Posted by Barry on March 12, 1999 at 11:12:01:
In Reply to: Re: HOW do you hold on to your job? posted by gary g on February 19, 1999 at 14:00:48:
Re: comparison to terminal cancer...in that case your family can at least receive life insurance benefits. My wife and children won't if my life ends due to CH. They would also suffer psychological penalties that others would not.
While it's nice to read upbeat and positive messages, one should be careful to bear in mind that some people may be suffering more than others.
I read accounts of people who get a few 30 minute clusters a week, for a few weeks each year. I feel very badly for them, or even anyone who has had just one cluster.
I have chronic clusters (along with migraines)and went through several four-month stretches of 2-hour clusters, two to four times a day, every day. I prayed I would die of some natural or accidental cause.
I'm sure others have had it worse than me. I'm sure others have had to choose their own solutions. I can give empathy and companionship to other sufferers and hope that it's of some help to them. But I wouldn't think of suggesting or implying that they count their blessings, face up to their burden and get on with an alternate approach to life. That's a bit too hard to swallow when you're screaming with pain, haven't slept decently for months, can't think straight and are taking all sorts of medications.
I know your comments were well-intended and I thank you for taking the time to write them. Your experiences are of value. I just want to ask that you not try to suggest them as a remedy for others whose situation and pain may be different.
As for a job, I went on disability 3 years ago. Many of my triggers came from the work enviornment and normal daily stresses. I've tried working at home and find I'm too unreliable even for that. It is very frustrating, and I feel guilty for not working. My wife earns a good salary and I collect private disability income, so we are managing to hold things together so far.
I filed for Social Security disability two years ago. That has been very frustrating. I've been rejected 3 times and am still appealing.