Regaining a life can, and does require carefully measured well placed steps.
Planned and also realistic in their expectations.
Goals.
Yes goals! Fantastic!
...but preceding these goals I need to achieve a level of understanding about where I am, how I got here and how I feel about it.
Insight! Wonderful!
It is so easy to see other people's patterns and tell them all about it. Recognising your own patterns, that to you is as automatic as breathing. That is hard stuff!
How I got here!
It is my life, my health, my job.
Initially I decided to just fix it!
My health was broken. Ok then let's fix it!
I became very tunnel visioned.
Researching, finding another doctor, investing everything in the impending appointment, and when they didn't have a solution, blame them, feel sorry for myself, then back to searching.
I have a growing number of research articles that I carry with me.
I swamp the doctors with information to validate my reason for seeing them. My right to be there. Before they even had a chance to hear why I was there I was desperately trying to validate my right to be there. Proving to them I know more than they do, preparing myself for the disappointment of another dead end.
During my most recent encounter with a doctor I went to my growing bag of documents and validation articles and handed it to the doctor as tears streamed.
I had to laugh when the first document she pulled from the bag was Stellabelle's
Un-crap your life.
I told her it was the most rigorous of all the studies in the bag, and went on to say that I should discard the rest of the medical articles, as a first step on the Un- Crapping programme.
It isn't a bad idea actually.
In truth, I have met many doctors and other health professionals who were very invalidating, misinformed , judgemental etc.
After decades of my symptoms being dismissed and finally having a diagnosis I imagined I would have an easier time within the medical system.
I haven't, and I have a chip on my shoulder about it.
I painted every doctor with the same brush. I told them they were crap and in the same breath begged them to fix me.
Because why? Under all of it I didn't feel deserving.
Often I feel tiny and insignificant when I speak to a doctor.
I need to own those feelings, and painfully reflect on why. Even as I write this now, I feel like I can relinquish part of a fight that I have carried within myself for a long time.
Fighting for a fix isn't working.
I had already decided it was my job and my responsibility to fix things and I failed .
I was stuck.
Stuck at a point where I despised myself for not being better.
Angry at my body for failing me, and even angrier at my mind for not being stronger / smarter / wilful enough to fix me.
So when I failed to think my way out of a genetic disease that no geneticist has managed to cure as yet, I manifested anger, resentment, sadness, frustration and self pity.
God forbid someone should asked how I am, If I was better? Or remarked that I looked improved. I wanted to scream at them. Sometimes I did.
I could hardly stand myself.
Correction - I CAN HARDLY STAND MYSELF!
The frustration and continual Crapola is eating away at me.
I felt I could do nothing to contain it.
So I shared it around.
The people around me wore it. A diminished intimate group, as chronic illness is not fertile ground for maintaining friendships.
So my family wore it.
I am going to change things in Australia for people with connective tissue disorders.
The available treatment and understanding is poor.
But first I need to change myself. My attitude and my current expectations.
I am on a mission now to Uncrap my life. There are elements of my health that can be treated, and I will get to that in time.
For now I am going to work on acceptance.
Of illness yes, but most importantly, of myself.
I was surprised to learn a few years back, when working with a psychologist that my personality traits clustered as a perfectionist.
It is true.
If I didn't come first then I shouldn't have tried and might as well have come last.
That is what I would tell myself.
I didn't have the same expectation of others. But they were not starting from way down here where I viewed myself.
In my mind if I didn't win then everyone would then realise the truth, that I was nothing worth while. The winning covered the poor self concept, accommodated a secret truth that I harboured about myself.
If I relinquish my title as The best then who would want me?
Even in this photo, marathon number 7 in as many days, I hated that my finishing time is visible because I didn't think it was fast enough. I was completely broken, had run 300kms, but still I hadn't done it well enough.
Step one in un-crapping my life.
Write down on a piece of paper, MY CURRENT CRAP TRAP IS...
Next step for me is to rediscover joy.
I have started listening to music rather than stare at the tv.
That simple change has shifted how I feel. Music is a powerful tool.
It motivates us and accesses emotions.
This track rolled around as I typed. I thought it a perfect one for today.
Thank you Tracey and thank you @stellabelle.
After some joyousness
It is time to formulate short and long term goals, and realistic strategies to implement change.
