A day off means something else when you have a chronic illness

April 2, 2014

For most of my life, “a day off” meant a weekday that I didn’t go to work or school, wasn’t in bed sick, and could do whatever I wanted.

About a dozen years ago I took “a day off” for the first time that didn’t involve any travel. I didn’t go to work, I got extra sleep, I took the car in for some work that needed to be done, I cleaned the apartment, and I indulged in some hobbies. By the end of the day, I felt fantastic – rested, relaxed, and productive. I remember it so well.

These days “a day off” is a completely different animal. For one thing, I’m not in school or working at a job, so that’s not relevant. Instead, I spend a lot of my time dealing with health issues. I can never get away from my health problems; those are and will always be with me. I can almost get away from some of the logistical issues, though. And I can ignore the “to do” list that needs doing.

I woke up feeling horrible. I’m more exhausted than I have been in a while. So many muscles ache that don’t usually ache. I woke up not wanting to do anything. Luckily for me, I didn’t have anything scheduled today, medical, social or otherwise. So I decided to take “a day off.” There’s so much I should be doing, but I’m not. I should be making phone calls to find a therapist. I should be dealing with a form from my lawyer. I should be doing laundry. I should be changing the sheets on my bed. I should be taking a walk on this rare sunny afternoon. I should have put food in the crockpot this morning. I should be getting a long-overdue haircut. Doing even two of these things would make me feel very productive, but instead I’m not doing any of them. No, instead I’m taking “a day off.”

Here’s what I have been and will be doing:

  • Took a shower at 4pm. I put it off as long as I could, but in the end I felt sort of gross and decided it was worth it.
  • Emailed with some friends (but ignored all of my other emails.)
  • Fill my pill boxes for the week. I do this every Wednesday. I don’t want to do it, and I’ve been putting it off, but it really has to be done today.
  • Watched tv. Will watch more tv.
  • Read my book. Will read more.
  • Knitted. Will knit more.
  • Writing this blog post.
  • Ate leftovers. Will eat more leftovers
  • Will wash dishes. Because there’s no one else to do it.

I haven’t decided yet about my physical therapy exercises. I should do them, but I’m just so tired, and they take so much effort, and it’s my day off, so I don’t want to even think about it. But I know I need to.

So at the end of today, I won’t feel rested, relaxed, and productive like I did that day 12 years ago. But maybe I won’t feel any worse than I did when I woke up this morning. If that happens, I’ll consider it a successful day.

Leave a Comment » | Expectations, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Why do folks focus on a treatment’s potential problems?

March 19, 2014

I mentioned in my last post that I’m going to start using a CPAP machine soon. It’s used for sleep apnea, which isn’t too uncommon, so most people know someone who has tried one, or have tried one themselves. It was just a small note that had little to do with the main point of my article, but still, I noticed that no one commented on it, even though they commented on other parts of the article. I noticed it because that’s not what’s happened with my in-person interactions lately.

I can’t criticize people for commenting on other’s lives, because I do it too. Actually, I probably do it more than most people. But there’s a big difference between commenting and pointing out the negatives. What’s even worse is that in this case, people are pointing out negatives without offering solutions. So why are they doing this?

For years now I’ve been fatigued. I’m unable to work. I barely date. I miss all sorts of social events. I feel lousy. Now we discover that I have a form of sleep apnea and a CPAP machine could help. There’s no guarantee, of course, but it might help, so why on earth wouldn’t I try it? In fact, I’m excited to try it! That’s why I’ve already mentioned it to quite a few people, and why I’m so annoyed that almost every single time, the response has been to point out potential problems with it. They tell me about a friend who was bothered by the noise, an ex-lover whose skin was irritated by the mask, an acquaintance who got tangled up in the cord. They tell me about these problems and I don’t know why. Are they suggesting that I shouldn’t even try it because one person they know had a problem with it? Are they suggesting that I continue to feel horrible and not even attempt to fix it because I might be inconvenienced?

Well let me tell you, I’m already inconvenienced. A lot. And I’m not about to let worry about some little inconvenience stop me. If that was the case, I wouldn’t have changed my diet and I’d still be feeling nauseated all day every day. If that was the case, I wouldn’t have changed my thyroid medications and found the improvement in energy levels that I have. If that was the case, I never would have done my own medical research. If that was the case, I wouldn’t have improved at all over the last 2+ years.

Today I emailed my family and friends with a health update. I do that occasionally. When I mentioned the CPAP machine, I included this:

“Note: Please do not tell me how terrible CPAP machines are. Just don’t. Almost every person I’ve mentioned this to has told me they don’t work, they’re loud, they’re ugly, they’re uncomfortable, etc. If I had a gas leak, would you tell me not to fix it because of the hassle of calling the gas company? If I had cancer, would you tell me not to get chemo because of the side effects? No? Ok, then please don’t say anything negative about this medical treatment unless you’re also telling me how to fix said problem.”

So far, I have received only positive or neutral feedback. They’ve congratulated me on taking this step. They’ve said that they hope it works. I got one story of a friend who was helped by it. So from now on, when I tell people about the CPAP machine, no matter how well I do or don’t know them, I’ll preface it with that paragraph. It may be rude, but I don’t care. Taking care of my health is the hardest thing I have ever done, or probably will ever do, and I don’t need the “help” of negative feedback from ignorant people.

