Bad Day

april1848 · 02-25-2008, 06:38 PM

Today it finally sunk in with me that work is getting almost impossible. I was ready for a nap before I even left for work. Driving was not fun. Typing was (is) difficult because of a new symptom. My hands are almost completely numb, with the exception of my fingertips, which burn.

I keep forgetting things at work, and even though I use a scheduler, I'm still missing things. My job is very demanding, and I thought maybe I could get a less demanding job, but I really don't even know if I could handle that. I can picture me at a job interview, stuttering and shaking like a leaf like I do all the time. Who would hire me?

I talked to my boss today about getting long term disability thru my work. He's all for it. He said he sees me struggling every day. The issue for me is more health insurance than money, although I'm hardly well-off.

I'd have to be out of work for 6 months to get the work disability. Then, I thought, I can go for Social Security. I know it takes a long time, but I don't know what else to do. My husband and I can pay for COBRA so we can at least have insurance for a year and a half.

I had a talk with the husband and now I feel so guilty. We would survive but it wouldn't be easy. He told me to go ahead and do it, but the guilt won't let me!

Tomorrow I'll call my MS specialist and see if my medical records will substantiate a disability claim. I'm so scared that they won't!

I'm so scared, tired, guilty, and angry. Tomorrow I have a 12 hour work day, and I have no idea how I'm going to make it.

Also, there are certain members of my family who wouldn't understand if I didn't work, because I look so healthy. They would just see me as a lazy person living off the government, and that upsets me. I just feel so lousy. Thanks for listening.

Nuthatch · 02-25-2008, 06:52 PM

Aw, april. I really feel for you. Listen, I got approved for SSD for having Fibro at the age of 26. Of course I was denied the first time, but I got a lawyer and he fought like a mean dog. Now, things are much worse and 10 years later. You will probably get it as well. If you can't function mentally, you're going numb, and with the severe fatigue and stuttering, how can you continue this way? Forget about what others think of you, and get your disability. Do NOT continue to suffer because your family doesn't understand. You'll just end up getting worse. Stress is a killer. I've been on heart meds since I was in my 20's because of it. You don't want that on top of everything else.

Listen to your heart and reread your post. You're suffering. You need rest and disability. This does not mean you're lazy. Take advantage of what's out there for you. You deserve it. Remember that.

Much love, sweetie.

april1848 · 02-25-2008, 08:19 PM

Thanks for your reply, Nuthatch. This job of mine is really too much for me, and I know I shouldn't feel guilty but I do. I never thought I'd be dealing with this stuff in my 20's. I keep thinking of what this will do to my husband, too.

This is hard stuff. I wish I could just go to bed but I have a million things to do!

tarapags1107 · 02-25-2008, 08:20 PM

April-
First and foremost, don't let what others think of you make an impact on your health decisions. They probably have no idea what it is like to have MS and have to live and function with it on a daily basis. Remember that you do not owe anyone an explanation, but you could sit down and chat with some of your family members and try to explain. (That is, if you don't feel too awkward doing this) Just because your deciding not to work, does not make you in any means "lazy or unproductive". 12 hour days are rough on healthy individuals, NEVERMIND people struggling with an autoimmune disease! So give yourself some credit for pulling those shifts when you do. As for your hubby, I think you should try to just do whats best for you and do not feel ashamed. You did not ask for this disease, and if he doesn't support you, people here do.
If you are going to look around for a less demanding job, try to think positive, there are bosses out there that ARE understanding and would hire you. I know this from experience with my own boss. I have not yet been diagnosed, but have a boss whom herself has lupus and her own world of complications. But don't be decieved, there are also healthy managers and supervisors who would hire you especially if your up front and honest with them. I would probably suggest letting them now about your illness right away, and you'll have a better outcome. Good luck with your claim if you do decide to take it, and your appointment tomorrow.
Tara

MSJayhawk · 02-25-2008, 08:50 PM

Visit the SSA website and print the checklist for MS. My doctor used that list for approval and I was approved in 2 weeks. That "lazy" person is a disabled person. Believe me, I would rather be working, but I could not perform well. Ignore the naysayers who do not live with MS day-to-day. When they speak down to you, impart some wisdom to awaken them from their stupor.