The Chronically Ill support Group
- Thread starter JennyMominRI
- Start date
Shugardrawers
<font color=teal><b>Ovarian Cancer Survivor!<br><f
- Joined
- Aug 12, 2003
- Messages
- 9,309
Rajah said:
Who says I don't complain? I have found the limits of what I am physically and mentally capable of and I don't push it anymore. My health and my life are far more important than "being strong". I'm no longer afraid to say that I'm tired, that I can't or that I don't feel well. Now, that doesn't mean I whine all day long. I do as much as I feel capable of doing and call it a day. By doing that, and not being afraid to listen to my body, I've been able to be far more active than I could be if I pushed it constantly.
You have been there for your family and friends all this time. Now it's their turn. The ones who can't hack it aren't worthy of you anyway. I had what I thought was a really good friend but when the going got tough, she ran. I haven't seen her in a year and she only replies to emails with excuses of being busy. It's her loss and I have enough to worry about right now without her. Now, that doesn't mean you should be Debbie Downer. The key to getting people to understand I think it education. Rather than "venting" I started just telling Dh about all my Dr visits, what the doc had to say, what the latest rx I'd been given was supposed to do etc.
I said all that to say this: You need to find a balance between sucking it up and venting. Never be afraid to say you can't do something and don't be afraid to say why you can't. Try to emphasize the things you CAN do. In fact, build your life around them. Not only will you feel more positive about your life but so will your family and friends. For example, I just don't have it in me anymore to clean house much so Dh usually does it. But I can manage an hour or 2 to fix him a nice dinner. I'm going to quit my job but I'm also going to use the time to go back to school part time. It's not a crime to give in, just don't give up.
I can talk the big talk here all I want but the honest truth is it's HARD right now. I feel frequently like I've hit the end of my physical and emotional strength on a daily basis. There really is no easy answer.
phorsenuf
Not so New Rule author
- Joined
- Feb 21, 2003
- Messages
- 19,619
I'm coming in late to this party, hope it's OK!
I too have fibro and I hate it! You just never know day to day somethimes how you will do. I also have terrible back problems (Degenitive disk disease, sciatica and bulging disks in the lumbar section as well as lingering problems from a broken tailbone). I have hypothyroidism, migraines that mimic strokes (another fun one), IBS and newly diagnosed with carpel tunnel syndrome. Of course they still haven't figured out the problems with my side, but I'm convinced its my gallbladder.
Life on a day to day basis is tricky. Somedays I feel great and others I just wan to crawl inder the covers and stay there.
I'm tired of the constant pain and I'm tired of being sick. I really don't complain or talk with anyone about it which I know isn't good. When people ask how I am I always so fine, no problems. What am I supposed to say??? LOL I'm one of those who keeps up the front when inside I am just dying!
I collect SS (actually got it on my first try) but I also work part-time. It's nice they let you do that. The company I work for was who I have worked with for a long time. They work around how I feel and I really only work about 15 hours a week, but its a win-win situation for all.
Anyways, I think I'll hang out here for a while if that's ok. I think it'll be nice to be "around" others who understand.
Gentle hugs to all!
I too have fibro and I hate it! You just never know day to day somethimes how you will do. I also have terrible back problems (Degenitive disk disease, sciatica and bulging disks in the lumbar section as well as lingering problems from a broken tailbone). I have hypothyroidism, migraines that mimic strokes (another fun one), IBS and newly diagnosed with carpel tunnel syndrome. Of course they still haven't figured out the problems with my side, but I'm convinced its my gallbladder.
Life on a day to day basis is tricky. Somedays I feel great and others I just wan to crawl inder the covers and stay there.
I'm tired of the constant pain and I'm tired of being sick. I really don't complain or talk with anyone about it which I know isn't good. When people ask how I am I always so fine, no problems. What am I supposed to say??? LOL I'm one of those who keeps up the front when inside I am just dying!
I collect SS (actually got it on my first try) but I also work part-time. It's nice they let you do that. The company I work for was who I have worked with for a long time. They work around how I feel and I really only work about 15 hours a week, but its a win-win situation for all.
Anyways, I think I'll hang out here for a while if that's ok. I think it'll be nice to be "around" others who understand.
Gentle hugs to all!
HI again,
I have Fibro too. Most days its manageable but soem days it really stinks and nobody seems to understand that you know?
I found this poem a while ago and sent it to my dh he has a better handle on it now I think.
The hardest part is not knowing day to day how youre going to feel. Some days I feel great and have all the energy in the wolrd the next I could have overdone it and have nothing left...
Anyway, heres the poem:
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder."
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies. "
I have Fibro too. Most days its manageable but soem days it really stinks and nobody seems to understand that you know?
I found this poem a while ago and sent it to my dh he has a better handle on it now I think.
The hardest part is not knowing day to day how youre going to feel. Some days I feel great and have all the energy in the wolrd the next I could have overdone it and have nothing left...
Anyway, heres the poem:
WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA
1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.
2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.
3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.
WHAT YOU SHOULD KNOW ABOUT ME
1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.
2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.
3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.
4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.
5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder."
6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.
7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. I have lost count of how many of Dr. Kevorkian's patients suffered from FMS as well as other related illnesses. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.
8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.
9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.
10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.
11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.
12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.
I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.
Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes...or their bodies. "
Rajah
DIS Veteran
- Joined
- Aug 17, 1999
- Messages
- 9,632
Michelle -- yes, I have been tested for the UTI and sometimes it is bacterial in nature, sometimes it is "just" irritated. I had surgery for them to look at the bladder and I have... shoot, I forget the name now, but basically it means "your bladder is easily irritated and we can see no reason for it and sorry but there's very little we can do to treat it".
Shuga -- thank you.
Binny -- thank you for posting that. I know more about lupus than I do about fibro, but I have several friends with fibro and it is a very helpful read.
Shuga -- thank you.
Binny -- thank you for posting that. I know more about lupus than I do about fibro, but I have several friends with fibro and it is a very helpful read.
Thanks for the hugs everyone.
I hope everyone is having an ok day.
Here in Memphis its in the high 70's and the birds have been singing all day long
I love the little glimpses of spring we are getting
I hope everyone is having an ok day.
Here in Memphis its in the high 70's and the birds have been singing all day long
I love the little glimpses of spring we are getting
Having a pretty good day here on Long Island. Got to 74 today so I took a nice slow walk around the neighborhood. Felt good to be out for a change. I have a nice relaxing weekend to look forward to. Hope everyone is doing well.
Saw my rheum today.
If my chol is still up this week he wants me on CRESTOR which HE ALSO TAKES. He said that people with inflamm. arth. and autoimmune disease have the same heart attack/stroke risk as people with DIABETES. I knew it was higher, but not that high! He said it's also decreased his migraines.
He gave me a script for INJECTABLE methotrexate, said it should work better for my shoulder pain...almost jumped off table when he twisted my arm up.
Although my face is barely pink today (figures) but he said it sounds like I have MILD rosacea and to not do anything for it unless it worsens...said A LOT of CTD patients have it.
Said my sinuses could be "blocked" not infected (pain/pressure/stuffiness for a week) and to see ENT, but gave me Cipro in case it IS an infection. I believe it is.
ANd I"m leaving for Florida on Thursday so I need to feel better!
If my chol is still up this week he wants me on CRESTOR which HE ALSO TAKES. He said that people with inflamm. arth. and autoimmune disease have the same heart attack/stroke risk as people with DIABETES. I knew it was higher, but not that high! He said it's also decreased his migraines.
He gave me a script for INJECTABLE methotrexate, said it should work better for my shoulder pain...almost jumped off table when he twisted my arm up.
Although my face is barely pink today (figures) but he said it sounds like I have MILD rosacea and to not do anything for it unless it worsens...said A LOT of CTD patients have it.
Said my sinuses could be "blocked" not infected (pain/pressure/stuffiness for a week) and to see ENT, but gave me Cipro in case it IS an infection. I believe it is.
ANd I"m leaving for Florida on Thursday so I need to feel better!
Shugardrawers
<font color=teal><b>Ovarian Cancer Survivor!<br><f
- Joined
- Aug 12, 2003
- Messages
- 9,309
that you feel much better before your trip. Nothing sucks more than being sick and travelling! Are you going to WDW?I just got home from having the Echocardiogram. It took the technician about 30 minutes to do the test. I was getting a little concerned because I had this test 7 years ago and it did not take this long or go to areas around my hiatal hernia either. I asked the Technician how I looked and he replied that only the doctor could say that I needed surgery. That really floored me and made me think that something is really wrong. I said "WHAT", and he said well it is not up to me to say whether surgery is needed. Oh boy!
I have an nuclear stress test on the 25th and I see the doctor April 11. I certainly hope that if the doctor would see something serious, he would call me and not let it wait. I tried to pin the technician down for more information, but he was not giving anything up.
Shugardrawers
<font color=teal><b>Ovarian Cancer Survivor!<br><f
- Joined
- Aug 12, 2003
- Messages
- 9,309
Winnie how you feeling today? You gonna be able to make your trip?
I normally would just neglect to mention this but I had to tell everyone that today is my 42nd birthday. Which is quite an accomplishment for someone who was not expecting to see Christmas, let alone another birthday!
I normally would just neglect to mention this but I had to tell everyone that today is my 42nd birthday. Which is quite an accomplishment for someone who was not expecting to see Christmas, let alone another birthday!
Enjoy your special day!!Shugardrawers
<font color=teal><b>Ovarian Cancer Survivor!<br><f
- Joined
- Aug 12, 2003
- Messages
- 9,309
Ty! I plan to lay around the house like a slug until about 5pm when I'll get up, throw on something cute and go make a pig of myself at Cheeseburger In Paradise! Love their bleu cheese burger! Then I'll come home and lay in bed and groan. Then I'll gorge on the cake Dh swears he's gonna bake me and fall asleep in a sugar coma. That's the way to celebrate 
Share this page
-
New Shaken & Stirred Classes + Whiskey & Wonder Event
-
New Shanghai Disney Celebration + Hong Kong Duffy Treats!
-
Need to Rent a Stroller, ECV, or Wheelchair While at Disney World? Save 10%!
-
Being Called a 'Disney Adult' Is Not the Insult You Think It Is
-
Are the New Upgrades Enough to Save Hollywood Studios?
-
Disney & Formula 1 'Fuel the Magic' for New 2026 Race Season
-
Disney x BAGGU Debut Mickey & Friends Bag Collection
Disney Vacation Planning. Free. Done for You.
Our Authorized Disney Vacation Planners are here to provide personalized, expert advice, answer every question, and uncover the best discounts.
Let Dreams Unlimited Travel take care of all the details, so you can sit back, relax, and enjoy a stress-free vacation.
Start Your Disney Vacation
