How to cope with working full time

I feel you Dave. I am extremely lucky in that I'm research faculty at a university, so I have a lot of flexibility and can make my own hours and work from home often. If I couldn't do that, I'm not sure I'd be able to keep working. Even still, I've had to cancel/move *a lot* of meetings this past year and while it may not be too problematic, it's really frustrating for me.

I've started being more upfront and honest with coworkers/collaborators about my health. Even then, like you said, they know KNOW what's going on. I do try to put on a happy face as much as possible because I don't want to be defined by my health.

To deal with it, I try to minimize stress (I'm not really succeeding at this), get as much sleep as possible (not succeeding at this either), taking supplements, daily epsom salt foot baths, and nightly mantras (where I repeat positive messages in my head over and over before I go to sleep--I'm not the kind of person who usually buys into that kind of thing, but I think it's helped me mentally deal with being sick). Perhaps most importantly, I'm trying to be realistic with myself--I work in a "publish or perish" world where I need to be highly productive to get tenure so it's easy to freak out from my reduced productivity. I don't beat myself up too much when I can't do as much as I want to. But I try to take as much advantage of the times I'm feeling okay to get stuff done, knowing that I may be feeling poorly in a few hours or days. This is especially hard for me because I am a procrastinator by nature. So I focus on the most important tasks first (e.g., prepping a course) and recognize some things are going to be delayed.

I think it's really important to make sure you have a support network in place where you can vent or allow your emotions to flow. This is one place, but having someone (preferably more than one) who can sit and talk with you is one of the most important things chronically ill people need.

Is there anyway to reduce your workload and/or stress? To work from home on occasion?

I work full time. I've been sick for ten years though, so I'm pretty used to having to work through the day when I don't feel well. Of course, there are days when I can't function in which case I stay home. But I have a desk job so for the most part it's not impossible.

They are flexible if I have doctor's appts and have to leave early.

"How do I do it? Great question...one I don't have an answer for, but I feel like I have to do it. I truck on and try to cope with how broken I am."

Hear hear.

I gotta hand it to you folks that are able to still work - I couldn't work any longer after the age of 28 - more than a few years ago. I would work for 3 months, then be bed bound for 2 months, so I didn't like the trade off - and neither did my employers.

It's tough enough to get through treatments when I'm able to stay at home - I'm very fortunate to have a hubby that made a good living and we now have a decent retirement to live from now.

I would say, take 20 minute rest periods any time you can squeeze them in - even if you can't sleep, being in a quiet space that's darkened and just sitting or laying down for 20 minutes can really be helpful.

Be sure to stay not only hydrated, but eat regularly, with healthy snacks during the day to help maintain your energy.

Keep your weekends as clear as possible so you can recuperate.

I haven't worked in over a year and a half.

Before I was diagnosed....after being off work for about 5 months, I went back to work. I didn't have the plethora of symptoms I had now. Within 4 weeks...couldn't take it anymore...I was a mess.

Hubby is talking to me occasionally about maybe going back part time. I would have to retrain first - which would mean 10 days (5 per week) of full time...then I'd could take the odd shift here and there. I don't think I am able to do the 10 days. If I attempt and fail again...that will not be good for my employer...when I go back, I need to be ready...not waste their time. I don't want to have a second failed attempt. I need to be ready when I go back.

I guess I'm not complaining enough to hubby about my 'issues'. I try not to bring him down because it upsets him, but then he gets this idea that I'm good to go.

darned if you do and darned if you don't.

Work has been a struggle for me for over a year. I have a very understanding director but I am middle mgmt so it is hard to miss as much as I have in the last 6 months. I have to work so that causes a lot of stress on me as well. I take a few days almost every month and fiNd that does help. I am glad that I can work but often wonder how I do it, it's very very hard most days

You are not alone, hugs

I've had this since 89-90. Besides working part time during school, I've worked full time with this for about 20 years. Only two years were desk jobs, which were to worst from carpel tunnel, the others were a combination of desk/light physical work. During my whole adult life I've had to choose jobs that fit my limitations - that has cost me about 100-150K in lost possible wages during a 20 year span. So I've been forced to "under employ" myself so to speak. Some days I can do almost anything, some years were good, some terrible, everyday is a crap shoot. Stress I cant do anymore, so that means less responsibilities=less pay.

