Making the good days into great days

June 25, 2014

It’s been one hell of a week. There’s a lot I could write about, both good and bad. I choose to focus on one of the better parts of the last week.

They say old friends are the best friends. I don’t know if that’s true for everyone, but it is for me. I have a lot of wonderful friends, but the ones I’ve known since childhood are just amazing. Part of it is that we’ve known each other for so long. We’ve seen each other through sicknesses, marriages, children, graduations, job changes, big things, small things, and everything else. Part of it is that they just happen to be really wonderful human beings. And the other day we were all in the same place, at the same time.

We don’t have many reunions. It’s gotten harder as everyone has had kids. I can’t imagine how much harder it will be if more people more away, or if people move farther than driving distance. It had been over a year, and we were so excited to see each other! As my mother said when she saw the photos, “The smiles on everyone’s faces just says it all.” She’s right.

I was nervous about my health leading up to the reunion. In general I was worried about how I’d feel in the heat of late June (though everyone agreed to keep the party indoors in air conditioning if I needed it.) More specifically, as the time came, I was feeling particularly lousy. I got incredibly lucky with the weather; not only was it an unusually great June, but the days leading up to our get-together weren’t hot or humid, and the days of were good, too. That helped a lot. Still, I felt horrible for other reasons. I won’t give the full back story here (like I said, I’m focusing on the good things,) but basically there were adrenal problems that triggered all sorts of symptoms and my supplements just weren’t doing the trick.

If this had been any other gathering with friends, I would have simply cancelled. But I’d been looking forward to this for many months and I wasn’t about to miss it! So for two days I ate very little, I took extra adrenal supplements, I adjusted my sleep patterns, and I just pushed through. I felt lousy, but I hid it the best I could. Everyone knows about my health issues and they are the most supportive friends I could ask for. But just once, I wanted to have conversations that didn’t even touch on my health. So I hid how I felt. And I had a great time. I had so much fun with my friends, that I was able to ignore my aches, pains, nausea, and the rest for most of the night and the next day. I got down on the ground, I held babies, I fetched things for others, and I faked it til I made it – and it worked!

Pushing through sometimes works for me, but it’s rare. Very rare. Incredibly rare. I-can-count-it-on-my-fingers rare. But if it’s going to happen just once, I’m glad it was for those days. They were just fantastic. I couldn’t have asked for better. And I’ll be holding on to those memories as I anticipate our next reunion. Hopefully I won’t have to wait another year! And hopefully I’ll feel ok.

4 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Limitations, Medication, Pain, Raves, Relationships: Family & Friends & Dating & Sex, Unpredictable | Permalink
Posted by chronicrants

A little petting goes a long way

June 17, 2014

It wasn’t hard to see the pattern: I would pet an animal, usually a dog, and feel really happy afterwards. It’s probably been that way my whole life, but I’ve been noticing it more over the last few years. I think that as my health has gotten worse and PoochI’ve been leaving the house less, the joy of being around pets has been more pronounced.

The guy on the right is awesome. He almost always makes me feel better. But I don’t get to see him very often. (And yes, there’s a dog under all that fur!) I need to find a way to pet dogs more often.

Some days I don’t leave the house. Other days I just drive to a doctor appointment or do the grocery store. But when I’m able to walk around my neighborhood, I often see people walking their dogs. Like a little kid, I walk up to strangers and ask to pet their dogs. I’m friendly, and I tell the owners how beautiful/cute/sweet/smart their dogs are, so they’re happy to chat while I pet. This helps, but it’s not enough.

I’ve been thinking that since I can’t care of a  dog myself, maybe I should find a way to volunteer at a shelter. With my health issues, of course, I wouldn’t be a very reliable volunteer. But when I saw dozens of cute pooches at the Pride Parade this weekend, I just knew I had to try. Businesses of all kinds set up booths at the festival that follows the parade. Several sell gear for cats and dogs (rainbow bandanas, rainbow leashes, etc.) There were also a couple of nonprofits that work with animals. I was familiar with one of them, so I asked about volunteer opportunities. It might be a good fit.

I’m still nervous about trying to commit to something when I can never be sure in advance which days I’ll be able to leave the house, but it’s sure with trying. Because after petting those dogs at Pride I sure felt a lot better!

7 Comments | Medication, Pain, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Feeling too sick to remember how to feel better

May 30, 2014

If I get a cold, I know what to do. I know to drink decaf tea. I know to eat certain foods. I know which medications to take and when and why. But the second I have a fever, all that good knowledge gets lost somewhere in my brain and I forget what I’m supposed to do. When I talk to a friend or my mom, though, they remind me. Too bad they don’t know what to suggest for my extreme fatigue.

Even in my lousy state, I knew it started with all of the extra activity on Saturday. I did a lot that day, moving and being alert almost nonstop from 7am to 3pm, and I assumed that was the cause. Or maybe I ate something I shouldn’t have when I went out to lunch on Saturday. I was careful, but you never know. In the haze, I knew I shouldn’t push myself. I watched a lot of tv, read, watched movies, read, watched more tv, and read some more. I left the house for groceries and for a medical appointment, and felt much worse after each outing. It bothered me so much that no one knew why this was happening.

