Hi Guys
Just wondering if having this condition has changed anything about the way you view life, medicine, doctors any thoughts or feelings changed as a result of the illness? It was a question that my occupational health nurse asked me last week and something that I have given a great deal of thought to and realise yes, it really has changed my thoughts and how I intend to live my life from this point forward.
Firstly I have had to admit to my partner that for many years I have been a workaholic, for the previous 25 years of my life I have placed a great deal of pressure on myself, a needing to achieve so very much. I understand the psychological reasons why however, found this very hard to accept or change. I also realise that I was not taking good care of my health as a result of my commitment to 'work', I lacked quality time in my private life.
So I believe it has and will bring positive changes, there is an old saying 'everything happens for a reason'. Although I can't say how pleasing it was to have this diagnosis, I guess the phrase that springs to mind is 'it is not where you start but, where you finish that counts'. Hence I would have to say I am much more positive about life now also over the last few months have had the joy of starting to get to know my new family on this forum.
Thanks for listening to my rantings and, I would love to hear your stories.
What have you learnt from MC and how has this changed you?
Moderators: Rosie, Stanz, Jean, CAMary, moremuscle, JFR, Dee, xet, Peggy, Matthew, Gabes-Apg, grannyh, Gloria, Mars, starfire, Polly, Joefnh
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annie oakley
- King Penguin
- Posts: 3859
- Joined: Fri May 13, 2011 5:56 pm
Actually it has changed some views I had. I went from thinking I was all that to feeling sorry for myself back to I can deal with it to self pity, then I finally realized things were going to have to change to make other things better....This board and the family here have taught me there is light at the end of the tunnel and the truth of it all is that we will all survive. I have learned a greater appreciation and understanding that Doctors just might not know all the answers that we were taught to believe they knew. That self help Includes the support of kindred spirits, (Exstended family) Also a very grateful feeling that someone else has it far worse than I do, not to make light of anyones situation at all. In short I feel grateful that I breathe every single day that is allowed me, and I will find a way until it is my turn to leave this world. Sorry to get deep. Love Oma
May I be more compassionate and loving than yeterday*and be able to spot the idiots in advance
Wow! This is an inspiring topic. For a long time I thought that I might be the only one who felt this way, but It's beginning to appear that MC changes everyone, true to it's life-altering status.
Back before I found relief, my doctors couldn't find anything wrong with me, and I hadn't yet found the people on this board, so I had no choice but to acknowledge that I had developed some sort of miserable rare disease, for which there was no cure, (since the doctors didn't know anything about it), and I had resigned myself to live the rest of my life in misery. I actually wondered how long I would be able to survive, before I got so run down that I had a heart attack, or a stroke, or some other fatal complication. A couple of years later, when I was lucky enough to be able to figure out that gluten was the key, and I was able to prove to myself that I could eliminate my symptoms by controlling my diet, I experienced a true epiphany.
When the reality finally soaked in, that I actually had my life back, I looked at the world in a completely different way. Everything, (especially the simple things in life), meant much more to me. Nature was more beautiful, all life was more precious, and emotions were deeper. Before my symptoms, I never cried, and I mean never, (other than as a small child, of course). After the advent of my symptoms, I found that the simplest things could bring a tear to my eye, and to this day, that has not changed. I can read a post on this board about someone having a really bad day, and suddenly I'm all misty-eyed. Or, at the other extreme, I can read a post about someone finally achieving remission, after a long, hard struggle, and tears of joy will creep down my cheeks. That never could have happened before.
This disease has changed me immensely, in almost every aspect of my life. As mini so artfully pointed out, I used to feel obligated to work all the time, and for many, many years, I worked at least six and a half days every week, all year long, never taking a vacation that lasted more than four or five days, and I was always "putting off" things that I didn't seem to have time for, that I shouldn't have been putting off. I view work in a different light, now, but, of course, I see everything in a different light, now.
Prior to the onset of my symptoms, I very rarely ever went to a doctor, but I had all the faith in the world in them, and while I knew they weren't miracle workers, I felt secure that if I ever did need them, they were there, and would do anything in their power to help me. Now, of course, that faith is shattered, and I "see" most doctors as "technicians", intent on dishing out a "one-size=fits-all" treatment program, while basing virtually every decision on a standard code of ethics, dictated by the insurance companies, and the liability lawyers. <sigh>
We've talked about this before, but I still maintain that as miserable as the disease was, before I found my solution, I still feel very fortunate that I have it, because if I hadn't developed the disease, I never would have found this wonderful group of people, from whom I have learned so much, and with whom I feel such a strong bond.