Not desperate fixes, but positive personal change.
Thank you Steemit. GB4M.
I loved this... And I can completely understand your feelings... I have epilepsy and have been battling it most of my life. When the doctors had no explanation or 'cure' I was in denial. No idea why it's happening, what is causing it, or what can be done about it except for medicine that eats away at you or procedures that may or may not work... It was frustrating and it hurt, bad. I remember my doctor telling me that I would just have to accept it, and I just couldn't. Because it wasn't just me suffering... It was my family as well. Watching me have horrible seizures and watching me constantly to make sure I don't hurt or kill myself when having one. It was hard on everyone. And goals? Pft... I could barely remember my name on some days let alone goals... But I finally realized that I was letting it control my life, in more ways than it needed to and that had to stop. So like you I took small steps and made small goals to help me realize that I could have dreams still and do the things I love. Especially with an amazing family behind me to help and guide me. I also had to realize that there is no finish line. No last step that will magically fix things. Just the small steps that I take daily to stay mentally healthy. And it doesn't always work out like I planned but that's ok. That's what a strong foundation is for. ;) I really hope this helps you and your confidence in yourself grows. I know that's a hard one (after all I'm still working on that too) but it can get better! Much love to you!
@girlbeforemirror,
I was scrolling through your poetry but the title of this post caught my attention.
Here's a trick: You can't be thankful and depressed at the same time.
Be thankful. It's that simple.
My Mom, the parent from whom I inherited my mind, is seven years into Alzheimer's Disease. Until you've seen it up close, you can't imagine. It's no way to live, and no way to die. You don't have to look far to find someone worse off in one way or another.
Be thankful for what you have, instead of being depressed about what you haven't.
Shit happens. All we can do is make the best of the imperfect situations that we call our lives. Remember, 95% is not perfect, but it still gets you into Harvard.
https://steemit.com/poetry/@quillfire/good-i-look-in-those-jeans-poem-it-s-all-about-perspective
https://steemit.com/poetsunited/@quillfire/spu-poetry-contest-1-poets
You are right. This is true. I recoiled at your statement initially, You can't be thankful and depressed at the same time.
I don't consider myself depressed. I look upon depression very clinically (psych nurse), but I am ill at ease emotionally with my current circumstances... So there is definitely something that conflicts with thankfulness.
I have experienced Alzheimer's up close, it is devastating, I am sorry for your loss. The loss of someone through this process is protracted terrible. I am watching someone very close to me with cerebral atrophy and calcification. I am also directly in line from it, in a lineal genetic way...
My own situation, has caused me profound limitations on mobility and pain. Out of control pain does rob dignity and a sense of coping, widespread misunderstanding compounds that struggle. I am learning to deal with a genetic condition that I have confirmed to have passed to my children too.
My current transition is not something that I am easing through. In the midst of it, the hospitalisations, the time away from my kids, the inability to parent them, extreme isolation of our family. These have been very hard. I spent approx. 3 months in hospital last year, my children didn't see me. Now I am home I can not parent them without the help of my mother, who is being treated for cancer and has a degenerative brain condition. She is the only person that helps me and my husband.
I really loved reading this.
It feels you've put your heart and soul into sharing this.
I commend you for being so brave :)
There is alot of me in this one M. Uncanny. I think i shall get the StellaBelle book. I am cheering you and thank you for your honesty and insights. Yes the perfectionist bug, i had that for many years. Sending you Love always
Music is such an empowering tool!
I think we all forget at times to actually sit down and
listen to it, instead of it being a constant background thing..
Great to see you fighting!
keep it up!
yaah....👍
That's nice to see your content about life. really i'm liked your content too much. share those type of content in this way. i should to say you keep it up and well done. have a nice day dear!
All I find myself thinking is two things. The first and probably the most important is don't be too hard on yourself. Be good to yourself. I mean really good. Hug and praise the woman that you are and laugh off the woman you think you should be.
The second is ... okay here it comes .. another self help book ... forgive me if you heard it before. But I found a lot of healing from the Power of Now by Eckhart Tolle.
But really what I want to say is that I am sending you as much positivity and care as is possible at a distance.
You are already good and strong ... just know it:):):)
They haven't said it in the air.. The music for sure is a sole calmer...