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AuthorPosts
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JulesJuly 28, 2012 at 1:44 pmPost count: 85
I have come to the conclusion with all of this medical stuff we have to suffer through a positive attitude really does make a difference.
We are so consumed with our disease that we forget to take time and smell the rose, have a cup of tea and just be thankful for what we do have.
I have found that this positive attitude gives me control over my situation. And I ha e been through the wringer in the past 2 years.
TED is disfiguring but can be hidden behind glasses. Even my family could not see my issues until I removed my glasses, the rims hid my swelling. I felt like Clark Kent with them on.
I have kept a lot of my issues hidden because I did not want every conversation to be about my health. I wanted to enjoy my newly born great nephews and nieces. I wanted to experance life with out the astigma of my disease.
Yes it is hard to always keep a positive attitude, that is when I grab the chocolate (or take your choice of weakness. Um comfort here).
Doctors some times do not take our concerns as seriously as we do, because we have to live it every second of every day, which is frustrating. So choose to enjoy when you can have a positive attitude when you are not dealing with those frustrating doctors visits.
Just know that you are still in there somewhere trying to get better, don’t let this disease get to us. Take controll of YOU, and enjoy everyminute that you can.
Just my opinion.
karebearJuly 28, 2012 at 3:50 pmPost count: 5Great attitude!
While I am newly diagnosed with graves, I am not new to serious health problems. I swear being positive helps me feel better. I am thankful to be alive.
KarenadenureJuly 28, 2012 at 7:01 pmPost count: 491I think you’re right. It is hard though. I know things could be WAY worse, but it’s hard when you’ve been relatively healthy your whole life and then whammo! It’s frustrating & discouraging when you’ve basically just lived your life not even thinking one bit about your body, mind, physical health just because it was always there. I never took it for granted exactly, but oh how I miss sleeping well, having no headaches, and being able to just do what I have to/ want to do. Ah well, I shouldn’t be a complainer. I know I’ve come a long way since being diagnosed and am on the right path, but I’m hoping to be able to sleep well again someday and wake up and not have a headache. I know so many of you have had a much harder time and longer journey with Graves than I have, and I am so impressed by everyone’s perseverance and positive attitude. My mother in law has Brittle’s (?) diabetes; she tests her blood 6 times a day at least and has huge swings in blood sugar levels- she’s up 4 times a night bc her levels go so low- very dangerously low. Yet, she deals with this day and night and has the most positive attitude I’ve ever seen. I’m trying to learn. You are right, Jules. Positive attitude is important.
Alexis
PolishTymJuly 28, 2012 at 7:14 pmPost count: 67I really like your post about a positive attitude. It is so hard to do, isn’t it? Fortunately for me, my wife provided me with the positive attitude while I was being overly realistic to negative possibilities.
dgregoryJuly 28, 2012 at 9:07 pmPost count: 6Jules, you are so right about a positive attitude. Some times it requires all that is within to pull it out. However, if you internalize how you feel or what all is wrong life would be terrible. Finding things you can be thankful for like you do, can do wonders. For me, I’m thankful for so many things. I don’t take health or life for granted since graves disease. Both health and life are blessings and I’m going to thank the Lord for them for the rest of my life.
KimberlyOnline FacilitatorJuly 28, 2012 at 9:58 pmPost count: 4294@Jules – If this was Facebook, I would give your post a “Like”. Great insight!
JulesJuly 28, 2012 at 11:44 pmPost count: 85Glad you enjoyed my affirmation, and yes we need a LIKE Button om here,:p
I sure hope it helps others to remember that there is a real person underneath this Dx of graves disease, that needs this more than anything else when it feels like the world is crumbling around them.
Our mind is a very powerful tool in out medicine chest. Instead of taking out a pill from the medicen chest for this ache or pain, I will be taking out my attitude and verifying that it is properly placed front and center. Of course this is easier on me today. When I at my worst of ft4 at over 700 this was not as simple to do.
