Balancing RA and work

Trying To Balance Work And Life With RA Is Exhausting

I recently accepted a part-time position as a patient advocate at the Hospital for Special Surgery. And by part-time, I mean 9 a.m. to 5 p.m. four days a week. The day I don’t work, I have school.

This means that I am commuting via public transportation every day, which is exhausting in and of itself.

Don’t get me wrong, I am so grateful for this job opportunity. I work with amazing people and am doing what I love. But I’ve learned first-hand that it is really hard to manage work and life and RA.

Like really hard. I’m lucky if I get home, eat dinner, and then fall asleep on the couch. Some nights, I want to go to bed right when I get home.

And because of other commitments, three days a week, I get home around 6 p.m., and the other two nights at or later than 8 p.m.

I really don’t know how people do it. And because I have been a student for so long, I have been lucky that until I moved from Michigan to New York in August 2013, I have had a pretty flexible schedule, where the majority of my time hasn’t explicitly been spoken for.

Until now.


And now all I have are the weekends, which means cramming in school work and trying to relax a little before it is back to reality on Monday.

So needless to say, if fatigue from RA wasn’t enough, I am now completely wiped out all the time.

I’m sort of ashamed to say that last week I fell asleep at my desk at work.

Mondays and Fridays seem to be the hardest.

I have sort of always wondered since I got sick what life would look like for me in terms of working. I made the decision to forgo a career in academia for a lot of reasons, but the main ones were that I didn’t want to spend my limited time and energy doing something that I wasn’t fully committed to, and I found it difficult to imagine what having to go through tenure review would be like, given my illnesses.

I always knew that this would be a difficult and challenging aspect of being chronically ill, of really wanting to be the best I can be at something, while still admitting the limitations that I have to work through.

I’m trying to give myself time to acclimate to this new schedule and lifestyle. However, it is really putting a damper on things. I don’t really have the time or energy to exercise, go grocery shopping, or really anything else.

I would love tips from anyone who has found a way to successfully balance work, life, and RA.

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Comments

View Comments (19)
  • Wendy
    3 years ago

    i say no more. i keep guilt in check for it too.

  • Kathy P.
    4 years ago

    I’m sorry you’re having such a difficult time, Leslie. I think it might be especially trying for you because you have both lupus and RA. It’s difficult enough dealing with one chronic disease, let alone two.

    If you think you might be able to create a part-time stay-at-home job for yourself, and maybe step down to more part-time in your present job, it might give you a little less stress. At least you wouldn’t have to be doing the commute as often, giving you more time to recuperate.

    Others have offered some good advice about how to manage at home. Maybe you can’t afford to do everything, but maybe you can afford the one thing that seems to take the most out of you when it comes to cooking or household chores. If vacuuming really wears you out, hire a teenager to come in once a week–something even a teenager can handle :). If it’s cooking, arrange for delivery 1-2 times a week, or pay a neighbor to cook a meal or two for you.

    I really hope you’re able to get your feet under you and find a balance that works for you. Good luck!

  • Leslie Rott moderator author
    4 years ago

    Thanks, Kathy!

  • Kat
    4 years ago

    Leslie, your post sounds just like me, another New Yorker 🙂 It’s not easy, and the subway is not very RA-friendly, is it. When I’m flaring badly I struggle with the stairs, and having to stand in the moving car. I have to agree with others and say you have to accept that you can’t do everything yourself and start to rely on others – paid or not. I have a cleaning person who comes twice a month and is a godsend. I am going to start the grocery delivery too. If I’m flaring badly I pick up prepared meals or make something simple like soup for dinner. I drop my laundry off to get done while I’m at work (some places in NYC will even pick up and deliver). It’s not being lazy – it’s conserving energy (spoons!) for things you have to do, like work and family commitments. I still need to get better at exercise and cooking but hopefully that will come when we find meds that finally work for me. Whoever is calling you lazy is being really unfair and unkind. You’re working and going to school and writing and doing a lot. Be kind to yourself 🙂

  • Leslie Rott moderator author
    4 years ago

    Kat, thanks for your comment. It resonates with me.

  • Bill Meyer
    4 years ago

    I have RA and my rheumatologist is at Hospital for Special Surgery.I have recently started attending an RA support group that meets once a month there that has been helpful. I can provide more info on this if you would like. Bill Meyer

  • Leslie Rott moderator author
    4 years ago

    Bill, thanks for the offer. At this time, I am trying to keep my work life and my patient life separate, so I am avoiding HSS for my care. If that changes, I will let you know.

  • Amy
    4 years ago

    Hi Leslie;
    I work full time and am currently in an online program for my masters degree. Like you, I am chronically wiped out. I, too, have fallen asleep at my desk. Sometimes, I just sleep through my hour lunch break – it’s problematic, though, because only getting about 40 minutes just makes me feel more tired. I think I consume way too much coffee and sugar, trying to stay level.

    I don’t have the energy to exercise – but I have been trying lately. For the past three nights, I’ve gotten in at least fifteen minutes on my bike. Sometimes more. Since starting MTX, I’ve gained 10 pounds. Which makes me more tired. Ugh.

    So, enough whining. I cope by coping, which doesn’t make much sense. I’ve learned how to let some things go. I don’t beat myself up if the laundry isn’t done, or the sink has dirty dishes. I am the single parent of two teenaged daughters and they help some – especially my oldest, who runs errands and occasionally does the grocery shopping.

