Mixed Emotions… The Virus Experience

I’ve discovered, during this virus situation, that my obsessive need to control my situation has led to intense bouts of anxiety and a ping ponging mix of emotions while living life in lock down and practicing social distancing. One minute, I’m perfectly fine with thoughts of this virus situation being overblown while the next minute I’m freaked out and obsessively trying to avoid catching it. I’m living with a roller coaster ride of emotions and ultimately, it boils down to my need for control.

Uncertainty sucks. With little being truly known, or simply being kept from us, about this virus, it’s hard to know how seriously to take it. I rarely get sick, but when I get sick, I get seriously sick! My immune system is actually pretty good considering how many health issues I battle but when struck with even the flu, it’s pretty serious for me. I do NOT want to catch this virus. I’ve heard everything from it being like HIV to being similar to the flu. From being immune to having it settle in the body and reactivating. Those living with ME/CFS know all about viruses living dormant in the body and choosing to come out and attack you from within. Though we don’t even have certainty with the cause of ME/CFS, the thought process is out there regarding a virus being a possible culprit. Are we adding another, even more damaging virus to the possibilities that already exist for us, living dormant in the body and breaking us down over time?

Those of us who struggle already with health issues that keep us living a normally functioning life understand just how precious life can be and just how serious we need to take this virus, regardless of the mixed messages about it. Those who are healthy will never truly understand our fears, our precautions, our anxiety… they don’t live day to day fighting to simply get up without pain and/or fatigue to manage even self care on the daily. Never has the above been so apparent than it is now, while dealing with a potentially devastating virus. Seeing how family members respond and how they either seek to protect themselves and us during this time or act carelessly around us has been very enlightening.

I discovered that most of my anxiety revolves around control. I simply do NOT have control over my own life and this virus when living with other members of the family and finding myself having to depend on each and every one of them to keep both themselves and each other safe during this time. I’ve dealt with control issues since I was a child. I simply cannot control every factor of my life and have the assurance that those around me will have my best interest in mind. Trust is hard to come by and I’m learning that truly, you can only trust yourself and that’s a sad reality that’s become glaringly obvious during this pandemic.

Trust is a fragile emotion, easily broken, and hard to build or maintain. I have little trust, reassurance, or control and that causes my anxiety to flare and my emotions to bounce all over the place. It is what it is and it’s just who I am. I’m not a very emotional person and tend to compartmentalize quite well. This makes me appear cold at times but it’s simply my mechanism of handling emotions that I hold close to the vest and keep guarded quite tightly. I’m not cold. I just handle my emotions differently. Childhood had a major impact on making me who I am and how I handle things. It is what it is..

When dealing with a situation like this, it becomes apparent who really has your best interest at heart and who doesn’t. That doesn’t help those with anxiety and truly highlights that obsessive need to control and the obvious little control we truly have. Each and every person in the home has the same job of protecting each other and themselves during this time. Each action affects those in the household. We’re not simply responsible for ourselves in a situation like this, we’re responsible for each other. Each action having a ripple effect that touches those around you leading to possible consequences that can be deadly. Think about that for a minute. It’s a good opportunity to see who is taking things seriously, who is flaunting their control in your face, and who could care less about your life when it comes down to the bottom line….

Maybe they don’t realize the psychology of it. Maybe they don’t realize the very basic need that exists to survive and how paramount trust is right now. Are they so shallow and self absorbed that they don’t even realize the reality of it? Poking fun and taking risks just to laugh inside themselves and thinking it’s all a game? Maybe this virus isn’t as bad as some say. But maybe it is. I don’t have all the answers. I can only live and react with the information given and give this experience a trial run of a SHTF apocalypse situation, with much self evaluation and garnering insight about those around me.

I have time on my hands at the moment and being a deep thinker, this situation has truly given me a look into my world during a crisis and rather than simply reading about it in one of my post apocalyptic story books, a chance to actually live in a SHTF situation on a small level, giving me more insight into both myself and that of my community. I just wish others would take this time to reflect on how fragile life can be and how important building trust and community really is. Those of us with health issues that dominate our lives already know a little about this. We know about isolation. We know about the need to rely upon others at times and how fickle people can be. Now we have a chance to really know seriously or not those around us take things. How important they place our life and health and how well we can trust they’ll have our backs, making sure not to expose us to something that can be more devastating to us than most.

