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FMS ForumsGeneral & SupportWhy B Positive When Have Every Right 2B Negative?
07/03/2012 06:05 AM
Clarita
Clarita
 
Posts: 10795
VIP Member

Why Should I Be Positive When I Have Every Right To Be Negative?

~ Positive Pear

I’ve considered writing about this topic in many different ways over the past few months. I’ve started a few drafts, yet I struggled a bit with the most appropriate way to approach this subject.

I desire to help others understand the importance of having a positive mental attitude while fighting chronic health conditions, without inadvertently trivializing anyone’s emotional or physical pain. I’ve also sat back and observed and I can’t help but notice the amount of negativity that comes from people who are physically suffering. When I’ve chimed in with my messages of hope and sunshine, I’ve been asked if I even know what its like to live with chronic pain or chronic illness.

I initially found this surprising, then realized by the many negative comments and private conversations, that many feel they must appear downtrodden to be taken seriously. After all, living with chronic illness can often mean their conditions are also invisible to the naked eye and because these conditions are also difficult to diagnose, they’ve had much to endure. This showed me the great need for positivity within this group who are living with chronic invisible illness and I set out to share my positive message.

By the way, the answer to that question is yes, I do know what its like to live with chronic illness, as I’ve lived with two chronic conditions since childhood and another that I developed at some point along the way. I have Ankylosing Spondylitis, Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS).

Like most of my fellow sufferers I look fine, and because of my positive and very hopeful outlook on life, on the surface I might also act fine.

I’m an eternal optimist and in spite of my difficulties and physical challenges, I’m the type of person who is most likely to see the glass half full, rather than half empty.

Why is this? When like most of you I’ve lived with symptoms of chronic invisible illness for many years, going undiagnosed or being misdiagnosed. I’ve also had my symptoms trivialized or blatantly disregarded by numerous doctors. I’ve had “friends” incapable of understanding why I would have bouts of spontaneous swelling or why I was physically debilitated for 8 months, using a cane & crutches without a single diagnosis. As a teen my mother would tell me that I was being lazy and would force me out of bed at 2am to wash dishes that I couldn’t get to because of fatigue, during what I know now to be AS & CFIDS flares. My mom would also suggest that I was far too young to be tired all of the time and that I needed to snap myself out of it. As my conditions progressed, I can recall my husband asking me how long I’d plan to be sick when it came to cooking and cleaning the house, as he sat and watched football. I’m sure that if I asked each of you to list below your many encounters with insensitive people, doctors, friends, strangers, or family members, that the comment section would be full. However, I know the effects of dwelling on the negative and as I recall these situations, I can still tap into the awful feelings that I’d experienced at those precise moments.

I also know that as easily as I can focus on the negative, I can also think of many positive situations in my life to draw upon. I can name 20 very supportive friends, at least one doctor who finally listened to me, leading to a correct diagnosis. I can think of a phone conversation with my mom, as I explained the spontaneous swelling that I’d experienced as a child, was the result of AS and the debilitating fatigue I’d also lived with since childhood, was due to Chronic Fatigue and Immune Dysfunction Syndrome. My husband has since taken over the cooking and cleaning, as I now sit and watch the occasional football game. My friends and family are now my biggest supporters, and I do not harbor resentment toward them because they did not understand chronic invisible Illness. I didn’t even understand it myself and I’d lived with (3) of these conditions for most of my life. I’ve also found great healing in forgiveness and not so much of others, but of myself. Letting go of much of the guilt that comes from being chronically ill. Allowing myself to mourn the loss of the former me and embracing all of who I am today.

Through knowledge I empower myself. I also posses an inner strength and a sense of joy that absolutely no one can steal from me. As my own health advocate I walk into a doctor’s office and I can say with great confidence that I’m looking for someone to partner with me in my health care. I want a doctor who is more knowledgeable about my conditions than I am and sensitive to my needs as a patient and when they are neither, I fire them. That’s right fire them! I recently “fired” my primary care physician after 8 years and I used the term “fired” because Its empowering. She had not been at all helpful in identifying any of the (3) chronic conditions that I have, because she continually trivialized or ignored my symptoms. I even had to demand appointments with specialist, because she would never refer me on her own. On one occasion dragging myself to an Infectious Disease Specialist without her knowledge, simply to prove that I did not have Lyme Disease. However, I had to sever ties, when she blatantly lied about finding a lump in my breast preventing me from receiving the type of mammogram that I needed. I felt this was an attempt on her part to hide her lack of cooperation with me on my many mammogram requests in the past. Now faced with a rather large lump she could have been exposed or worse liable. It was obvious to me that her reputation was of far more importance to her than my health, so, I “fired” her! I asked for a meeting with her boss, which I received, where he apologized on behalf of his department and proceeded to order the mammogram and ultrasound that I needed.

