this time 'round

[theprincetomyballerina]

the monster

The last time M and I had a "big" talk was on New Years' Day.  I'd been feeling a little distance from him, and I asked him about it.  Not sure if it was the whiskey or that he was tired, but he broke down and told me that everyone's left him, and he doesn't want to risk that again.

Hopeful me took it in the context that he wanted to keep trying with me, and the non-trusting me immediately overruled that and I haven't felt the same ever since.  It doesn't matter how often I tell him that I'm not leaving, that I'm in this because I want to be, it makes no difference the actions, the ways I've shown him that he is genuinely, deeply and irrevocably loved - by me.

And every time I feel he's getting closer to me, he pulls away.

It makes me angry that he's suffered that way; I have too.  But since the second I met him, I felt a lot of that thing in me that causes lack of trust fall away. 

In a lot of ways, we're like any other couple that faces challenges, but amplify it by 100, and that's what it feels like right now.  I can deal with his MS.  But it's becoming increasingly difficult to deal with his past, and it's a struggle to not react to it in my own way, meaning my own trust issues come to light. 

I want to say that we'll get through this, and it's the thing we take in as a lesson to be more aware of each other going forward.  But I don't know if I can say that with any sincerity.  And I want to tell him all of this, and I don't know how.

[theprincetomyballerina]

MS from a girlfriend's perspective (part 2)

(or how I learned to stop worrying and love the atomic bomb)

Kidding!

M and I had watched The Life And Death Of Peter Sellers on Friday night; I'd never seen it - it's one of his favorites though.  I had to wonder: in terms of destruction, are M's medications doing more harm to his body in an attempt to keep his MS symptoms at bay? Like an atomic bomb, they adjust the scenery in a way that has you thankful on one hand, but terrified of the fallout.  His Tysabri went okay last week - again, a blessing - and his weekend was ok up until yesterday.  I saw him some of the true aftermath of MS meds, a reaction to the medicine chest of chemicals that happens once in a blue moon.  Can't go into the specifics; I will only say that he was having a bad body day.  And I wanted to help him, but there was quite literally nothing I could do.  He had to see to it alone, and will continue to do so until he physically can't.

It was difficult for me to watch him in that much discomfort.  And a HUGE pang of guilt still washes over me - was it because we'd had sex (sorry, TMI) 2 nights in a row prior to that?  Wait, I won't TMI that, I take it back.  It's important to know, in part because we don't do it as often as other couples, which took some adjusting to for me.  And also in part because we were...exuberant.  And that's where my guilt comes in.  Had I worn him out to the point of exhaustion?  I want to ask him this because I know he'll be honest about it, but it worries me to know that the answer may not be the one I'd like to hear.

When you have sex with someone who has MS, you're also having sex with the disease, in a way.  You have to respect it and sometimes consider it over your own needs - especially if you love your partner in the way that I love M.  Sex becomes a less crucial and present part of your relationship; but the payoff (and I can tell you this only from my experience) is that your level of communication and understanding becomes deeper.  And that, my friends, is a beautiful thing.

[theprincetomyballerina]

FINALLY!

M's got his appointment tomorrow for his Tysabri.  In spite of his feeling a little lagged, we had a good weekend.  He was able to find the energy to go to the studio and do some retouching on a shoot from last week.  Did I mention that he's a photographer?  He is.  And a brilliant one at that.

But back to the weekend...

I hadn't seen him in nearly a week, a record for us, really.  I'd gotten so used to seeing him 3-4 days in the week that missing out on a Saturday night seemed awful, but it gave me a chance to catch up on packing (I'm moving at the end of the month) and laze around with Bella.  But Sunday was perfect.  We went to lunch and talked and talked and talked.  Watched a bunch of L & O episodes - never been a huge fan of the show but it was fun to provide commentary and guess where the bad guy was keeping the bodies.  And slept - which to some would sound mundane, but there's something so safe about sleeping next to the person you love.

He mentioned that the last time I'd smoked pot around him (and he had some), he slept better.  And that he maybe wanted to try it again.  I'm not so sure that it's the way to go, but if it helps keep his legs calm at night, it can't hurt, can it....? 

And I'm finding the most amazing resource in shift.ms - if you have any interest in MS, or know someone who has it - check it out.  It's pretty amazing stuff.

[theprincetomyballerina]

epic fail

For the last year and a half, M's been undergoing treatment with Tysabri, an infusion delivered via IV - and it's really the only thing that keeps him upright and going.  Once a month, he'd go to his neurologist and sit with a needle in his arm and almost instantly feel better.  And by better, I mean no burning hypersensitivity, less spasticity at night, and less fatigue.  When he went to his appointment a few days ago, he was turned away because his MS doctor didn't file the mandatory yearly paperwork for him.

This is huge, not just in that he's not receiving necessary treatment, but because his doctor let him slip through the cracks.  This angers me to no end.

And now, he has to wait.  And for how long?  It kills me to see him in pain.  And there's nothing that I can do about it except wait with him, try to make him feel better just by being there.  And it's not really enough, is it?

Wait, wait, wait.

[theprincetomyballerina]

a girlfriend's perspective on MS (part one)

It was our second date when M told me that he has MS.  And honestly, having absolutely no experience with it, I didn't know much, and everything he was telling me at the time really didn't sink in.  In a way, it's still a mystery - very little is known about why it happens, and there's certainly no cure.

As the last couple of months have rolled by, and I've learned more, I've come to the realization that I'm not scared of it.  It's meant some adjustments, mostly in the way I think about what a relationship is and can be.  And more importantly, how I can encourage him on a daily basis.  It's hard sometimes. He feels like he's letting me down at times.  He's not. 

There will be no long walks on the beach, no holiday touring around Paris, and definitely no dancing.  But that's given us the freedom to be more creative with what we do together - and the time we share is filled with the best communication I've ever had in a relationship.  We've covered a lot of ground in just 2 months.

That's not to say that my learning curve with MS hasn't been challenging.  There's words I never used before and things I'd never experienced.  But as I discover more about the disease and how it affects both him as someone living with it, and me as a partner, it's a little easier for me to roll with the everyday (and night) occurrences. 

The thing for me to remember with being in love with someone who has MS is that I can't take things personally.  There's times that fatigue sets in, and plans change.  He's sometimes really down on himself for it, and it's all I can do to reassure him that this was not his choice, and he's managing it the best that he can.

I'm thankful for him.  He's shown me not just what possibility really means, but the potential I have within myself to be stronger.  And not just for him, but for me too.