I was once told…… “You think to much”

When I heard that, I think I freaked. I mean, I freaked worse than I probably was when I was delivered the message. I didn’t like hearing it, and I started to question every little thing about my thinking. It turned me inwards deeper than before.          I think the messenger was trying to verbally slap me across the face to get me to stop. Calm me down. I don’t remember the entire context of the situation but his message dangles in my psyche whenever I get overwhelmed with life.                       And by the way….I do remember it reduced me to a puddle of tears.                             And a  lifetime of questioning everything I believe.

Fast forward…..

I woke up this morning. Early. Like really early. I didn’t want to be awake. Reason….. Because my whole body was a mess. Like it frequently is.                                 You see, I dared “do something” yesterday. I went to pay a bill and get a few groceries. Not much. I knew it was going to take me out for today, and maybe tomorrow as well. But that still doesn’t stop me from being hopeful that one day my body will magically not be an asshole and I will be some a semblance of “well.”     It’s really hard to explain the sensations and discord my body goes through after being upright and mobile for too long. Lets just say it acts as if you have a really nasty case of the flu. Best comparison I can come up with. The fatigue, pain and often times digestion issues are awful. My limbs feel heavy and weak. My muscles ache. I am dizzy at times, and my vision gets messed up. My heart can race, and blood pools in my extremities. Dysautonomia becomes pronounced.                        And the worst part is, that you wish like you could crawl out of your skin and leave it behind. 

So every time I make plans, or need to venture out, it’s a measure of strength, and checks and balances. Most times it doesn’t balance. Most times I dread the fall out before it even happens. It’s enough to make anyone agoraphobic. 

And that I pretty much am once again. And not because of panic attacks like I once was before. It’s more of a practical form. A choice……

Is there  such a thing?

So here I am…..Thinking        

At least I do!







Bidding Time

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We are all just bidding time until our days are done…..

In therapy today I fully admitted that I think a lot about why I am still here and what the purpose of it all is. I added after she asked if I was suicidal, that a few days a week I think about it but that I had no plans in place, and that I would never be able to do it anyway. I just think about it often, but always settle for packing my shit and running away if anything. But then I think about all the energy that would take and all the people that could probably care less if I did. Not that I am trying scare anyone, or look for attention. I really do wish I could leave, but fear the consequences if I did. At least here I have a few people I can call when I really need too. So I abandon my plan’s and stow it away for another day of self pity or strength to carry it out. My huge sense of responsibility anchors me. 

It’s little beautiful things that keep my interest. Like the decent of a spent Orchid blossom from the corner of my eye. And then two in one day. Sometimes I look for the symbolism. Or just gasp at knowing that one by one each blossom will have it’s final freedom from the branch. Fade and shrivel. We all do that……

I cried. I joked. I talked about things that I don’t think I have ever admitted to anyone before. We all have secrets. And we all have our versions of shared ones too. We hear things and process them according to our experiences. Someone may say something and mean it a certain way. But the recipient might interpret it totally wrong depending on their current ability to hear. Lately the messages have been coming through with self deprecating meanings to me. I try my hardest to counter them and seek a more positive twist. But my brain is battling me at every turn. Depression is an ugly game player and some days I feel like one of those fading flowers. 

I really like my therapist. But even she asked if I could afford to see her more then once a month. I said, “I really can’t, so I’ll make an appointment in July and we will go from there.” I plan on going back, but maybe I’ll find a light between now and then. Who knows. All we can do is ride the waves……

Each Day a New Beginning

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It’s beautiful moments like this picture brings….little images or experiences that keep me holding on. Beyond that I can’t seem to find a reason for my existence anymore. Yes, I think of being done a lot these days. Call it suicidal if you will. I won’t lie, it crosses my mind almost daily but I am to chicken to make it happen. Each day is a new beginning, but I have also learned that each moment is more precious than even a new day. My pain is off the charts today. I finally decided to take a Tylenol. EXTRA STRENGTH. It’s the only thing I will allow myself besides rest, a bath with epsom salts if I had some, and distractions that have become, Mundane…..Boring. I am depressed. It waxes and wanes with the pain. The worse the pain, the worse the dark cloud and spiraling. I even looked at places and the cost of  living for assisted living housing. Something I dread but know is coming. According to findings I don’t have enough. This adds fuel to an already depressing reality. I see my therapist on Thursday. I have waited three weeks to see her. These are the things I need to discuss and find help in making decisions for my future…..You see I did a thing yesterday. I geared myself up and went to visit my father in the hospital. The visit was nice, and I saw three of my four siblings. But by the time I left I barely made it back to my car. The pain and fatigue had taken me out. But I would never let on…..If someone asked I would hesitate to tell the truth. But then I would. With a smile.

I guess that cancels out your credibility, but no one can handle tears either. I’ve also learned that no one knows how to respond to the truth either. So I sat on the edge of my  carseat and literally began tearing my leg splint off, it was caught up in my pants, but I managed to finally get it off…..short of removing my pants right there in the parking lot. I actually considered it, or driving with a dangling splint. I knew I couldn’t drive home with the thing on, it was digging into my shin and actually makes things harder in so many ways. It changes my gait and adds weight that I am to deconditioned too handle. I was also starving and knew that when I got home I couldn’t cook even if there was food available. My fridge is bleak and the thought of one more egg, or some yogurt was unappetizing. Much less cooking up some rice with a frozen vegetable. It seemed daunting. I wanted a real meal. So I stopped at Noodles and ordered some Pad Thai. Not the best, but at least someone else cooked it. I settled in and decided I was proud of myself for eating out alone for probably the first time since I worked at the mall. After a few bites and the lack of vegetables and the glorious taste of the only sprig of cilantro they gave me, I packed up my food and headed home where I knew I had a fresh bunch Of cilantro(a week old) but still somewhat crisp. I could make it better, more appetizing. I pulled into my garage and noticed my neighbor was moving out. We hardly ever saw one another, but I had talked to her a few times in the past year. She was beaming. I asked her where she was going…..She said that her and her Ex had gotten back together. I was genuinely happy for her. I said, “sometimes we need a little time alone” She said, “five years….and laughed.” I said, “I bet the kids are happy?” She said, “yes they are.”  I said, “C’est la vie!” And we nodded to say good bye. I shut the door and proceeded to find a bowl and dump my meal in to it and added  so much cilantro to it that I considered my daily ration of vegetable’s to be filled. I collapsed on the couch and began flipping channels and trying to forget how exhausted and in pain I was. Not to mention the thoughts that rose about most likely being alone for the rest of my days. I was genuinely happy for her, but couldn’t help think that it was because she was younger, fitter and most importantly, not disabled. 

I really do try and live in the moment, and not reflect on the past or the future maybe’s….but hey, how realistic is that? We learn from our past, and sometimes need to rehash it to remember for our future decisions.  We also need to look forward in order to set goals. So living in the moment is important to stay focused. But in reality the past and future are just as.

By now I have figured out that the very act of walking and my unstable spine are what causes the crescendo of pain in my body. Part of the reason for getting a wheelchair. I can do small walking stints with lots of rest in between around my apartment. But it’s the longer strides and hard pavement that takes me out. My joints threaten to dislocate around home, but at least I know I can sit down or make my way to a comfortable place here. Being out and about is a major decision in the what if’s.  It makes me nervous and takes my feeling at least 75% confident that I can pull it off. It happens rarely, and usually out of desperation to be outside of my own company. It usually involves me going to get groceries. My world is small, and only getting smaller. I have for the most part given up on trying to make new friends. And the old ones have pretty much disappeared. Either by their choice, or me just not having the energy to expend to keep up. 

Each Day a new beginning…..Each day a new attitude….Each day a new chance to find a glimmer of light and a bit of hope.

Tackling Change


I actually wrote this entry about a week and half ago and I am finally getting back to it. I don’t quite remember why I abandoned it. But I do remember I was in a really dark place at the time. I am a bit better the past few days because I finally had some focus and some actual company. Not just my chit chat with Facebook friends and background voices on the television.We also had a family gathering and I am exhausted. When I overwork myself physically my mental health is better, but my physical challenges amp up, as well as the pain. It is really hard to function. As a result my sleep suffers and it takes me out for a few days recovering. This time however I am going to try and challenge myself to work through some of the pain a bit more. I mean, what have I got to lose….maybe a few extra days on the couch. My Horizontal life….. 


Life is a series of changes both good and bad. We all face them. We all handle them in our own way. We also tend to get suggestions from others that may or may not be helpful. I welcome a different point of view as long as it’s coming from a good place. Occasionally though we are offered criticism and judgement for our choices. I don’t handle that well. Usually I shut down and internalize my anger or fear. I stew about it and often times end up shutting others out and off. I am easily offended and lack self esteem. As a result I have learned to put on fronts and false strength as to not let others think that I am struggling. 