I wonder how those people would feel if the shoes were on the other foot… How paranoid would they be if they’re own lives were lorded over by someone else. How they would react knowing the risks to themselves and having someone else take that risk so carelessly. Deep down inside, I’d be lying if I didn’t admit to wanting to show people exactly how that feels. I’m not cold, I’m just tired of people being so damn self absorbed and careless with their own actions. Tired of seeing others think it’s all a big joke failing to realize the domino effect they put in place with their own actions and how failing to realize how important it is to protect each other and build that trust, is the real foundation to a deeper relationship with others.

I don’t have all the answers. I don’t know what the truth of this situation is. I only know I have anxiety over the severity of it, the need to control those around me to keep my own life and my children’s life safe in the event that this virus is as bad as some say and the realization that some of those closest to me don’t have our best interest at heart. That’s a hurtful discovery. But at least now I know. It just makes me think, that if I had money and a bug out shelter in the event of a large scale SHTF scenario, my circle of peeps would be quite small. Trust. It’s important. Maybe think about what truly matters in life.

The Corona Covid-19 Virus Experiment… My practice run

Is it real? Is it fake? Is it as bad as they say it is? The virus situation has caused a lot of mixed emotions… I find myself ping ponging between intense anxiety about contracting the virus and complete calm wondering if the whole thing is being overblown… So much misinformation and lack of total transparency. With so much time on our hands while we socially isolate and spend time as a family, this situation has led to a lot of deep thinking and pondering about life and what if’s…

With this experience, I’ve decided to just treat the situation as completely real, very dangerous, and go along with the government mandates of social distancing as well as wearing masks/gloves in public and washing my hands so much I have to soak them in lotion.. I’ve also decided to use this experience as a bit of an experiment.. a test per say of an apocalyptic event with SHTF. How well does my family respond? Can I trust them in this kind of situation? Will they have my life in mind and the life of my children if it came down to it? Can I trust them to have my back and put our family first?

So many questions that have netted some sad answers and put me in touch with a harsh reality I wish I hadn’t discovered. Scratch that, I’m glad I know. I’m just not happy with the outcome, but now I know. Who can I trust if SHTF and our world collapses and people need to band together to have each others back? Most people don’t think about that kind of situation but history often repeats itself and the world is fragile and fraught with dangers and possibilities even while life goes on and people are absorbed in their own little bubbles unaware of how precious and precarious life can be.

Things can change in a heartbeat and it’s important to be aware of that and know how you and your friends/family, even neighbors, would respond and react in those situations and this virus experience has provided a nice little window into exactly that… How do your friends and family respond? Can you trust them to take this seriously and do what they need to protect you and your family while protecting themselves? Or do they act recklessly putting you and your family of danger? Something to ponder…

I am happy to report that many in my community have risen to the occasion and stood up to help their neighbor. So many working tirelessly to help get hand made masks to people, food to those without, whatever needs that are not able to be met are being taken care of by many in our community of helpers that have stood up to help those in times of crisis.

This is good to know. It is my hope that if the world really went to shit and we were left to fend for ourselves that our community would band together to protect each other in time of need. Of course there will always be those who rise up to take and seek to dominate and control. I just hope there are more of us and less of them if something did happen in our country and we could indeed band together to keep our area going and protected and strong enough…

This little window into an apocalyptic event situation has been enlightening and disheartening while also encouraging and sad. I know who has my back within my own circle and I have a little glimpse into how my community might respond to a bigger event. I know which family members take my life and the lives of my children seriously, seeking to protect us and keep us out of harms way while also seeing the ones in my circle who only put themselves first and show no care or caution to me and my children. I was surprised by the outcome.

I also learned beyond the virus, who in my circle still stands to maintain obligations and agreements during financial crisis and who has kept in mind all that’s been done to help them on my own families dime. Money matters is a delicate topic that can make or break many. What I’ve discovered about family in general, to include other situations besides my own, is that some family seems to think that because we are family, bills are not as important or pressing as would be with a typical creditor. This is disheartening as we all have bills to pay and even though some are in a better financial position than others, that simply means there are bigger bills to pay as most of us spend more rather than save as we should and live below our means. A lesson we should all learn from. Hind sight…

It’s been an interesting mix of results. Family A might have my back with the virus but not with financial matters… Family B might pay those debts but could care less about exposing us to the virus… Which family member has loose lips and which guards our meager resources? Which member helps to secure needed supplies? Which member makes sure to secure their own supplies so they don’t come looking to drain my families?

An interesting experiment during this virus crisis has opened my eyes to how family would respond during a SHTF event, answering those lingering questions about my circle of people if the world did go to shit. I can’t say I’m happy about the results but I am happy to have an idea of who would take our lives seriously and who would have our backs. What does the future hold with this current situation? Will life eventually go back to normal or are we forever altered in how our lives will be from here on out? It’s hard living with this uncertainty and not knowing what life will look like even months from now. For now, I will continue to play it safe, keep my eyes and ears open and gather as much data as I can. Better safe than sorry, right?

Covid-19 VS the Flu

This is how I see the virus situation in relation to the flu, if as bad as they report. The flu does kill a lot of people each season but the difference is that the flu spreads slowly over the flu season.

Of those exposed, only 8 to 11 percent contract the flu with well under 1 percent that die. So the exposure and contractility is low in addition to it being spread out over time. This keeps the hospitals from being over run by those sick with the flu. Cdc.gov/flu/about.

If the reporting is true in regards to Covid-19, the exposure rate of this virus is extremely high compared to the flu with those contracting the virus and becoming symptomatic also being much higher.

With the numbers we have so far, and this is ever evolving, of those symptomatic, 80% experience mild illness while 20% experience moderate to severe illness. This is largely different from the flu rates. In addition, from reports I’m reading, the 20% who experience moderate to severe symptoms are the ones who end up in the hospital, taxing our hospital system. Of those 20% the death rate is between 1 and 5 percent depending on where you live.

So to recap, with less that 12% that contract the flu and less than 1% who die from the flu in addition to the slower spread over the season, this current virus could be much worse on our system and on our people due to how quickly this spreads and how high the rate of hospitalizations and death are in such short times.

Also the flu typically lasts 3 to 7 days. This new virus apparently lasts 2 weeks or longer with some having permanent lung damage and taking 6 plus weeks to gain strength back.

It’s odd how it largely affects the elderly and those with chronic conditions, vastly different from the flu which is dangerous for our young.

So if the situation with Covid-19 truly is a pandemic, the dangers to our society and hospital situation is largely that 20% who require need of the hospital and that need seems to require much longer times in the hospital compared to the flu as well as how large the exposure rate it compared to less than 12% with flu exposure.

Stay safe. Please share your thoughts in the comment section as I’m curious to what others feel about our current situation and if my post seems accurate to the situation at large.

The Day the Toilet paper sold out…

I realize how fragile our society truly is. How many of us live with fear just under the surface hidden by a false sense of security or calm. The day the toilet paper sold out speaks volumes.

Our country was sold out on the backs of hard working people to a group of corporate sponsors and money hungry vipers. Cheap labor overseas, corporate farms, pesticides, vaccines, yes vaccines, cheap polluted medicine, and parts from other countries that fall apart in short order.

It was good once. Barbie dolls were passed down to our little girls, foods fresh from local farmers and furniture that lasted for generations. We were healthier without as many chronic conditions polluting our bodies.

We’ve become a cesspool of toxic poison and broken parts all in the name of few at the expense of many.

I’m awake. Are you?

Our medical system failing in time of need, compassion going out the window, our world is waxing cold all the while people horde the toilet paper in a crisis and leaving a populous confused. Who would have thought… toilet paper?

The mad dash to empty stores of basic necessities during the calm before the storm shows how fragile our society is, the fear under the surface, the paranoia of what’s to come. Jesus, come quickly, our world needs to change, to be cleansed from the greed and uncertainty, the pain and the sorrows. We need to reset.

I don’t know what tomorrow brings. Will I survive the virus? Will there be food enough to feed us in the coming weeks and months? Will the fragile world fall apart and be broken into pieces or will we pick ourselves up by our bootstraps and say no more? No more greed, hate, broken systems,leaving people to suffer.

Fix our health care. Fix our government. Bring back our workers, farm to table, real goods, the way it use to be where we can be proud of what we bring to the table. Fix this!

No more wolves in sheep’s clothing, smearing the truth, the way, and the life. Bring the light back and let us see through the darkness. Let us see. Wake up!

Quit hording the toilet paper!!

Failures of the medical system….Why They Hit the street, taking medicine into their own hands

(The title may seem misleading at the moment. By the completion of this article, it will make more sense. This is a work in progress. ) While working on this article, I’m publishing early to allow for comments and ideas if anyone is interested in sharing to highlight the issues with our medical system. I can only share my own experience and what I’ve witnessed. So if you have anything you want me to mention that needs change, please comment so I can look into it and possibly add to the article.