Now that i have had more trials and tribulations with the csf leak, the craniotomy and blind in my right eye, I realized that when I made the effort I was never disappointed with the results of positivity.
Have a very enjoyable Sunday.
beach45July 29, 2012 at 6:37 amPost count: 178Jules, thank you for posting this.
Our minds are powerful tools and can help us with healing.
If we think negative all the time; negative outcomes will result.
A therapist I know who deals with patients with autoimmune disease, told me that people with Graves do tend to obsess over their disease.
I too have been up and down for 26 months with Graves and I just at times feel like I had enough. Then I start to look at the positives in my life and it is helpful for me to write down my blessings and read them every single day.
It is not easy especially how we can change with this disease outwardly, like with TED; I too wear my sunglasses all the time (being called movie star) and not just for my TED yet for keeping cataracts from forming. Plus my parents both had them and severe macular degenearation which is hereditary.
I like what you say is to experience life; yes life is for the living. If every waking moment is used up on obsessing over my disease or poor me, I will get so caught up in it I may never heal. Yet it is human nature to complain and I find in our society we want instant gratification and with Graves disease in a lot of cases, we need time and patient. This is what I believe is what has been taught to me through all this. Also that the exterior is not what matters as I was in the best of shape and looked very good up to 51 years of age before I got this disease and I have realized what really matters in life is what is inside!
It is difficult to keep a positive attitude going yet for me I have to keep doing it as practice makes perfect. Even without Graves; we all have moods and up and down swings as that is just life and it is not always because of Graves as I have to remember do not blame every ache, pain or discomfort or new disease I may develop on Graves disease!
I have been to so many doctors and most of them are not very sympathetic yet they are not in the business for that as they already have so many patients. Some are and that is a pleasure if I can work with such types.
I was told do not let what the doctors say rule my mood. Plus the doctor and patient relationship should be working together and not one dictating to the other.
Yes I agree that is well said enjoy every minute that you can; I had a husband drop dead at 56 years of age eight years ago; my life changed forever and it is good now yet different and the dreams I had of getting old with him were destroyed in one instant. Yet that is life and Graves is life too and I am learning in the recent months to accept it and looking at life with the glass half full instead of half empty.
Thanks again for sharing this!
Beach
snelsenJuly 29, 2012 at 9:39 amPost count: 1909Hi, this is Shirley, the devil’s advocate, addressing the subject of having a positive attitude.
I do not disagree with any of the posts in this thread. They are lovely. I do think it is helpful to ourselves and others to try to continue to “soldier on” when faced with physical and mental adversity and challenges. Graves’ and TED, along with so many other health issues, certainly qualify as situations which are very difficult for us, for others who know us and love us, and for our work lives.
However, there is still room, and it is “OK” to feel discouraged, depressed, overwhelmed. Tales of doctors and other health providers who are uncaring, unfeeling and sometimes incompetent are based on validity and truth. There really are people who are doctors who are not competent. This situation exists in every field you can name. And sometimes we are the very unfortunate products of their incompetency. It is really difficult to feel good about this, when your life has been changed negatively forever. Or even for a long period of time. I simply want to say this, to basically “give permission” to people everywhere, and possibly on this forum, that having a positive attitude is sometimes impossible to do in certain situations.
I am not implying in any way, that a positive attitude is not a good idea. It is a good idea. Having negativity rule our lives limits us.
But I am emphasizing that it is really true that bad stuff can happen, and there are times, as Alexis alluded to, there are times in our lives when it is very difficult to feel positive about sleep deprivation, headaches, plus multiple other infirmities. There are physiological and psychological limits that limit having a positive attitude.
In my own experience, I have had a snoot full of an overkill of positive attitudes related to real physical health problems. Both as a health care provider for over 50 years, and as a consumer of health care.
