My Mental Health Update

It seems like forever since I wrote about my mental health/illness/disorder. I guess that there’s so much else going on that there as been little time to write. But today I’m sitting on a flight to Montreal with not much else to do. So I guess this time gives me the opportunity to do a little mental health update.

Most days I must say are fairly well, I have certainly improved since moving to CBS. Not that life as gotten any easier but I think I’m at a different stage of my recovery. Notice I said, ‘recovery’ not cure. I know my diagnosis is a chronic, clinical depression and anxiety disorder to which there is no cure. By recovery I am referring to a more functioning level whereby I am in more control of my illness then it is in control of me. I guess you could say the tables have turned to some degree. This has certainly not happened overnight but over months of hard work, therapy and self discipline. I have had to work intensely in every area of my life; physically, emotionally, mentally, spiritually and psychologically. Finding a balance in life and not forgetting about my own self care. Sometimes in our lives we forget to take care of ourselves when we are so busy taking care of everyone else. This is not at all being selfish but realizing that in order to take care of others we have to take care of ourselves first.

It was probably about a year since I had a panic attack, what I would call a full blown panic attack; the kind that frightens you to death. It happened on our last trip to Montreal, during Lauren’s trial baclofen surgery. I was abruptly awakened from my sleep at about 5am by shear panic, the kind that puts you into a fight or flight response and I was in flight mode. I just wanted to run but run where I had no idea. I tried to talk myself through it but it was not working, which only made the attack to escalate. I knew I had to do something and fast, so I jumped into a cold shower. And believe it or not, it really did redirect my thoughts and reduced my panic tremendously. But thankfully I have not had another one since that night. And that’s the scary thing about panic attacks; you never know when one can strike and how long it can last.

Right now I am so thankful that I am doing as well as I am. And I will take what I can get and enjoy the good days to the fullest, live in the moment as best I can, the past is gone and the future is not here.

Let’s Talk

Mental health matters and so does each person with a mental illness. We are not  alone, 1 in 5 Canadians suffer from a ,mental illness of some form or another, I believe that over the past few years, especially during Covid, that we are in a mental health crisis. Mental illness has no respect of persons, no one is exempt, no one! Mental illness has touched the lives of all of us, whether that being ourselves directly or someone we know.

Today is “Bell Let’s Talk” day. So, let’s talk! My name is Harris Tucker and I suffer from a mental illness! I have nothing to be ashamed of, nothing to hide; I have an illness, it’s that simple. No need to be stigmatized, no need to be misunderstood, no room for prejudice, no need to feel alone. This is why I have talked about my illness with openness, transparency and truth; hiding nothing. My advocacy for mental illness can be found on my website at www.harrislisa72.com and also through my book, “Beyond The Door, My Journey Through A Lifetime Of Mental Illness”, available through Amazon.ca. It’s through both of these avenues that I have shared my story, my life and my experiences with;  major depression and anxiety disorder. Bell’s campaign, ‘Let’s Talk’ certainly motivates us all to share our story. How else will others know and understand what mental health is all about, if we don’t  talk about it?  So let’s talk and talk some more, let’s never stop talking. And eventually the walls of stigma will come down and all those who are suffering, will suffer in silence no more but will talk of their illness has free has talking about any physical illness.

In the last few months I have worked on my mental health so intently because if I didn’t I would once again end up in that dark hole with no end in sight. I have to give some credit for my improvement to my medical team; my family doctor, my psychiatrist and therapist who have so caringly given me the tools and encouragement that I needed to get to where I am today, which is a much better place. A place where I can find some light, a place of hope and a reason to love myself and live, in spite of my  mental illness. It’s been a long journey back to a form of recovery, I know I’m not cured, there is no cure, but I am so thankful to be able to say that I am at a better place then I have been in years. And much appreciation also goes to my family and my heavenly Father who have walked this journey with me and have never left me and I’m sure will continue to walk with me.

I am especially drawn to those who suffer with depression and anxiety because I know how they feel, I get it. I have been where they are. But I want to tell you now; no matter how dark the day – there is light, no matter how hopeless you feel – there is hope, and no matter how worthless you feel – you matter, you are worthy! Just hang in there; after the darkness comes the dawn. The light will shine again!! I know because I have been there!

