Resenting my overwhelm

January 30, 2018

We all know the stereotype: the lazy person on benefits, who spends all day watching tv and eating junk food because they don’t feel like working.

We all know the reality: nothing like that at all.

Still, in general I find that even though I’m busy, I can manage. Some days I don’t feel up to doing as much, but it more or less works out. Sort of. Well, close enough.

But sometimes I feel overwhelmed by everything. Driving 6 hours in one week for various doctor appointments. Physical therapy at home. Eating the right foods in the right amounts at the right times. Getting tests run. Exercising. Feeling guilty whenever I don’t do one of those things. Always trying. Always running. Sometimes even finding time for family or friends. But not nearly often enough. Seeing notes about things I want to do, and wishing I had time for them.

And I should have time for them, shouldn’t I?

I hate this feeling. I don’t even have a full time job, damn it! Why am I so overwhelmed?

Of course, we all know why. It’s because I do have a job. Sure, I’m not getting paid for it, but my health is a big job, and it’s never ending. Add to that, I don’t have as many “good” hours in a day as my healthier friends do. I’m lucky to start doing anything “productive” by 11am. By dinner time, I am done.

Sometimes I do things practically nonstop in those intervening hours. Sometimes I can barely manage to feed myself. It all depends on the day.

And that unpredictability only adds to the overwhelm. My calendar might look good, but when I suddenly lose a day of productivity because I feel like crap, and everything else has to get rearranged, then it’s suddenly way too crowded. I build in “rest” days, but I can’t predict. My body might decide it can’t manage anything on Tuesday, even though my “rest” day isn’t until Thursday. Or I might rest on Thursday and feel like I need still more rest on Friday. Or sometimes the “rest” days are perfect, and if I schedule less and then feel ok, than I simply do less, instead of using the “extra” time to get more done.

My new goal for 2018 is to take days to take days off, and so far it’s helping. But it’s not enough.

And the funny thing is, next week I might sleep better or do something fun, and suddenly I will feel like everything is under control. But this feeling of being overwhelmed will come back. It always does. And with it, comes an uncomfortable guilt. Because after all, it’s not like I have a full time job.

Note: I would be the first to support a friend who feels this way. I would tell them that of course they have a job, and they are completely justified to be so overwhelmed. So I am repeating to myself what I know I would be saying to someone else. And it helps.

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Please don’t take away my physical therapy

January 25, 2018

For most of my life, my posture has been lousy. My shoulders hunch forward, I never sit with my legs down properly (in large part because I’m very short, and I can’t comfortably sit that way, since my feet won’t be flat on the floor), and of course, there’s the scoliosis. Two different forms for scoliosis, actually. Thanks to all of that, and a doctor who majorly screwed up (she measured my legs wrong, and for years I wore a lift on the WRONG FOOT!) I have a lot of neck and back pain. And that’s even before you consider my mis-aligned kneecaps, which have worn away most of the cartiladge on the outer sides of my knees.

So you won’t be surprised to learn that I have been in physical therapy for neck and back pain a bunch of times over the years. I’m doing it now, too. But this time it’s really helping. Probably because I’m not getting cut off after a few short months, like all of the previous times.

If you’ve ever done physical therapy, I’m guessing this will sound familiar. I would go in 1-2 times per week for a few months, be given exercises to do at home each time, and then at the end, told that if I go home and do the exercises, I’ll be fine. And when I wasn’t fine, when I came back for more help, I was treated like I failed.

And yes, I admit that I wasn’t as consistent with the exercises as I should have been. But even so, it felt like something else was going on.

That brings us to 2017 when, for the first time in my life, I went to physical therapy appointments for the entire year. Sometimes I would go 2 or 3 weeks in a row. Sometimes I would miss 2-3 weeks. But always, I went back. In between, I did my exercises at home. Sometimes I was consistent and sometimes I wasn’t, but I always tried.

