Tuesday, May 23, 2017

MTHFR, ME/CFS and relationships

J & I met under unique circumstances.

I knew his family. His family knew me and also knew 'of' my health issues.

He knew a little, but not much - enough to know that I was having health issues.

While I never hid my health issues from him, I also didn't 'unload' a ton of details on him at at once.

During the first few dates I managed my activity levels (pacing) and when date ideas were being discussed or activities that one of us might like, I did talk about the fact that I have to manage my physical activity levels. He took it at face value, and didn't really probe very much.

I did talk about my diet restrictions and being someone who likes to cook, he came up with ideas of things he can make, things he can alter to fit my diet and how he can make meals work better for me.

After a few weeks, J asked if we could 'define the relationship' and if he could call me his girlfriend.

At that point I brought up my health issues (a little) and we talked about why my diet restrictions and energy management was needed briefly.

But it's hard. How much do you tell them? When do you tell them? Do you fall in love and *Hope for the best?*...

He is 1 of a kind, he really is. And he asked that I help him learn as much as possible. But between his ADD & need to take things in small bursts of information that he can spend time thinking about... he asked that I break things into small, short discussions. A little here, a little there. A little more if symptoms popped up.

Add the fact that he's a nurturer & care giver at heart really helped matters.

He notices the symptoms before I'm ready to talk about them. Doesn't like it if I try to dismiss them or wave away his concern.

But it isn't easy being ill and in a relationship... even with someone who seems perfectly suited for me.

1. Energy levels - my energy levels tend towards the I'm-too-tired-to-move to the can-we-just-sit-or-lie-down?

He gets bursts of energy... but he also works nights. Since he tries to switch back to night-time sleeping on the weekends... he also struggles with energy levels. This helps... but there's a lot of times where I can't sleep - and he's sleeping in; or I can't hardly move and he's got energy and things to do.

With compromise and understanding, we seem to be able to make it work - at least for now. I get up when I can't sleep any longer and rest on the couch - then my restlessness doesn't disturb his sleeping and I can get the additional 'relaxation' time I need. When he gets up, I might still lie on the couch, but he can do his chores and errands - and if I'm up for it, I help as much as I can. If I'm not up for it, he goes about and does it anyway. Compromising on resting more and understanding when it's just not feasible to do anything else.

For the most part, we seem to be in a little bit of a normal cycle of neither of us have enough energy/time to do everything that needs to be done. For the most part (while I was in remission) though, there was enough energy between us to get the worst of it handled.

Only now, I'm crashing. My first full-on relapse since we met, dated, fell in love and got married.  I would say it started a little over a week ago... but honestly, that's just not looking closely at things. Things were getting harder and harder for me to do for several months, and I'd cut back here and there and let things slide. He was getting a lot of OT from work, so he wasn't able to pitch in much either.

As of Sunday a week ago though, I hit the wall. I barely managed to get through the work week, and had to break down and go to the doctor. We're trying a med (it's not working) and this week, I've managed a day and a half before I had to throw up the white flag. I am going to try to work tomorrow, but if it gets as painful as it did today, I'm calling the doc again. I can't focus. I'm in pain, and there's nothing right now to help with the pain. If I can lay still and not move, it backs down to I-can-only-just-tolerate-it, but moving, thinking, picking up my cell phone, anything - and I'm nearly in tears and trying really hard not to cry out.

J is trying. But he's also worrying and stressing and trying to sift through his thoughts. He's trying to take care of me (a bit), but I think I crashed so quickly he isn't fully aware that I can't cook right now, let alone deal with planning a meal, let alone verify what's in the fridge because getting up and walking to the refrigerator and opening the door to look takes my pain from a 6 to an 8 and all I can think of is that I need to lay down again.

I'm posting this here, because I need to vent... to sound off.. to whine a little and to sort through my own thoughts.

When I realized this past week that I really was in a crash (not just a couple of bad days)... I had a fear strike me that this relationship could be a dream and he could decide he can't handle this and walk away. I *know* he loves me and wouldn't likely do that. But I also know how chronic health conditions can tear families apart. But I did talk to him about how I was feeling and how I won't push him away but that doesn't mean I won't have a little fear striking me here and there that this isn't as real as I thought it was and that it's just this impossibly perfect dream relationship that won't last in the real, the challenging, the 'oh-fuck, what now' world we're living in.

Add in a teenage boy pushing limits, fighting with me and his teachers, me flat on my back on the couch feeling helpless and frustrated and angry that I'm here again. Things will get tougher before they get better. All I can do is hope that by aggressively resting I can find my way back to partial functioning like I was before.

No comments: