Posts Tagged ‘coping’

REMEMBER THIS:

Don'tUnderestimateMe

Radical acceptance isn’t supposed to be bitter. It is supposed to bring peace.

So, I will now continue along my path, knowing, thinking, and noticing.

I don’t know what else to call this set of emotions that have lead me to say, “I’m done.”

I am just frustrated beyond words over  being marginalized by my healthcare providers, and really, just people in general.

I’m tired of the fight getting me nowhere.

I recently read something by Australian historian and author. Tim Flannery (The Eternal Frontier) that made me take serious pause: one person cannot change mass behavior that they believe to be inappropriate or immoral. By bringing such things to the attention of the majority, it creates hostility against the person. So, in other words, accept the bad/poor/inappropriate behavior and keep quiet. Accept it. That’s just the way it is. Morality never wins – the mob wins. (this is a paraphrase, not quote)

I have been unsuccessful at creating or joining a mob that can truly make a difference.

So, I am DONE.

Done doing my due diligence just to be ridiculed and then, ignored- not treated – told that I should “get used to getting older.”

Done doing this – what ever  you want to call “this.” Trying to gain acceptance as a human being, trying to get someone to care enough to try and help me, trying to teach people to advocate for themselves as I have tried to do… Maybe not forever, but for now, I am DONE.

WHY?

Maybe this is the straw that broke this camel’s back: I don’t think that the things that are going on with me now (like a sudden 10 lb weight gain; almost daily, debilitating migraines; hair loss; very easy bruising) are something I should just “get used to.” (Thanks for that sage advice, Doc.)  Just because simple blood tests show me as “normal” – isn’t it quite obvious things are far from normal? Example: I have had a bone infection for at least 4 months – it was discovered on a routine dental X-ray 2 weeks ago – but – it HAD been noted on an MRI in April. But, did ANYONE bother to address it – NO. I asked about the radiologists comment and was told not to worry. Who’s worrying? I just want such weirdness to addressed. Or should I just “radically accept” my conditions? (no, I’m not leaning towards the “church” of Mary Baker Eddy!)

Now, I am working on radically accepting that I am not going to get the care, attention, treatment, testing, concern and compassion others may be fortunate enough to get.

[If you are reading this, and are getting these things I listed in the previous sentence, please be joyous. Seriously.]

I am also trying to radically accept that my absence from the fight will not make one bit of difference on this overcrowded, selfish planet.

Now…I am DONE.

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InvisDisability

My current medical symptoms would send the average person to the ER…crushing chest pain, blurred vision, difficult breathing, unrelenting migraine headaches, inability to eat normally, tachycardia or bradycardia, high or low blood pressures, insomnia – oh, and the back pain I can’t find any specialist to address because I have already had 6 surgeries, and now, the shoulder that already has been repaired twice is painfully shredding its way out of its socket…I really haven’t had a “good day” in about 12 years. But I don’t LOOK like I’m sick so people think I am a malingerer, just looking for attention, or faking my symptoms.

I guarantee I haven’t developed the magical ability to manipulate my blood tests, MRIs and various other medical tests so they come back abnormal.

I have had a difficult time learning to accept my medical issues. I have many symptoms in many systems that cannot be classified into any particular category. I have most recently been dumped into the category Ehlers-Danlos Syndrome (but not any particular type, of course) as this seems to at least catch-all the symptoms I display in some way. All of my official diagnoses have the letters “NOS” after them – “not otherwise specified.”

It really stings when people are just plain callous about my health issues – and it is the worst when these people are the doctors that are supposed to help me. I have had to had to do a lot of my own research within professional resources (Medscape, PubMed, etc.) and advocate strongly for myself. This has meant seeing many doctors in an attempt to find one willing to take on my complex issues and try to piece together the puzzle that I am. I have been treated quite harshly by many health professionals due to my complexity. I understand that they may to want to take on a patient they cannot easily figure out. It would just be nice if they could not be so abrasive in their dismissal of my symptoms and test results.

Because of the unpredictable nature of my symptoms, I have lost what few social connections I had. I spend much of my time alone, at home. I used to find solace in online forums, but I have found many of these are similar to real-life support groups that tend towards a circular discussion of hardships – and never achieve any growth or change. What would be helpful is a directed, online resource or app that provides guidance and education in the management of chronic illnesses and the psychological challenges people like me experience. Can such a thing become a reality?

I have always had to be a survivor – my Type A personality and perfectionist tendencies helped me through the cPTSD (complex PTSD) from 14 years of sexual abuse, rapes, and general cruelty from classmates. I found ways to cope – all on my own. I never really had much of a support system. Now, to be sidelined from so many activities that used to define “me,” was – and IS – quite distorting to my thoughts and feelings about life in general.