And it helped. A lot! So you can imagine my disappointment when I went to physical therapy yesterday to be told that Medicare has lowered its coverage limit.

Oh boy.

On the bright side, this might not effect me. She had checked and last year I would have just squeaked by under the 2018 limit. Still, it’s disconcerting. We will need to be careful.

We talked about having me come in less often. Or maybe skipping a few weeks here and there. Or maybe coming in for shorter appointments, since the limit is on the dollar amount covered, not the number of visits.

Not for the first time (not even the only time that day!) I came up against the problem of having to manage my health in the face of insurance limits.

On the one hand, this is totally fair. After all, they need to set limits, right? On the other hand, this is my health, and isn’t the whole point of paying into the system so that it will cover me when I need it to? What good is it if it won’t. I’m not the cheapest person on the insurance’s rolls, but I’m far from the most expensive. And damn it, I want my physical therapy! Without physical therapy, my pain and posture will get worse and that will harm me in a lot of other ways, limiting my ability to work, meaning I will need even more benefits.

After all, I am losing a bunch of my benefits this year (yeah, that’s a topic for another post) because I earned more last year. Don’t they want to keep me off those benefits? They should want me to be healthy, if only for financial reasons. They should consider that more physical therapy will actually save the system money in the long run.

But no one worries about that. They certainly don’t worry about the human being behind the numbers. The human being who simply wants to be in less pain, who wants to stick with the thing that works, who tries so hard to feel better every single day.

My physical therapist warned me that Medicare changes its limits every year, and she implied that future changes would not be in my favor. I am not surprised. But I am horribly, sadly, painfully disappointed.


Feeling fatigue frustration

January 20, 2018

Fatigue is my most frustrating symptom. Unlike the others, I can’t push through even small amounts of it. Unlike the others, it feels vague and a little unreal. And it stops me from doing so much.

My pain has been better lately. I can work around it. The nausea is still a major problem that causes me a lot of anxiety, but it doesn’t happen too often. But for some reason, the fatigue has been worse over the last few months and I just can’t fight it. I can’t push through. I can’t work around it.

I’m going out less. Exercising less. Doing less. Feeling less than.

It’s hard to explain this feeling to people. It isn’t a matter of going to sleep earlier or waking up later or taking naps. I have no reason to think I’ll feel better tomorrow or next week or next month until we figure out the cause and do something to fix it.

And yet I want so badly for it to go away.

This isn’t as bad as the fatigue I had 5 years ago. It took years to improve that, and I want to avoid getting back to that bad place. Still, this level is also limiting, and irritating, and oh so FRUSTRATING!

There is so much I want to do. Today is unseasonably warm and I was going to take a walk around a local Pond. That walk always makes me happy. I’m not in too much pain. But I just don’t have the energy. So much for that plan.

I have lists of things I both need and want to do, and I feel like I can’t do any of it today. Will I manage more than watching tv in my pajamas? I have no idea.

I’m frustrated. And I hate it. I am used to pushing and fighting for things, and I can’t do that. If the fatigue is being caused by an adrenal problem (which is looking likely as we’ve been running tests and ruling out most other potential causes) then pushing and fighting will only make it much worse.

There are no answers today. All I can do is hope it doesn’t last too much longer. And try very hard not to blame myself for not doing more.

So I am writing this in part to complain (hey, what did you expect from a blog titled Chronic Rants?) and in part to offer support to everyone else dealing with fatigue. It can stop us from working, from socializing, from buying groceries, from cleaning the house, from taking a walk, from sitting up. Fatigue sucks. And I hope yours and mine improves very soon. And in the meantime, I hope we can all find good audiobooks and tv shows for when we have enough energy to enjoy them.

(On a side note, I love audiobooks, so if you want suggestions of what to listen to, comment with the kind of stuff you like and I’ll be happy to give you some recommendations! I listen to most genres – adventure, chick lit, historical fiction, murder mysteries, all kinds of non-fiction, etc.)