Even from this situation I can find a positive. I’ve gained even more confidence to stand up for myself as a patient. I can share my experiences with others, so that they too can the find their inner strength.

I am not a victim of chronic illness and neither are you. As a result, I do not allow my auto-immune disease or my two other invisible illnesses to take control of my thinking or to define who I am.

I choose to navigate through life with a positive mental attitude and you can too. I also find great strength in controlling things that are within my ability to control. I exercise daily, I eat healthy, healing foods, I take natural herbs and supplements to give me energy and to help with managing my symptoms. Knowing that stress is a symptom trigger, I keep my stress levels low by resting when needed, meditating, practicing yoga, making sure that I have some “me” time and by being grateful and truly appreciative for all that is right in my life.

Being positive does not come at the risk of ignoring the emotional, mental or physical pain, the bad moments in life or the negative situations that we encounter. Life is full of those. Feel free to face these head on, cope with them, feel the anger and the frustration, stand up for yourself when needed. What’s most important about the negative things that we encounter in our lives, is not the fact that we encounter them, it is how we recover from them and its easiest when we do not allow these moments to consume us, instead allowing ourselves to learn, grow and move on.

Without question each day brings its own challenges, especially when living with chronic pain & chronic invisible illness, but we do have a choice when it comes to being negative ~vs~ being positive. Deciding to have a positive mental attitude not only empowers us, but it gives us the opportunity to see the wonderful things that each day brings.

---------------------------------

The above lady speaks my mind so eloquently/is on my wavelength/ has such a similar mindset to me as well as many health conditions in common with me- is an eternal optimist even though has a myriad of health conditions- that simply had to share this with You all!!

Hope you find it helpful.

Super soothing gentle hugs to You all, love Clarita

Link to above article :-

http://thepositivepear.com/category/the-positive-pear- articles/

__________________________________________________

Originally shared the above article on Chronic Pain SG

Hope this resonates with many of you guys here!

Giant gentle hugs, love Clarita

Silly

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07/03/2012 11:58 AM  Top
Adewyn
Adewyn
 
Posts: 4969
Group Leader

I agree... thats why i choose positivity everyday.. laugh smile play dance enjoy life... i only have this one life and i will not let this stupid disease ruin everyday...*it can ruin a day here and here* but not everyday...nice article Clarita! thanks.. it is what i try to instill here everyday.. Smile

07/03/2012 09:42 PM  Top
Chocovan
 
Posts: 255
Member

Well Clarita you hit the nail on its head correctly and Im certain you are going to be a great friend with Adewyn who is one of many who always have positive posts for us all we have to do is look at her personal accomplishments to see that with being positive it brings great rewards so please keep on sending these positive vibes to this group I truly believe that we have to be positive with all that we have to endure physically and mentally, so thank you for the beautiful post we all need a bite of reassurance from time to time. Have a good night Chocovan

07/04/2012 12:44 AM  Top
Clarita
Clarita
 
Posts: 10795
VIP Member

Pianogirl, can assure you am real even though am an optimist with moderate severe to severe fibromyalgia! Am totally here for others to when they need to vent or be validated or have a shoulder to lean on. Am not a happy shiny person as in REM song! Do try to encourage others to be more positive which methinks is something we all need to hear as long as it is done in the right way at the right time for the right motive. Yes, agree that we all need to grieve- did this too. In first year of diagnosis was not depressed yet did struggle to come to terms with all the losses then had a real eureka moment when read the late Christopher Reeve's book, 'Still Me' as well as saw Sarah Ban Breathnach on an Oprah show!!

Recently read a book which think could help many people here , called ' Things Get Better' by acid burns attack survivor Katie Piper.

All support groups need a balance - if there is not enough posiitive posts(balanced positive posts written by those whom are much challenged themselves yet find a way to survive/thrive) then the group is not particuarly on an even keel - so this is what try to do with my posts. Try to encourage /enable/give hope to as many individuals as possible.

Cheerleaders are good as long as they are sensitive Wink! When lost my Nana had a friend be very cold to me- hurt big time, yet, most people around me were really supportive. Lost my Nana just four days after my hubby lost his Dad so it was a really tough time for us both yet we made it through as we had much love for each other as well as much love around us.

There is much love within this group plus there is much love within this batgirl's heart, both are absolutely equally true!!

Am always there for my fellow fibromites too not just on the group yet behind the scenes via pm or via chat- am much as possibly can with my own challenges plus am an avid Wimbledon fan so not around quite as much at the moment as am watching tennis on th tv yet try my best to help others here whenever feel can to the best that can!!

