Sunday, June 5, 2016

Coping with Cluster Headaches

Coping with Cluster Headaches.....

If you are reading this, and have cluster headaches. You are coping right now.

There seems to be a lot of debate  of an episodic cluster head vs a chronic cluster head. Sorry there is NONE in my opinion. It doesn't matter how many attacks you get, A survivor is a survivor chronic or episodic. If you have had 1 cluster headache in your life. It is one to many and you are a survivor of the most cruel and unusual human torture on the planet.

In Canada, I was turned down for the pain clinic. The heartless letter which I complained about said "There is nothing further we can do". I wrote them a letter complaining that their letter was heartless. And some hoping to see the Pain Clinic is their last hope and the clear cut heartless letter may send someone over the edge. They apologized and said they would work better to be more sensitive. Luckily I have very thick skin. But I wrote them back for the survivors loosing hope.

This blog today isn't about treatment of cluster headaches. Because treatment isn't coping in my opinion. Coping is getting out of bed (when not having attacks), putting your clothes on, and living your life.

Literally it can be an immense struggle most days to get out of bed. Not because of being lazy. Hell no. It is because we are so fatigued, so worn out and exhausted just having a shower is a struggle. When I am hurting my wife fully expects me not to cook, and to let me rest. Personally before all my brain surgeries I used to be the most hyper guy who couldn't sit still, sleep on 3 hours and go go go the next day. Now.....I am 100% polar opposite. Winters are the worst for me. Some or alot of my health problems arose as a result of brain surgery.

Its so fucking hard watching the rest of the world live life. Just because we are breathing doesn't mean we are living. If that makes any sense. I try so fucking hard to keep up. To be there for my buddies and do  functions, my family. It breaks my heart. I have to cancel, show up late, leave early and bow out. It sucks to see friends pay off mortgages, go on trips, send kids to college, and plan for retirement while I sit back and watch life move forward. But I have no choice but to get back up and move forward. Accepting the fact that certain things in life are not in the cards for me.

No one grows up thinking they will get sick. At a young age we think we are invincible that it won't happen to us.  At my age I think now, what else can happen? I have close personal friends battling horrible diseases and some are dying, Who signed up for this shit? I didn't.

I guess its why when I see a fellow survivor or friend who is battling I take it personal and my heart goes out to them and I try to do my best to help them. Some times I can, most times I try and other times I can't.

If you are reading this hoping to find some key secret that I have figured out I am sorry I don't have one. I fall 7x and get up 8x. Seems to be working for me. I have blogged about being positive and moving forward and that is great when our head isn't in the most violent fight for our life. Its the times we are not hurting. Its those times we reach out to the ones we love, Thank them for understanding what we are going through and fuck the rest who are so self absorbed they don't care.

It sounds so cliche but keep on keeping on. Do not give up. Move forward. Before we got sick we ran, Then we got sick and now we crawl. Don't try to run no more. Know that walking is great if we can do it that day.

Holy frig. they are rare days I feel ok. Normal. Like the rest of the world or how we used to be. And those days we as survivors learn to love and cherish that day because when we are down we dram about days of normalcy.

I think the biggest thing we have to accept before we can keep moving on is that we are who we are. We are not what we used to be. I am reminded by that every time I look in the mirror. If you are judging me based on my appearance and weight. Boy, I feel sorry for you because you are far sicker than I ever will be.

Coping with cluster headaches is keeping yourself alive and living. I have heard the term get busy dying or get busing living. That is a bit brash for me and I don't say it. I say keep living.

Whatever you have done so far. Whatever treatment you have tried. Medical, medicinal or just gone through are here. You are reading this. You have survived to the very millisecond you are reading this.

I hate the word sufferer. I prefer the term survivor, We have all had some attacks and suffered an immense amount of pain. Pain that any non survivor can not comprehend fully. And you made it thus far. You are a survivor. To me....that is coping. No one will appreciate your good days more than you.

I am really glad you are here today. You mean something to me and I care about you. So keep coping, keep living. You are a survivor.

1 comment:

  1. I have suffered from Chronic Cluter Headaches for almost 20 years and it is truly a survival, a struggle, for me and my family. When I read this, I felt like it could have literally been something I wrote.... Like it was my life.
    Thank you for blogging about it. I wish everyone knew about Cluster Headaches or could experience just one headache or one night of my life to see just what we go through and better understand that we are not weak or lazy. But rather how strong we are just to survive with such intense pain every day and night.