That seems odd, doesn't it, to be so grateful to have such a miserable disease? I think that aspect in itself speaks volumes for the incredible effect that this disease has on people. But of course, I don't credit the disease itself for these "benefits". The disease merely provides the motivation for change. I think that it is the people who have this disease, who are solely responsible for the wondrous changes that the disease brings.
We are like pioneers in the days of the old West, suddenly thrust into a hostile environment, and we have to drastically alter our lifestyles in order to "survive". We are surrounded by doctors who, for the most part, are unable to do much more for us than the ill-equipped doctors found on the western frontier, 150 years ago. Once we live through it, we will never be the same.
Lest newbies think that we are all nuts, talking about the disease this way, I'd like to point out that these changes in our personalities don't take place until we are able to get our lives back. When you achieve remission, yourself, you will probably feel the same way that we do. Until then, it's just a disgusting, miserable disease.
At least that's the way I see it. Thanks for the opportunity to ramble on about this "weird" side-effect of dealing with the disease.
Love,
Tex
Back before I found relief, my doctors couldn't find anything wrong with me, and I hadn't yet found the people on this board, so I had no choice but to acknowledge that I had developed some sort of miserable rare disease, for which there was no cure, (since the doctors didn't know anything about it), and I had resigned myself to live the rest of my life in misery. I actually wondered how long I would be able to survive, before I got so run down that I had a heart attack, or a stroke, or some other fatal complication. A couple of years later, when I was lucky enough to be able to figure out that gluten was the key, and I was able to prove to myself that I could eliminate my symptoms by controlling my diet, I experienced a true epiphany.
When the reality finally soaked in, that I actually had my life back, I looked at the world in a completely different way. Everything, (especially the simple things in life), meant much more to me. Nature was more beautiful, all life was more precious, and emotions were deeper. Before my symptoms, I never cried, and I mean never, (other than as a small child, of course). After the advent of my symptoms, I found that the simplest things could bring a tear to my eye, and to this day, that has not changed. I can read a post on this board about someone having a really bad day, and suddenly I'm all misty-eyed. Or, at the other extreme, I can read a post about someone finally achieving remission, after a long, hard struggle, and tears of joy will creep down my cheeks. That never could have happened before.
This disease has changed me immensely, in almost every aspect of my life. As mini so artfully pointed out, I used to feel obligated to work all the time, and for many, many years, I worked at least six and a half days every week, all year long, never taking a vacation that lasted more than four or five days, and I was always "putting off" things that I didn't seem to have time for, that I shouldn't have been putting off. I view work in a different light, now, but, of course, I see everything in a different light, now.
Prior to the onset of my symptoms, I very rarely ever went to a doctor, but I had all the faith in the world in them, and while I knew they weren't miracle workers, I felt secure that if I ever did need them, they were there, and would do anything in their power to help me. Now, of course, that faith is shattered, and I "see" most doctors as "technicians", intent on dishing out a "one-size=fits-all" treatment program, while basing virtually every decision on a standard code of ethics, dictated by the insurance companies, and the liability lawyers. <sigh>
We've talked about this before, but I still maintain that as miserable as the disease was, before I found my solution, I still feel very fortunate that I have it, because if I hadn't developed the disease, I never would have found this wonderful group of people, from whom I have learned so much, and with whom I feel such a strong bond.
That seems odd, doesn't it, to be so grateful to have such a miserable disease? I think that aspect in itself speaks volumes for the incredible effect that this disease has on people. But of course, I don't credit the disease itself for these "benefits". The disease merely provides the motivation for change. I think that it is the people who have this disease, who are solely responsible for the wondrous changes that the disease brings.
We are like pioneers in the days of the old West, suddenly thrust into a hostile environment, and we have to drastically alter our lifestyles in order to "survive". We are surrounded by doctors who, for the most part, are unable to do much more for us than the ill-equipped doctors found on the western frontier, 150 years ago. Once we live through it, we will never be the same.
