Feeling better but not better enough

November 4, 2016

My doctor ran through my symptoms. How’s x? How’s y? And what’s new with z? Standard stuff. And to each one I said I was doing much better these days. Stable. Feeling ok.

So then why do I still feel so limited?

My pain is lessened to the point that I can completely ignore it – as long as I stay within my limitations, of course. No riding a bike or lifting heavy babies.

The nausea is gone. This is the best thing in the world!

My period sucked big time, but that’s over and I won’t have to deal with it again for 2 more months.

Even my fatigue isn’t as bad.

So why can’t I work a full time job? Why can’t I take a really long walk? Why can’t I travel? Why can’t I clean my apartment?

And the answer is, it’s not enough.

I’m feeling so much better than I was a few years ago, but I still have a long way to go. My friends take a walk and I can’t keep up. I have a fun afternoon and need to lie down to rest partway through. I cook dinner, and I’m in pain from standing and fatigued from the activity.

I’m excited for the progress. Really. And also frustrated at my continued limitations.

Will I ever see further improvement? Am I kidding myself if I keep trying?

I don’t know. But it sure beats the alternative: giving up.

There’s no better option. I have to keep trying. And even though it’s not enough, better is still better. And I’ll take it.

 

2 Comments | Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Using instinct to set limitations

October 31, 2016

Sometimes there’s no good answer to “Why can’t you do that?” It’s not as simple as “My doctor told me not to” or “I’ll be in too much pain.” Sometimes it’s a gut instinct response. I just know it’s a bad idea, even though I can’t put into words exactly why.

That’s how I feel about traveling right now. I think I can do it. I tell myself I’m ready. But when it comes to it, I feel like I shouldn’t. For a while I thought fear was holding me back. And it is. That’s definitely part of it, but not all of it.

Last weekend was a good example. I did everything “right.” I packed my bag in advance as much as I could. I took an extra adrenal supplement. I took various other supplements and medications that I thought would help. And they did. That’s why I felt horribly ill, but not so bad that I started to think death might be better. That’s the difference: I didn’t think about death.

So it was an improvement, but it still wasn’t fantastic. I felt like crap for hours, despite being super careful. I monitored and moderated my activity levels. I did everything right. But it wasn’t enough.

Last weekend’s trip involved a 3 hour drive – and someone else drove.

What would happen if I flew 5 hours? A friend wants me to visit. They’ve offered to pay for the plane ticket for me. I’d love to visit, but is it worth it? It’s a long flight. In tiny, uncomfortable seats. It could be longer if the flight is delayed. There’s time in the airport, plus getting to and from the airport. There’s the time change – a 3 hour difference.

How would I feel? Worse than after a drive? Certainly. I wouldn’t be able to bring cannabis on the plane with me, so that would make the following hours significantly worse.

In the end, though, I’d survive it. I always have. So why not go?

Because my gut tells me not to. My instinct is that I’d feel horrible for at least a few days, and by the time I started to feel more or less like myself, I’d be on the plane back home. It’s not worth it. Not now, at least.

The problem is that it’s hard to explain all of this in a way that makes sense to other people. I try, and they say I should just do it and it will be fine. I’m letting my fear stop me. I’m thinking about it too much. I should just go and have fun.

That all sounds great. But they don’t live in my body. I know my body. And I’d rather follow my instinct.

Do you have times you follow your instinct and can’t put the reasons into words? How do you explain those things to people? Please comment and share your experiences!

4 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Medication, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

What the hell, Mother Nature?

October 17, 2016

Like many people with autoimmune diseases, summer is not my friend. The heat and humidity combine to make me miserable, and there’s very little I can do about it. I stay in air conditioning. I rest. And I feel lousy.

And then fall comes, and all is right with the world. In the last few weeks, I saw a huge transformation. My mood improved, I was in less pain, I had more energy. I felt better, I looked better, life was better!

I was loving every single minute of it. I could take walks outside again. I could sit outside and read a book. Things were GOOD!