In many situations, especially in some cancer environments, having a positive attitude is elevated to a message that a person “got” cancer related to NOT having a positive attitude. Or, someone with a stage 4 glioblastoma, “should” and “ought” and will, feel better, if they have a positive attitude.I realize that there is a lot of room for a firestorm of criticism of my post.
To reiterate my initial thoughts, I firmly support that having a positive attitude is a good thing, and very helpful in hourly and daily living.
I simply wanted to be sure that people who feel discouraged, who are downright depressed about their situation, do not receive the message that they are “bad” if they have not achieved having a positive attitude.
Sometimes, when your world and your life is crumbling around you, it is not possible, and that is OK too. You have not failed.
Shirleymelanieg3July 29, 2012 at 10:48 amPost count: 1I think staying positive is the key to the whole shabang, honestly it is a constant battle within me to do so though. Sometimes I just want to not do the housework,cook or any of that stuff lol, but I muster up the strength to go forwards with not just that but other things in life. I’m glad I found this forum it will help to be able to relate to other people with Graves, rather than try to explain it to people and they kind of understand but don’t.
adenureJuly 29, 2012 at 3:49 pmPost count: 491Hi Shirley,
I agree with you that it IS okay to feel discouraged and down over being sick or certain circumstances; I think it’s normal. I’ve recognized though that when I let those feelings take over (even temporarily), they can lead to despair and feeling much worse- physically and mentally. It’s not easy to pull myself out of that sometimes, but my faith, my husband, and a funny show/ movie, a distraction of some sort can help a lot. Playing with my children helps a lot until I start to feel cruddy, and then I get discouraged about not being able to just go on and on playing with them like I used to. But, the time that I am able to get out of my own head/ worries about Graves, I do feel better, even if it’s only bc I’m distracted. It’s momentary, but it helps.
Until I’m “normal”, it’ll be in the back of my head no doubt, but I have to try to stay positive. I read a quote that said something like “Life isn’t about waiting for the storm to pass, but about learning to dance in in the rain.” I’ve really tried to hold onto that one. Because I think, any one of us could suffer a terrible accident/ tragedy or even death at any time. All we have is now, and for my own sake and the sake of my family, I have to make “now” be as good as it can be. I’m guilty of letting Graves take over a lot of my time and mental energy since I was diagnosed, but I’m trying to not let it get to me too much. Of course, when I was hyper, that was near impossible, but now that I’m on somewhat of a path to being better, I have to try to live again.
One thing I DO think is important is that when someone is suffering a lot and dealing with difficult illnesses or problems, telling them not to feel down or discouraged is wrong. I had a family member (with the motive of trying to help me) do exactly that, and it really upset me. I felt even more guilty than I already did about feeling down and it just made me really sad. Yes, we should try our best to stay positive and find the good moments, search out funny moments that make us smile– even if it is just a distraction like a funny movie. Going through the normal spectrum of feelings is important though.
Alexis
snelsenJuly 29, 2012 at 4:28 pmPost count: 1909YEP. I agree all the way with your post. When you mentioned the experience you had with the relative, that is the major point of my post. When a person is plainly stating that they are hurting and discouraged, it really is not helpful if what they said and felt is pretty much not regarded with respect, and the substitute response is to tell them not to feel discouraged. That can be very hurtful. Then we are in the position of feeling sad, guilty and disappointing people. Very big burden to add to whatever the difficult situation that we might be experiencing. It’s really hard to have to leave a group game because my eyes are so painful. I think I have done a pretty darn good job at minimizing the stresses that I have, and trying not to impact others. But when I was at my most hyperthyroid, with a new baby, and every single negative thing that Graves’ can dish out, I did NOT have a positive attitude. My life was in a shambles, I had to struggle to be a rational wife, co worker, parent and more. I was SICK. That was a particularly bad time to be told to have a positive when I was such a sick 24 year. And, be thought of as crazy, which I am sure that is how others regarded me, and I regarded myself the same way. Because I WASN’T MYSELF. I was a completely different, sick, hyper, argumentative, thin, sleep deprived person.