I've sought jobs with somewhat flex time so I can be late somewhat and I can take a long lunch (nap in car) if I have to. After a nap,I have all kinds of energy, it just doesn't last. I've always hid my illness from my employees, and I've even been "let go" for obvious nodding off / lethargic spells at meetings. I used to consume a Red Bull every day at one point before ABX. People close to me (from an athletic point) always thought my energy levels were quite bazaar. I could nap, put on my "A" game like no one else, then nap again when finished. I had the desire to win in between immense exhaustion. And being a stubborn athlete in the past has tought me how to push through the pain that others might not be able to. If I stopped moving, i could tell that was the beginning of the end, so I kept moving. I could never lay in bed long, it hurt laying there after 6-7 hours. I actually only got average sleep of about 3 hours a night for 25 years. Insomnia really sucks. Now 5 hours is awesome.

How do I cope with work? Somedays I barely do. No choice, I have to. Its hard to find livable paying jobs that fit my requirements. And now its getting harder on my body (50) as the years add up and take there tole.

I realize at this point if I dont get better, my retirements years might be spent in poverty from early retirement. But , as a do your self-er, I can save money on home and auto repairs when my body allows (depending what hurts)..

My advice to you while your ill, is dont be making huge purchases right now. Live within (or lower) what your income allows - the opposite of the average American. People with the best of everything dont look so cool if they lose it all.

Hey all,

We sure are a strong bunch. It takes a lot of fear or terror of not being able to make a living, lose everything, becoming homeless that drives me to stay in an intense, demanding retail job at an upscale department store in the Home section. Due to energy levels, brain fog, and other issues I cannot teach anymore, and have had to use all my retirement.
At 56, being on my feet all day long, being cheerful to customers and colleagues, making the sales numbers to keep my job, putting out stock (small appliances, dishes, glass, big comforters, decorative items, moving cabinets, etageres, tables, setting up merchandising)--it is a living hell, like it is for so many others.

On top of it, I fractured my wrist and ruptured a tendon coming off a ladder at work last January, and it hasn't healed properly and that gives me chronic pain, the store is looking for any reason to get rid of me and get out of the workers' comp. It's turned into carpal tunnel and so I need another surgery, and need to keep the job so I still get workers' comp while I heal.

Through the exhaustion, rounds of not being able to keep anything down (good thing I'm so near the restrooms), rapidly increasing neurological problems, now I fear I will lose my job as I've been out three days this week very sick with digestive system.

Living with the stress of having to keep ourselves going on a shoestring both $ and health issues-wise -- we are all such strong warriors, just FIDO, as the Rangers say!

It is really hard to work full time. I do it and am so looking forward to retirement, but I still have some years to go. Night shift, 12+ hours, 3 days a week. Some years I was doing well and worked an extra shift every week. I had no choice, my husband fell off a ladder in '99 and broke his back, crushed feet. So I support my family. When not working I am resting and healing so I can do it again. If I sit too long everything just locks up and it takes me a bit to move. I am good at my job and call out less than the younger healthy nurses, of course I do not attempt to do much when I have off days. Eating well, taking supplements, prayer and faith have kept me going for many years with Lyme. Along with Doxycycline every few months. The past 1 1/2 years have been really hard, wish I had been on stronger treatment years ago and I might be feeling better today. I can barely walk when I get up, just take Ibuprophen, have a cup of coffee, drive to work and am able to kick it in ok for my shift. The walk to my car in the morning is a real challenge.I think I must have adapted to survival mode, not good for my health but I just put one foot in front of the other and keep going. I am a nurse and I feel that my health challenge has given me empathy and understanding for the patients I care for. One advantage to my profession, I believe the giving has given back to me and the ability to keep going.

I am new to the forum and have just been reading through all the threads. I realized, while doing research, after I was diagnosed with Lyme, that as miserable as I was, there were others that felt way worse than I did and continued to do my own research on ways to cope. I think the most horrible feeling was after I finally figured out what was wrong with me, I started on the first antibiotic regimen and told my boss, who I thought was a very good friend, that I was feeling so horrible, even worse than I could have ever imagined. This person knew me and had worked with me for years before I ever got sick, I had also told this person everything, every step of the way when I first started getting sick, trying to find a doctor who could help me. I started having a seriously hard time sleeping, even worse was trying to get up in the mornings and function. I started getting to where I was 15 minutes late and then 30 minutes late, some days. This went on for about 2 or 3 weeks, then one morning, I got to work only to find a note on my desk from my boss: "please start being on time for work everyday". I was already defeated by a disease that I couldn't overcome now, a person I thought was a friend couldn't give me an extra 15 or 30 minutes to figure out how I could pull myself out of bed to get to work or tell me to my face, they had a problem with me, any of the days I visited with them and their family after work. It took me a 1.5 years, doing research on my own to find a Dr who specialized in helping people hard to diagnose, which I did, now almost a year later, I'm still fighting this disease. I realize that I am truly one of the lucky ones because I have read and read and read stories worse than mine but along the way I have figured out that, NO ONE knows how I feel, unless they have been through an illness like this and most really don't care either. I have never missed a day of work due to this disease except days I have to make the 4.5hr drive for Dr. visits but most days in this, almost 2.5years of misery, I have wanted to cease to exist. I wanted to sleep at work during lunch but wasn't aloud, I wanted to sleep just one full night so I wouldn't be miserable the next day at work but unfortunately, not many of those nights/days have existed. I will say that I have felt better off and on during the last 10 months though some days, because of detox, I have just wanted to give up. I go on because I have 3 kids and want to provide for them which I cannot do without a regular paycheck. If it wasn't for them, I KNOW I WOULD have let this disease get the best of me. This is how I've managed. Doing much reading and research I have found that, people find their strengths in different things and others have been so sick, they haven't had the luxury of choosing to fight through it. I hate that there is any person on this planet who has to feel like so many of us do but I'm also glad to know that there are actually some who understand what it's like because even a "friend" doesn't really care...sometimes realizing that, is a blow that completely takes your breathe away!

ziege said...
Hi Dave, I lived in Manhattan 20+ years working in commercial lending and ratings agencies. Now in Pittsburgh but still in banking. When I started ABX treatment, I rapidly developed severe neuro-cognitive issues. Given the analytical nature of my job, I was completely screwed and had to stop working. Following 15 months of ABX, anti virals, physical therapy, etc., I was able to return part-time, gradually increasing hours to current 4 days per week, half in office, half from home. Stalled at this point, but that's another story.

The biggest challenge was the expectation that it would be a smooth, steady and predictable recovery, like strep throat or knee surgery. Very few people have the tiniest clue about chronic illness. Our bank requires we take diversity training, including a course on disability, which does not even mention chronic illness!

I have a good relationship with my immediate manager, but his boss was a completely different story. Ultimately, HR and the Americans with disabilities act came the rescue ("reasonable accommodations"). What proved to be the turning point was me educating HR about Lyme in part using articles from the Treat Lyme book/website about treatment, herxing and relapse. The key concept was push me to do too much, I'll get much worse and won't be able to work at all. Is that what you really want?

I think communication and education are really important. I too put on the happy face during work hours, but I'm honest when asked how I'm doing--my colleagues know what a herx is. I put a positive spin on it e.g. yeah, feel like crap today so something's getting killed off! If someone tells me I look good, I respond, yeah, the infrared sauna has been great, doesn't just help me detox, but improves my circulation and skin tone.

Seriously, you are sick. Don't pretend otherwise. Don't let other people pretend otherwise. If you are anything like me, you are throwing pretty much all your available energy at doing your work well which means you are putting in a lot more effort than your colleagues.

I realize this is an old-ish post, but this is pretty much my situation, and your comments are very helpful. I haven't gotten to the point of talking to HR yet, but have been dealing well with my direct manager, taking days as needed and/or working from home, which really helps as I have a 1 - 1.5 hour commute each way. I struggle with asking to work from home though because even though it's an option in my company, it's not necessarily encouraged in our group due to middle mgmt. So even though my manager knows exactly what I'm dealing with, I don't want to take advantage and do what I can to get into the office. If I feel a headache or something else coming on, I am able to leave and WFH the rest of the day. Nevertheless, I try to perform well, but struggle most days as the nature of my job (Corp Lending) is also very analytical and it's hard to read a 20+ page analysis memo when your vision is jumping and you cant even process the info.

One of the more concerning problems I've had lately is the overall feeling of being left behind, as in I just can't keep up with new policies, new regulations, and having multiple things come at me at once. I know it's going to become an issue, I feel it in my gut, but I try to just take it day by day and fake it if I have to.

I also feel you on the relationship front. I have no energy to do anything, let alone put forth the effort to get to know someone, or even meet someone! I have just decided that focusing on my healing will get me back to the point I was and let the rest fall into place as it will.

Hopefully your situation has improved Dave.

I'm sure you will VCLady! But I wouldn't try to get back fully until you've been symptom free for a couple of months. Jumping back in with both feet can very likely cause a relapse and you'd be back where you started.

Remember, our first line of offence and defense is our immune system function. You will want to take the utmost care of it, and respect it's fallibility from here on out.