Fibro and Chronic Fatigue Support Group

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

http://thepositivepear.com/2012/01/23/why-should-i-be- positive-when-i-have-every-right-to-be-negative/

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Just loved this dynamic positive article that serendipitously stumbled upon- the author is on a very similar wavelength to myself, too, for sure!!

Hope others here will benefit from the above article hence the reason am sharing with you guys today.

Super gentle soothing hugs, love Clarita (batgirl with a dolphin smile)

Post edited by: Clarita, at: 04/15/2012 09:05 AM

It's so hard not to feel like a victim of _something_ when you're sitting on the couch in your jammies for the second consecutive day with no energy and expectency of a brighter tomorrow. My wife has fibro, and just found out that her thyroid is low too. I try so much to keep her from feeling down about what she can't do today and maybe not tomorrow either. None of this has changed how I feel about her, and hopefully that at least is a bright spot on dark days.

Wholeheartedly agree with Gm48 + urge everyone here very read her diary too! EdNerd -we are all here to fully support you too. Was not so lucky when fibro entered my life either as was with a guy whom deeply loved yet all was great whilst was well yet as soon as fibro came along he could not cope(we were not married yet did love him totally) yet he did me a favour as a few years later meet my husband to be in Chris(present hubby) yet he saw beyond the fibromyalgia+ all my health challenges plus wanted to help me as much as possible through them! He even proposed to me on a day when was super challenged lying in bed(bed bound day) looking far from best -so just had to ask him to repeat himself to check my ears were not playing tricks on me then said Yes as thought this is really romantic(not the romance envisioned in early youth yet this is much deeper) so sometimes life is surprising in a good way too! A few days ago we celebrated our 6th wedding anniversary- our love grows deeper all the time! Yes, we need to find coping skills so we can come out of the dark moments+ so we can hold on extra tight! Am in high pains right now plus have a migraine yet the tender words and actions of hubby is like sweet medicine along with the care of all my friends Yet learning to be own best friend is the greatest love of all plus the greatest medicine It is not easy to be gentle with self or even to be compassionate as a carer all the time-you will slip up yet as long as you dust yourself down then start over again with greater loving kindness then all will be okay even though not easy!Life is not easy or is supposed to be- knowing this truth plus accepting it makes it easier to deal with whatever comes our way ! we cannot always fix life/fibro as we wish yet we can manage both better by adopting a survivor mindset! one tiny step at a time! For me find my spirituality, Budhist philosophy, world wisdoms,positive psychology+ being inspired by heroic individuals -all have helped me to be the positive person am today.Sure have days when do not cope brilliant emotionally- am not a robot! However most of time do not let fibromyalgia define me or stop me from living a quality fulfilling life even on days when pains are high . Please read my article on Fibromyalgia Challenges SG in Articles section and my article in Fibromyalgia SG also in Articles section. Send me a message anytime too-always happy to help/listen! big soothing gentle hugs to You both, love Clarita

I started out my younger life being a negative nancy. As many others I had a hard life. I had trouble seeing the light. Then I worked in a holistic center. I made appts and handled the front office. I had a habit of referring o things as being a "pain in the ***". The hypnotherapist on staff would tell me if I kept saying that I would need preperation H, a med for hemmoroids. They introdused me to the book "You can heal your life" by Louise Hay.

Changing my thought proccess took time and practice. It was kind of a fake it till you make it kinda thing. Things in my life didn't improve. It was just easier to deal with. Murphys law seems to have followed me from birth.

Hindsight has shown mw that I have had Fibromyalga even as a child. I too have faced people taking me for lazy and a hypochondriac. Knowing what we know my mom says it all makes sense now. She has appologized and feels bad she treated me that way. She really did her best to take care of me health wise. I was always at the doc's.

I heard a quote but I don't remember who said it.

"The absence of evidence is not the evidence of absence".

I choose to be positive because I feel bad enough. It has been a hard realazation that my legs keep growing weaker. It takes so little to wear me out. I am often in bed unable to move. It can take great energy just to shift my position. I close my eyes and go to my favorite place. Tybee Island in Ga. I can hear the waves, feel the sun. Hear the seagulls. I'm walkin on the Beach lookin for shells with my baby. It has always been a special place for us. I'm sittin on the beach havin a couple beers and eat boiled peanuts with my inlaws. All is well.

Life is hard enough on its own. If I didn't have a positive attitude I'd do nothing but pray for death. I also listen to music in my head. I can go anywhere I want. Run on the beach, climb mountains. There are limitless posibilities.

By the way, Its good to be here today.

Shelley, Most excellent to see you post plus hearing from You always puts a smile on my face as think you are just peachy!! Like your good self- go to my favourite places in my head as it relaxes me. Yet, also, often find myself swimming with dolphins or whales even though have not done this in reality although have gone dolphin watching in a boat!

It is wonderful to read how you have overcome adversity as well as become your own best friend even with the myriad of health challenges- thank you for sharing your inspirational story with us all!!

Visualisation is powerful medicine- truly believe this!!

Sending super gentle hugs to You as well as to your baby, love your friend Clarita