Anxiety has replaced what used to be stoic resolve.

Anger and resentment that I was formerly able to tap into as energy to push through rough situations – to make myself physically stronger in the gym, or mentally tougher in the workplace – now comes to the surface in staccato bursts, and those closest to me (my husband, primarily) suffer the consequences.

It took me about 6 yrs to be able to say the words “I can’t.” This is NOT pessimism. It is pure, unadulterated realism. And with the myriad of undiagnosable conditions I live with, I HAVE TO be realistic. To think any other way is deleterious.

I know this goes against the “rainbows, unicorns and fluffy bunnies” mentality that most self-help resources (and professionals) seem to think is THE ONLY WAY is the way to overcome hard times. But, with the help of a therapist that specializes in treating people with multiple medical issues, and, a good PCP that is a realist, I learned that I HAVE TO say the words, “I can’t.” It’s really a no-brainer – but 99% of people just don’t have the comprehension of how their body actually works to really understand. Simply, it protects me – and others – from injury. An example of this would be not getting behind the wheel of my car when I am having certain symptoms.

Don’t misunderstand me, it doesn’t ever feel comfortable to say “I can’t” – and many people don’t “get” this way of thinking at all, nor do they even bother trying. This leaves me feeling isolated and rejected by society. I might as well be some alien life form. And, if I had a dime for every time I have ben offered advice about supplements, yoga, qi gong, tai chi, Reiki, acupuncture and whatever new “complimentary therapy that Dr. Oz has been touting of late, I’d be one a rich gal.

People need to learn that not all disabilities are visible ones. Not all of us that have difficulty getting about are in wheelchairs. And, not everyone with life-altering conditions look or acts “sick.”

I find it quite humorous that the prompts I recommended for this blog challenge the hardest ones for me to write!!

About 80% of the time, I live in the Pit. It’s become a comfortable nest, of sorts. Sometimes, I don’t really want to get out of The Pit. Living life as it supposed to be lived is not possible for me, and no, that NOT a choice. It’s a “prison” sentence, and that prison is my life.

I nap. Or I try to nap. During the day, I possess the ability I lack at night – to clear my brain, quiet the frustrations, and relax into a state of semi-consciousness. Perhaps, this is added by the fact my BP runs incredibly low most days. The beta-blocker I take to calm the chest pain and dypsnea also drops my heart rate to bradycardia levels, and lowers the diastolic of my BP. For some reason, this doesn’t happen at night. It’s as if my brain rages against me and will do anything to keep me from relaxing at night.

I watch a good TV Show – one that gets me absorbed into the story. NCIS, Monday Mornings, Smash, or even a good Top Gear episode.

Anything that makes me laugh makes The Pit much more tolerable. Most of the BadLipReading videos, especially the Michael Buble, “Russian Unicorn” video, or any of the 2012 political ads/debates can almost make me pee my pants.

I play some mindless games on my iPhone as well. Angry Birds, Majohg, Where’s My Perry – anything that engages my brain enough

Unlike a lot of others that have chronic illnesses, I don’t find hope, solace or joy in platitudes, unicorns or fluffy kittens. 30+ years of counseling just taught me how to live in denial – that the “me” that existed just wasn’t good enough, pretty enough, healthy enough or “right” for this world – therapy (and I saw many different therapists due to my frequent moves to different states) just taught me how to pretend to be someone I wasn’t in spite of my experiences and health issues – and has left me even living in an even deeper and MORE convoluted Pit of Despair than years ago. Now, on my own, with the help of the SuperBetter app I referenced in an earlier blog, I’m learning to just be me and stop wearing so many masks and facades, and stop trying to behave as someone i’ve never been.

Until doctors decide that I’m worth their diagnostic efforts so my life will cease being useless (my bad for not fitting into their little diagnostic boxes), i’ll be residing here in my Pit of Despair.

20130422-201631.jpg Drawing by Kurt Schneider

Ha. An off day – what day ISN’T an off day? BP up, BP down, back pain kicks in and nothing helps, then there are the headaches that come from the highs, and the lows.

Basically I’m writing to say I am taking a “bye” for this day. Obviously, it’s 4 days late.

As for the prompts for today:

– I am way to depressed and angry to create a “care package” – really? Who the hell cared about ME my entire life, going through hell after hell after hell. Not a single person, save my poor Mom, She knew there was something wrong and was just as irate at the docs for constantly dismissing me .

– Everything I kvetch about IS a memory of sorts. The rest of the memories that live in this haunted house called my brain you don’t want to hear.

So there.