuffed candle
Home and possessions sold
Thank God
Brings some financial reprieve
Food on the table
Shelter
But
Pain overwhelmed yet still
Docs
Meds
Surgery upon surgery upon surgery
Disability
Morose
Sought escape
None found
SCS implant
Some control over major pain
But not all
Could dance no more
Hiking by wheelchair, not astride sturdy legs
SPOUSE, my blessing encouraged me - grow
Sought career once more
Doors made fast , declining market, openings where?
I dwelled in self pity, and too long for my health
Near calamity
THEN inspiration
Reach out, outreach
Connect
Network
SO MANY like me
Without career, profession-less
What about them?
Started small group
Compared notes
Shared networking strategies
Practiced skills
Then
One
By
One
Each found revival of employment
Self esteem restored, providing again
Sweet
And
Even I, broken, yet capable
Grasped opportunity
And hope became promise morphed to work exploded into joy
Truly NOT as lofty as once held in my career valise
Yet.....enough.....and gratifying
At long last
Yes
Still have pain
Have had more surgeries
Meds held at bay for breakthrough need
Thankful for SPOUSE who encouraged, legion of medical pros
Who helped
And
Counseling which centers my focus
A path
Now used oft with cane
And my wheelchairs
Which leads to me being whole

My prayer for you, too,
M56
Mark56 is offline   Reply With Quote
"Thanks for this!" says:
bluesfan (04-30-2015), Diandra (04-11-2015), EnglishDave (04-11-2015), eva5667faliure (01-13-2016), ger715 (04-11-2015), RSD ME (01-13-2016)
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Preparing for the Flu for the chronically ill reverett123 Parkinson's Disease 8 01-11-2013 10:11 AM


All times are GMT -5. The time now is 08:03 AM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy