Working hours with autoinmunity

@lorena1egas Hi, Lorena and welcome back. Do you currently have a job or are you looking for one? Are you concerned whether you have the stamina to work? I do know that for me fatigue always gets in the way of finishing projects or even starting them! And I’m retired. Let’s let the members chime in to help you.

@lorena1egas
I think it varies per person and based on their list of symptoms and diagnoses. What I do and suggest you do is keep track with a journal to note energy levels and schedule/time. You want to know when you have the most energy and prioritize those times to get things done or work. Note when you do too much and what symptoms are triggered. What triggers them, when, etc. so you can adjust what you do, how long, times of day, etc. You need to make sure to get enough sleep, exercise and eat well to support overall health, take medications and supplements that support your health, get mental health support, ask for help/support from others, etc. I now know my limitations, prioritize the most important things to accomplish with my daily energy level which varies daily, etc. I have adjusted my expectations down to deal with my health reality. I used to work 50-60+ hours per week plus home/son as a single parent. I am now lucky to do much daily/weekly due to low energy levels and chronic pain/weakness. I can’t really work now due to the variability of my energy/strength but forgive myself when I can’t do more than an hour of tasks per day. Be kind to yourself.

with me every day is different. Sometimes i have extraordinary energy/stamina. Sometimes i can barely keep my eyes open at 10 am and feel like going back to bed. For me, maximum flexibility is key.

@lorena1egas Lorena, I think this is something that can vary with each person, and each person's level of disease. There are so many autoimmune conditions. We can deal with one or several, with different degrees of involvement.

As @elisabeth007 has said, each day can be different. As @dlydailyhope mentioned, creating a journal with timelines for energy peaks can really be helpful.

Until the end of 2015 I was working a very demanding job. I asked my hours to be cut back, but my organization refused. I was left with no choice but to leave a job/career I loved. Mornings are usually my best time of day. What are your plans, may I ask?
Ginger

I searched this topic and found this post/thread, so I thought I would add to this one since it already has some great suggestions. If it’s preferred or best I start a new post, just let me know.

I started on this autoimmune disease journey in October and went on short-term disability at work (not full pay and need to pay for work benefits separately right now). My original post about it is at this link https://connect.mayoclinic.org/discussion/new-to-autoimmune-diseases-concerned-blurry-vision/ . At the time, I thought once they figure out what’s wrong with me and I get treated, I’ll be back to work. Ha!

I never thought that in December we would still be figuring out what’s wrong with me, still have a lot of symptoms (including blurry vision, headaches, fatigue, etc.), and still figuring out prednisone levels. I’ve since learned this isn’t a black and white journey.

Back to work topic. I’m stressed about when, and in what capacity, I can return to work. My employer wants to know and discuss. I don’t know how flexible they can or want be and I don’t want to over-commit to anything, which I tend to do. My job is stressful and I have many big events that are exhausting.

Short-term disability is maximum of 23 weeks. I looked into FMLA, so I can take off when needed, but once you use all your PTO (vacation, sick, personal days) for time you need off, you don’t get paid when you take off, but you protect your job. I don’t know anything about Social Security Disability (SSD) benefits except that it exists so I guess I should learn more about it. I need to know more about all my options and I’d like to know about other people’s experiences here regarding work.

Does anyone have experience with how this all works and/or can recommend options and/or resources for information? I want to protect myself, my health, my sanity, and my job (and have an income).

Thank you.