It’s all coming back to bite me. Although I know that some can see right through me, I have put enough distance that perhaps they are afraid to offer me help thinking I will shoot them down, get offended…..or my worst fear, they have all decided to let me eat it. Maybe I’ve unintentionally burnt too many bridges.

This isn’t my first conclusion however.                                                                                   My first is ………                                                                                                                                  They just couldn’t give a shit.                                                                                                            I am not worth their time and energy.                                                                                      Or they just think I am exaggerating my disabilities.                                                      That’s the anxiety that talks to me more often that not.

I have no clue what is true. 

Everyone wants to be strong and self sufficient. At least I think so. Admitting that I need help is really hard for me and I often wonder if my delivery is poor. Since my divorce I have lost almost everyone that I thought were my friends. But I guess divorce does that according to some. No one wants messy in their lives. I always thought of myself as a bubbly easy to be around person. Yes, you can be that and be an introvert too. I like my alone time, but also need others to not feel so alone at times. Introverts get lonely too. I also realize that it’s hard to be around someone who struggles with depression and a lack of energy. I also know I don’t have much to offer these days other than my raw unedited self. I am done candy coating things. Time to be real. Why is it that when you have nothing to bargain with, such as money, strength, “things,”  You are often forgotten. Seems like we all have to wave our flags and interview for top billing. “Sure, I’ll pencil you in” But! If something better comes along things could change. No loyalty or commitment these days. We are a society of non committal, always looking for the next best thing, meat sacks wandering around like zombies. 

Not me!

Recently I posted this on Facebook…..”Trying to remember life before Facebook” 

So far I have this for responses.

“My phone rang, and I got more snail mail and email” Said one friend…

And another, “People hung out together and listened to each other, instead of being divided and spewing hate about a stupid political Facebook post.”

Then someone said, “I can’t” While another posted, “Before cell phones people called. People made dates to get together. Watched concerts in the park, and”
Canoed, went boating, played Field softball, went on Long walks, and Laughed out loud for reals!” 

The answers stopped there. Since then I have scaled my Facebook obsession back. I unfollowed a bunch of pages and am refraining from reposting a bunch ubiquitous quotes and memes that litter my feed daily. I am trying to stick with personal reflections and newness. Trying very hard to look forward and stop rehashing the past. As well as wasting time. God knows I’ve done plenty of that…..    I intend to write more. Create art. And read. As well I plan on finding small adventures near and farther away. I think I am going to plan a middle of the week mini vacation all by myself somewhere this summer. I need to test the waters for my future dreamt of adventures that I hope to take some day. If I can’t have a loyal travel companion…..I will need to find a way to do it myself. 

I will be fine…..


Out to Pasture

  FullSizeRender (5)Lately I have begun to think about end of life stuff. I don’t want to. It seems like you are welcoming it. And that to me seems self fulfilling. I’d like to think that I am not superstitious. But I am…..Just a little bit. My patience is wearing thin lately and as a result I am more anxious then I would like to admit. I don’t do anxious well either. “Just Breathe” is my motto. But I resent it, and often forget too.  It should be natural. I should be content with whatever happens by this stage in my life. Or at least willing to go with it…… Sometimes I am stronger than I am right now. Why can’t that be my mindset every day?   Recently one of my sisters sent me a text and apologized for my recent admission to needing a wheelchair to live a better life. She then asked whether it might be time for me to think about an Assisted Living place. I wanted to scream at her and ask why she would even think that? But I restrained even answering her right away and instead sat in quiet reflection and a puddle of tears. Why does the truth hurt so much? But all I could think was…. “Out to Pasture. No one wants to help or deal with her. Time to stick her in an out of the way place and let nature take it’s course.” That’s all I could hear. Each day I have to assess my energy and pain and what allowance I have to spend to make it through. That is true. I have lt look at my future commitments, which are few. I check the weather and my bank account daily. Sometimes multiple times. Defaulting to companionship online to break up obsessing about how mundane and boring my life is. I am stuck in a groundhogs day repeat cycle. When I was watching the news today and they were discussing planting times and Memorial day sales I thought, “See….we live for predictability and stability. We rinse and repeat hoping to get a different result.” The only thing that ever changes is our slow decent decomposition, and our place in the pile. I try not to think about it, but it kind of smacks you in the face every now and again. So written below is something I wrote in a group of us who all have Ehlers Danlos Syndrome. I was having a bit of a pity party with myself this morning because I woke up in a huge amount of pain and stiffness. I was feeling pretty good last night and had made plans to be productive today. It could still happen….. But with the pain often comes anxiety and depressed feelings. Any way……read below. That chat was with another one of my sisters that I refer too.   