I want to continue to support anyone reading the forum that there are times when even finding the coping mechanisms to FIND or act on things that might help us have a positive attitude, are simply not possible at certain times in our illness. But it sure is helpful to know that others UNDERSTAND what this is all about, and have experienced it, and there IS hope to feeling better and regaining our old selves with treatment and support.
OK Enough. I have a really positive attitude about being positive! When I tape my eyes closed at night, which is a chore, I can feel happy that I cannot see a darn thing, for I might see something unpleasant. But I sure would like to be able to see the way to the bathroom in the middle of the night!
So every night I don’t fall and break a bone, I can be positive that I did not fall! Sick humor. But it works.
Shirley
I think a much more helpful and supportive response, at least for me, is to acknowledge that what I am experiencing IS difficult. I felt very reassured and supported when I get that kind of a response. When people tell me that they can’t IMAGINE having to tape their eyes closed every night, it helps me say that I could not imagine such a situation either-ever-until it happened to me.PolishTymJuly 29, 2012 at 8:19 pmPost count: 67snelson, I really appreciate your post. Sometimes I need a good cry to clear out those bad feelings. Allowing myself to be really bummed and cry it out can be cathartic.
RobbofordJuly 29, 2012 at 11:01 pmPost count: 102Hi All,
Just goes to show what a wonderful, insightful and caring bunch we have on this Forum. I would just like to chime in – I am almost the most positive person I know – even in my darkest, deepest Graves quagmire, people ask me how I am and my usual response is “Better than most, 2 arms, 2 legs and breathing on my own”, but sometimes I have needed the reassurance from the wonderful members of this Forum to bring me back to the real world. I have even found I have been second guessing myself as to whether I am actually feeling a sympton or maybe am I imagining it. Whilst I am a true believer in the power of positive thinking, I also believe that some of the more challenging days or moments can test even the most positive of us. I don’t push my Graves onto people but if people ask questions I try and answer them. Most people I have come across are totally uninformed about Thyroid issues (as I was) and it has become somewhat of a crusade to spread the word and if possible, when I am more healthy, I will be out there shouting from the highest mountain and hopefully contributing towards promoting a better understanding and awareness of Thyroid and/or auto-immune disorders. So thank you to all you fellow Graves Warriors and especially Kimberley, Bobbi and other Moderators, your efforts and prayers are greatfully acknowledged. Soldier on all!
Cheers, hugs and kisses
DebbieJulesJuly 30, 2012 at 1:34 amPost count: 85I did not mean to alienate anyone with my statements. I just find that since my Dx in 2010 I have be come compulsive to a fault thinking that doom is around the corner, with every ache and or pain. It was never this way before graves.
Being 2 months out from my recent craniotomy has amplified this compulsion. Everything that aches makes me concerned that I will have to go thought this surgery again.
I understand about people telling you, buck it up and deal with it. THAT was not my intention of this post.
What I have found, with keeping a positive attitude, is with every ache pain or concern, I don’t jump to the worse conclusion about it, but pause change my attitude and look at it from a different altitude so to speak. I’m tired of jumping into the deep end when it is just my imagination getting the better of me.
During my deepest darkest day of graves, when I thought I was having a heart attack every day for 4 months. I wish I had a better attitude, maybe I would have not worried myself to almost death! I felt like any minute I would not live to see the next, during those days. A little bit of positive thought might have helped me.
Going through this surgery has brought back a lot of those old feelings, so I thought about it and decided, this disease and my current situation is not going to define me.
It is too easy to try and grab another pill and pray that I just did the right thing about taking that pill for the anxiety, pain ( ____ add what ever you want in the blank). I feel like I have become a hypercondaic. The power of positive thought has changed my outlook as to the situation, so I can think clearly, is this a true concern or just my over active hyper reaction to a situation.
Sorry if I offended anyone who is currently searching for help in their deepest darkest moments. We have all been there.
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