And then they weren’t. Mother Nature got confused. She forgot that it’s supposed to be autumn here in Boston. She forgot about our low humidity and cooler temperatures. And she went back to summer.

It’s not that hot, thankfully. But it’s warmer than it should be. And it’s humid. Very humid. A few days ago it was 58 degrees and dry, and later this week it will be 82 and humid. What the fuck, Mother Nature?

Even worse, I can’t use air conditioning. I have window units that have already been taken out for the season. They’re in the basement. If I could snap my fingers and have a magic fairy godmother put them back in, I would, but unfortunately that’s just not an option.

So I feel crappy and I don’t even know how I feel crappy. I’m in more pain, but not much more. I’m more fatigued, but not much more. My mood is worse, that’s for sure. But I can’t put my finger on any particular reason why this weather is so unpleasant for me. I wish I could.

The windows are closed. No fresh air. It’s more humid outside than inside. No fans in the windows, either. No long walks. No short walks. Not much of anything. Just waiting. Waiting for the weather to improve, because what else can I do?

And in the meantime, it’s screwing up my schedule. It’s too hot and humid to do laundry. It’s too hot and humid to cook. It’s too hot and humid to do any of the things I most need to do.

I was loving my jeans and fleece jacket. I’m not ready to go back to shorts and tank tops. So please, Mother Nature, please please please remember that this is fall, and give us back the cool, dry days!

 

2 Comments | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The skill I wish I didn’t need: removing bloodstains

October 15, 2016

I remember the night, around 3am, when my mom taught me how to remove bloodstains.

I got a lot of nosebleeds as a kid. So did most of our family. Luckily, we grow out of them as we get older, and I only get a half dozen or so every year now. Yeah, only.

Some nosebleeds came during the day, and some at night. Usually I woke up fast, since it affected my breathing, but this time I didn’t, and blood got all over my pillowcase. A light sleeper, my mom heard the running water down the hall, and came to investigate. She found me trying to wash the blood out. Instead of doing it for me like she had in the past, she decided it was time I learned how to do it myself, so she showed me what to do. Then she put a clean pillowcase on my pillow and I went back to sleep.

Fun times.

These days, I sometimes still use that skill, but these past two days I’ve used it far too much.

Thanks to PCOS (polycycstic ovary syndrome) my period is always an unpredictable adventure. Sometimes I don’t get it for a year. Then I get it too frequently. Right now I only get it with the help of hormones, but the hormones make me very sick. So the plan my doctor and I created is to only take them for 1 week every three months. That way I’ll bleed (my endometrial lining was building up too much, so unfortunately I can’t just avoid it altogether) but I won’t have to get sick from the hormones all month, every month.

I timed it carefully. I need to allow up to 2 weeks of feeling crappy – 1 week for the hormones and 1 week for my period. I waited until after the pooch left, then took them immediately, because I need my period to be over before I go on a short but much-anticipated trip next weekend with my girlfriends (our first girls’ weekend together!)

It was a good move, because I’m miserable. By the last days of taking the hormones I was fatigued, nauseated, and just feeling lousy, plus moody. Then after 2 days off the hormones, during which the crappy feelings continued, I got my period. And it was heavy. Very heavy. And it still is.

And that’s why in just the past day and a half I have washed bloodstains out of 3 pairs of underwear, 1 pair of pants, and 1 bedsheet. And that’s why it’s noon and I am sitting in my pajamas with no plans or desire to leave the house today. I don’t even want to deal with showering.

It’s a gorgeous day out. The New England fall colors are lovely. Normally I would be outside as much possible. But I’m bloody and crampy and just feeling blah. I’m grumpy  and irritable. I’ve had to wake up in the middle of the night two nights in a row to deal with pads full of blood and various bloodstains. And I curse the biology that makes this happen.

But in a few days this will be over, and I will have 3 blissful months with no period, and only removing my more mundane bloodstains – the ones from random scrapes and cuts, mostly from my own clumsiness.

Won’t that be nice?

Is it just me? Do you have unfortunate bloodstain-removing skills also? Please share in the comments!

5 Comments | Decisions, Gastrointestinal, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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