I have been asked over and over again what I do with my days since I don’t “work.” I understand where they’re coming from. I guess I used to wonder the same kinds of things. Now I realize how absurd that is.
First of all, I do work. I have a job: my health. I don’t get paid for it, but it’s my job. And it’s harder than any paid work I’ve ever done.
Several years ago I quit a job where I was unhappy. Suddenly I had so much free time! I learned new skills, improved my diet, got into a good exercise routine, went out many nights with friends, spent more time with family, traveled… it was a great time and I hated to go back to work. The thing is, I felt good then.
It’s not like that now. Now, I can’t do half of what I did then in a day. Now, I have to rest a whole lot more. I spend more time in bed. I read more. I want to go out but can’t. I spend huge amounts of time planning out my meals, pills, and other health-related stuff. And that’s before we talk about the paperwork.
Right now I’m hiding from the work. I’m writing here because the rest is too overwhelming. I should really be doing one of these (though some can only be done on weekdays):
- Reading one of the five library books I have out on hypothyroidism.
- Filling out one of the two forms that the long term disability insurance company sent me.
- Contacting my lawyer about the next steps in the long term disability insurance application.
- Trying again to fix a dental insurance status issue.
- Figuring out if a medical appointment I had last month will be covered by my current or my old health insurance.
- Filling a prescription.
- Making an appointment with a new primary care physician (pcp).
- Changing my health insurance over to a new pcp.
- Making an appointment with a resident in the new pcp’s office so that I can get referrals for specialists with whom I already have appointments, since I’ll need the referrals before I’m able to see the pcp.
- Entering recent lab results into my tracking spreadsheet.
- Creating a new tracking spreadsheet for daily symptoms.
Of course, in addition to paperwork, I also spend a lot of time and energy around food. I have to figure out what to eat that fits in my diet, what I’m able to prepare given the weather (I can’t use the oven all summer and I can’t use the stove on the really hot days,) and how to time my meals. Today I’m supposed to have lunch with my parents, but they want to eat around 1:30. That would mean I wouldn’t take my lunch pills until 2, and then I’d need to wait an hour before I could take my 2pm pills, so they’d have to wait until 3pm. That’s no good. So I have to eat earlier on my own. And of course, that doesn’t even include the time spent taking pills. Then there’s the 20-30 minutes I spend each week preparing my pills by filling my weekly pill boxes. Buying the pills also takes time, but that feels like a whole different level.
There’s always more reading and research to be done. I follow patient groups online, a few useful blogs, twitter, and I also read books from the library.
Up to now I’ve been talking about the health-related work. There’s still the everyday work. Cooking, dishes, and laundry exist in my world just like they exist in a “healthy” person’s world, but they take a lot more energy for me. Doing laundry and going grocery shopping in the same day means I can’t do anything else that takes much energy, and some days I can’t even do that much. Going out with friends means I have to rest the next day. For me, “rest” usually means not leaving my apartment. I stay home and read a lot. I watch some tv. I check Facebook. But I don’t go out or do anything strenuous at home.
And by the way, don’t forget that I spend 10-11 hours in bed each night. I figure this isn’t too bad, since I know people with similar conditions often spend many more hours in bed. Still, when you compare this to others my age who only spend 7-8 hours in bed each night, you can see that I lose 2-4 hours of “productive” time each day. I also need to rest after each meal. I’ve learned that if I eat and then immediately try to do something heroic, like put the dishes in the sink, I feel really horrible. Instead, I sit for at least half an hour after each meal. I use that time to watch tv and knit. It’s not exciting, but it works.
Then there are the medical appointments. Some weeks I don’t have any, others I have more than one. They are exhausting. They are physically tiring and emotionally wearing and I have no choice but to go to them. I also leave the house for errands, because even ill people need to buy groceries and toilet paper. On a really good day, I take a 10-20 minute walk. I wish I could do that every day.
Like others, I have hobbies. I would like to spend more time on them. But they require energy, even just small amounts. Most days I have to choose between my hobbies and doing my physical therapy exercises. Given that choice, I have to do the physical therapy. There’s a project I haven’t been able to work on in several months because I just don’t have the time and energy to do it.
Finally, I do want to have a social life. I can’t do it often, but I socialize when I can. I spend time with my friends. I spend time with my family. I occasionally go to events. When there’s the chance, I date. But I can only do one big thing per weekend (I may not be working, but they are, so these things are always on weekends.) That means my calendar is already booked into October. If I go to a wedding on a Sunday, I know I can’t do anything the day before. If I go on a picnic on a Saturday, I know I’ll be resting on Sunday. This is incredibly limiting, but I have no choice. I’m just thankful if I can go to those events; very often I can’t.
No wonder I haven’t had the time to buy new glasses. I’m too busy not “working” at a “job.”
If you can relate to this, please pass it around to your friends and on social media. I’d love to help more people understand that not having a paying “job” doesn’t mean we’re not working.
I completely understand when your on disability people question what your doing with your time, really???? Its called disability for a reason…I am on my third time bring on disability in three years. I used to feel guilty for sleeping so much or my house not being spotless. But like you I realized my job right now is to get well! I just had my bilateral mastectomy 5 weeks ago and have now been held back by a UTI and all I’ve been doing is sleeping. I don’t care what others think…walk a day in our shoes and see how you would deal with a illness.
Good luck Chemobrainandmore!
All that maintenance is a full time job by itself. And when energy is just not there that’s it. You can only do so much just to stay level. I hope you start to turn for the better
Thanks Anet. Same to you!
I have been trying to get myself new glasses for months now, too.
Here’s hoping we both get new glasses soon!
I love how you call having chronic pain a job, I often think the same, in fact I get much more tired & drained now than when I worked 70-80 hour weeks… Thanks for the reminder of that…x
I think it’s like when stay at home parents get treated as if they don’t work, when in reality I think their “jobs” seem really hard. And it’s the same for us. We work really hard and we need to make that known!
Yes, having chronic pain is a job and you explain that very well. It’s the worst kind of job: a 24/7/365 shift, unappreciated, unrecognized, demanding, exhausting, lonely, and with failure guaranteed (pain never goes away completely). It’s endless work without a chance of success.
I think we should be darn proud of ourselves for managing so well so much of the time!
You’re right, we should all be very proud of ourselves! So often we think about the little failures, even when there are so many big accomplishments. Thanks for the reminder, Zyp!
I normally don’t comment on other people’s posts, unless they’re by someone I know, but yours spoke to me. I have a close, young relative going through a similar situation right now and fighting for disability benefits. I’m forwarding your post on to that relative.
Take care of yourself, and don’t worry about what anyone else has to say about it.
Thanks for your support, Cordeliasmom. Please remind your relative that there are many people who understand what they’re going through and who are here to lend support. It’s tough, but they don’t have to be alone. Good luck to them and to you!