Tomorrow Will Be Better

I can’t believe that today is December 1st and before we know it it’ll be Christmas once again. Time seems to fly no matter what. It only seems like yesterday that I wrote my last blog entitled, ‘ A Relapse?’ I have hesitated to write an update to that blog simply because I wonder: why? Why bother, why take the time to write, why make my illness an open book for all to see and read? And in so doing opening myself up to judgement by others, being stigmatized, misunderstood and exposed to much prejudice by those who don’t understand or just don’t care to understand. But then I remind myself, I do this to help others, especially for those who suffer in silence, to those who don’t have a voice because it’s through speaking out and sharing our own experience with mental illness that others will begin to understand and break down the walls of stigma. So here I am again with an update on my mental health status after my relapse.

A couple of months ago I realized I was relapsing when I started having panic attacks, I lost interest in doing anything that once brought me such joy, not only did I lose interest, but I lost the motivation to do them. These were sure signs that I was rapidly spiraling down a dark hole, a place that I could not visit again. So began the hard work of keeping myself from going any deeper into this dark hole. I was determined to fight this beast with every ounce of strength that I have in me.

In my last blog I introduced you to my plan of attack. First I had to admit and realize that I needed help and I had to reach out to others who could support or give me direction I needed to take to overcome. My family doctor, my psychiatrist and therapist gave me the tools I needed, now it was up to me to do the work and work I did!

Once the kids were off to school, my work began. No matter how cold it was outside, I pushed myself out the door and went for a 30 minute walk. Now to those who are well this doesn’t seem like much but to me this seemed like a mountain, a marathon. I also practiced mindfulness and meditation throughout the day; I constantly reminded myself to stay in the moment. This also may seem easy to do but for me, it was near impossible but I had to do it. It’s now been about six weeks since I started my uphill journey to getting well and by well I don’t mean cured; I wish! By well I mean being able to feel in control of my mental illness and not the other way around. There’s nothing more scary then feeling you are not in control of your own well being and life. I have already accepted the fact that I have a chronic illness, not unlike any chronic physical illness, where both need constant medical attention.

Today I’m feeling hopeful, I haven’t had a panic attack in about two weeks. I know I have a long way to go but I find hope in the little things; each small improvement is a milestone for me. So it is with great determination that I keep moving forward and upward. That I make the best of each day, one day at a time, weather that be a good day or a bad day. If you are struggling today, don’t give up, keep fighting, tomorrow will be better!

 

A Relapse?

When I finished writing my book; my story did not end there, my struggle with depression and anxiety continued. I still continue to blog my journey at www.harrislisa72.com. I write as therapy for myself, a means of helping others who struggle and also a way of challenging those who may not understand this illness. This blog will take us down the road of the last few months of my painful and frightening journey.

A relapse? Oh no, that cannot happen and will not happen, I won’t let it happen. Weeks have gone by and I’ve really struggled; I mean REALLY struggled. To make a traumatic experience even more traumatic; I now experience something I feared for years now, that would be panic attacks. They are so frightening, making you feel you are losing ‘it’, you are losing control, your body temperature rises, you break out in body sweats, you panic; really panic…. you cannot breathe. You want to run! But run where?  I have learned so much over the years about panic attacks, that I thought I had them under control but I was wrong. Here I was in a full blown panic attack, how could this be happening? After all, didn’t my medication have this horrific symptom of depression and anxiety under control? Now I was really afraid, afraid of returning to an hell I knew I would never survive again.

Life was tough as it were, every day a struggle, every day a challenge. Nothing came easy and I was fighting for my life as it were. I certainly didn’t need anything else to make it even harder. My mornings became my nightmares, I dreaded for my eyes to open, given my present state I didn’t know how I was going to make it through another day. But I knew I had to, there were people depending on me, especially my two children; who became my will to live. Consumed by my depression, anxiety and now once again my panic attacks. I have to survive, somehow.

My nights have become my reprieve, it seemed a cloud would lift once evening came and darkness settled in.  I felt if I made it past daylight then I had survived another day. I longed for bedtime, for I knew sleep would help me escape this never ending battlefield of my mind.

So how do I survive? I have to believe I will get well; I done this before and I will do it again. Please God! You have to talk to someone, don’t suffer in silence, so I tell Lisa (my wife) what’s going on. Then it’s back to my psychiatrist who increased my effexor from 300mg to 375mg and just hope that this increase is going to work, now it’s a waiting game. But while I wait it doesn’t end there, I visit my family doctor who orders bloodwork to make sure there’s nothing physically wrong that can cause these symptoms. Next its finding a good therapist, which I did, and now starts the cognitive behavioral therapy once again. Has scary as all this is for me I know I have to keep moving forward, being gentle on myself and taking baby steps. To help my progress I also go for a 30minute walk, I do a lot of self talk, self affirmation and just believe I’m going to be okay.