Lest newbies think that we are all nuts, talking about the disease this way, I'd like to point out that these changes in our personalities don't take place until we are able to get our lives back. When you achieve remission, yourself, you will probably feel the same way that we do. Until then, it's just a disgusting, miserable disease.
At least that's the way I see it. Thanks for the opportunity to ramble on about this "weird" side-effect of dealing with the disease.
Love,
Tex
Mini!
What a great idea for a post!
I have learned the importance of taking charge of one's own health. Also I've been reminded that there are so many more things we don't know than do know in medicine. Most important of all, I understand the value of knowledge and support from those who are in the same boat. Related to this is the PRIVILEGE of finding and joining an on-line family. The closeness and love I feel for my friends here continue to amaze me - and I often wonder where I (and all of us) would be right now if we did not have the internet and each other. Chronically sick and depressed certainly. Somday someone should write a book about this website and its impact........."PRICELESS" to quote the popular ad!
Thanks for asking.
Love,
Polly
What a great idea for a post!
I have learned the importance of taking charge of one's own health. Also I've been reminded that there are so many more things we don't know than do know in medicine. Most important of all, I understand the value of knowledge and support from those who are in the same boat. Related to this is the PRIVILEGE of finding and joining an on-line family. The closeness and love I feel for my friends here continue to amaze me - and I often wonder where I (and all of us) would be right now if we did not have the internet and each other. Chronically sick and depressed certainly. Somday someone should write a book about this website and its impact........."PRICELESS" to quote the popular ad!
Thanks for asking.
Love,
Polly
Blessed are they who can laugh at themselves, for they shall never cease to be amused.
I think all too often doctors just place importance on the physical signs of illness, 'a pill to take away the physical pain', however it seems so few professional people seem to give status to the psychological aspects of the illness! Last November I looked in the mirror and cried it was so hard to believe I was actually seeing 'me' after 3 years this condition left me feeling like no one would ever find out what the problem was and I should be looking at planning a funeral!!
By January, although the 'D' was under control I feared leaving the house and being in social places where I could be seen. If I went into a store I noticed the shop assistance looking at me with pity wondering what an earth was wrong with me. It was not pity that I wanted, did not want hugs, a shoulder to cry on, what I wanted was the 'OLD ME' back. Each morning as I looked in the bathroom mirror I cried, so much grief, all I could think was somewhere along life I lost myself. I understand so very much why we should feel self pity.
Yesterday I signed up to a private medical plan (although they will not cover me for the CC until I have not been under hospital care for at least 12 months) from this point forward in life I feel the need to take control of my health. I have elected to go totally private and not be treated in a NHS hospital as a private patient because my personal experience has taught me sadly, it seems good health is for sale!!
LOL......LOL a little point to end this post, it was in one of our national newspapers yesterday that asylum seekers are leaving the UK each day in hundreds, when asked why apart from the rain the main point they have said is the NHS does not provide good health care! WOW.....it really says it all
By January, although the 'D' was under control I feared leaving the house and being in social places where I could be seen. If I went into a store I noticed the shop assistance looking at me with pity wondering what an earth was wrong with me. It was not pity that I wanted, did not want hugs, a shoulder to cry on, what I wanted was the 'OLD ME' back. Each morning as I looked in the bathroom mirror I cried, so much grief, all I could think was somewhere along life I lost myself. I understand so very much why we should feel self pity.
Yesterday I signed up to a private medical plan (although they will not cover me for the CC until I have not been under hospital care for at least 12 months) from this point forward in life I feel the need to take control of my health. I have elected to go totally private and not be treated in a NHS hospital as a private patient because my personal experience has taught me sadly, it seems good health is for sale!!
LOL......LOL a little point to end this post, it was in one of our national newspapers yesterday that asylum seekers are leaving the UK each day in hundreds, when asked why apart from the rain the main point they have said is the NHS does not provide good health care! WOW.....it really says it all
Mini,
That's a very moving post. I could feel your pain as I read your lines about looking in the mirror each morning, because I can remember doing virtually the same thing. While I didn't cry, I could hardly believe how "bad" I looked, and how much I had aged, since my symptoms began. I think I aged more in a few months, than I had in the previous 20 years, or more.
I believe you're right - when we look in the mirror, and see how "bad" we look, and we think that our situation is hopeless, and this goes on day after day, week after week, etc., it really gnaws on us. If MC doesn't cause us to feel depressed, nothing will. LOL.
