Some of the hardest conversations I have had in my life are the ones I have had with my husband about these illnesses and my life (or my grieving of it). More than how much I hate what they have done to my life, I hate what it has done to him! Yes. I hate what it does to him everyday and how much it has changed his life too much much more.

Today I said with tears in my eyes that I hate the suffering that it causes him. And I work SO hard to make sure that these awful experiences don’t cause me to turn my pain and anger on him. I REFUSE to allow it to reduce my husband to the role of whipping boy and a convenient place to put all my pain, frustration and disappointment at some of the hands that life has dealt me.

I constantly search for ways to channel my pain and angst into other places, which will be more beneficial and helpful. I started blogging, drawing, writing, advocating and listening intently to all his thoughts and dreams. It is not always easy. Sometimes its damn near impossible to quiet the beasts that dwell just below the surface. Sometimes my feelings and pain are so raw that it just erupts out of me and can consume everything like flowing lava. But I try very hard to keep a watchful eye on how often this happens. I am getting better… but I have had lots of practice!

I still keep trying to find ways to channel that energy and emotion into things that are more useful. This has been very very important to me.

You see, Illnesses like these don’t just happen to one person, it happens to the whole family unit; It changes everyone in very profound ways. The man I met years ago has changed forever. The relationship we have now has been completely altered in every aspect imaginable.

Whilst I am grateful for the way it has grown us as people and made us very aware of the important things in life, I hate some of the sadder effects it has had. The opportunities it has taken from us.

I often have to remind Hubby that I want him to pursue his passions in life, and all the things that bring him happiness; regardless of the sacrifices it may require of me. I WANT him to live a happy and rewarding life… in fact I want him to live for both of us!

I get great pleasure in knowing that he can find happiness, peace, interesting pursuits and hobbies that I can share in, even if it is has to be vicariously. I like to think that it IS possible to find wonder and beauty amidst these dreadful illnesses and circumstances. I don’t want him to miss out on an opportunities in life, even though I know he has already.

There is NOTHING that he and I can’t talk about now. Which is a wonderful blessing in all of this. We talk about life, death, suffering, peace and everything in between. It is both liberating and sad at times. Sometimes we talk with tears in our eyes, and sometimes with clinical honesty. We have to be husband and wife, invalid and carer, friend and confident, confessor and adviser, anything and everything all at once… That’s what a Chronic Illness Marriage becomes. It can make or break many couples.

Even after all this time and after all the awful things that we have had to cope with, I think one of the most important things I have learned is how to truly love someone more than I love myself. To want more for someone else than you want for myself. It has made me incredibly selfless and it has done the same to him too.

When I told him how hard I work to ensure he doesn’t become merely a place to put all my troubles and pain. That he understands how much I respect him and appreciate him as being more than merely a carer or nursemaid, he said “… I know all that…and that is why I love you so much…”

I try very hard not to show my anger, pain, frustration, helplessness, sadness and, yes, jealousy when I am around him. Its not his fault that we are where we are. Its not his fault I got sick. Its not his fault I am not cured or getting better. I know that. And I want him to know that I know that too.

Sometimes its the things that we try NOT to do, that says more about us than the things we do.

Gentle hugs,

Trish