This journey has been anything but easy. I have to believe there is a higher power that is going to walk this journey with me because there is nothing that feels any worse then feeling you are alone. With my family support, medical support and spiritual support; I WILL SURVIVE!

 

Every Life Matters

I often thought throughout my lifetime that there was something that was just not right. Even as a child I had emotions and thoughts that a child need not have. I would worry over the least little thing, I would often cry myself to sleep; but why?  Anxiety flooded my being, even when I didn’t know what anxiety meant. Behind those big brown eyes, there lived a child in despair, a child dealing with what should only be adult worries and concerns. Looking back over all those years, I realize today that I struggled with a mental illness, even then as a child, I suffered with a broken mind. And sad to say, that little boy still struggles today. There was never a cure, never did my wounds heal and what did heal left unimaginable scars.

Fifty-seven years have come and gone, yet today I’m still struggling; fighting an illness that is genetically hidden in my DNA. Not unlike someone that was predisposed to some other neurological, physical or psychological disorder/disability. I may not be confined to a wheelchair, but none the less; disabled. Depression and anxiety changes who you are, the person who I was is long gone. Now I have to accept my new ‘normal’; a normal that is so far from anything but ‘normal’. A normal that I hate but so far out of my control. I struggle so much just to do the simple things, that once I just took for granted. Just driving my car, the anxiety that creates would stop me from driving at all; if I let it. It may not stop me but it sure limits to where I can drive. Then there’s the anxiety of being in a crowd, I can’t breath, I’m overwhelmed, but no one knows because they cannot physically see what I’m feeling inside. Those are just two examples of what someone experiences who struggles with an anxiety disorder, and believe me there are lots more.

The news came once again recently, that someone I knew died by suicide. The tragedy in all of this is not only the passing of this person but the stigma, the shame and the judgment that comes with it; and that’s the biggest tragedy of all. We are so quick to pass judgment, when in reality that is not our place to do so. Majority of people that die by suicide are certainly not in the frame of mind to make such a decision if they weren’t suffering from some form of mental or neurological disorder. The disorder has changed who that person really is and was before their illness. So please let’s not judge anyone, because no one is exempt, no one! But let’s console those who are grieving, and allow them to grieve with respect and honor , without shame or embarrassment. That would be the thing to do, every life matters, so be kind and compassionate.

So today I live on, I fight with all that is within me. I try to help those who are struggling themselves, to help them see that maybe tomorrow will be better, just maybe.

Today is a ‘GOOD’ Day

Ten years have flown by since my mental breakdown in 2012. And for those years I cannot recall having what I could say was a ‘good’ day. Everyday was a struggle, everyday a fight, everyday a battle to just survive.

The past couple of months had me in a frenzy, I was in a state of panic, a fear that I was getting worse or even on the brink of a relapse. I knew I had done everything possible to keep my mental health at a functioning level but I realized I was loosing this war once again.  And I was heading back to hell but I was determined never to go there again.

So I took matters into my own hands and realized what I had to do at this point to prevent a relapse. I wasted no time in making an appointment to see my doctor. I sat in her office and unleashed my bent up emotions and talked to her about every thought that was causing my brain to race like an hamster on a spinning wheel; running but going nowhere. She listened with an undivided attention, soaking in every word. She was listening!

Once I was done my ‘speech’ and looked at her with the eyes of a dying puppy; she knew I needed help, I was desperate. My heavy eyes told a story of horror and hopelessness. But she reassured me that it was going to be okay, that there was hope. Her advice to me was to first start by increasing my mirtazapine, which I had no objection to. Nothing else was working for me and I was totally helpless, drowning in a sea of despair. But this was going to be my first plan of attack; to increase one of my medications.

Two weeks went by, I felt nothing, no change either way. I knew deep down that this wasn’t working. After a little over three weeks I could take it no more, something else had to be done. Once again I made a virtual appointment to talk to my doctor again. She knew before I could even tell  her that this wasn’t the answer. The next tool from her toolbox was to add another antidepressant (Abilify) to my already existing maxed out Effexor; I was at the maximum dose that a patient could take. So she decided to cautiously try me on a very low dosage (2mg) of Abilify. I hung up the phone and prayed to God to please let this one give me at least a little relief; a little was better then none at all.