First kisses and gluten ghosts

January 10, 2018

I recently went on two first dates. And both times, the gluten ghost haunted me.

If you’ve read this blog for a while, you know that I date, but not very often. So going on 2 first dates in a short span is really unusual! And each time I have a promising first date, it’s the same story: how can I tell the person about my gluten issues without making it sound too scary?

I went off gluten 6 years ago, in February 2012, and within months I saw signs of my health improving. It was slow going, and as I eventually learned about the many places gluten was hiding, I got sick less often. Still, I noticed that I often got sick after dates. Not every time, but a fair amount. Maybe it was from stress? Maybe I was overdoing things by going out and having to be “on” for so long?

It took 2.5 years after I first went gluten free, but finally I figured out the problem: kissing! There I was, sitting down with my then-boyfriend, watching him open a beer, when it hit me: he was going to drink that gluten-filled beer, then kiss me, and I bet that would make me sick! I told him my theory and asked him to brush his teeth after the beer, but instead he said he would just skip it. I didn’t get sick that night.

Or any other night I went out with him.

Then we broke up. And the next first date I had went great. I wanted to kiss him and thought, maybe I was wrong. Maybe it was a coincidence. We had met up for ice cream and he only had vanilla, so maybe it’s gluten free anyway! We kissed that night and a few hours later, I was really sick. Huh. So much for wishful thinking.

Ever since then, I have avoided first date kisses. Even if we don’t eat anything, maybe they’re wearing chapstick or lipstick that contains gluten. It’s a big risk.

I asked a friend with Celiac about this and she said she, also, can’t kiss someone who has eating and drunk something with gluten. But she said first dates aren’t a problem, because she doesn’t kiss on the first date anyway. I guess that makes it a bit simpler. For me, though, it’s an issue. I often kiss on the first date if I like the person and it’s reciprocated.

So that brings me to my two recent first dates.

The first went very well. We met for coffee and tea, and totally hit it off. After a couple hours, I suggested we eat lunch. I had already mentioned the Celiac Disease, and suggested a nearby restaurant where I knew I could eat. Over lunch, I found a way to slip in a mention about the kissing issue. I’ve been getting better at that over the years, but it still feels awkward.

After a looooong first date, almost 6 hours together, I knew I wanted to kiss her. But I couldn’t, because we’d just eaten lunch and her lunch was definitely not gluten free! Plus, she was wearing lipstick. Damn!

Thankfully, on our second date she didn’t wear lipstick (I took this as a promising sign) and we did eventually have our first kiss, with no fear of getting glutened. Yay!

Then I went out with the other person. Again, we met for coffee. It was a good first date, but not amazing. I was pretty sure I would go out with him again, though. We had met in the evening, and after an hour and a half the coffee shop was closing, so we said goodnight. I had found a way to mention the Celiac Disease, but not the kissing issue. Not that it was relevant – we had just met (we met online, so this was our first in-person meeting) and it felt more like a get-to-know-you kind of thing than a real date.

So there we were, standing on the sidewalk saying goodnight, when suddenly he was kissing me. I didn’t see it coming! We separated, and while my brain was still trying to figure out what just happened, he kissed me again, and his tongue was in my mouth! Yikes! This was too much. Forgetting the gluten issue, it just didn’t feel right at all. We said goodnight and I walked to my car feeling very confused…. and nervous!

I only saw him drink tea, but had he eaten before that? Would I get really sick? It was nerve-wracking to not know!

The gluten ghost haunted me that night and the next day, and when I didn’t get sick, I was finally able to relax.

These two dates were so different. They felt different both at the time and after the fact. But both had the same gluten ghost haunting them. The first time the ghost prevented me from kissing my date (assuming I wouldn’t have chickened out, that is) and the second time it haunted me afterward from the unexpected and unwanted kisses I received.

Dating is hard enough. I really wish I didn’t have to deal with the gluten ghost complicating it even more!


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