How do you manage work/a career with lower hemoglobin levels?
So far I've managed ok. I don't really have a process about things. I just handle them as they arise. When I was younger I slept alot in class, High school and college but was able to still do ok because I read everything before hand and didn't need to listen to the teacher so much. My first job was in a meat market in a grocery store. That was tough until I got used to standing my whole shift. I would always be sick because of the wet and cold conditions. I did that for 6mths until I got a job at the front desk of a hotel. I did well at that job and was only tired when there was nothing to do. Boredom causes the sleepiness. While working there I did maintenence, housekeeping and wait staff without any Thal related issues getting in the way. Well almost. I passed out twice due to heat, dehydration and fatigue. I would have times where I had terrible stomach pains, but it was always at night when I should have been sleeping. I worked there for 3yrs and became a manager for the next 2yrs until my current job came along. I've been here for 10yrs and the main issue I had is getting really drowsy and drained when I become stationary. I don't even have to be tired half of the time it just hits me out of left field and I'm all of a sudden stuggling to keep my eyes open. Its worse in the summer than winter. I work 8-5pm M-F. It is tough because even at a job where I sit, sometimes it's hard to beat the tired feeling. It doesn't seem to matter how much sleep I get. 3hrs to...well I don't really sleep more than 2-3hrs at a time. Not sure that's Thal related, but I'm a very light/irregular sleeper. It's not unusual for me to wake at 3am and eat two bowls of cereal and watch tv for 30mins before returning to sleep. If it go to bed at 10pm I will awake at least 3 times before 6am. Caffeine really helps early morning combined with lunchtime workouts seem to keep me going most of the day at work. Even after all that I still kinda zone out after 3pm. Sometimes it's after 5pm and I have to stay and rest or be dead tired on the 40min drive home. If I'm not tired them I will definitely crash after my evening meal. Pretty much at some point in the day whether early or late I seem to need a rest for about 15-20mins. After that I seem to be recharged and ready to go. If I do crash later in the day I end up staying up really late because my energy levels are way up. As I write this it's happening now. Energy levels dropping.
Additional related questions:
- What sort of work do you do? Does it require you to be more active or are you allowed to sit at the job?
I am a Software Engineer, which means alot of sitting. Sometimes I start to get really sleepy and drained, but it could also be attributed to boredom. I do sometimes have to move PC's and other items back and forth, but it hasn't presented a problem. Moving around and being busy actually works to my advantage. It's the sitting still that gets me.
- What is your typical hemoglogin level?
8.2 - 9.1
- What type of thal do you have?
Beta Thal Intermedia. When I was younger I was diagnosed as a Major, but since then they've kinda re-classifed things and added the Intermedia category.
- Do you have any advice for managing work?
I don't have anything out of the ordinary or special. I guess I'm fortunate to be in my current position. It's not physically taxing or incredibaly stressful. I wish I had a secret to share that made days easier.
- Have you ever had to approach your manager or HR staff for assistance or advice or to make adjustments or accommodations to your work?
I haven't. Even though I've notified them of my condition I don't think they fully understand. They seem to be more concerned or jealous that I can eat, eat, eat and stay thin or that I should be cold because it's 69 degrees in the office and I have on short sleeves. No matter how much I explain that due to my body's constant fight to make more red blood cells I stay slightly warmer and that I don't gain weight as fast as they do. I've even sent them information about Thal directly from this site and it just doesn't register.