Our system needs to change. It’s not working for millions of people and lack of awareness of the brokenness of our system isn’t helping. Repeating the same mistakes isn’t helping. Even with studies highlighting some of the issues leading to this disfunction change is not occurring.

I want to change the system. I want to bring awareness to some of the problems within our medical system and highlight some ways to bring change so we can avoid making these same mistakes that lead patients to taking things into their own hands; to avoid leaving patients in pain, limit their suffering, offer support and fix the errors that lead to confusion, dismissals and lack of care, especially to patients who don’t fit into neat little boxes. And maybe to bring attention to the fact that too many of us are suffering from chronic illnesses and conditions that aren’t as rare as they purpose.

I want to share my story and my son’s story as well to highlight the difficulties and challenges that have led to a breakdown in patient care. My story is not unique. I’ve discovered so many of us who suffer the same. This should not happen. We need change.

Textbooks are great for basic knowledge. But textbooks lack an essential component to doctors who treat or come upon patients suffering with unique symptoms or simply chronic conditions. What I’ve learned, simply by joining patients groups for various diseases and disorders, is that no two patients are completely alike and that textbook knowledge doesn’t come close to understanding what it is that patients suffer with on a daily basis which leads to a great misunderstanding and often dismissals of patients concerns. For example, I was once told, “MS doesn’t cause pain,” by a physical therapist. Join any Facebook or community group and see for yourself how many MS patients suffer with chronic pain, as well as how many have been told what I was, “MS doesn’t cause pain.”

We need a website set up for each disease or condition. A database that patients can access and share their symptoms that can be cataloged and graphed. It can have oversight and a team set up to verify information, diagnosis, ect. A separate site can be set up for those undiagnosed to share symptoms and other information. There’s a lot to go into it but it can be done and managed with access given to researchers, doctor’s, patients in some form or another. A section set up for patient chat with the understanding that researchers and doctor’s can have access to read, monitor and understand the day to day life of patients who suffer with whatever they specialize in so they can draw a better understanding beyond what the textbooks teach. Researchers and textbook writers can then take this information to expand upon the current information being taught in medical school. We need to get rid of the idea that doctor’s should always assume patients are horses, ignoring the zebra standing in front of them. We have way too many zebras in our world today and many of us are not being seen, heard, understood or taken care of.

This is a work in progress. I plan to edit and add to this blog as I go until I determine how I want to proceed in shaping and sharing my story. I thought about simply saving it as a draft but decided to publish it for now to allow input from anyone wanting to share their ideas, struggles or their own story.

It may take me a while to bring this to completion but it’s my goal to do just that. Being disabled is tough. In addition I’m taking care of a child who has his own disabilities.

Parts may be written offline and incorporated later. Eventually, I’m looking to publish this work and advocate for this change our medical system needs.

Dying… One day at a time

I’ve been sick a long time. As I’ve navigated the medical system trying to solve all the pieces to the puzzle, I’ve been left adrift at sea, floating aimlessly towards the waterfall taking me over the edge and to the other side. Unfortunately, doctors don’t seem to see the waterfall in front of me.

My body is falling apart. I have so many health issues taking my body in different directions but one in particular is driving me downwards on this spiral towards death that I feel deep in my gut, my heart, and my mind and yet I don’t think the doctors and specialists have an inkling of how serious my condition is or even a true understanding of what I’m suffering. I can only feel it as I fight the system, begging them to figure out what is tearing my life apart.

It’s not my ME/CFS causing this spiral. It’s not my connective tissue tearing me apart. Fibro doesn’t escalate. In 2015, I began to experience body wide vibrations which feel akin to holding onto an electrical current that pulses through my body at various intensities. It’s not left me since it first began though at times it’s barely perceivable. It’s either an issue of the muscles or the nerves but not one answer has been forthcoming. At it’s strongest, it’s been felt by others in my thigh muscles, where it seems the strongest.

In addition, my legs became like jello with heavy weights and difficulty in moving them. That feeling is not as bad as it use to be and seems to have gotten better. I’m left with fatigued muscles and a perceived slight weakness in my legs. I developed weakness in my hands as well. Not terribly, but enough to notice as I drop things much more often and don’t seem to have as much strength as I use to. I had a tremor at that time which has since disappeared only to rear it’s ugly head every now and then. Shaking in my legs that are visible and annoying that comes on out of nowhere to simply disappear once again.

