https://www.facebook.com/Julieg350dayinthelifewithmigraines?skip_nax_wizard=true

Friday, September 14, 2012

Talking about Migraine Disease-How do you talk about Invisible Ilness

What an extremely stressful start to the day. Well, it started as usual-the mundane get up, make breakfast and pack lunch for the spouse and feed the critters. Then minding my own business wondering what todays topic would be, after all it is Invisible Ilness week. I'm sipping on my coffee when my daughter screams from the basement her Puggle Buddha is having a seizure. Apparently He had nudged the basement door open enough to sneak down there while I was in thought and crawled onto the bed with her to be near her. I rushed down there careful not to fall as I have fallen down those stairs countless times.  He had 2 of them back to back, poor guy. Of course it had to be the time of day where his regular vet, on Central Time, was not open yet, but she called and left a voice mail. I called my vet and found out there was no vet in the office yet until late that am. He had just had a series of severe seizures, 4 back to back, not even a month ago and had his potassium bromide dose increased by .5ml. Her vet finally called back and had his dose increased another .5ml. I hope I'm  typing this in correctly so now he will get a total of 2ml instead of 2 1/2 ml.

So she went off to work and I'm a nervous ninny hoping he  doesn't have another one because I'm still banned from driving per my Dr. orders.
So how do you talk to people about your invisible ilness? I use to be very open and honest in the beginning to family, friends and co-workers. In the beginning. It got harder with co-workers as the ilness progressed and got worse. They got pretty cold hearted, especially mid to upper management. And the sorry part was they knew I was doing anything and everything possible to work on it and keep it under control with doctors visits for medication changes and alternative therapies. I was open with them as possible and keep them up to date. I even informed them when I brought injectable medication to inform them if I had to rush to the bathroom to inject myself that was why. I was the only one in the office that would bring in doctors excuses when I had to call in sick due to migraine or any other illness because I was starting to be discriminated against-a lot of pressure was starting to be put on me-especially by my "team leaders" who were my peers and I'm still not clear if this was prompted by management or if they did this on their own. But they started monitoring all my phone calls and started picking them apart and critisizing me and telling me I could have done this better or that better. Then they started picking apart my paperwork and critisizing how that was done. I had been doing it how it was taught to me for 13 years and now all of a sudden it was wrong and no one else by myself was being singled out. The pressure was mounting big time. One of the team leaders made a pointed remark towards me in a round about way about missing too much work on Facebook then recanted, but not before I could print copies of it. Another co-worker had coaxed me on in a joke about M&M's and some of the other co-workers that happened to be male and she called me a slut. She got written up over it. And yet another co-worker called me a cougar but since she was buddy buddy with the team leaders she was fine and dandy she could do whatever, and she was a chronic whinner. But they had a little high school click going on at work for Pete's sake and since I was older and I apparently had outworn my welcome after 13 years of loyal service they were pressuring me to quit.

I had NEVER once filed a complaint to management in all the time I worked there so I did this one time for unfair pressure from my peers. The manager at that time to tell you the truth was a Baboon that could not have been able to manage a banana cart in the middle of a jungle, that was how "intelligent" he was. Not. He decided I was in the wrong for filing a complaint and my so called peers were in the right. So they kept on with their Hasseling of me and then I started having panic attacks and my doctor put me on sick leave and I never went back. I'm not sorry I left. In fact I'm glad to be done with them. That place was so very, very toxic. Everyone there would stab you in the back before you could even turn your back to them. They'd throw you under the bus in a nano second if given the chance and do it again to make sure it was done right the 1st time.

But I would make them aware of my triggers hoping to make it migraine friendly, they would not co operate. They would always put me under a speaker and blast the music full volumn! And they expect you to hear the customer on the other end of the phone at the same time while music is blaring away over your head! The manager would always come in 1st thing in the morning wearing a full bottle of the most disgusting, cheap smelling cologne and deliberatly walk by you so you get a big whiff and get it in the back of your throat.

They finished the new addition of the warehouse flooring with a very toxic smelling finish that was all through the building that was not properly ventilated, and ticked you had to leave cause you were seeing double or quads of everything, ready to puke and your head ready to explode in a billion pieces.

Not a worker friendly environment, and not willing to make it migraine friendly, that's for sure. And if they know you have an illness or a disease they will pressure you, in a round about way, to make you quit because they know they cannot terminate you-up to a certain point.

But that was the start of my downslide. I started closing up and shutting down to outsiders about migraine disease, panic attacks, depression etc because after that I could not trust anyone. This was in early 2010 and it has just taken until this long to start to open up to strangers again, but very slowly. My parents, God rest their souls, and a couple of my siblings I could always talk to. My extended family I have a few, but my spouse is another story-at 1st he was but now he's at the point he said he's tired cause it's the same ole story. Well, don't you think I'm tired of it too. He thinks there is a cure and I tell him there isn't. He has a brother-in-law that is yammering in his ear that says there is and agrees with him I should be off the med and at Mayo to cure me. How many times can you tell someone there is no cure. Mayo will only do what every other clinic has done-experiment on drugs to find the right combination.

So I draw the circle to myself tighter and close myself up again. No one gets it. No one listens. No one understands. You just want to pull your hair out (but just brushing it makes you want to scream). Why are people so dense!

So that is why some people do not open up about their disease and why it remains invisible. It's a shame but when your in the workforce and have to work for someone else, in todays economy if they know about it your screwed. In personal situations its touchy too. I guess it just depends on each persons circumstances. When you have such a hideous disease it makes life unfair, that's for sure. It makes you want to pull  your hair out, which hurts anyway when my head hurts, so what the heck.

Until next time stay healthy, be happy, live well and be in peace.
Julie

http://youtu.be/vVWXQdZE6FQ

 

No comments:

Post a Comment