My calendar says I’m recovering that day

April 19, 2016

I used to call them do-nothing days. Or resting days. Or dead days. Lately I’ve been calling them Recovery Days. Because that’s what they are. I’m not doing nothing, I’m recovering!Recovery Day

Our culture says that a day of watching tv when you should be buying groceries and cleaning and going to a job and and and…. is lazy. I say that if you have a chronic illness, sometimes it’s necessary.

I had a recovery day yesterday. I could have pushed myself. I had a long list of things to do. If I’d pushed myself I might have been able to get a couple of things done. But I wouldn’t have gotten far on that list, and I would have done things badly. Then I’d have felt lousy today and I’d have barely gotten anything done at all. Sound familiar?

I used to push myself. At the time it seemed like a good idea. Now I know that pushing myself too much just means I’ll eventually hit the wall and I won’t be able to do anything at all.

So instead I took a Recovery Day. I didn’t leave the apartment. I read. I watched tv. I heated up leftovers for meals. That was it.

And today I felt better! I was able to go out and run errands. I’m sitting in a chair and writing this now (not an easy thing!) For me, that’s a super productive day.

Sometimes my Recovery Days are predictable. I can look at my calendar right now and tell you that I’ll be taking a Recovery Day on Sunday, so that’s blocked out on my calendar. I knew I’d probably be taking one yesterday, too, but I wasn’t completely sure until around 10am. I could just feel it, and there was no doubt it’s what I needed.

I used to take Recovery Days 3-5 days per week. If I left the house for an hour, the next day would be a Recovery Day. These days I’m feeling better and I only need them 1-2 times per week – yay! Of course, even now I have bad weeks, too. Sometimes a Recovery Day means spending all day in pajamas and doing nothing but watching tv. Sometimes it’s multiple days of that. Yesterday I felt better and was able to read a novel for a while. All that really matters, though, is that I gave my body the rest that it needed, in the form that it needed.

I know I’m lucky. I don’t have children or anyone else to take care of. I’m not working (though that’s not exactly a good thing.) So I’m able to spend an entire day indoors. I’m able to rest when I need to. But there are other things I should do on my Recovery Days that I can’t. I accommodate myself the best that I can. That’s all any of us can do.

You might have noticed that I’ve been capitalizing Recovery Day. That’s because it’s IMPORTANT! I think we don’t give ourselves enough credit for how hard these days are. We let culture pressure us into thinking we’re not doing enough when in reality we’re doing so much. Sometimes, it’s all we can do to get through these days. I’d rather go to the gym for 4 hours than need some of these Recovery Days. But I don’t have a choice, and I accept that (but it took me many years to finally accept it.)

How do you feel about your Recovery Days? Are you willing to rest when your body needs it? What do you do? How do you handle it? Please let me know in the comments so we can learn from each other!

15 Comments | Decisions, Expectations, Fatigue, Isolation, Limitations, Pain, Raves, Symptoms, Unpredictable | Tagged: , , | Permalink
Posted by chronicrants

There’s no such thing as a chronic illness schedule

March 21, 2016

I used to work in an office. Back then, my chronic illnesses were more manageable.

Then I worked in an office 4 days a week and from home the 5th day. That helped. But eventually, that wasn’t enough.

Now I don’t have a job at all. Still, I’ve been making some money here and there when I can. Consulting work has gone ok, but I’d like to do something different. The problem with consulting is that I have to be ready to work at a particular time and place. Sure, I can often schedule the at-home part of the work whenever I want, but I have to meet with clients too. That part is really tough with a chronic illness. And that means I can’t take on as many clients as I need to.

I like the idea of “passive income.” With this method, I do the work up front and the money comes in later, without me having to be present at a particular time and place. For example, imagine I wrote a book. I’d put in a lot of effort up front on my own schedule to write it and market it, then when it came out I’d do some more marketing, but it would be less work at that point. The money would come in, but I’d have already done more of the work from the comfort of my living at my own pace. Sounds good, right?

The thing is, the work still has to be done. And I’m having trouble making that happen consistently.

I’ve found some other people who are trying to do similar things. One is married, has a young baby, and works a full time job, yet she works on her business more consistently than I work on mine. Then again, she doesn’t have a chronic illness. That doesn’t mean her life is easier or that she has more hours in the day. I’m constantly amazed by how productive she is. But it does mean that her schedule is fairly predictable. She works on the bus to and from her job each day. She works at night after the baby is in bed. She carves out time every weekend.