    Outside of that, I don’t have any great ideas. I wish I did! I hope things get better for you.

  • Leslie Rott moderator author
    4 years ago

    Amy, thank you for sharing your experience. I am glad to hear that I am not alone in this. I am learning that there are some responsibilities I should probably relinquish, but it’s a hard thing to admit.

  • Jane Burbach
    4 years ago

    Hi Leslie,

    I work too. Basically full time, but self employed so there is a level of flexibility. But I am generally exhausted to the point of not being able to do much in the evenings. So I try to plan simple meals and do some level of cooking ahead of time.

    I found a grocery delivery service which makes things much easier considering a shopping trip on the weekend will wipe me out for a day. I swear by it.

    I have a great guy to help with yard work and a great lady who helps me with housework a couple of times a month.

    These things give me more time for laundry, resting, and the work for my job that I do at home.

    I still dont have much energy for socializing, going out, etc. So I am thankful for Facebook and my phone to keep in touch.
    And I do things occasionally but nothing like before.

    Seems it takes some trial and error. Hope you find the right balance for you.

    Jane

  • Leslie Rott moderator author
    4 years ago

    Thanks Jane, for your comments. You have some give tips and reminded me that there are many tasks I can pass on to other people if I have to. It’s a good reminder not to try to do it all.

  • Heather Wysong
    4 years ago

    Hello, I have been diagnosed with RA for two years and it’s been a crazy ride! I work full time at an elementary school as a kindergarten classroom assistant! I too come home feeling fatigued and worn out! My husband has no clue as to why but it’s the RA! I’ve been on methotrexate, enbrel, and now xeljans! I just hope the xeljans starts working soon! I have lower joint pain and hand pain the doctor just told me to not sit in the little chairs! I try to walk laps in a pool or do water classes to help with exercise but I get stiff more easily as the day progresses! I went back to school to become a massage therapist so I won’t have to work so many hours a day! Now to just pass my state boards!

  • Leslie Rott moderator author
    4 years ago

    Heather, good luck with your boards and xeljanz!

  • Kelly Mack moderator
    4 years ago

    Hi Leslie, I can totally relate. I love my job and what I do, but keeping up my energy and managing my illness is really tough. At home I try to make things as easy as possible–used to have someone help clean and cook pretty simple meals (that provided leftovers for easy reheating). The trick for me is to try to maximize rest and down time. It can take time to get used to the schedule and for your body to adjust. My advice is to try to figure out ways to make things easier on you. Every little bit adds up. Happy to discuss more!

  • Leslie Rott moderator author
    4 years ago

    Kelly, you’re right. It’s a good reminder that I don’t need to do everything and can get other people to do things I don’t have to. I, however, am also getting push backed and labeled as lazy for trying to farm out household chores. So I am struggling not only with my own perceptions, but that of others, as well.

  • Rheannon Hart
    4 years ago

    I have found that the hardest part of dealing with this disease IS working, especially considering I have a fairly demanding job, not physically, but mentally. I have to have mental acumen about me on any given day and sometimes, frankly, it’s just not there. The days I’m in a lot of pain or the days I’m extremely fatigued are, by far, the toughest. I just tell people, when I’m trying explain something and it’s not coming out right, “I’m sorry, my brain just isn’t working today.” For those that know about my condition, they seem to excuse me, those that don’t, probably think I’m just losing it. However, I am lucky in the fact that, if needed, I can work from home, which does help, as I can rest as needed. So, those are the only tips I have for working with RA, and would also love to hear any tips from others!

  • Susan
    4 years ago

    Leslie,

    I know all too well what you are going through. I too work “part time”, Monday-Thursday 8-5. And that’s not including a 2 hour round trip. You’re lucky that you at least have some time to relax on the weekends, milk it for all it’s worth. I have a 10 year old and an 8 month old and I rarely have time to take a shower most days. My days (and nights) are interrupted with: “Mooooooommmmm”. It makes sleep basically non-existent, let alone the constant feeling that the flu is right around the corner.

    A few things that helped me is talking. Yes, talking. Make sure that you are on the same page with your employer. Although space heaters and a no-no in my office, I get special privileges. My office is kept at 30 degrees (not really, but that’s what it feels like). And after 8 hours of sitting in a freezing office, I literally cannot move. So I have my space heater. My boss also understands if I have to take an hour to take a quick cat nap. It’s not an everyday thing, but on those really rough days, an hour nap can be a miracle worker.

    My doctor also gave me a prescription for B12 injections. I can tell a difference with those as well. She also gave me a prescription to take a 1 hour hot bath once a week. With the help of my husband, these are the most wonderful thing that I can do! In the life of a busy mom, my doctor says that the most important thing is to keep the stress levels down. Stress and induce a flare up. So find what keeps you stress free and just commit to doing it. No matter what. Every Friday night, before laundry, before dishes, before anything…that bath is what I look forward to. On the good days, push yourself into exercising and going out with friends. On the bad days, don’t feel bad if you miss your walk, or miss going to dinner with your friends. If they are your friends, they will understand.

    Good luck!

    Susan

  • Leslie Rott moderator author
    4 years ago

    Thanks, Susan. You sound even busier than me. I can’t even imagine.

  • Leslie Rott moderator author
    4 years ago

    Thanks for the tips, Rheannon!

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