Good for you, for taking control of your health. If that newspaper article is accurate, it sounds like it's definitely time to bail out of the NHS.
Tex
That's a very moving post. I could feel your pain as I read your lines about looking in the mirror each morning, because I can remember doing virtually the same thing. While I didn't cry, I could hardly believe how "bad" I looked, and how much I had aged, since my symptoms began. I think I aged more in a few months, than I had in the previous 20 years, or more.
I believe you're right - when we look in the mirror, and see how "bad" we look, and we think that our situation is hopeless, and this goes on day after day, week after week, etc., it really gnaws on us. If MC doesn't cause us to feel depressed, nothing will. LOL.
Good for you, for taking control of your health. If that newspaper article is accurate, it sounds like it's definitely time to bail out of the NHS.
Tex
It is suspected that some of the hardest material known to science can be found in the skulls of GI specialists who insist that diet has nothing to do with the treatment of microscopic colitis.
Well for one thing, I'm on the computer every night, reading all of your posts looking for solutions and inspiration! LOL
When I was first diagnosed, I had the attitude that this would be a temporary setback and I would be back to normal in short order. All I had to do was follow steps a, b, and c. Now I realize that MC is a lifelong condition and my eating habits will never be back to "normal," though life otherwise is pretty normal.
MC has impacted my social life in that I now avoid any gatherings that are centered around food. That includes church functions, work gatherings, family get-togethers, dinner out with friends, and most painfully, eating out with my DH, something we both enjoyed.
Grocery shopping has certainly changed. After almost a year, I'm finally able to go shopping without getting teary-eyed (and I'm not one to get emotional). I used to love going shopping and would spend hours checking all the grocery ads. My list is extremely short now and my DH and I basically shop separately for our food.
I'm retiring because I feel that I need to spend more time taking care of my DH's and my health. Convenience foods are a thing of the past and cooking from scratch takes time. I also want to establish a regular exercise program, garden, and can/freeze the produce as I did years ago.
My DH and I used to take annual vacations. We planned on doing extensive travel during retirement. It doesn't look like that will be possible anymore given all my food restrictions. This past weekend, my "food" luggage was inspected by airport security, as usual, and they made me check it because I had jars of broth and mayonaisse. Checking a second bag now costs an extra $25, so add that to the cost of travel.
Although I sound pretty discouraged, I've tried to stay positive throughout this ordeal. When people are amazed at my dietary restrictions, I tell them that I try to focus on what I can eat, not on what I can't. I'm grateful that I'm mostly able to live a normal life. I'm also grateful for the support from this group. No one else understands what we are going through. As Tex mentioned, most doctors are clueless when it comes to this disease and they refuse to listen to us when we try to tell them it is triggered by the foods we eat.
When I was first diagnosed, I had the attitude that this would be a temporary setback and I would be back to normal in short order. All I had to do was follow steps a, b, and c. Now I realize that MC is a lifelong condition and my eating habits will never be back to "normal," though life otherwise is pretty normal.
MC has impacted my social life in that I now avoid any gatherings that are centered around food. That includes church functions, work gatherings, family get-togethers, dinner out with friends, and most painfully, eating out with my DH, something we both enjoyed.
Grocery shopping has certainly changed. After almost a year, I'm finally able to go shopping without getting teary-eyed (and I'm not one to get emotional). I used to love going shopping and would spend hours checking all the grocery ads. My list is extremely short now and my DH and I basically shop separately for our food.
I'm retiring because I feel that I need to spend more time taking care of my DH's and my health. Convenience foods are a thing of the past and cooking from scratch takes time. I also want to establish a regular exercise program, garden, and can/freeze the produce as I did years ago.
My DH and I used to take annual vacations. We planned on doing extensive travel during retirement. It doesn't look like that will be possible anymore given all my food restrictions. This past weekend, my "food" luggage was inspected by airport security, as usual, and they made me check it because I had jars of broth and mayonaisse. Checking a second bag now costs an extra $25, so add that to the cost of travel.
