So this is now my second blog post... I felt that I needed to share with you all how Panhypopituitarism affects me, in spite of the obvious fact that I'm not the one that suffers from it physically.
It's easy to see the impact that this has on Ethan but what does this mean for me, his wife... Or indeed the rest of his family?
This isn't intended to be a selfish post by any means, I'm just wanting to share my side to perhaps help others that are partners of those that suffer PHP.
From the start, I knew about Ethans' condition - He explained it in full detail to me, as much as he can with no medical background himself. I threw myself in to it, researching, asking plenty of questions at consultant appointments... I wanted to know as much as I could.
What is this condition, my then boyfriend, suffers from? What does this mean for our future together but more importantly... Will this effect the amount of time we have together?
To say that it terrified me is quite the understatement - Everywhere I looked it spoke about brain tumours... This could never be a good thing! But the more I looked into it over the years, the more I spoke with his consultants, the more hope I built that Ethan could live a long and fulfilled life.
Living with Ethan with his condition is incredibly difficult. As much as you try to be understanding, there are times it gets incredibly frustrating. Why won't you get up? Why are you being so lazy? Why do you not want to spend time with me and want to spend all day in bed instead?
Selfish I know.
But the more you get to know about the condition, the more you understand that it's not through a want of staying in bed... It's physically so difficult for him to get up. I have natural cortisol... He doesn't. This isn't a matter of laziness... He suffers daily with feeling so incredibly tired nothing touches it. Nothing makes him feel better, not even a full days sleep. And when I say a full day I'm talking 24 hours plus!
It's difficult to comprehend how this may feel when you feel so fresh faced when you wake up in the morning. It's difficult to comprehend the sheer strength it must take for him to get up - But I can be understanding now that I understand it more.
It doesn't take away the daily struggles... Like, I get up on a morning, let our doggie Meika out for the toilet, get a brew and some food... You know 'normal' morning stuff, whatever 'normal' is.
As much as I can try to get Ethan his medication, help him by taking a brew to him and some food... This is only ever good when he isn't telling me to go away in a not so polite way because he's just so exhausted despite a long nights sleep. I can't be the only one that goes through this? But at times I just feel like no one can possibly understand what I go through.
All I want is for a day, just 1 day where he doesn't feel like this anymore. To have a day where we can just live a normal day together. You know, like get up on a morning, go out for the day and have some time where he doesn't feel so exhausted. It's so heartbreaking to watch how this condition effects him daily. I wish I could take it all away, as frustrating as it gets for me.
And then there's the obvious... The reason we're all here, on Panhypopit Baby... I see how he is with our friends' babies or family members... I watch how good he is, how caring he is and the little glint in his eye saying, I'm ready for this. We talk, as we have done for years about a baby... We discuss names, how many we'd like - Just your normal future plans conversations... But then there's this lingering question mark over whether this will be possible for us.
I feel as though we're in limbo at the moment. Waiting a test to find out whether we can have our own family. But I'm going to speak about this in more detail in my next blog :)
I hope that this provides an insight into my view, my life and how PHP affects me. I hope that I can help others who are going through the same with their partner to have the knowledge that they're not alone.
Patience, understanding and love are the key ingredients to pulling through this. Always smile, laugh and be kind :)
Love,
N xo
Comments