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patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 12/3/2009 7:32 AM (GMT -7)   
A friend called me the other day to tell me for months she has been battling a frozen shoulder and the pain is agonizing. She asked what I knew about a med but MOST importantly she said she never had understood how I must hurt every day of my life. She went on to say she sees me as a courageous wonderful example of life handing a sentence out that changes everything. Now once my head was again able to fit in the room hehehe, I thought about her most important question. She asked me to please give her a list of things that help me cope. Well I had to stop a minute and give that thought.

Then I thought about posting this b/c so many of our new friends may learn some pointers from we "older" fibromites. Even though I had rapid onset a mere two years ago I have learned so much.

Here is my list:

my furbaby; my standard poodle who is just 2 and has an incredible affinity for sensing my needs! Just rubbing him dissolves so much pain and he FORCES me to walk

massage, find the right person and it can change your world
my recliner
delegating, never did this well as I felt no one could do better. Now just do it and help me!!
BRALESS
Scrabble, a must
My new car with auto start and auto heat before I enter
pillow top mattress
an old fashioned water bottle
Jo Malone candles, my biggest splurge, especially basil
learning to LOVE take out, ouch

What are your personal little things that bring you comfort and pleasure?

It is only 9:30 in the morning and this friend just showed up at my door with 3 batches of cookies for my drive to N.H. tomorrow for the holidays. How that touched me. WOW, gotta get packing.

Love all of you.

Patsie

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 12/3/2009 8:03 AM (GMT -7)   
Living with multiple illnesses has been a journey for me. At times I do feel completely
overwhelmed. I did go through a grieving process, mourning the loss of my good health.

After I accepted the fact that I have a new "normal" life it became easier for me. I looked for
ways that might help me. Finding this forum has been a blessing.

I am lucky to have a very supportive husband, family and friends. It does make it easier to
cope when you have a support system. They may not always realize my pain levels but
they do understand when I can't participate in activities or have to cancel plans.

Exercise, relaxation therapy, deep breathing, hot baths, any heat source and my massage
chair pad help.

Activities help distract from pain. I enjoy writing poetry, read novels (Jodi Picoult),gardening,
watching movies and hanging out with family and friends.

My 2 cats, Frankie and Charlie are also a great comfort to me.

And last but not least I try to stay positive about things. I have Hope and Faith that I can
still continue to enjoy my life despite chronic pain and illness.

Hugs

Robin
MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 12/3/2009 9:30 AM (GMT -7)   
Robin explained it so well.

First, I learned to cope by confronting my illness and that it wasn't going to get the best of me. I stopped feeling sorry for myself and decided to go on with living my life. Learning to accept my bad days and give myself permission to relax and rest. It is really hard to know the difference between a bad day when I NEED to rest, and a bad day brought on by lack of motivation and movement. I did some aerobics today after a few weeks of inactivity again. I was feeling worse and worse every day, so even though I only wanted to rest on the couch and my whole body was aching, I forced myself to move. I already feel better.

My 'me' time has become very important. When I feel really bad, a hot bath does wonders. I let dh take care of the kids, and I calm down with some soft music or a good book. Same goes for when the noise or stimulus gets to be too much... I don't feel guilty anymore if I have to leave a family activity (like our Wii parties, lol. The kids love them, but I dread them!)

heat, heat, heat :)

Mostly, it's making sure that I still live my life. I might have to do things a little differently, or accept that there are some things I can't do anymore. But that's ok, and I will not let fibro turn me into an invalid.
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet


puppylover
Veteran Member


Date Joined Feb 2009
Total Posts : 821
   Posted 12/3/2009 10:17 AM (GMT -7)   
Playing with my golden retriever.  She can change my mood to good in just minutes.
Hot baths.
Sudoku
Finally giving myself permission to relax.  I was always on the go, moving from one project to another.  Now I can just take a day off and lay around, reading or watching t.v.  I call these days my "snow days", like when your school is called off because of heavy snow and you get to stay home and do whatever you want.
Puppylover
 
Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
 
On the eighth day God created Golden Retrievers.


pattipanda
Veteran Member


Date Joined Jan 2009
Total Posts : 1014
   Posted 12/3/2009 10:20 AM (GMT -7)   
Hi there Ms McPatsie!!
 
Wow .. Now that's a gooooood friend.  Nothing worse than a long drive with out cookies!!  But I do think there's something about cookies that bring a smile no matter how bad you might be hurting.  I think we should start a fund raiser for cookie research for fibromites!!!  I mean, REALLY, don't cookies just save the day sometimes?!?!
 
As for your friend and your question my coping tools are:
 
  • My two furbabies Boo & Chloe (they always bring me a smile) and yes.. touching their fur melts my owies away...
  • Support and fun from good friends, like you, that understand
  • My recliner
  • Good movies
  • Spending with my loved ones
  • Giving myself a reason to get up and get going. Since I'm still able to work.. this keeps me going.  If I wasn't able to work, I would volunteer.  Getting out and doing for others means the world to me and it keeps me from getting lonely and depressed.
  • Making sure I get at least 8 hours in bed.. even if I can't sleep I can at least rest.

Hugs to all...