Except someone did. I did. Or I would have, if only I could have thought clearly. I knew I wasn’t thinking clearly. I knew there was a metaphorical strip of gauze over my brain, obscuring the information inside. Thank goodness I was able to peak under the gauze for just a moment last night. That changed everything.

Last night it occurred to me that I could take an Isocort tablet. Isocort is a supplement that can be used to help treat less severe adrenal insufficiency. At one point I was taking 5 tablets. When I eventually weaned off of it, my naturopath told me to take it occasionally as needed (and we discussed what “as needed” meant.) Thankfully, I had a fair amount left, since it’s since been discontinued. I almost never take it, but last night it occurred to me that I should. However, even in my poor cognitive state, I knew better than to take it at night. Thankfully, I knew enough to take it out and leave it with my other pills where I wouldn’t miss it.

This morning I wanted to try getting by without the Isocort. Ah, what a state I was in to think that could happen. I finally took one tablet around 1pm, knowing I still had time to take more in the afternoon if I needed to. I didn’t need to. By 3pm I was feeling much better, and at 3:30 I went out for a short walk. It felt so good!

More than the physical improvement was the cognitive improvement. The gauze lifted, and it all made sense. I should have taken Isocort preventatively on Saturday. I’ll do that the next time I’m in a similar situation. I overdid things on Saturday and that caused my adrenal gland to go on vacation for a bit. While it was lying on a beach in Malibu, I was suffering. Taking an Isocort or two on Sunday would have helped me to recover more quickly. Resting so much was the right thing to do, but I needed to support my adrenal glands also. Without that support, they weren’t about to return from their peaceful vacation away from my overwrought body. And of course, each extra bit of activity, each outing, only made me feel worse as my adrenals retreated even further.

Today is Friday. It took four days for me to realize that Saturday’s activities were the trigger to my recent downturn. It took another day to realize what I should do about it. And it wasn’t until I felt better that I figured out what really happened. So the question is, what do I do differently next time? Obviously I should take preventative measures, but usually I don’t know I’ll need to. By the time I would figure it out, I’m no longer thinking clearly enough to do it. I can write down a list of things to do the next time I feel fatigued, but that only works if I remember to look at the list. I don’t think I can trust myself, so I’ll do the only other thing I can think of: I’ll tell my parents and a few close friends what to suggest the next time I tell them I’m fatigued. With any luck, at least one of them will suggest the right thing and I’ll take that advice. But if I don’t, and if I write again about a downturn involving fatigue, I hope one of you will point me back to this post!

6 Comments | Educating, Fatigue, Frustration, Isolation, Limitations, Medication, Rants, Support, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

Sliding backwards

April 28, 2014

Sometimes I feel like Sisyphus. I keep trying so hard to get better, and I keep having setbacks. And yet, I know I’m one of the lucky ones.

I’m one of the lucky ones because I’ve seen improvement overall.

So I’m frustrated and grateful, scared and excited, angry and glad, whipping back and forth between different emotions as my physical health changes. I’m so glad I was able to go to a family party yesterday and still feel ok afterwards, but I’m frustrated that I don’t feel up to going out to dinner with friends tonight. I’m glad that I’ll probably feel up to going to a doctor appointment tomorrow, but frustrated that I probably won’t feel up to doing laundry afterwards. I see a bright future, but I wonder if I’ll ever reach it. It’s like the carrot being dangled in front of me. Family, friends, my naturopath… they all say that one day I’ll grab that carrot, but no one says that it will still be crunchy and delicious. Maybe by then it will have gone bad. Instead of working and socializing and living a so-called normal life, I’ll only be able to work a bit and then be too sick to socialize. Maybe I’ll never really be able to date again. Maybe my dream of being able to actually give a solid RSVP to an event is nothing but that: a dream.

Two weeks ago I was feeling pretty good. I had been seeing a lot of improvement since starting a CPAP machine. I was on a new medication. Things were looking up! I was feeling better than I had in ages and I thought it would continue. The pattern was clear: 3-4 days of feeling great, 1-2 days of feeling crappy, and another day of feeling so-so. It wasn’t perfect, but it was a great sign that things would continue to improve. And then that pattern ended. I don’t know why. Technically, nothing changed. I thought I was in transition towards a better stage of health but maybe that wasn’t it, afterall.

I am trying to focus on the positive. I feel so much better than I did two years ago. I feel better than I did even 6 months ago. And I guess that’s the difference between me and Sisyphus: so far, I haven’t had to start over in this most recent journey. I slide backwards, but not completely. That means that the next time I improve, I’m starting from a higher point. It’s not perfect, but I’m grateful for it.

So right now, as the dark clouds are rolling in and my seasonal affective disorder is kicking up, as my body aches and the fatigue is ever-present, as I wonder if I’ll ever reach that carrot of a future, I’m trying very hard to see the last few years for what they’ve been, and be glad that, at least right now, I seem to be done with them.

 

10 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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