I do have something neurological plaguing me. My feet lack sensation. My legs and hands go numb or tingly and I’ve had burning sunburn feeling for months in my back, a warm liquid sensation down my legs, burning patches on my skin, cold ice sensations in the back of my head and random neurological symptoms that come and go out of nowhere. The pain is body-wide. The pain and fatigue rule my life like no other. Pain in my muscles, my joints, and what I can only explain as a raw nerve like pain which predominates in my lower back, hips and legs.

My gait changed on me several years ago. It’s like the signal in my mind did not match the signal in my body. My mind tried to walk at normal pace but my feet did not operate at that speed and I took a few falls. My legs don’t seem to want to take the fast large paces I’d been accustomed to as I now walk with a short slower shuffle. It’s odd. When I try to walk faster, I can trip over my feet. The pain in my hips, thighs and butt has been severely intense requiring around the clock pain meds in order to function. I can’t stand long nor walk far without the pain increasing.

I developed faciculations about two years ago. Predominately in my thighs and butt muscles. Last year around August, I started dropping weight. In addition, my butt muscles atrophied. They’re gone. My round bulbous fat booty is no longer. My skin sags off my backside and I’m flat and unsightly back there. The fasiculations continue. On occasion, they have moved to my mid spinal area on the left side. I developed pain there shortly after. My back muscles feel weak. My shoulders and neck are weak. It’s hard to sit or stand unsupported. I’ve not had many fasiculations in the upper body though recently started them in my right arm in the back with a single muscle that flared up in pain. Will I atrophy there next?

Back in 2015, I developed cognitive dysfunction. Words were coming out backwards, memory issues, and brain fog. I told my hubby something was wrong with my brain. They found lesions. Only three small lesions, two in the frontal lobe and one in the occipital lobe but tiny and nonspecific. No answers were forthcoming. Though my speech has gotten better, my voice box is not the same. My voice had become more horse and deeper than it had before around the same time as my memory issues hit. Recently, I’ve had a few minor episodes of losing my voice momentarily. I developed a cough around two years ago. I am a smoker so there’s that.

I suffer from internal spasms. Colon spasms, diaphragm spasms and esophageal spasms. I can choke on my own saliva. This too got worse a few years ago. It seems to come and go like a roller coaster ride but the difficulty in swallowing is more consistent, there are period where I can ignore it as well as periods where I can hardly eat. Last year, I started dropping weight. I lost over 15 pounds in a few short months and from then, 135, to now 110. I have difficulty with my appetite. I don’t often feel the sensation of hunger. My bowels don’t often feel the sensation to defecate though I feel it at the sphincter area, not in my abdomen. Sometimes eating causes pain and or nausea. It’s hard to eat much and I get full quickly.

I just recently had surgery both exploratory and a hysterectomy. The doctor found endometriosis and removed it along with adhesion’s on my liver which were removed. The shocking part, during exploratory, he watched as my bowels danced in front of him, on their own accord, something he’d never seen in his many many years as a doctor. Even under anesthesia, my bowels had a mind of their own and they spasmed over and over again. I can only be thankful this was seen so that I can get a write up to share with my gastrologist who has yet to dig deep into my digestive issues. I feel no one has really taken me seriously thus far. Symptoms of pseudo-obstruction or volovus which I’ve mentioned yet no scans were ordered for me..

My surgeon, upon meeting with me during recovery, immediately mentioned my need for a neurologist. I’ve seen three already…. He gave me a suggestion and I realized it’s one I’ve researched prior and tried to see but was denied a few years ago. Maybe now, with his recommendation and write up, she’ll accept my request. Will I finally get answers to the neurological part of my health issues that have plagued me for so long?

Is it one progressive condition or two separate conditions due to the length of symptoms over 20 years and recent seriousness or change over the last 4 to 5 years.. I don’t know. I do know I’m progressing. I feel my body dying and yet the doctors around me are oblivious of my plight until I’ve hit the anger stage and simply told them straight up, “I’m dying.” That’s a huge risk given how often we’re accused of being ‘hysterical’ “somatic symptom disorder’ or simply ‘overly anxious.’ But I’m simply done caring what they think of me mentally, something that bothered me greatly before. Now, I just want some damn answers. I need help. I AM DYING. The roller coaster ride has had a downward trend over the last several years and the progression is noticeable.

