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

The problem with Facebook when you have a chronic illness

May 13, 2014

Chronic illness affects us all in different ways. 10 years ago I was working, dating, and hanging out with friends. I was almost as active as most of my peers. 2 years ago I only left the house two or three times a week, or sometimes less. Some people are as active as healthy folks. Some people are completely housebound. Some people fall somewhere in between those two extremes. But we all have limits of one kind or another.

There’s a lot of talk in psychological analysis of social media about FOMO, which stands for Fear Of Missing Out. This isn’t a new phenomenon, but it’s more pronounced now that we can regularly see the wonderful and spectacular things our peers are up to on Facebook and other social media platforms. I now see pictures posted by people I would have otherwise lost track of years ago. There are children, pets, vacations, jobs, and so many other activities. There’s the occasional complaint about too much work, kids who aren’t sleeping through the night, or the morning’s commute. And of course there are the political and entertainment postings. That all sounds normal to most people.

The problem is, when you’re already feeling isolated and limited, seeing everyone else’s activities can be a bit jealousy-inducing. I’m happy for my friends. I truly am. But I’m also really jealous.

Worse than the jealousy, though, is having nothing to post yourself besides the generic entertainment and political postings. Sure, some people just read the posts and don’t post their own because they’re too busy, too lazy, or prefer their privacy. That’s just fine. But it feels different when the reason is that you have nothing new to post. No job, no travel, no kids, no relationships, no outings…. nothing. This is FOMO to the extreme, because we don’t just fear missing out; we really are missing out. And it feels like it’s obvious to others that we’re missing out, too.

If you have a chronic illness and are active, you’re probably still missing out on something, and it might feel really obvious to you when you see all of the postings by others. When you’re not leaving the house much or at all, you’re missing out on everything.

This is the point in the post where I’m supposed to tell you that it’s ok. There are more important things in life. It is and there are. But it still sucks. I won’t patronize you or myself by saying that we shouldn’t be upset by this, that there’s no point in comparing ourselves to others, etc. We know this and sometimes it helps and sometimes it doesn’t. Sometimes I read Facebook status updates and just feel happy for my friends. Other times I wish I could have joined friends at a concert or posted my own vacation photos. Sometimes I feel so lonely and isolated that I just avoid social media for a while. But inevitably I return.

I’m not offering a solution. I am only offering this one thing: you’re not the only one who feels this way. You’re not alone. And it’s ok. Go ahead, feel bad about what you’re missing. Then go do something fun for yourself, even if it’s something not considered Facebook-worthy, like watching your favorite movie. I’ll be here watching mine.

4 Comments | Expectations, Frustration, Isolation, Limitations, Rants | Tagged: , , , , | Permalink
Posted by chronicrants

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