Having Lupus and Working
I am 26 years old and was diagnosed with lupus in 2009. It has been a tough few year. I have many questions and hope I will be able to get some advise. I work full time and I have been at the same job since before I was diagnosed. I have always been up front with my boss and company. I go in waves with being sick sometime I will go 3 to 4 months and be fine maybe just tired but I am able to work though it. Then I will go 3 or 4 months and it seems like I call off at least once a week. And I feel guilty. Does anyone feel that way and how do I get over it. I know I shouldn't feel guilty because I can't control this. But sometimes the pain and the fatigue win out. It also doesn't help that my boss is not a nice person. I know I have rights but it is confusing sometime. So in short how do you guys deal with working and being sick.
Thanks, any advise would be great.
I couldn't keep up, I had to cut way back. I don't have an answer for you but I wanted to encourage you and let you know that I understand how hard it gets and that I think you must be a very strong person. Hang in there, I hope your boss will see the dedication.
Although i can't work now there are some things that may help.
1. If you work under fluorescent lights always wear sunscreen (and reapply often). I found a matching hat to be helpful as well.
2. Some computer screens emit UV rays as well. Getting a UV protective monitor cover. The law requires that companies provide them with a doctors note.
3. For those of us that are affected by UV rays (doesn't always mean rashes or burns. For some of us they can just send us into a flare) wearing sunscreen and or scum screen protective clothing in the car and even when shopping. It can be helpful to pay attention to where you sit in your house as well. If your favorite chair is next to a window you may want to get one of those paper window covers and remove the light.
These are just a few things that MAY help keep you from flaring as often
i know how you feel, i am 29 and feel like i'm always turning up late to work and sometimes i just dont have the energy to go in. I am lucky that one of my boss's has similar issues (not so lucky for him) but it sure helps that he understands what im feeling and does not get upset if i dont go in.
As much as you dont like your boss, perhaps just make sure you keep them in the loop and perhaps ask if there are things that you might be able to do from home. My company have given me remote access to our server so if i dont feel up to going in but still feel up to doing a bit of data entry or report writing etc i can do it at my own pace in the comfort of my bed. I find the hardest part is the constant playing catch up which doesnt help the stress or the feeling of being exhausted when the pile of stuff to do keeps getting bigger and bigger. If you feel like this too the best thing you can do is to ask for help, your boss will appreciate your honesty and you won't feel as stressed when you have that time off to rest.
Thanks Tgal for mentioning the fluorescent lights. May I add that there are uv filters that will fit over lights. They help immensely. I, too have had issues with my boss but I stand strong. When I'm having a bad day, I let him know it. I don't apologize , I simply state that I'm having a bad lupus day and I will do what I can as best I can. Such things as moving supplies may not be an option some days. Slow and steady, take my time and double check my work. I am a Peanuts fan, so I created a snoopy lupus scale (my version of a pain scale), covered it with clear contact paper and use a restickable arrow to point to my lupus level every day. A silent, yet effective way to let coworkers know how I am feeling. My job isn't physically demanding but very emotionally exhausting so when I get home, I'm wiped out. Fortunately, my kids are grown and gone so I can go home, put on my jammies, make a quick and easy dinner and relax. Husband I'd very helpful. Good luck jcole and keep us posted
Thanks everyone for the advise. I wear sun screen just about everyday. But I will look into the UV filters for the lights and my computer screens. I just never thought of the light effecting me but it makes scene. Last week was the first time in 3 months that I actually worked my full 40 hours. I was glad I did but then I was to tired to do anything over the weekend. I am lucky I have my dad who helps me with just about everything. There are even days when I am just so tired he will drive me to work so I can get 30 more min of rest. So I am hoping to this week I can make it another 40 hours. Thanks again everyone.
I feel for you. Although I am not working anymore, I remember how exhausted I would be at the end of the day. I was a substitute teacher and worked with kids all day. It was stressful. I would be so tired sometimes I would skip dinner. Just didn't feel like fixing or eating anything, and I had to let the housework go too. I realized I couldn't do or be everything to everyone. Get as much rest as you can, and eat as well as you can. It helps.