Category Archives: work series

Work Series: A Day In The Life

This blog post is part of World Autoimmune Arthritis Day 2014.
6:00am: Wake up. Feeling awful after tossing and turning all night. It snowed overnight, and my pain levels spiked, which led to insomnia.
6:05am: Snooze alarm goes off. Force myself to wake up, and start doing a few daily stretches in bed so that I’ll be able to stand and walk when I get out of it.
6:15am: Drag myself out of bed and proceed to brush my teeth. Stiff fingers haven’t loosened up enough yet, so this proves difficult because I can’t get a good grip on the brush.
6:30am: Take a hot shower. This helps a little, but I don’t have enough time to really soak most of the stiffness out. Take first part of morning meds.
7:00am: Time to leave for work. Luckily I made my lunch the night before. Mom offers to drive, but I insist because she recently hurt her knee and driving on the icy roads might stress it out. We discuss taking the bus due to the roads, but this is not an option because there isn’t a bus available at the late hour when my night class gets out.
9:00am: Finally reach work, an hour late. Achey and exhausted after getting little sleep and the long drive. Make a cup of tea and plug in my heating pad while my computer starts up. Take remaining morning meds.
9:30am: Heating pad starting to release the tension in my lower back a bit. Have thawed out and getting down to work. Managed to eat my apple (breakfast) and the cup of tea has revived me a bit.
10:00am: Get called to another part of the building. Spend the next 2 hours on my feet running around the building. Feet hurt despite sensible shoes.
12:00pm: Lunch time. Too tired and pain levels too high for hunger, but make myself eat a bit. Manage maybe half of my lunch. With food in my stomach, able to take painkiller.
12:30pm: Nosy co-worker comes in for something work-related, then wants to know why I have a heating pad. Make a joke about keeping warm in this frigid winter, because am not comfortable talking about my illnesses at work, especially with gossipy co-workers who I barely know.
1:30pm: Try to get some work done. For once, grateful that at least some of my job involves just sitting still and working at a computer, because don’t feel up to running around the building some more.
4:30pm: End of the normal workday. Happy hour planned for officemate’s birthday. Feel like I’d rather just have some time to myself to rest before class, but feel that it’s important for my work relationships as a large part of the office is going. Attend but don’t drink because have taken painkillers and have to go to class in a bit. Pretend I’m feeling well, because I don’t feel like answering questions. Don’t want to bring down the group mood, and most of the staff don’t know about my illnesses to begin with.
5:30pm: Leave happy hour and cross campus to classroom building. Pick up a cup of tea from a coffee shop to help me get through class.
5:45pm: Time for class. Snack on some nuts and dried fruit with my tea. Foggy brain makes it hard to focus.
9:05pm: Class finally ends. I’m exhausted.
9:30pm: Finally get out of the parking ramp due to all the students leaving campus at the end of night class. Drive home is painful as knee is stiff from long drive in the morning. Mom took bus home at the end of the workday.
10:00pm: Reach home. Try to eat a bit of dinner so that I can take my nightly meds. Wish for a hot soak in a bath, but fear I’ll fall asleep. Take a hot shower again instead.
11:00pm: Lights out, finally. Fear another night of pain-induced insomnia.

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Work Series: Business Trips

Last week I was sent on a 2 day business trip. Trips can be a difficult proposition for people with lupus and other chronic diseases. Travel is exhausting, and getting somewhere often requires exposure to all kinds of nasty germs. Then there’s the trip itself. When I travel for fun I try to plan enough rest breaks, etc. I don’t have that option on a business trip. The agenda is already set – and you can’t go skipping things because you’re tired. By the end of the trip, here are the top 10 things that I had learned:

  1. Don’t forget a mask for the airport and airplane. People might avoid you because they think you’re sick – but at least then you can’t catch whatever they’re carrying. So avoiding you is actually in your favor. Getting sick is no good – especially when you have meetings all day! (Of course, this applies to all air travel.)
  2. Pack your heating pad. Long hours sitting on an airplane and in meetings plus exhaustion left me really achey and stiff. Having a heating pad to use at the end of the day made me feel a lot better. It made the next day of meetings so much easier!
  3. Don’t forget your daily meds. I like med cases with the days that can be popped out so I can take just the relevant days. Small Tupperware containers or even snack size zip-locks also work in a pinch, but don’t forget to label the day and time of day.
  4. Don’t forget your PRN meds. I forgot my painkillers and anti-nausea meds! This was very, very, very bad.
  5. Streamline your work bag. You’re going to be carrying it around all day at the conference, so make sure it only has the few things you absolutely need. Your shoulder will thank you.
  6. Pack comfortable shoes. I mean the most comfortable but still work appropriate shoes you can find. You will be on your feet, and your poor feet won’t want to be in uncomfortable shoes all day – no matter how comfortable they are.
  7. and #6 also applies to comfortable clothes.
  8. If you wear makeup, concealer and blush are a must. I looked all washed out, and I woke up with dark circles even in a fancy hotel with nice beds. The concealer also helped cover up the lupus rash I get on my face when I’m too tired.
  9. I’m not generally a big fan of hand sanitizers since they can promote bacterial resistance and all, but in this case I wished I had kept a bottle in my bag. At work conferences you end up shaking a lot of hands. This is great for networking. It’s not so great for preventing infections.
  10. Practice your acting skills. I’m all for educating people about my illnesses, but a work conference just isn’t the place for that, in my opinion. This is something that I do every day at work, but at a conference there wasn’t any lag time when I could relax out of that role. This meant I needed to keep a smile on my face all day long and fake good health. As frustrating (and exhausting!) as it is to do this, I want my work relationships to be based on my work not on my illnesses.
  11. EDIT: One more amazing suggestion courtesy of @forgetful_girl: “One thing that I would recommend is packing handwipes/antibacterial wipes. When I go on a plane, I wipe down everything- handrests, remotes, trays. I also do the same when staying at a hotel, making sure to wipe over the remote.”