Adewyn is SuperWoman, right? Am Batgirl Smile! Yes, we are good together Wink- thanks Chocovan!

Thanks Adewyn for your lovely words from your Super self!

Do not want to fix anyone here, for anyone who thinks this is batgirls aim- just want to enable others as much as possibly can as well as to help others see that whilst fibro is super challenging you do not need to let it define you or stop you from having a worthwhilel life with beautiful moments even with the myriad of challenges of fibro plus you can train your mind to be more of a positive thinker as well as live with with dynamism(proactive) as well as purpose. Life with fibro is not easy yet we can all do stuff that makes our lives easier/less of a challenges by being our own best friend every single day.

Anyone who does not like my posts can tell me via pm or just chose to not take any notice of them quite simply. Yet, know from comments as well as via pms that many people find my positive posts inspirational as well as encouraging hence post them.

Although various famous inspirational people sent me on my fibro survivor journey did not have one fellow fibromite or even a fibromite survivor inspire me to be like am today with my positive mindset- actually became my own life coach, hence the reason find it vital to try to help as many people as possible!! Finding fellow fibro survivors and their articles now validates who am as well as know will help maybe a young fibromite just starting their journey.

Hope that clarifies it for you all.

Sending super gentle hugs to every single fibromite here & know that care deeply for you all, including all those who are super challenged or have yet to fully grieve for their losses with fibro plus am a good listener as well if you need to vent, love Clarita Smile ( this batgirl is holding on tightly this morning as in high pains- raining much here in uk so making me rusty, yet happy to see the responses here Smile)


07/05/2012 08:17 PM  Top
mabri
mabri
 
Posts: 4710
Group Leader

Clarita,

I read the post, and it is so uplifting. I understand that you yourself have had the same things going on as the rest of us, and you are trying to spread cheer and happiness to the rest of us. This group can get down and out once in awhile, and we sometimes need to be shook up with some positive thoughts. You and Adewyn are definately the cheerleaders of the group!

I will admit, when I started reading it, it kinda upset me, cuz I got the wrong message. It appeared to be frosting covering which to my idea is denial. As I read on, I realized that that was not the message at all. What you are saying is that just because we have fibro, our lives are not over. We can still have dreams, and fulfill them. We are still as important as everyone else, and we can live life (maybe a little slower, and a little different) but still live it.

Thank you for sharing this with us, and if I ever need a pick me up, I will know where to come; either superwoman, or batgirl!! LOL I hope you will still come to the pity parties, as we need someone to wear the lampshade!! LOL HUGS

Please do not take anything I say as medical advice. I am not a doctor.

**Becky**

07/05/2012 08:32 PM  Top
melofirebee
melofirebee
 
Posts: 55
Member

Great post Clarita. I've had fibro for 6.5 years now and although there are many things I miss doing I am very thankful for the things I can still do like bead, read books, enjoy good movies (in the comfort of my own home Smile ), have great conversations, etc. We have to focus on the good, allow ourselves to feel the spectrum of emotions yet bounce back to being motivated and hopeful to keep moving forward.

It's not always easy, but it could be worse. I hope others are blessed by your post and see your intent. Smile


Previous discussions I participated in:
Check your computers
spinning head
Word Game

07/05/2012 11:49 PM  Top
Clarita
Clarita
 
Posts: 10795
VIP Member

Thanks greatly Mabri- you have given much clarity to what this post is truly about as well as to how easy it can be to misread something unless we truly focus on the actual words properly as well as not let our own emotions blind us to the exact meaning too- really appreciate your words of wisdom on the matter!! Many thanks for your encouragement, too!!

Melofirebee, huge thanks for your valable contributions, too!! Adore what you just said so will echo these words of yours too just now:- " We have to focus on the good,allow ourselves to feel the spectrum of emotions yet bounce back to being motivates and hopefully keep moving forward."

Totally agree- also, yes, it is not always easy- sometimes super super challenging- same for this batgirl, yet, we could be worse off as there is always someone worse off than us plus if it is like we are in hell / or just not in a good place we have to keep on going through the nightmare as nothing lasts for always plus there is good that awaits us on the horizon!!

Truly hope many will be blessed by my post(s) as well as see my true intent. Know will always have a few who misunderstand me- am used to this by now even though it still saddens me greatly /frustrates this batgirl as all ever try to do is to encourage and uplift fellow fibromites always- always my motivation is to help my fellow fibromite to be more dynamic/proactive- living with fibro is far from easy yet we can rise up above it like a phoenix from the ashes or chose to soar like a falcon or an eagle even though sore all over, for sure!!

Sending super gentle hugs to all fibromites here, love Clarita Smile

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