By comparison, I can’t even get a morning routine going. Some mornings I wake up and can do work within an hour or two. Other days I’m not able to do any work at all, and I go to bed without having even tried. Some days I get a lot done, but it has nothing to do with the new business. Today I wrote a blog post for that business and did a bit of reading. That’s not too bad. I also filed away some personal papers, sold something on Craigslist, did a ton of texting with various people, fixed something small on my mother’s computer, cleaned out my email inbox, made some phone calls, prepared an easy dinner and did the dishes, and took a shower. For someone else, that wouldn’t sound like much. Except for dinner, they’d do all of that before they left for work in the morning and on their lunch break. But for me, that was a lot. I had a busy weekend and I didn’t feel great. I never went outside. I wanted to bake, but never got to it. In fact, there’s a lot I wanted to do that I never got to. But I feel good about having done all of that. For me, that’s really big!

And that’s the problem. The every day things in life still have to be done, and I never know which days I’ll barely be able to get those things done and which days I’ll have the energy for a little extra. That means I can’t set a schedule.

I would love to say that I’ll get up at 8am every day, eat breakfast and work until 11am, exercise (ha!) and eat lunch, do personal stuff until 3pm, then have the rest of the day free. Or maybe do more work in the afternoon. But I can’t do anything like that. Every day is so different. Today I’m in too much pain to walk down a flight of stairs. Another day stairs are no big deal. Some days I can’t doing any writing because my brain just won’t function well enough. Other days I zip off a blog post in 1/2 hour. There’s no way to plan it. It just is.

It’s hard to explain all of this to the other entrepreneurs I talk to. They can’t understand why, without a job, I can’t put in more time on my business. And I get frustrated that even on my best days I can’t put in as much time as they do on their worst. I’m trying, but it’s just not working.

I know I need a schedule of some sort. That’s how I work best. This fit-the-work-in-when-I-can method means that other things get in the way and I end up answering emails and scanning Facebook instead of working. I need a better method.

If only I knew what that was.

Edit [3/23/16]: I just came across this post today (good timing!) and want to share it. If you’re looking for a way to earn some money yourself, maybe it will give you some useful ideas.

11 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Rants, Symptoms, Unpredictable | Tagged: , , , | Permalink
Posted by chronicrants

I got a dog. Maybe.

March 4, 2016

I had expected to write an excited posted filled with happy stories and cute dog photos. Instead, I’m caught in a limbo, unsure what to do.

I’ve wanted a dog for ages. I grew up with a dog and I’ve always loved dogs. In my 20s I 2016-03-01 18.55.33worked and traveled too much for a dog. I wasn’t ready for the responsibility. In my early 30s my health was too bad for a dog. Then last year, I was talking to a friend for the millionth time about how much I wanted a dog, but that I couldn’t manage all of the walks. She pointed out that I could litter train a dog.

Suddenly, getting a dog seemed feasible. I could walk her once a day and play with her indoors for exercise and have her use the litter the rest of the time. This could totally work. I’d have a lovely companion. A furbaby. Someone to love and someone to love me. I could finally get my dog!

After a ridiculous amount of thinking and over analyzing, checking with doctors and working out logistics with my landlord, then recovering from my foot accident, it was finally time. I sent out several applications. And then the call came: my application was being processed for a little cutie named Roxanne!

Roxanne is a darling. She is sweet and beautiful. She’s housebroken, so in some ways she’s a lot less work at this stage than I expected. She’s got big ears and lovely markings and a tail that’s almost always wagging. Right now, she’s sitting in my lap.

And I don’t know if I’m going to keep her.

If the rescue agency had said the adoption was final, maybe I’d have a different mindset. I’ll never know. Instead, they said this was a foster-to-adopt. I had 2 weeks to decide. After two weeks, I could return her to her last foster home and get almost all of my money back. I shrugged it off when they said that; of course this was permanent! But now I’m not so sure….

Even in the first days, I had doubts. I tried to ignore them. I decided to try the fake-it-til-I-make-it approach. I emailed my loved ones about the adoption. I posted on Facebook. It wasn’t quite working. I was overwhelmed and exhausted and not sure if she was really going to be mine. I posted a more hesitant teaser on this blog. My parents visited to see if they could offer some insight. I spoke to friends with dogs. I talked to her new vet.

And I still don’t know what to do.

At first, I felt like she was too hyper. But that was mostly her acting out as she adjusted to a new place, combined with me not handling it in the best way. Really, she’s so great, there’s nothing particularly “wrong” with her. I just wonder if I can really fit Roxanne into my life.