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A New Job, A Fresh Start

This post was included in the Patients for a Moment: Starting Fresh blog carnival hosted at chronicbabe.com.

A couple of months ago I started a new job. My Twitter friends were probably sick to death of hearing me talk about job applications – it took an entire year and a half to get one. I did find a good job finally and I’m happy about that, but it’s also hard to let go of the career I was SUPPOSED to have. Since high school, I worked towards a medical career. I took the advanced science classes – and  sacrificed sleep to pass them. I put in the hours of lab research and community service. I shadowed doctors at ridiculously early hours of the morning. I even got in to a great medical school program and started attending classes. Then the lupus reared its ugly head and all of a sudden that dream was just gone. There was no way the crazy hours and high stress levels were going to get along with my lupus, so I was forced to leave the medical program. I think I’m still mourning that loss.  I see my new job as a poor substitute for the life I wanted, and that just isn’t a great way to face the world. It certainly doesn’t help that my new job is in clinical research – a field that I was trying to run far away from because I knew it wasn’t where I wanted to be. It’s definitely not something I want to do full time for the rest of my life.

It’s so frustrating when people say things like “Oh well, that’s ok, you can just find another career.” Well, sure, I can find another career, but it won’t be the career I wanted. The one that I dreamed about and spent 10 years working towards. That one was taken away from me by factors beyond my control. I know people mean well, but those comments just aren’t helpful. And then there are comments that I get from other members of the chronic disease community. Things like “Why can’t you just be grateful that you can even manage to work fulltime. I’m never going to be able to do that again. I wish I could work somewhere – anywhere.” I get where they’re coming from. The loss of life goals and feeling like we’re stuck on the fringes of society outside the circles of “respectable” citizens that do their part is a very difficult part of the chronic disease reality. I certainly don’t mean to undermine their feelings when I complain about my job situation, but I also shouldn’t have to hide my feelings from my friends. Everyone’s life is affected differently by these diseases, even if the overarching themes are the same.

It probably isn’t great for my mental health to see my life in this pessimistic light all the time. So I think my new goal is going to be to remember that just because this is where I’m working now doesn’t mean that this is where I need to end up. I’m not stuck here and it’s time to stop being so  bitter about what I’ve lost and start thinking about what I can still achieve DESPITE the lupus. It sounds so simple in theory, but I think it’s going to be even harder than I can possibly imagine. But all I can do is to try to keep steering myself towards the attitude that I want not the one that comes so easily right now. I may have started my job a couple of months ago, but I think the true fresh start is happening now.

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Filed under blog carnivals/grand rounds, coping, insensitivity/ignorance, introspection, rant, work series

Work Series: Job Hunting

For the last year and a half I was part of the masses looking for a job. This is a frustrating, demeaning process at its best. I constantly felt like I was never good for any companies for any positions anywhere. In fact, this whole process had me so depressed that I actually couldn’t bear to write this post until now – 2 weeks into a new job. Of course, this whole process is only complicated by the whole chronic disease thing. I don’t qualify for disability, which makes life harder because I have no legal ground to stand on. I have to work because otherwise I don’t get health insurance, and that just doesn’t work with a chronic illness.

There are a lot of things that have to be considered that you might not consider quite as carefully otherwise:

1. Hours

You have to figure out for yourself whether you want FT/PT. How many hours can you work? Do you do better with standard hours 9-5, etc or do you prefer a more flexible sort of position.

2. Physical Demands

What will your position require for you to do? Can you sit for long hours? Stand? Walk? Can you handle a lot of typing? Lifting? Also pay attention to things like exposure to things like the flu/colds/infections – especially if you’re immunocompromised.

3. Mental Demands

Brain fog, brain fog, brain fog. Did I mention brain fog? How well can you focus for long periods of time? Can you keep track of things that need to get done, or do you easily get confused with complicated tasks?

4. Office Culture

One of the things that’s really hard for me, in general, is the concept of sharing my health conditions with other people. While I’m fully in favor of educating people, I’m also a private person by nature and don’t always want everyone I know to have the details of my health. This goes one step further in the workplace where it feels like it really shouldn’t be part of the work-life culture. I don’t want my illness to be part of my relationship with my boss and co-workers – or at least as little as possible. This can be difficult – or even impossible depending on the work environment. It is definitely something that you want to think about as you look for jobs.

5. Flexibility

In addition to #1 and #2 above, you want to think about flexibility in terms of things like working from home. Can you work from home if you’re not feeling up to going into work? Can you work late one day to make up for leaving early another day?

6. Benefits

For me, benefits were one of the key reasons I needed a job. If you can get benefits from a family member/spouse/etc then this may not be quite as pressing for you. Pay attention to how many hours you need to work to qualify for benefits – and also look at vacation and sick days. (Be sure to check whether you can use your vacation days as sick days if you run out of sick days.)

I’m sure that this list of workplace challenges will probably grow as I spend more time in the workplace, but these are the things that I was thinking about when I was applying for jobs… The job hunting process itself isn’t all sunshine and rainbows either. Even setting aside the constant rejections, it’s a lot of time spent staring at a computer or typing. I really had to set a certain number of applications I wanted to get done each day/week/month otherwise it was easy to just not do them. It’s an exhausting process, and it took me a year and half. I’m grateful to have found a job, I know how hard it is out there and if you are looking I wish you all the best!

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Filed under advice/suggestions, work series