Oh, and by the way, I’ll get the CPAP machine in just two short days! Yay!

13 Comments | Decisions, Educating, Expectations, Fatigue, Frustration, Insensitive, Rants, Symptoms | Permalink
Posted by chronicrants

Life with chronic illness: a bigger suitcase

March 17, 2014

It used to be that when I was going to spend the night someplace, I’d quickly throw some things in a bag and head out the door. Toiletries, change of clothes, a book… I didn’t need much.

Then I started having to add pills. Lots of pills. And a sunlamp. And I still had the clothes, toiletries and book, of course.It 20131202_162116took longer to pack. And I needed a bigger bag.

When I went gluten-free, I had to bring food with me. Leftovers for lunch and dinner. A container of gluten-free oatmeal for lunch. Snacks. Oh, and all of the pills, clothes, toiletries, and a book. And an extra bag and a cooler

Now I’ll be adding something new to the list: a CPAP machine. If it works it’ll be worth it. But it’s heavy. And in addition to the CPAP I still have to bring the food and the pills and the clothes, toiletries, book. Now in addition to the cooler and bag of food, I’ll need a rolling suitcase. For one night. What happens when I go away for longer.

This isn’t the end of the world, but it illustrates my point. Life is hard for everyone. We all worry about our family, our friends, money, jobs, etc. But having a chronic illness means more thinking, more planning, more effort. It means not being able to just throw clothes in a bag and run out the door. It means thinking everything through very carefully. It means considering every angle, every possible outcome, before making a decision.

It means packing a bigger suitcase.

11 Comments | Decisions, Educating, Expectations, Frustration, Limitations, Rants | Permalink
Posted by chronicrants

The myth of a healthy youth myth

March 4, 2014

I can’t believe I had this conversation again today. The details vary, but it always goes something like this:

Me: I want to get healthy while I’m young enough to enjoy it.

Other person: Well, the “healthy youth” thing is really a myth. Not everyone feels good, and people get sick, and we’re busy taking care of kids so we can’t go out much anyway. And lots of older people feel great and are active, so maybe you’ll be one of those. Besides, we’ll all be feeling like you one day anyway, and then we’ll all be on the same page.

Yes, people really say this shit. Ok, let’s start with the first thing: the healthy youth myth. That myth idea is a myth itself. I’m not saying that people without chronic illnesses are healthy all the time. They might get the flu or headaches or whatever. Some days they just feel like crap. Sure, I get that. But the point is that they recover! They don’t continue to have the flu for the next 30 years.

Next, just because you use your energy-filled, pain-free days to do things other than jet off to Paris and go to fancy clubs, doesn’t mean you aren’t enjoying your youth. Do you have any idea how many of us would like to have kids but don’t have the energy to take care of them? So while you might say you can’t party because you have kids, others of us say we can’t party OR have kids. See the difference?

I’m not suggesting that every 20- and 30-something parties 7 nights a week. But I’m suggesting they can go to parties on Saturday nights. I’m suggesting they can attend a lecture on Tuesday evening. I’m suggesting they can take a shower and cook a meal without feeling like shit.

And yes, some older folks feel good and are active. But if I feel like shit at 30 and 40 and 50 and 60, do you really think I’ll be skiing and skydiving and traveling and going out with friends at 70 and 80? Do you know any of those active elderly? Maybe it’s just a coincidence (I really doubt it) but all of them were healthy active in their youth and in their middle age and then they continued to be active. You can’t expect an unhealthy body to magically get healthier as it ages. The chances that I’ll feel better at 80 than at 30 are really incredibly slim. And besides, at best I could feel good compared to a typical 80-year-old, but I’ll never get the chance to feel as good as a 30-something again!

And sure, maybe one day my friends will all be tired and in pain with arthritis. But they’ll have already had all of the experiences of youth! That’s the point! Yes, maybe one day we’ll all feel equally miserable. (Though to be honest, I think I experienced more pain and fatigue at 32 than my grandparents did when they were 80. At 80 they were still hopping on planes and traveling. Not me. They still went out with friends all the time. Not me. Just saying.) But when we stiffly sit in our chairs with our achy joints at 80, they’ll be surrounded by kids and grandkids if they chose to have them, and they’ll remember all of their fun adventures and activities from when they were younger, while I’ll remember days of my life seemingly wasted sorting through medical records and insurance forms, feeling lousy, watching tv and ready and missing out on parties and outings that I really wanted to attend. Yes, I’ll have fun times to remember, but not as many. Hopefully I’ll have let go of the anger and sadness of not being able to have children, but maybe not.

So to all of you out there who spout the myth of the healthy youth myth, I’m telling you it’s not a myth. Spend just two months pretending you have the flu. Leave your job, turn down every invitation you’re offered, don’t accept invitations. Now tell me if you feel like your old life allows you to be active or not. I’m guessing you’ll feel pretty damn healthy by comparison. If you’re tired because you stayed out at the bar too late, go to sleep earlier next time, but don’t pretend you have it so tough. At least you have a choice.

I was going to give an update today on the doctor planet orbit, but I was too upset. So please accept my rant as just that (a rant), and I’ll resume my normally unscheduled blogging tomorrow.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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