I been wanting to write this for awhile but wasn't sure how to approach the topic simply because I did not want this blog to appear as a cry for pity or sympathy when in fact its factual statements based on events in my life instead of my own beliefs.
Coming up on my 10 year anniversary of the disease I myself have had my share of things happen to my life as a result of Cluster Headaches. I have written about the physical form of what it has done to my body but today I am speaking about what it has done to my family, a divorce I had, relationships, and employment.
I am confident to say I highly doubt there is a Cluster Head Survivor out there that hasn't experienced this already or will experience what has happened to me with these things.
What I am about to tell you is facts. Not opinions on what has happened to me. Please for the love of God do not pity me. You can feel sorry for the people who did these things to me but not me.
Family. While it is the absolute hardest thing as a parent myself to see your own child suffer, my own mom and dad did not fully comprehend what I had for about a year. They did not fully understand the severity, longevity and result of what was happening to me until they witnessed a full blown attack. Sadly they saw one. For a year they offered Tylenol headache pills as a way to think they were helping. No matter how I explained they were in denial. Only when they saw me have 1 attack that was a 10 they really comprehended what was happening to me every day of my life. Also in Dec of 2008 when I wanted to die spending 24 hours together they could see the fatigue, the frustration, the lack of desire to live anymore because of the constant pain and sheer exhaustion. Sadly it was then they finally got it. In no way shape or form am I demeaning my folks. Not a bit but for them it must have been devastating to say the least.
My son at an young age of 6 he screamed "Daddy don't die" as I smashed my face and head into walls, floors and my own fists in pain. Because I have my son at home with me, he was able to see it from the beginning to now. I felt so helpless to see my son watch me in agony. Since he has grown up with it and around it, it now I believe is just a part of who I am to him not what I am. While battling his own disease he learned young in life that life isn't fair and its probably why he is the way he is today and making the choices he is in life now.
My ex. I remember many times the door being slammed saying' I can't deal with this shit' as I layed on the floor screaming in pain.
My friends( at the time). One coward actually said to me' quite your whining that you are broke, you didn't have to quit your job over a headache'. Another, "brain surgery? hmmmm maybe they are that bad". Another left me in a field having an attack and drove away only because it was to hard to watch.....hmmm try having the attack coward.
As I tried to explain to a very small handful of people because I figured they wouldn't understand or care. I was right on both accord.
Hundreds of times I had to cancel, leave early, or show up late for plans.
Other girlfriends. Some were tolerant. Others didn't want to hear it, see it or care. Some thought it can't be that bad. Either way, it was a learning lesson for me. I also tried hiding it until they saw me have one. Secret was out and nothing I could do. Thus ending the relationship.
My wife today. Our very first date I said. "I have something to tell you, and until you see it you won't comprehend what I am telling you'. She married me 2 months before my big brain surgery #2. And 5 years later and we are still on our first date.
Employment. This is bad. One former employer told me that Ii needed to use and book my holidays for sleep simply because I asked for 1/2 a day off because I had been awake for 3 days straight having 15 attacks per day and was so exhausted I shouldn't even had drove as I was slurring my words. Zero empathy. None.
When I was self employed, my customers soon figured out something wasn't right when the 'Closed for family emergency back in 3 hours' sign was up almost daily as I hid in the bathroom floor screaming in pain. Or I was getting or finishing an attack and they would ask if I was ok. I could no longer hide it.
As the older I got as they years went by, the harder it became for me to live. I could no longer make plans. No longer count on myself to be somewhere and know that at any given second my life could change in an instant for up to 3 hours a time upto 15x a day. From a attack where people would look at me and know something is off to me screaming my friggin head off wanting to die smashing my face with a fist. I could no longer hide, fight the pain and the fatigue had finally taken over me. I no longer could hide who I was. A sick person.
This is my life as a Cluster Head, this is what we endure as Survivors. Some are episodic where it comes in bouts from weeks to months and then there is Chronic like me that had zero remission.