To my amazement and optimistic anticipation, I felt something that I haven’t felt in years. I was and still am afraid to get my hopes up, to be hopeful because I have had my hopes shattered so many times over the past years. I will take this one day at a time. If I get a good day here and a good day there, then I’ll take it.  Anything is better then what I had lived with for the past ten years. But this medication seems different, almost like nothing I experienced before. It has settled my racing mind, maybe even giving me a feeling of hopefulness. But deep down I’m scared, scared that this is not going to last, that it is all just wishful thinking. But I  pray I’m wrong and this medication really is going to be my miracle, my light in the darkness, my sunshine in the rain.

Even if this reprieve doesn’t last, I will remember this short but amazing sense of freedom from my mind, even if it’s only for a few weeks. My heart is filled with so much gratitude and thankfulness that my cup overflows. Is my days of fighting this horrible illness over? I don’t know but today I’m having a ‘GOOD’ day and as the tears flow down my face, for once they are tears of joy. Like any illness, we are never guaranteed a complete cure; there is always the fear of it’s ugly return. But for today I’m having a ‘good’ day!

 

700,000 Reasons Why I Blog/Write

Summer surrounds me in all her glory, but why am I feeling the freezing cold of winter?  Why can’t I just for this once just soak in it’s brilliant rays, relax in the warmth of the summer season? The brighter the sun  shines, the more my restless mind spins out of control. Mental illness is fatal and I’m fighting for my life. Everyday, sunshine or rain makes no difference, I have to fight to calm this war within. I am tired, I am sick and tired of this disorder. When will it end?  When will this war be over?

Sometimes I’m so preoccupied with trying to help others that I forget to take care of myself. Most times I feel I have to be well because I have so many responsibilities and demands to care for others, that I forget I need to be well for me too. If I’m not well then how can I be of help to those around me, especially my sweet Lauren, who depends on me for most everything.. I need to be present for her. no matter how I’m feeling, a really bad day or not, there are no exceptions.

I desperately try everyday to be the best that I can be and lots of days I fall short. Mental illness has stolen so much from me that there’s so little of me left to give. But I do what I can with what I have. Writing as sure been one of my greatest avenues of expressing what mental illness is and helping to unleash my untamed mind. Sometimes I wonder why I even bother, are my thoughts and writing just falling on deaf ears. As this all been in vain?

What is to follow is a presentation that I was supposed to present at one of my book launches, that never happened. To say I was disappointed would have been an understatement. I wasn’t angry about it, I was hurt. For someone dealing with mental illness; this could have been the straw that broke the camel’s back. It was so easy for me to just give up, there and then. But I didn’t and here I am telling my story once again. You may say, “Why bother?” Well here are my reasons to not give up writing, maybe I can just help someone.                                                                                                                                                                           -In any given year, 1 in 5 Canadians experience a mental illness. (Centre for Addiction and Mental Health).                                                                                                                         -By the time Canadians reach 40 years of age,  1 in 2 have or have had a mental illness.                                                                                                                                                                                  -Young people aged 15-24 are more likely to experience mental illness and/or substance use disorders than any other age group.                                                                       -People with substance use disorders are up to 3 times more likely to have a mental illness.                                                                                                                                                               -June 17, 2021 – More than 700,000 people die due to suicide every year. (World Health Organization).                                                                                                               -Suicide is the fourth leading cause of death among 15-29 year olds in the world.                                                                                                                                                                                   -About 4,000 Canadians per year die by suicide – an average of almost 11 suicides a day.                                                                                                                                                             -Worldwide, every 40 seconds, a person dies by suicide due to depression!

These are reasons enough to write; to write a blog, to write a book, to share my thoughts and experiences on my mental illness. My writing will not change the world, but it will help change my little part of the world. It will make me feel; I have done my part. I have done something!

Imagine, just imagine you woke up tomorrow morning and you felt nothing but helplessness, hopelessness and despair.  Well that’s what it’s like for us who suffer from a mental illness, especially those with depression.

I’m not a doctor, I’m not a psychiatrist, psychologist, therapist, none of these. But I am someone who suffered from a mental illness for all my life. This lifetime with mental illness has provided me with a vast knowledge and experience that I would never have learned in a book or gained otherwise; I know first hand. Before you stands the face of mental illness. No masks, no put-ons, no pretending; nothing but the truth. The shameful secret. the silent killer, a broken mind. Total transparency! I cannot cure you, I cannot fix you but I can assure you that ‘I GET IT’ and you are not alone.  Remember everybody’s story is different. This is mine!

