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

All rainbowed up and no place to go

June 13, 2014

One thing about chronic illness is that I miss out on a lot of events. You name it, I’ve missed it: weddings, dinners out, birthday celebrations, medical appointments, support groups, parties…. Illness doesn’t discriminate. Sure, when there’s an especially important event, I’ll try to rest up in advance, but it’s not like I always have a choice.

This weekend, I’m wondering if I’ll be attending Pride events. For those who don’t know, LGBT Pride is the biggest holiday2014-06-13 17.03.12 of the year. It’s like queer Christmas, Chanukah, and birthdays all rolled into one. It’s something I look forward to for months. As I type, my fingernails are painted in rainbow colors. My buttons and mardi gras beads are ready. And I’ve been feeling crappy all week. Because my illness doesn’t care about Pride. It just acts up whenever it wants to.

Last year there was a hurricane coming up the coast and a bunch of us went out to the Dyke March anyway in the drenching rains. We got soaked, but we were glad we went. The next day was warm and sunny and the Parade was a ton of Rainfun. As usual, I was too tired to go to any of the parties at night or on Sunday, but that was ok, because I went to my top two choices: the Dyke March and the Pride Parade.

This year it’s raining again. It’s not as bad as last year, but it’s not exactly a light rain, either. Check out the view from my window. If I was having a good day, I’d just suck it up and go. But do I really want to do that when I’m already feeling so crappy? No, not really.

Tomorrow is supposed to be cool but with a very high dew point. Which means I may not feel up to going to the Pride Parade either. Plus, just to add in another obstacle, the closest subway station is under construction so I’d have to do even more walking. Oh yeah, and there’s a 50% chance of rain. Ugh.

So maybe I’ll just go to the party on Sunday. And that would be nice. But that’s not what I really want to do. I want to go to the March tonight and to the Parade tomorrow and I don’t want to have to wait another 12 months for my next chance. Plenty of people will skip out because of the weather and that’s their choice. But it wouldn’t be mine. I’ve gone out to both the March and the Parade in the rain before, and I want to do it again. I want it to be my choice, not my body’s. And that’s why I’m feeling so pissed off right now.

3 Comments | Decisions, Expectations, Frustration, Isolation, Limitations, Rants, 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

When even birthdays are overwhelming

May 16, 2014

The thing about being single is that I don’t have automatic birthday plans. When I’ve been dating someone, we’d plan a day together. Sometimes I went out with friends, but I always had that default date. But when I’m single, nothing happens for my birthday unless I plan it. Well, a couple years ago friends threw me a surprise party. But most years nothing happens unless I plan it.

I remember one year I gathered a bunch of friends from different social circles and arranged for us all to meet downtown for dim sum in Chinatown, and then to hang out for a while afterwards. That was a nice birthday. I would never plan something so high-energy now. Two years in a row I got friends together for dinners out. These days I’m not so fond of going out at night.

I thought about skipping by birthday this year. After all, I skipped New Year’s Eve, so why not skip my birthday? To be honest, I might have skipped it if it was on a weekday. With all of my friends at work, it would have been the perfect excuse. But with my birthday on a Sunday, it just seemed too depressing. I should really do something, right?

A friend is going to be visiting from out of town. I thought about doing something with just the two of us, but she has to head back home early in the day. I thought about inviting one or two other friends. And then I figured, what the hell, I’ll have a freaking party. Ok, birthday gods, you win!

Of course, I’m not up to anything high-energy. The party was going to be a bbq at my parents’ house while they’re away, but that felt like way too much effort. I wouldn’t have the energy to get the food and be the hostess and celebrate. It was overwhelming just to think about it.

So I downgraded it. Now it’s going to be an afternoon thing. We’ll just hang out. If the weather is nice, people can throw around a frisbee in the yard. If the weather is lousy (or just too warm for me) then we’ll hang out in the house and play board games, which I really love. Food will be simple and easy to prepare in advance: chips and salsa, cheese and crackers. My mother wants me to have a gluten-free cake, but I told her I don’t care about having a cake. The truth is, I’m already overwhelmed at the idea of hosting and celebrating at the same time. Picking up a cake that morning would just be too damn much. And I really don’t care enough to go to all that trouble.

I have a plan. A plan is good. It’s a start. Now I just hope I feel well enough to go through with it that day, and that’s impossible to predict.

3 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , , | Permalink
Posted by chronicrants

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