This is one of the hardest posts I’ve ever felt I had to write. In fact, I haven’t written for a few weeks because I haven’t wanted to face the world. I’ve been out of town most of this month on work trips. They’ve been hard but good and I’m relieved that all of my hard work has paid off with good projects/clients/work. I’m exhausted now and looking forward to relaxing and doing literally nothing tonight. I’m more emotionally exhausted than anything else. As some of you know I’m in a relationship with Jax. This whole site began because Jax and I were searching for a site that shared the real story about dealing with a chronic disease (or two) and also having a relationship. We had read about some couples seeing the disease as a 3rd party in their relationship…some just avoided the whole situation all together.
Essentially i am not sure what is happening between us except for that things are falling apart. I’m certain that he’s not seeing someone else, but I am certain he wanted to leave our relationship on my return. I know it stresses him out to see me off and on again in a wheelchair – believe me – it stresses me out – but I just have to deal with it. I’ve cried these past few days non-stop. I’m not really clear about what I need to fix about myself to make this okay.
The darkest days have come – of course now that I’m finally starting to feel physically (thanks to enbrel). In fact, this is exactly why these days are coming now. Jax is finally allowing himself to feel and express the emotions he felt needed to be caged up while I was so sick. He feels selfish to have his own needs ( a result of my illnesses and our focus needing to be on getting me to an acceptable living level). He’s decided that the stress in our lives is unacceptable to him – which i respect and understand. He doesn’t want to split up but he stewed on all of this while I was away and was very worried it would be another evacuation trip so much so that he totally freaked himself out.
I’m trying to explain this in a very clear way to you- I feel as if he is totally rejecting me (because in several ways he actually really is) , my life choices, my diseases, and the fact that i can’t get rid of them and telling me that they are unacceptable for him now. What he is really saying is that I deal with things in a way that stresses him out – with being frustrated and angry and too overwhelming for him. I wil say that my diseases are too overwhelming for me – and i am the one who has them.
We went to counseling and therapy today and yestrday (which I would normally never would do) so I feel a little better – but it’s not resolved. I’m not sure if we’ll stay together because i feel like he is rejecting me due to the way I deal with things yet it is Jax who has kept all of this stuff bottled inside of him and not brought it up to talk about it, so when he does it all comes out as a hue list of complaints that seem overwhelming and unfixable.
Essentially, I feel like crap = my body wont do what i want it to do and Jax sat there saying to me that he feels bad becuase if he wanted to go mountain climbing or bicycling or parachuting that I wouldnt be able to go with him. I explained that just because couldnt climb with him (he is not a mountain climber even remotely) that at least i could go to the mountain with him.
There are so many aspects to this where he’s not being fair. I mean, he’s kept all of this so bottled up inside of himself…I didn’t know he was unhappy with how much I work.. It turns out he’s just in a mode of being like most guys right now and what i thought was special has dissolved into something far more predictable. I’m very upset about this! I wish I was a normal person if only for a moment so he could see that it is so much better to be me…
I want to stay together. i really do – but I know there are things to come (I hope) in our lives that are also stressful and I am afraid he wont want to do any of those things in our life (i.e. wedding, kids, moving) because he’s already so stressed out about smaller stuff. Having a disease is very stressful – My life and body are very stressful. Getting through it all is beyond stressful. Not sure what the solution is but tonight I just need to be- maybe rent a movie and just do nothing. I’m too tired and upset to keep writing about this.
-Sasha xoxo but confused.