Patience has never been easy for me…..Lately I feel like they are being constantly tested and I am trying so hard to be open to it. But I am failing miserably. Today’s pain and stiffness is off the charts and I am so done. I also had a chat with one of my sisters the other day, and some harsh realities were spoken. Tomorrow I am suppose to do something with her and I am afraid I will once again prove to her that I am so not worth anyone’s time to ever make plans with. Part of the convo was about how I never feel good, so that’s why no one asks me to do anything. My response was…. “true, but that doesn’t mean that I don’t want or need human interaction, and it’s not like I can help it, my body sucks and I do the best I can, all I want now and again is company and I am sorry if it’s a bit lack luster because I can’t keep up. Maybe others need to slow down a bit.” She really didn’t know how to respond to that. Maybe the truth hurts where that’s concerned. Anyway, I am sure plenty of you know exactly what I mean. You can only cover up pain and exhaustion so much. Balancing this life of isolation is a reality check for me. I am beginning to think that the only way I can mentally stay sane at this point is to explore assisted living. That way at least I would have some sort of companionship at easy reach when I am able to interact. Sometimes it’s just nice to watch a movie or show with someone and have a conversation over a meal afterwards. I fucking miss that more than anything.

My current lease is for another 15 months and a wheelchair is in the works. Maybe that will help with a lot of things. So here I am, waiting, and trying to be “patient.” Did I mention that I don’t do that very well?

I have had to learn to make tentative plans and look forward to them in order to stay somewhat sane. Little goals. I miss my able body and hiking and exploring. Gardening, and being with other people. I was recently let down by a friend who told me that he needed someone who was more independent as a partner. Perhaps younger. Man did that sting. Especially since I lost my ex to just that. I told him that that was sad. That’s all I could say. I ended our convo and I haven’t talked to him since. Now the “ghosting” has begun. Awkward happened and it will never be the same. I don’t consider myself necessarily needy. I just need help now and then. I don’t ask or require much either. But the messages I keep getting say otherwise.

Maybe it is time……It’s a hard pill to swallow.

I need to add this as well…..a response to a group member about it all.        

Yes…the restlessness to be useful or productive. I just wish I had the energy and will to be that. Brain is a hot mess of confusion.


IMG_1117Do you ever sit and think…..What am I grateful for? 

I find myself being reminded now and again that I should be grateful. That I should count my blessings. That if only I would do this, or that……I would find more happiness. And if we all did this, perhaps our dreams would be realized. Our lives would be filled with more joy, love and contentment. 

I agree that finding the light, in the dark, makes it a tad bit less bleak. But I also know that life is a balance, sometimes out of…….but, without the dark, there would be no stars….. As the saying goes. 

Today I am more grateful than some other days because I feel happy for no apparent reason. I am going with it. No over the moon happy. Just happy. And that could change at any moment. After all life is a constant changing set of circumstances. You might be able to predict an outcome. But all it would take is a shift of the unknown to shatter the dream. 

So that brings us to expectation and our need to control a certain outcome. I spent much of my life full of anxiety for one reason or the other. Maybe it’s a part of my genetic makeup. Maybe it’s learned. Maybe it was a set of circumstances built on one another. It took me to become so “crazy out of mind” and suicidal, agoraphobic, and desperate to reach out one last time, and grasp on to life. I got onto my computer after calling my insurance company and not being able to get into a therapist within network and finding a random, but perhaps not so Therapist who was able to see me within a few hours that day.  He taught me the tools I needed to find my way back. Simple but complex if you don’t have content. I spent twice a week with him basically spilling my guts with him gently inserting thought change in where needed. After many months, and over a year I learned to see things differently. 

Over the past several years I have grown with the one simple truth that life is meant to be lived in the moment. And to essentially go with the flow. After all, it is, what it is. I am ever grateful for these lessons. And interference from the greater universe. 

Now I will have to say that it is often not easy to accept it when it feels so dire, so uncomfortable. Like it’s the grand finale. But most days I welcome the end without fear. I use to be so afraid of the end. The unknown. But think about it. You can make all the plans in the world with anticipation and excitement for your perceived outcome and all it takes is a shift in thought, in play, or interference by any unknown cause to change the outcome. So with that……I have learned to not expect an outcome but to be open to whatever happens. It’s much less stressful that way. Less anxiety. Or if your lucky, none. 