Patti
 
Fibormyalgia, 4x Lyme Disease Survivor, Depression, Anxiety DisorderDyslexia, Degenerative Disc Disease, Allergies, Bi-lateral Carpal Tunnel, Psoriasis. 
Meds = Elavil, Meloxacam, XanaxLipitor, Talwin 
"Shoot for the moon, even if you miss, you'll land among the stars" - author unknown


Justme7771
New Member


Date Joined Dec 2009
Total Posts : 12
   Posted 12/3/2009 12:22 PM (GMT -7)   
crazykitty: you are so right when days are overwhelming and your feelings are all over the place....I am still coping the best way I know how.....just for me.

mamanan: You hit it on the nose when you said "Learning to accept my bad days and give myself permission to relax and rest." As I have taken those days and shut out the rest of the world to take care of my health....after all I am the only one living in my skin not anyone else.

I just joined here as I was trying to find a chat room to chat with others about some of my feelings .....Plenty has been going on this week with me as I had to get that H1N1 shot and I feel a bit ill from it, that was yesterday when i got the shot....I just feel like hybernating in my bed for the winter time , just like the bears.....LOL.

There's so much to do, with the Diabetes health maintenance, the fibro maintenance, and so on....I am feeling angry and haven't felt this way in a while....maybe i will go and beat up a pillow...one that I don't need .....PULVERIZE IT!.....tHANKS
Keep asking till you find your answer.


Justme7771
New Member


Date Joined Dec 2009
Total Posts : 12
   Posted 12/3/2009 12:27 PM (GMT -7)   
crazykitty: you are so right when days are overwhelming and your feelings are all over the place....I am still coping the best way I know how.....just for me.

mamanan: You hit it on the nose when you said "Learning to accept my bad days and give myself permission to relax and rest." As I have taken those days and shut out the rest of the world to take care of my health....after all I am the only one living in my skin not anyone else.

I just joined here as I was trying to find a chat room to chat with others about some of my feelings .....Plenty has been going on this week with me as I had to get that H1N1 shot and I feel a bit ill from it, that was yesterday when i got the shot....I just feel like hybernating in my bed for the winter time , just like the bears.....LOL.

There's so much to do, with the Diabetes health maintenance, the fibro maintenance, and so on....I am feeling angry and haven't felt this way in a while....maybe i will go and beat up a pillow...one that I don't need .....PULVERIZE IT!.....Thanks for letting me share.
Keep asking till you find your answer.


patsie
Regular Member


Date Joined Dec 2008
Total Posts : 478
   Posted 12/3/2009 1:08 PM (GMT -7)   
Welcome Patricia and thanks for posting. WE all have the beat up the pillow days but somehow we manage to get through it. This is a great place to come to share thoughts, concerns, really just about everything.

I did this post as a feel good fun thing this morning and several of the responses were very thought provoking. Thank you all. We don't all have understanding supporting families and this group is our family.

Best to everyone, Patsie

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/3/2009 6:47 PM (GMT -7)   
Hi Patricia and welcome to the family.
 
My comfort things are: massage shower head, my dear sweet hubby and his back massages right before I go to sleep, my 15 mo old bichon and almost 9 mo old shih tzu (they seem to know right where I hurt the worse), computer scrabble and spider solitaire to play when I really need a distraction from the pain, faith and knowing having fibro isn't the worse thing I could have and all my grandchildren and having the pleasure of watching them grow up.
 
I got our Christmas gift from oldest son and DIL yesterday and cheated and opened it, it is a set of 1000 count sheets. As far as I know I have never slept on 1000 count sheets so looking forward to going to bed tonight. We will act surprised at Christmas and they don't need to know we have been sleeping on them. turn
 
luv and hugs
Marlee
 
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 12/3/2009 7:51 PM (GMT -7)   
Marlee, are you going to fold them, iron the creases back in and wrap them back up? Or is your gift giver long distance?

I love spider solitaire, too.
Heating pad in my car
Heating pad on my bed
Massage chair
vitamins
Allowing myself to be imperfect
Using my cane
My grand furbaby!
When dd and sil move out, I will get the bathroom with the tub for me and will take baths again! Heard epsom salts are great in the bath! The hot tub has been off because hubby doesn't like going in it and it costs money to run. I will turn it back on again, too!

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 12/4/2009 8:00 AM (GMT -7)   
They won't be home for Christmas Sue so I can fake the surprise reaction. I thought I was going to have to change sheets last night before I could go to sleep they were like sleeping on sandpaper. I guess you have to wash them a few times before they soften up so back to the washer they go today.
 
Yes, epson salts is suppose to be good.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40588
   Posted 12/5/2009 8:53 PM (GMT -7)   
Way to go for starting this thread, I absolutely love it!!!
 
I have found my biggest way to adjust to fibromyalgia is living one day at a time.  Though there are a lot of things that bring comfort. 
 
My bed buddy
Hot baths
Permission to rest and to feel bad
My DH for understanding
My boss for understanding and the ability to work again, (even if I can't make it through the winter, she says she will get me a leave of absence).
Learning to accept myself for who I am and my limitations
Just being happy and enjoying all I can in life each day.
 
I am so happy that I got internet and found this forum when I did.  I love the way that everybody is supporting eachother.
 
Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 12/6/2009 11:01 AM (GMT -7)   
Pat Panda cookies what a great idea  thanks they are tasty and make me smile  I vote for cookies.
Other things that help out are my 3 cats and POM doggie.  My DH and his sweet generous ways.  My heated throw.  My lazyboy and good bed, comforter and pillows. 
Finding ways to relax and listen to my body and what it needs.  Oh comfortable shoes like my new SAS shoes very comfy!
 
Hope you all have a pain free day!
Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression

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