Although I sound pretty discouraged, I've tried to stay positive throughout this ordeal. When people are amazed at my dietary restrictions, I tell them that I try to focus on what I can eat, not on what I can't. I'm grateful that I'm mostly able to live a normal life. I'm also grateful for the support from this group. No one else understands what we are going through. As Tex mentioned, most doctors are clueless when it comes to this disease and they refuse to listen to us when we try to tell them it is triggered by the foods we eat.
You never know what you can do until you have to do it.
What I have learned is that I am responsible. Responsible for my well being, responsible for my health, responsible for my diet, responsible for my problems, responsible for my misery.
At the same time nobody can prevent me from dropping it. Nobody can prevent me from dropping my misery and transforming my misery into bliss. No situation imprisons ME , my soul remains free.
Of course I am in a very limited situation as far as diet but I have found that even in that limited situation I can sing a song. It makes me laugh to think of the times I cried tears of helplessness only to learn that even with chains on my feet I could dance, that even the chains play a melody.
If I alone am responsible what is left.
To be grateful to everyone and everything.
Because by doing so everybody and everything is creating a space for ME to be transformed —finding foods that work, finding foods that don’t work, vitamins and autoimmune problems, grain or no grain exploring all the dead end canyons and being lead astray by all the supplement gremlins and then after bucketing out the pond with a teacup discovering things that work . I can only be grateful for all the favorable circumstances and unfavorable circumstances to those who have hindered, to those that have helped to those who have been indifferent - all together they created the context in which I could change, to be transformed.
Circumstances have become a tool rather than a misery.
I am still amazed at the lesson. What could be better than that.
Love
Matthew
At the same time nobody can prevent me from dropping it. Nobody can prevent me from dropping my misery and transforming my misery into bliss. No situation imprisons ME , my soul remains free.
Of course I am in a very limited situation as far as diet but I have found that even in that limited situation I can sing a song. It makes me laugh to think of the times I cried tears of helplessness only to learn that even with chains on my feet I could dance, that even the chains play a melody.
If I alone am responsible what is left.
To be grateful to everyone and everything.
Because by doing so everybody and everything is creating a space for ME to be transformed —finding foods that work, finding foods that don’t work, vitamins and autoimmune problems, grain or no grain exploring all the dead end canyons and being lead astray by all the supplement gremlins and then after bucketing out the pond with a teacup discovering things that work . I can only be grateful for all the favorable circumstances and unfavorable circumstances to those who have hindered, to those that have helped to those who have been indifferent - all together they created the context in which I could change, to be transformed.
Circumstances have become a tool rather than a misery.
I am still amazed at the lesson. What could be better than that.
Love
Matthew
I am still pondering my reply to this wonderful question you put forth, Mini.
However, my DH said to tell everyone that he is so very thankful for this internet family that is available to me with such a steady stream of ideas, information, encouragement, and most important of all: hope. He realizes this is a journey for me/us...it is not temporary. There is no aha! moment when all becomes clear but it is a journey and we all have different journeys. Right now....we are at the beginning of our journey with MC and that journey is made easier with the help of all of you. He has learned that there are some wonderful human beings out there who care for others who are suffering; and they care enough to faithfully answer the many questions that come pouring in. To go beyond the questions to relationships....to giving hope and courage....to building bridges to healing.
He finally gets it that this is not temporary; it is not going away. He is grieving along with me.
However, my DH said to tell everyone that he is so very thankful for this internet family that is available to me with such a steady stream of ideas, information, encouragement, and most important of all: hope. He realizes this is a journey for me/us...it is not temporary. There is no aha! moment when all becomes clear but it is a journey and we all have different journeys. Right now....we are at the beginning of our journey with MC and that journey is made easier with the help of all of you. He has learned that there are some wonderful human beings out there who care for others who are suffering; and they care enough to faithfully answer the many questions that come pouring in. To go beyond the questions to relationships....to giving hope and courage....to building bridges to healing.
He finally gets it that this is not temporary; it is not going away. He is grieving along with me.
"It is very difficult to get a man to understand something, when his salary depends upon his not understanding it. "
Upton Sinclair
Upton Sinclair
Wow it has been so interesting reading your replies! It has certainly been a journey along with a steep learning curve not only about the condition but, also how to deal with the changes in lifestyle that has been needed to cope with the medical problems this condition presents. Although I can discuss the issues on this forum I still find it very hard to talk about what has happened with other people, at times I feel the tears building up. Thank you for sharing those stories 