I use to have this feeling in the pit of my stomach that emanated through my body in outward creepy crawly vibrations. I felt like I had something residing in my soul. As if I were possessed. My therapist put a image…..a name to it. Homunculus. I had never heard this word before. I asked what it meant. 

  1. a very small human or humanoid creature.
    • historical
      a supposed microscopic but fully formed human being from which a fetus was formerly believed to develop.

      Once I had this definition I was able to caress it like a friend. I invited it to stay. Seems crazy. Right? But think about it. The more you resist something, the stronger it seems to get. It took me a long long time to realize that this was a gift of sorts. It taught me to be patient and listen.


    I am grateful for this lesson. I wanted to be so right about so many things that it blinded me to other possibilities. As the years have past, and my learning about the buddhist philosophy’s which his lessons were based on, I can finally find peace within even the darkest of times. It doesn’t mean I like it. But it means that I am much more accepting of the unexpected, or the things I have absolutely no control over. My expectations are lower, and as a result I am much less anxious and a lot more grateful. 

    I reach for the stars, but stay grounded in knowing that anything could happen. I make plans for my future, but know that it may not turn out the way I would like it too. It’s okay to dream. It’s okay to make plans and set goals. It’s also okay to be disappointed and sad. As long as we don’t attach a certain outcome to it. And most importantly…..

    Live in the moment and be grateful for every breath we get to breathe. 

Living alone with a Disability

IMG_1135Living alone with a disability can be a scary thing. Most days I can function just fine. My basic needs are being met. That doesn’t mean that it’s easy or fun by any means. It is terribly isolating and lonely. But I cope. Recently I reached out on Facebook and made a post that I was having a difficult time both physically and as a result emotionally. Usually only my other disabled friends acknowledge these posts, so I mostly only talk about this stuff in private groups. So I decided to be brave, and honest and let my entire social network in. And once again it was mostly my disabled friends who responded with words of encouragement and or hugs. But I was surprised when someone not disabled reached out and sent me a text. She said, “sorry to hear you are having a tough time, do you think you need to think about assisted living?” This was like a kick in the gut. Further acknowledgement that if I was having some struggles and god forbid voicing them. That it was time to put me out to pasture so to speak. Now I know she didn’t quite mean it like that. Or perhaps she did. I don’t know. I didn’t take the time to ask because from past experience there is usually a lot of back peddling and awkward apologies that end up with a timeout period of non communication that can last for months. So I usually just let it slide and try to put myself in their shoes, and rationalize the whole situation away. Back to square one. Should I, or will I ever be honest about my situation again? 

Seems like asking for help, or voicing fatigue and vulnerability is a hard concept for some. I hope and pray that one day when they meet defeat. Temporary or otherwise……..that someone actually takes the time out of their busy life to assist.

I didn’t choose this life. It chose me. All I ask is for is some acknowledgement and occasional help. Not to get thrown out when I show the least bit of frailty. I am not ready to be housed away and forgotten. I already feel that way most days, I still have a lot to offer. I still have decent days where I can still do. It might not be at a level others can. But I do the best I can. 

If I could exercise or will or supplement my body to function better…..believe me I would, and have tried it all……over and over again. I keep adding this and that, and some days I just throw my hands up and ask…. “What now? Why me? FUCK this SHIT!” It gets old real fast. So if you have a suggestion for me, I welcome your input. But be prepared to hear that it’s already been done before. And I’ll try to be gracious and know you meant well, because I am sure you did. But please, before you assume or offer suggestions, ask us what we have done and if we could use help. Ask us if there is anything you can do to make life just a little less challenging. Sometimes it’s as easy as helping us with shopping, or going to a movie, or taking a drive, Or just sitting with us watching a show or sharing a meal. This life of seclusion is mostly difficult mentally. I am thankful for Social Media, but it does not compare to an actual real person in your midst. 

Living life in the fast lane all of the time leaves intimate moments with others unexplored. I am planning and striving for a life of travel alone. But in reality I would very much like to share it with someone at a snails pace. Because intimacy is warm and fuzzy and heartfelt. It is mentally comforting and I think what life is all about. Life is meant to love and be loved. And I think we would all be healthier for it. So slow down and look for those that need “real” help. Take the time to find out how. Stop that buying coffee for the next person in the drive thru bullshit. I mean, if they are in that line…..they can afford to pay for it. Instead, donate to the food shelf. Volunteer at a homeless shelter, or nursing home. Call a friend who might need a moment of your time. Support a cause that is important to you. And stop avoiding human connection. There are a lot of lonely people out there that just need a hand up, and  bit of someone’s time.