Well my last blog post on marriage and chronic illness gained quiet the traction.
So I figured I would do another one which is a lot more in depth.
My last blog post on marriage was a very small snippet of everything, and I had a lot of comments and replies with questions, and essentially asking for more.
So here is more;
Let me start off by saying that my husband is one of the most patient people I think I have ever met.
Which trust me when I say that can be a blessing and a curse.
Like I had mentioned in my last post, we started dating when we were 17.
I became symptomatic at the age of 7 and then my symptoms increased and became more relevant when I was 14.
I was diagnosed when I was 19.
So really, I had only been dealing with full blown endo for 3 years prior to dating my husband. We were together and 2 years into our relationship when I was diagnosed.
The fact that he got to learn, understand and see the disease first hand along side of me I think helped things in a sense. But at the same point he is a typical male and would get and still gets a glazed over “ I have no idea what you guys are talking about “ look on his face when we go to doctor apts.
I have always explained things to him in as much lament terms as I could possible come up with and I still have to sometimes, especially now when my disease has progressed so drastically.
Its hard to say the least, and I see a lot of it from his perspective. There are times where I am not sure who its harder on, myself or him?
I deal with the physical aspect as well as the emotional and mental pull of it all.
But he has to deal with the emotional and mental aspect of essentially losing his wife to a disease and becoming a different person that who he ever knew.
He also has to deal with the fact that I can no longer function the way I used to.
Our entire house hold dynamic has shifted drastically in the last year and half.
But lets go back in time a little bit and start from the beginning;
I cant remember the day and I cant remember how I told him, but I do remember we were about 18 and starting to get serious.
I remember I was so worried about what his response would be, he is European and comes from a very family oriented upbringing, but I better get it on the table now rather than later.
And I told him;
I have a disease that has to do with my uterus and the chances of having children are slim.
I tried to explain it as best as I could in simplistic terms for him to comprehend, and in all honesty he seemed not to care to much, mind you
We were 18.
I was on birth controls at the age of 14, we tried it all to contain my periods and as much as the pain was excruciating that wasn’t my biggest complaint with this disease. It was the sister disease that came along with my endometriosis which I found out later was called Adenomyosis.
We used any and all medications to try and shorten my cycles. My cycles would be anywhere from 16-26 days long and heavy beyond belief.
Some birth control pills worked better than others, some worked great for 3-6 months and then just stopped working. Some didn’t work at all. Some made my symptoms worse. And the ones that worked great usually turned me into a psychopath.
Thats when I knew my husband loved me.
I remember it like it was yesterday.
We were 20 maybe 21, sitting on the front step of my moms porch and it was a summer evening.
I had been on 300mg a day of Danazol
(essentially its testosterone to stop me from ovulating which would then stop my cycles)
I was a raging bitch.
And thats putting it lightly. I would have serious roid rage. I would cry at the drop of a hat and I am not a cryer. Anything and everything would piss me off and I was mad at the world 80% of the time.
We sat on the porch and he talked to me about my moods and my emotions and what has been going on, and he knew it wasn’t me and he knew it was the drugs. And at the end of our conversation he told me to get off of them because it had altered myself to a point of not being recognized.
He had told me as much as he loves me and wants to support me he couldn’t handle the back lash of mood swings and emotions being projected onto him and if I didn’t get off of them he wouldn’t be able to be with me anymore.
And honestly, I was happy!!
I didn’t want to be on them but I needed a validation of getting off of them.
I remember my doctor started me on 150mg and the side effects weren’t bad but it wasn’t doing anything for my cycle and I was excited she was going to try the next option, but instead increased and doubled my dose.
Its so hard when you are in the middle of the hurricane, when you’re the navigator and path way leader of destruction, to see the destruction you are causing around you on the outside.
He was just so patient and kind with expressing his feelings with it all and lets be honest, which 20 year old guy would stay around while his girlfriend is flying off the wall and try and work through it with her. If that isn’t love than I don’t know what is.
I recently went through Lupron.
Lupron is a muscular injection once a month or once every 3 months depending on your dosage your given, and it chemically induces you into a state of menopause.
I was also given add back which essentially is a low dose of estrogen to try and settle the side effects.
Lets just say add back didn’t do a whole hell of a lot.
Oh guys it was bad.
It took my endo symptoms away which was amazing but holy hannah, lets not do that again.
I mulled through my work days and the moment I was done work I would head upstairs and get into bed, and plant myself there for the night.
I essentially was a shell of a person, I had next to no interest in absolutely anything, except for sleeping and being in bed.
I lost 12 lbs and I was either crying or sleeping.
And my poor husband had to endure it all.
The moment he would bring anything up I would just yell at him or break down crying, screaming “its out of my control, I know you don’t want to see me like this, but I don’t know if I have any other option”.
I made an apt with my endo specialist when I realized I cant live like this, my husband doesn’t deserve to live like this.
The biggest thing I can say with all of if, and sure I can sit here and pull apart each experience and the reactions, but that would make this post a heck of a lot longer than it already is.
The biggest concern and worry that my husband has when it comes to my illness is the inability to help, to fix it, to make me feel better and to understand it.
He will still mention here and there during the days that a flare hits in the afternoon
“I just don’t get it, you were completely fine 20 minutes ago”.
Which trust me, I KNOW I WAS…..
We have had to have some conversations around the way in which he delivers his concerns. Sometimes he just says it how it is and thats fine, but when you are already emotionally unstable from the side effects of your medications, it doesn’t usually get received well, so that is something he is working on.
But in all honesty I think a lot of it just comes from the fear of it all.
To have you wife happy and healthy and being productive during the day to all of a sudden having it seem like she’s hit a wall, cant walk, cant breathe, cant handle what is raging inside of her body has to be absolutely petrifying, while you stand there unable to help in any regard.
But he does help. He thinks he doesn’t but he really does.
Doing the dishes, bathing the kids, making lunches, vacuuming, laundry.
All of the things I cannot muster up the energy to handle or tackle he manages to get done.
He manages the house, the kids, the work and my needs while I flare without making me feel bad for it;
And that is more help than I could ever ask for.