…and he didn’t run away

October 8, 2014

Usually when I feel especially bad I avoid people, even people who want to help me. Part of it is that I don’t have the energy to deal with being around people. Even talking is too exhausting. Part of it is that I don’t want them to see me in that state. Sometimes it’s unavoidable, and that’s why several people have seen me when I feel especially bad. But I can count that number of people on my fingers. The other night, though, was probably the first time I voluntarily let someone see me that way.

I mentioned last month that I’m seeing someone. And it’s been going well. It’s been a long time since I’ve gotten this far into a relationship. We’d known each other before so he knew I had some health issues, but it was a vague knowledge, acquired from being in the room while I spoke to others about it. But on our first date, I brought it up and answered some questions. Since then, I’ve answered more. I canceled our second date because I felt too exhausted. Our second second date was just hanging out at my place and watching a movie because I didn’t feel up to going out. He was very understanding. We haven’t been seeing each other for very long, and until this week, that was the worst I’d felt.

The other day a lot of stress and activity caught up with me and I had a BAD day. You probably know the kind. It started terrible and then got worse. I was barely getting by. We had a date planned for that night. We were just going to hang out at my place, but I wasn’t doing well. I spent the morning reading, but that became too difficult. I spent the afternoon sitting on the couch watching tv, but that became too much. I spent the evening lying on the couch, alternating between watching tv when I could and just thinking when the tv was too much. I had emailed him to let him know that I might not be up for getting together. He told me that I could let him know at the last minute. He was completely understanding. And for once, I didn’t feel any pressure at all. I knew that if I canceled, he’d understand. This was so unlike most social situations and was a huge relief!

So there I was, lying on the couch, needing to go to the bathroom for about 2 hours but not having the energy to stand up. And I knew exactly what I wanted. So at the last minute we spoke on the phone and I told him the truth: I wanted to see him, but I wasn’t sure he should see me this way. He asked, “Is this the last time you’re going to feel like this?” and I fought my natural instinct to be vague and simply said, “No.” He responded, “If this is going to work, I have to be able to see you like this.” I was floored. He was right, of course, but still…. I pointed out that since this would happen again, he could see me like this another time, maybe in a month or two when we knew each other better, but he insisted there was no time like the present to see me going through this. And he came over.

It was a bad night. I rallied for a bit around the time he arrived, but that didn’t last long. For a little while I was able to sit up while we talked. We cuddled. He held my hand, which was all I really wanted. He asked about how I was feeling and what caused it and things like that. I explained the best I could. It was hard to collect my thoughts, and he kept having to wait while I tried to form sentences. The brain fog was thick that night. We talked about other things, too. It was a good distraction. Most of the time I had to lie down. I wasn’t just fatigued, but weak. So weak. Most of the time my eyes were closed. Keeping my eyes open was too hard. Processing visual stimuli was too exhausting. So I lay there with my eyes closed and we talked. He offered to help me with household stuff, but I told him that all I wanted was for him to be there with me and hold my hand. And it was true.

It was hard for him. I could see it in his eyes, in his face, felt it in the tenseness of his muscles. I kept checking in with him, asking him how he was doing. He just kept saying he didn’t like to see me in pain. I couldn’t tell if there was more to it than that or not. But it was hard for him, I knew that much. It was especially hard when, in the middle of a sentence, I stopped talking, had trouble breathing, and grabbed my abdomen. The pain was intense. In an instant it had jumped from a 3 to a 7 on my pain scale. It came on suddenly, or so it seemed. My guess is that there were warning symptoms that I’d ignored because of the fatigue. I wasn’t able to look at him during that, so I couldn’t see his face, but I’m guessing it was surprising for him. I’d mentioned pain, of course, but he hadn’t seen it have any effect on me. Not until that moment.

He stayed with me until that pain passed and I said I wanted to go to sleep. Then he left.

He didn’t handle it all perfectly, but I doubt anyone would their first time out. He told some stories that were probably meant as a way to make light of pain and discomfort, but just sounded like he was trivializing it. He didn’t hold my hand enough. I would have loved for him to stay until I was in bed. He wasn’t perfect, but he was pretty damn close. And he seemed to handle it all ok. Still, I was nervous.

I woke up feeling significantly better. My thyroid was still swollen, my adrenals were still struggling. I was fatigued, but not weak. I ate something for the first time in 22 hours. I emailed him to let him know I was doing better, and he wrote right back. He’s a good man, a strong man, and I was almost certain he’d stick around, but of course there was that little niggling doubt. There were the voices of all of those who’d had negative experiences of this type. So I held my breath and waited, and then there it was: he casually brought up our plans for Friday night. As if it was no big deal. As if it was assumed we’d keep those plans. And I guess it was. But what a relief.

So we’ll be going out on Friday. I’m doing better each day, and I think that by Friday I’ll be able to keep our plans to go out. But I know that if I need to stay in, he’ll be ok with that too. Actually, I think he prefers to stay in. I’m the one who’d rather go out! I’m looking forward to showing him that I’m back to the way I was when he saw me last week, before that terrible night. And I want to talk to him about everything, to answer his questions, to take his temperature on this. We all have baggage. I know that. He certainly has his, too. It’s just that mine is very visible and very hard to ignore, and he had to face it early on.

Still, it’s hard not to notice that we have a date for Friday night. So far, he hasn’t run away.

What did you do today?

September 30, 2014

To the uninitiated, it sounds like such a simple question: “What did you do today?” And really, it is simple. It’s the answer that’s complicated.

Some days the answer is complicated because the day was spent dealing with symptoms, but other days the complication comes from a reality that is so different from that of my peers. That’s how it was one day last week.

I’ve started dating someone, and I’m trying a new approach: honesty. Ok, filtered honesty, but I’m trying not to filter too much. The filter is limited to certain symptoms. There’s no need to mention pooping my pants at this stage of the relationship, for example. I’m trying to share everything else. But that gets complicated.

I asked “What did you do yesterday?” in an email this morning and he responded by telling me about getting together with some friends after work. Yeah, that’s what my answers used to look like, too. Not now.

When he asked me last week, I answered honestly: I bought groceries, did some medical research, pulled together paperwork for my food stamps application, and washed a bunch of dishes. I did a few other niggly things, but those were the main ones. Groceries and dishes are familiar to most of us, but medical research and food stamps? Um, not so much. He was surprised when I mentioned the food stamp paperwork (actually, it’s called SNAP now, but whatever.) But when he thought about it, of course he realized that if I don’t have much income coming in, then of course I qualify for and need food stamps. As for the medical research, he has no idea how much time I spend on that. I tried to explain a little bit. He loves that I’ve taken matters into my own hands by doing my own research. He just doesn’t understand how hard it is. He doesn’t know about brain fog. I’ve tried to explain it, but he hasn’t witnessed it (it hasn’t been too bad since we started dating, and I usually hide it well.) Besides, you can’t really understand brain fog unless you experience it yourself. He doesn’t see how exhausting reading can be. He doesn’t know that I don’t just read an occasionally newspaper article – I follow blogs and Facebook groups, I read news articles and web sites. I read entire books from the library. I spend so many hours on this, it would shock him. He’ll learn in time, I’m sure.

And that was just that one day. He hasn’t asked about today yet, but it’s a similar mix: I cooked (ok, I threw ingredients in the crockpot, but it counts, right?) I rescheduled two doctor appointments, I’m writing on this blog that he doesn’t know about yet, I prepared paperwork for my fuel assistance meeting tomorrow, I prepared paperwork for my medical appointment tomorrow, I looked up the best routes to get between the two appointments (I can’t remember the last time I had two appointments in one day!), I pulled my winter clothes out of the closet and packed away my summer clothes, and I rested. I rested a lot. Because all of that was exhausting! I still have so much more to do, but I know it won’t get done. If I can muster the energy, I’ll do my physical therapy exercises tonight. I have done them in a while – not since before my grandfather died. I need to try. Maybe in a few days I’ll find the energy to finish going through my clothes. Right now, my suitcase and duffle bags are are open on my bedroom floor with clothes spilling out of them. My drawers are too full. I have sweaters on top of the dresser because I haven’t found a place to keep them yet. I have pants on the bed that I need to try on. What I don’t have is the energy to deal with any of that.

And yesterday? Yesterday I straightened up my apartment just a bit, did a bunch of dishes, went to a doctor appointment, bought a new winter coat (yay!), and then came home and collapsed in exhaustion. Somewhere in there I also managed to write a blog post about the suckiness of this month and probably do a couple of other things that I have since forgotten about as those memories have been lost in the fogginess of my brain.

And those are just three sample days. Sure, some days I deal with less health-related stuff. But other days I deal with so much more. Friends are surprised when I mention yet another doctor appointment, picking up more meds, or any of the other random acts that I no longer consider unusual. Actually, what surprises them is not that I do these things – after all, they know about my health problems – but my nonchalance. They can’t understand my attitude when I mention getting bloodwork in the same way that someone else would mention picking up milk at the store. But that’s just it. For me, they are the same. Medical care is more than just routine. It’s like breathing.

No, wait, I was wrong. They are different.

I can’t drink milk.

Now it’s your turn. What did you do today? Or on some other typical day? And how to friends react when you mention it?

In between medical and clumsy

June 20, 2014

I wonder if it will leave a scar?

I suddenly wondered just how many times I’ve had this same thought in the last few years?



Now I’ll admit, I was never what you’d call graceful, and I certainly couldn’t dance, but when it came to my hands, I was pretty coordinated. I played musical instruments. I juggled really well. You know that trick of patting your head with one hand and rubbing your stomach with the other? I could do that without a hitch, and I switched my hands easily.

And then I started having trouble. For most of my life I was a truly horrible cook. Really. No kidding. Just dreadful. But a few years back I finally learned how to cook and I did ok. Until I started cutting myself. I’d laugh off a slip of the knife, ha ha I’m so clumsy, but when I had to throw out part of an apple crisp because I got blood in it, I knew there was a problem. There were cuts, burns, and spills. Last week I cut my fingernail off with the knife. I’m just glad it was only my fingernail! There’s some sort of disconnect between my brain and my hands these days. I can feel that it’s tied into the brain fog, but I can’t think it through well enough to get beyond that. That figures.

Last night I had meat cooking in one pan and veggies in another. I was doing really well with the cutting. Maybe my cutting success made me let down my guard? All I know is that I reached for the handle of one pan, and somehow pressed my finger into the edge of the other pan and it took a second longer than it should have to realize what I’d done and to pull my hand back. It hurt, but I didn’t think too much of it until a few minutes later when I noticed the skin peeling away. It hurts a bit, but it doesn’t look too bad. Mostly, it just feels bad mentally, because I know how it happened.

Then again, thanks to the brain fog, I can’t remember exactly what caused the other scars on my hands (though I’m sure it’s all related to kitchen brain fog) so I’ll probably forget this one too!

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