It’s fatiguing to talk. I can no longer sing without serious exhaustion. My body is tight and painful and never seems to truly relax. My thigh has spacisity. My butt is atrophic. My spasms persist. My inability to hold myself up without fatigue and pain has intensified. I’m uncomfortable in my own skin. I am in pain. I have lassitude.

The system is slow and uncaring. Prayerfully soon, I’ll get answers. Since surgery, I’ve had this insistent clicking/clunking in my sternum/chest area. My hubby can feel it and I can hear it. It’s bizarre! Is it my sternum due to my connective tissue disease or my mitral valve? Is it diaphragm spasms? The hiccups are constant but an issue I’ve had for a while now. The clicking is new. I’ll mention it to my doctor during my follow up. Just another annoying symptom to add to the list of many. Will I get answers? Will I ever know what ails me? I’m starting to think I won’t….

When the lights fade out..

There are just some people in life that touch your soul. A good neighbor once lifted my spirits and created her own little place in my heart. She was a special light that shinned brightly. Some people’s light stay with you in life. Whether you talk to them all the time or just on occasion, keeping up with each other through social media but never turning out the light on a friendship that was meaningful. She was that person.

Her big heart, compassionate soul, and love of her neighbors, a trait we’re losing in our day and age. I’ll never forget the meals she made and brought over, just so we could try something new and eat, leaving me recipes that still get used to this very day with a smile as I think of her. The ‘welcome bear’ given to us as a parting gift when we moved, once again, that still sits on my porch, HOA be damned, to welcome those to our door. She was a special neighbor. Her love for her husband and kids shinned to those around her. She had so much passion and spunk.

Never timid, outspoken, and straightforward, my kind of person. She was a fire cracker, a momma bear, and an advocate to those around her. She was never afraid to speak her mind and be herself through and through, no games, no deception, what you see is what you get and I LOVED that about her. She helped make some of the best two years at a place known for one of the highest divorce rates in the military. A barren land filled with cow shit and flies, we pulled together as a group and made something out of nothing and survived those years with warm and love surrounding us. Creating community and togetherness in a place many succumb to out of isolation and the stink that attaches on tight and can pull you into a place of dark depression. That truly was one of the worst bases to ever be stationed at.

It’s the people that make all the difference and she was one of those people. Not one to let the muck and mire get her down. Her family became my family as we looked out for one another and knew we had a trusted person if ever in need. But as is the military way, distance separated us but social media kept us together. We all get caught up in our own lives as time passes but the heart remembers as we touch base and root for each other in life.

That special light faded and went out way too soon, taking a small piece of my heart with it. I hope she realized how special she truly is to us. How touched we were by her and her husband. How deeply sad and moved we are by his loss, our loss, her family’s loss. She truly was, one of a kind, a gem, a friendship to be treasured.

I spoke to her a week before her passing and I knew things weren’t good. I didn’t realize how bad they were and her loss so quickly took me by surprise. My heart grieves. My husband’s heart grieves as we recalled all the good times we had. As we shared her memory with my family as we remembered her with love and fondness and celebrated her life (and her husbands, can never leave out that special gem too), but with a deep ache inside as this one truly hurt. I don’t make many friends. I don’t have a long list of those who really touch my heart and hold a special place. That list is short and she was on it. I’m socially awkward and a bit closed off emotionally. I’m too open and honest and that can turn people off. Maybe a good part of why she was so special to me as she too was like this but with a booming personality and without the social awkwardness I carry with me. As I told my husband, with her, I could be myself. With her, I never felt the judgement or irritation for simply being me. She embraced me as I am and I will never forget that.

She will truly be missed. Makes me want to reach out more to the few I hold close to my heart but may not know how much they mean to me. Too many walls and insecurities built around me, protecting me from the hurt so many have caused. I think I will reach out to them and tell them while I have them. Life is short sometimes, don’t waste an opportunity to let someone know how much you care. Hug your family. Hug your friends. Don’t waste time dwelling on the past, worrying about the future, but make time for today as we’re not guaranteed tomorrow.

My friend, your light shined so very bright and you touched my heart and left an impression that will never fade. Your memories live on and I will cherish them. Goodbye my friend. Till we see each other again.

My Battery’s Broken, Please Understand..

Many have heard of the spoon theory analogy for our chronic illnesses, but when I think of how to describe my illness, a broken cell phone battery comes to mind.

On a really good day, it charges most of the way up but typically it’s less than half way full. Simply using the phone, eats the battery up quickly and it takes forever to charge up again.

On top of that, the charger has some exposed wires that causes shocks and jolts of pain if I’m not super careful when using it. My apps are slow and sometimes they don’t work. I can’t rely on using them.

I feel that my pain and exhaustion is not understood fully. It hurts to get up, it’s exhausting and painful to stand and every little bit of energy I store up, I would like to use for myself to catch up on the long list of things waiting on me. Every time I help someone, I’m using up what little battery that I have and so it puts pressure on me and makes me angry because that’s one less thing I can do for myself.

I use to be the rock, the one everyone looked to to help them out. Now I’m the one that needs that help and yet I’m still being looked at as that rock and they fail to see that it’s been broken into little pieces. No matter how many time I try to explain this, how many times I’ve broken this down, it seems to go through one ear and out the next as I’m looked at expectantly, once again, to attend to even simple little tasks that can be handled themselves.

Talking is exhausting! It’s actually easier on me to type than to have a conversation. I’m not mad at you, ignoring you, or even rude. It simply exhausts me to carry on a conversation and try to pay attention to what is said to me. Please keep it short! When you drag on while telling a story, inside I’m bouncing up and down screaming hurry up and get to the point!!

I’m not trying to be rude, I just can’t pay attention that long and I’m feeling restless and just want to go lay back down. And when you cut me off to ‘hurry up and say something before you forget,’ you’ve just made me forget what I was trying to say in the first place.

Yes, there are days that I can carry on a conversation and feel normal for a while but please pay attention to the signs! If not, don’t be upset when I tell you I’m not feeling chatty at the moment. My processor is running slow right now and my fatigue and pain are at the forefront of my mind.

I HATE to cut someone off and make them feel unimportant or that I don’t care or want to hear you. I also want to be heard and know that you KNOW ME and can see when I’m tired and distracted and not feeling up to being warm and cozy at the moment. Understanding this shows that you truly understand ME and that you care about how I’m feeling.

If you know that I’m ill and you tell me that you don’t want to put any more work on my shoulders because you understand, then please clean up after yourself and not leave a HUGE pile of stuff for me to clean up after you when you leave. That’s really really insulting. (still holding a grudge).

Every little thing you can do to help me, truly helps me. Even the simple things. I do notice, you don’t have to point it out to me. I’m sorry I’m not vocal in praising you all the time.

I know it doesn’t seem like a big deal to you, but when you want something done, please don’t expect me to do it for you especially if it’s not even my task and it’s something you can do yourself.

If your doing a task so I don’t have to, please don’t have me walk you through each little step. At this point, I might as well have done it myself. It cost me energy and takes off one of my own tasks on my list when I have to get up and stand there and speak and use my brain. I wish you understood this!

Living with a broken battery is tough enough. Add cracks, exposed wires, faulty apps, and that’s my life with a chronic illness. I rather it not be but that’s the cards I was dealt so I have to make the best of it and pace and get help and worry only about the big things while trying not to sweat the small ones.

Every little thing you take off my plate, helps me. Every little task you add to my plate takes a little more of the remaining battery life I have left for the day. Please think about this before seeking my help especially if it’s something you truly can do yourself.

Please be mindful that I might not be chatty and talking does take a big chunk of my energy bank. Keep it simple and to the point unless you know I’m having a good day and am engaging with you. Please pay attention to those signs which shows me you listen and you care. Living with a chronic illness is a daily struggle, it’s not something we can just get over or plan for.

The Talking Head..

Many years ago, when my health was a beautiful thing, energy abound, optimistic in life, my future ahead of me, I sat at a pond on my dad’s property, late at night smoking a joint with a dear family member. We had a case of the giggles talking and laughing till we were out of breath. I remember distinctly hearing my family member joke that he was a talking head. That name stuck with me.

As illness took hold of his body, later in life, that night often floating through my mind and I wondered if these were prophetic words of what was to come. In the end, it was me. It was me that became ‘the talking head’ as ME/CFS and other illnesses ravished my body and left me on my back watching life pass me by as I was sucked into the abyss of chronic pain and fatigue. Weighted down by the forces of gravity like sand bags attached to each limb, limiting my ability to function…

Letter to Pain Management

I don’t know how to articulate my feelings and experiences in the small amount of time that we’re allotted.  I wish I could take you home for a few days to see exactly what my life is like and what I go through. It’s not obvious in a half hour appointment where I’m simply sitting there and chatting. It can’t even scratch the surface.