I don’t remember not being on an anti depressant medication for my whole adult life. I was 16 years old (1980) when I had my first breakdown. But in 2012 I had a mental breakdown that deemed me non-functioning, a walking corpse, crippled and disabled; not confined to a wheelchair but equally disabled. A brain that shut down, a body that refused to move. During the next few years I tried every medication out there, every cocktail of drugs available to the medical field. Nothing was working; NOTHING! ECT – Electro convulsive therapy was my last hope of escaping this living hell. But much  to my dismay, it did not work. I now had lost all hope of ever getting better.

I kept pushing forward, I had so given up on life. I did not want to live, this illness had taken away my desire to live. This was not living, I was barely surviving. Days turned into weeks, weeks turned into months. I fought with every ounce of strength I had in me to fight this beast I call mental illness. I eventually fought my way back to somewhat of a functioning level. I began to write and found this to be a great source of therapy. I began to blog. It was here you would find what was going on inside this broken mind. Each blog captured my thoughts right in the moment it was written; raw, true, transparent and painful. It was through these writings that I eventually created my book; Beyond The Door – A Journey Through A Lifetime Of Mental Illness.

It is through my writing, my artwork and my faith; that I have found a channel to survival. While I constantly struggle with my illness, I have hope that tomorrow will be a better day. I couldn’t always say that and there are still days when it’s hard to believe but everyday I strive to live and help educate others, break down walls of stigma that have for  years, made mental illness such a misunderstood and taboo illness. The shame associated with it, sadly keep many from seeking help. I hope to put a face to this illness and keep sharing my personal story to help others.

If this book (available at Amazon.ca) doesn’t give you a new perspective and break down some walls of stigma, then I have failed as an author. But I know this book will do even more! It will stir within you a desire to know more, more about this illness, more about this machine we call the mind!

 

Imagine, Imagine, Imagine!

Imagine if you woke up tomorrow morning to a complete feeling of utter hopelessness, helplessness and despair. Imagine that no matter how hard you try to get out of this dark hole of despair something within your brain/mind keeps pulling you back into this black hole of helplessness and hopelessness. Every thought is an effort, every action feels like an impossibility; you feel totally disabled. Life is happening all around you and you feel like you are suspended in midair; just watching, having no control. This has been my mornings for the past few weeks or maybe I should say years.

When I feel the onset of these thoughts and feelings, I fear that they are an indication of a relapse of a breakdown. And this is something that cannot happen, if there’s something that I can do to deter a relapse of the magnitude of my past breakdowns, then I must do it! There is the danger that I could not survive another shutdown of my body and mind. In my past experiences with the treatment of my illness; I feel little hope. Especially being diagnosed; treatment resistant. My life since 2012, which was my last total breakdown (meaning, deemed non-functioning) has been a struggle everyday. Some days worse then others. But one thing I know for sure, although I am highly medicated, I still fight to have  an okay day.

Having a mental illness with no cure, is frightening in itself but realizing within myself that there is very little help in my case, certainly exacerbates my situation. It certainly leaves me feeling hopeless and helpless, and that’s how I’m feeling right now. And that’s  why I’m writing today: I feel there’s nothing else I can do, writing certainly helps me to express my feelings and thoughts, no matter how horrid and fearful. Sometimes I feel I’m writing a fictitious story about somebody else’s life but to my dismay, this is my own non fictitious life story.

Imagine you wake to another morning and your first plan of attack for survival is, self talk. Self talk has been a tool that I have used to bring me through many very dark days. Self talk is where you repeat a mantra, an affirmation over and over again in your mind. Hoping that eventually you can convince your brain that you are going to be okay. My mantra for this morning is, ‘It’s going to be okay, you are going to be okay’. I just hope I can convince myself of this and I really am going to be okay. I have to be okay, I just have to be okay!

Imagine that this is your life and you feel you are losing control of your health and your life as you know it. Imagine, Imagine, Imagine! What would you do?

My Untamed Mind

It’s mid afternoon on a beautiful sunny day; I’ve been tortured ever since my eyes were opened to this new day. I knew something was different about today, something more then usual. I felt scared, scared of what? Scared of my own mind and where it was taking me! Most days I can control my thoughts, but not today. My mental illness, my depression, my thorn in the flesh had unleashed its fury and I was in for a fight. A fight that I was afraid I would not win!

My feet hit the floor , I assumed position, knowing I had to face another day. But what was so bad about the day? I was alive, I had a great family, life could be a lot worse but my mind didn’t care about all the good stuff. It only wanted me to see the bad, the ugly, the dark and scary stuff. I tried with all that was within me to distract my dark thoughts but they were winning and I was afraid of where I was heading. Was this going to be a place that I could not pull myself out of. A place that I had no control over.