I had a good thing going. But it was tenuous at best. I was starting to do some paid work, but I was having trouble finding time and energy for it. I was hoping to even start dating again soon, but there was no time or energy for that. My health was doing ok, but I wasn’t doing my exercises consistently. Still, it was going pretty well overall.

I want to give Roxanne back, but I’m not entirely sure why.

If I want to give her back because I don’t think I can fit her into my life without giving up something I shouldn’t (like paid work or physical therapy), then I have to give her back. But if I want to give her back because I got used to having no responsibilities, that’s not a good enough reason. If I want to give her back because I’m scared of the unknown, that’s not a good enough reason.

I used to make changes in my life. A lot of them. I changed cities. I changed jobs. I traveled. Now, I haven’t been on an airplane in 5 years. I’ve been in the same apartment for 10 years. I haven’t been working. My life has been fairly stable. I think stability can be good. I need it to a certain extent. But it can make me complacent. Roxanne would definitely change things up, and maybe that’s the part that’s scaring me. In a life where chronic illness takes away my sense of having any control at all over my life, that stability gave me a small measure of control that I could hold on to. Am I ready to rock that boat?

Or maybe I just didn’t fully understand just how much work a dog would be, and it’s too much for me.

I would love any and all thoughts, advice, and tips you can offer! Please comment below. Do you have a dog? How do you balance dog care with chronic illness? Do you feel that you shy away from new things because you’ve become set in your ways? Really, please share anything you think of. Maybe it will help me.

Right now I’m leaning towards giving Roxanne back. I’m not sure if I can manage having her. But this would also mean giving up on my dream of dog ownership, at least for now (maybe down the road I’d feel more ready?) Not to mention, I would miss her and feel terrible about her being abandoned yet again.

Help!

9 Comments | Decisions, Expectations, Fatigue, Frustration, Isolation, Limitations, Milestones, Rants, Raves, Relationships: Family & Friends & Dating & Sex, Support, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Worrying the good stuff will hurt me

February 29, 2016

I’m going to be sharing some big news soon. But not yet. I’m too overwhelmed right now. And too nervous.

Because the thing is, when something good happens and you have a chronic illness, often you can’t just enjoy the thing.

The thing I’ll be sharing soon is good. Really good. Incredibly good. But along with the good comes some difficult stuff. It comes with expending more energy. It comes with less control of when I rest and how long I rest. It comes with more responsibility. And all of that worries me.

On the downside, all these years I haven’t had a spouse or children or anyone to be there for me every single day. My parents are fantastic, and I talk to my mom every day, sometimes multiple times a day, but that’s not the same.

Then again, I had no responsibility for anyone by myself. I had no kids, no spouse, no partner, no pets. I had no job and no house. My biggest responsibility was my car, and that’s relatively minor (and there’s no emotional attachment there at all.) It was all about me, myself, and I, and that suited me just fine.

And now I’m taking on new responsibility. That’s daunting, to say the least.

At least once an hour I find myself wondering if I’m pushing myself too hard. Was that walk too long? Will I regret it? Am I doing too much? Will I get sick because of it? Am I worrying for nothing?

That last one was answered when my knee started to buckle as I was walking down a flight of stairs, and I pictured myself tumbling down. Ok, maybe I’m not worrying for nothing, but I still might be worrying too much.

Because we all know how hard it is to adjust to a “new normal.” I’ve written about it many times and I’m sure others have too. We get used to doing things and find something that works and then there’s a change. Maybe the change is external: a new home, a new job, a new medication, a new season. Maybe it’s internal: a new diagnoses, a worsening of symptoms, an improving of symptoms. Whatever it is, it means we have to find out what our new normal is. That’s not easy. But that’s where I am right now.

There I was, seeing some improvement, enjoying where I was, just starting to find a groove in my new normal, and then things changed. And even when they change for the better, that can be a problem.

I once tried to explain my adrenal problems to someone by saying that any kind of stress could be bad – the death of a loved one or winning the lottery could each have a terrible effect on me. Of course, the effects would be different, but I do think that winning the lottery could have some bad short term consequences.

So that’s why I’m now worried. Because I’m not sure how much my poor body can handle. Maybe I’m overreacting. Maybe not. Unfortunately, I won’t know one way or the other until it’s too late to change things. There’s a reason one of the biggest categories in the sidebar over there on the right is the one called “Unpredictable.”

I’ll just have to metaphorically cross my fingers and hope it all goes ok.

1 Comment | Expectations, Fatigue, Frustration, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

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