A recent blog post of mine:

I’m tired of dying every day and being uncomfortable in my own skin. Of watching the light fade from my children’s eyes as another mention of “not right now” whispers through their ears and the ensuing frustration and defeat that washes upon their faces… my kids need me now. My hubby needs me now. My mother needs me now. My family needs me now. Tomorrow might not get here and time flies, moments pass, needs go unfulfilled looking for outlets and something to fill the void from avenues best left discarded.

I remember those times. My children are there now and yet I’m here, I see, I know, but I’m not present and I see this being fulfilled while my body falls apart and my mind wants to spiral. To be so dependent on a stinking little pill to wash away the pain and fatigue yet such controversy on something so tiny that gives me life in a way few will understand. No high needed or received, just relief, blessed relief from the torture my body inflicts upon me. Some days, not near enough, leaving me so despondent, I rather wither away and free my family from the burden I feel I’ve become.

The negative thoughts and heavy weights weighing them down like a chain around their necks in a sinking ship lost at sea. To free them. To free myself. To put an end to the drain on this life and allow healing to begin and forward movement on their own journeys this life will bring. May they never be saddled with these illnesses that grip me so tightly, squeezing the life out of me. But it’s heritable. It’s the gift that never seems to end. One generation to the next. My burden, my cross to bear laid upon the shoulders of my tender children and the guilt that consumes me because of it. My fault.

So, I have a heritable connective tissue disease.  Not a drug seeker, an overly anxious pans positive female, somatic symptom disorder, attention seeker, no, I have a disease. I’m an actual Zebra amongst horses with a rare disease that finally explains all of the health issues I battle. 19 years of wondering what’s wrong and 12 years wasted when a prior doctor recognized the connective tissue disease, documented it in my record, but never told me and never sent me for further testing to finally put to the bed what ails me. I could have avoided so much misunderstanding, so much frustration, not knowing what truly is causing all the health issues I’ve been fighting.

It’s frustrating that my life revolves around a little pill. But that pill works so well, when at the right dose, that it gives me a few hours of my life back and my ability to tend to my household, my kids, my family. I can’t remember the last time I cooked dinner as I have terrible lassitude and am usually done for the day by 2 to 4pm.

Researching Ehlers-Danlos (the probably type I have), it can indeed lead to severe pain and that pain can be for life as it’s progressive and gets worse over time. It’s only symptom management as there is no cure and no treatment to make it better. I’m still trying to wrap my head around this as I’ve always had hope that one day, I will reach remission. One day, I’ll have my life back for a little while, but these last 5 years and finding out what truly is going on has shown me otherwise so I’ve been stripped of that hope of remission and I’m not sure I can handle that if that I don’t have relief from the pain and fatigue that weighs me down and runs my life. It is severe. I look so normal and so well, but inside, I’m falling apart and crippled in pain. I’m on my butt or back 95% of the time.

Occasionally, I get a good day. It’s happened only one time this entire year. I played catch up and worked on my garden, a task I’ve always taken delight in. Oh how badly I’m paying for that day. That’s my life.

I cleaned part of my bathroom the other day and paid for 3 days from simply cleaning my mirror, counter, toilet and tub. A task often neglected until my hubby can get to it or my daughter surprises me and cleans it for me. Summer is always better on my pain symptoms but much worse on my POTS symptoms but 6 months out of the year has been the most miserable years of my life and I’m not sure I can handle another winter without the pain relief. It’s hard to hold on to life when my quality of living is in the toilet and the pain consumes me. I know the market is volatile right now. There are groups out there fighting for us. Fighting for our rights as chronic pain patients to live as comfortably as possible while struggling with chronic pain. I’ve exhausted my options and found what works best for me on multiple levels as it helps my IBS-D, bladder, pain AND fatigue. I really am the rare patient when a pain med, which makes others sleepy, actually helps my fatigue and gives me some energy to keep on pushing through. I’ve been at the same dose for a long time now. I haven’t built a tolerance, but my pain has gotten worse. This is my life and all that I have to look forward to. I need to know that my pain can be managed. That I can be as comfortable as possible at least while my kids are young and need me now.

I’ve read that, as a palliate care patient, writing “palliate care” on the prescription should exempt a patient from the ‘recommendations’ given by the CDC. Hopefully soon that will change for all pain patients as we should never have to live in severe pain without relief when there are medications for this very thing. I just wanted to share what is hard for me to articulate in person. This is my life.