I hid my shame, my weakness, my fear. On the inside I was a wreak, fighting again this lion within. While on the outside I was a picture of health, a ball of energy, as I meticulously manicured the lawn; just like ‘normal’ people do. But I was feeling anything but normal as I tried my best to be just okay.

There seemed to be no end , the dark , distorted thoughts were holding my mind captive and I just could not escape. No amount of distractions could free me, even for a moment. Were these the same thoughts that invaded the mind of the young lady who tried desperately to take her life but did not succeed or the young man who felt he had no other options left but to end this hell, once and for all. I can’t say I don’t understand why they would do such a thing. I would be the last to pass judgement, the last to question why?

I am so sick and tired of this mind disorder, so tired of this chronic, hellish torment. Hate is not a strong enough word to describe what I feel toward this illness. It is the only illness I know of that steals your desire to live; you live in a body that the mind is trying to kill, a slow, silent death. It sucks your will to live out of you, to a point where life means nothing to you anymore. It makes me angry because someone with cancer are fighting for their life but someone with severe depression is just wanting to die!

I want to live life to the fullest, surviving is not living and when you suffer a mental illness; that’s all you are doing, just surviving. Major depression has taken so much from me, it has stripped me of my self worth, my confidence, my zest for life, my memories and time that I will never get back. And for that, I hate depression, I hate what it has done to me. But I still fight every day, no matter how exhausting, I will fight til I can fight no more. Never giving up hope that one day I will tame this beast of my mind! Hope is what keeps me going, hope is what gives me the will to fight.

The Unseen Caregivers

I just finished watching a documentary called, ‘UNSEEN’. It was a documentary that was so eye opening, encouraging and was produced to show non caregivers an inside look at the lives of parents of a disabled child. It’s not about being selfish  or about complaining but it’s stating the reality of the unseen caregivers. When you have a baby you have dreams for that child, to walk, to talk, to see. Then off to kindergarten, junior high, play sports, make friends, high school graduation. Then off to College and maybe even get married and have kids of their own. It’s just one big ball of dreams.

But then you have this child with confounded disabilities! What Now? Then your big glass ball of dreams just shatters to the ground and explodes into a million pieces. You immediately fall into a state of unbelief and panic. This is not a path that the majority of parents have to walk on but yet there are thousands of us out there; they are just UNSEEN, sometimes by choice, sometimes its easier for the ‘perfect’ cookie cutter parents to just look the opposite way.

Then you wake up one day and realize – this world wasn’t created for your child and that’s the hardest to accept. But you do what you can to give your child the best life possible because you love them, you love them more then your own life. You want nothing less then the best for them, in this imperfect world that was only designed for the ‘perfect child’. You keep going, you have to keep going because your child needs you but you realize it’s a very lonely path.

Home is supposed to be a sanctuary, but it is sometimes far from that. At times it’s more like a war zone. Some days you find you are hanging on by a thread. The screaming, crying, pain, uncertainties, the worries go on and on, you can’t stop it. We thought that as Lauren would get older  things would get a little easier, but it doesn’t, and this can get very overwhelming. It eventually turns into a constant state of anxiety for the whole family. You are living on the edge, you don’t know what a day is going to bring forth. You are in a fight or flight mode. It affects every area of your lives, your family, your marriage. It feels like some days you are just existing.

Our lives as caregivers never ends and will probably never end. It’s not Lauren’s fault, it’s not our fault,  sacrificing your life for another person  for 24/7, 365 days a year; you love them but that doesn’t make it any easier. Parent caregiving never stops, you know you need a break, but how are you going to get it, it’s next to impossible. We need to decrease the stress in our lives but how do we do that? We need to find a balance but there is no balance in sight.

The system has failed us as parent caregivers, we require mental health resources (I’m not just referring to ourselves but all parent caregivers) , more continuous care and respite. There  is no burden of child, if you care about a disabled child, you have to care for the parent caregivers as well. Most caregivers are not fine and are not doing well and that’s a fact. The older we get the harder it gets. We can’t get sick ourselves, for who would become our child’s caregiver?  Our daughter needs us, no matter what and that’s so overwhelming.

Our glass ball fell and shattered into a million pieces, many years ago now. As life become easier? Not at all. We feel just has overwhelmed now as before., maybe more. We feel just as alone as we did on that dreadful day that Lauren got her diagnosis. But maybe one day some of the pieces of that broken glass ball can be put back together. Just maybe! And the UNSEEN caregivers can see a ray of light!