I fully get it that someone cancelling plans, showing up late, leaving early can ruin your buzz, your customers, your good time, your need to want or have me there. But not a single Survivor choose this life. We didn't ask for this so if our health is a concern and a problem for you, please on behalf of all Cluster Head Survivors, would you please pull your lips over your head and swallow? We do not want pity. Just understanding.
While Cluster Head Survivors are battling the worst pain a human can endure on the planet, please remove the head from your own ass and understand we have no control what is happening to us let alone want this to happen to us. I make no apologies for being sick. It is you with the problem not me.
This is why Cluster Heads can not work. Our life can chance in a second. We are un reliable, unemployable and just plain fatigued beyond words. A 3 hour attack feels like a 40 hour work week in a hot factory. Imagine several of these attacks per day in the middle of the night too? Impossible to work. These attacks are horrid to watch. So how can co workers and customers handle this? They don't. I have had ambulances called for me and if it wasn't for my wife, police would have been called for attacks.
Divorces are no surprise. It takes a very strong partner in life to stay with a cluster head. Because they are choosing to stay married to you. They have the disease just as much as the survivor. The disease affects everyone. Children have no choice. Spouses can leave anytime. I am very blessed to have a woman stick by me when others did not. And for the ones who did know me before I got sick. I highly doubt they would have stayed too.
Relationships dwindle because of broken plans. Cancelling, leaving early, showing up late or destroying an event because of attack.Fatigue, being angry we are sick.etc. A real friend will extend a hand up not look down on you and talk bad behind your back. We are human beings. All I can say is that karma has its way and if you are lucky like I was you will get to see and hear it in its splendor. They too will someday be affected by health concerns and wonder where everyone went. It will happen.
All 4 brain surgeries I laid there recovering watching my wife cry her eyes out not for me but wondering where my so called best pals where ! Not a card, not a text, not a call, no email no visit. nothing. I have since forgiven them for myself not them.
Since loosing a career, a wife, friends, relationships, and my vanity, I have been very blessed with the most amazing people in my life who accept me the way I am. They tolerate my flaws (we all have them). They understand why I no longer work. Understand why I can not come, leave early or come late. They know I am unreliable not by choice and won't run the other way when I have attacks. My wife has stood beside me through the absolute worst in my life. From brain surgery, to burying our little guy Buster. She is such a truly amazing woman. A hero to many, an unsung hero to me. My family has learned to cope with the disease and is now advocates too. My friends in life now are greater across the planet. And closer in town then ever before. Just way better human beings. Now I know what an actual friend is.
If you are going through with what Ii have had. Job loss, or loosing a girlfriend or boyfriend or spouse. Or loosing friends because they do not get it. It is ok. Pick yourself up. Dust yourself off and make new friends. Disability should be an option.Rid yourself of negativity. You have made it this far and be proud you are still here to read my crappy blog. You are important and you matter. Fuck all the cowards and pricks who do not give a rats ass about you. If they can't understand you had to cancel, leave early show up late well screw them with a big F you. They were never really your friends. You were just a convenience to them. Now you are inconvenient to them. Move forward. You can't drive forward looking through the rear view mirror. You are one tough Son of a Bitch and made it this far. Most wouldn't last 30 seconds in our shoes. I care about you and you matter.
Do not be concerned about this topic. It happens to the very best of us. For those who have stuck around and will stick around you are unsung hero's to us. And we appreciate you way more than you know.
Do not be ashamed to admitting to disability. It was very hard for me to realize I could not longer work. But I have purpose and do things on my own time and health when I am able to such as advocacy and this blog. This was Gods plan fro me all along. This is my purpose in life. Do not loose sight of who you are or once were before our health was taken from us. Some of us are able to work for now some can not. If you loose friends/ relationships.....think if it this way."sometimes a loosing someone isn't a loss". Its a blessing!
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