To work or not to work - that is the question????


Posted by Scott Harvey , Nov 14,2001,07:19   Archive
G'day

Just sitting here feeling sorry for myself after a horrible day at work. felt I needed to vent my spleen. I am going through a very trying part of the progression of this condition - great at the weekends but experiencing near total shutdown of the eyes at work - the more I read the more the eyes play up. difficult to avoid the reading in my job probably about 200 pages of info on a daily basis that I need to be aware of. Work have been great about it but I am starting to question myself when I am probably about 40% productive.

the difficult thing is that I seem to have a choice - do I continue with the job and basically have no energy or capacity for anything else - including my wonderful family OR do I look for an alternative which may involve some short term financial cost but be able to enjoy and contribute to family life?? I am in the fortunate position that I have a great disability superannuation policy as I have worked for the same org. for 23 years but at 42 have difficulty in looking at "retirement".

On the positive side I am going interstate next week and have managed to set up an appointment with a nuero-op - the choice where I live is fairly limited - 2 neuros and I'm not sure of how much experience they have with BEB

As I said just venting my spleen (Is this just an Australian saying?) and not expecting any great solutions - but isn't that one of the strengths of this board - who needs therapists?

Cheers

Scott




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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by Kelly Saffell , Nov 14,2001,08:26 Top of Thread Archive
Scott,
Sorry you are faced with this. I've been there. I quit my job in Dec 1999. I worked with beb for 4 years but seemed to get worse every year. At the time I went on disability I was 30 years old with 2 daughters (Morgan 4 1/2 and Cory 22 months). I was so miserable that I couldn't even give my girls a bath by the time I got home from work. I still remember crying by the end of my 1 hour commute home (with rush hour traffic and picking up kids from 2 daycares), begging God to keep my kids safe for just a little while longer. I was a CPA. I had been with the same company for 9 years and had worked so hard in college to graduate with a 3.9 gpa and to pass the cpa exam on my first try, which is almost unheard of. Giving that part of my life up was hard but I had no choice. My kids needed a mom and they weren't getting one. I made the decision one day when I woke up one day realizing that I was disappointed that I was still alive at all. Nothing is worth that!! My oldest drew a picture at preschool of her family and I had no eyes. Her teacher had written "mom's eyes are sick and the doctor took them out." I had never even told her anything about my condition and when I saw that my blood ran cold. I am now open with both the girls about what is wrong with me but at least not working I am able to care for them where I couldn't before. Things are still very hard and I am still very limited but my kids have a mom.
Kelly in Dallas



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To see or not to see ...

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by Moderator-JB , Nov 14,2001,10:29 Top of Thread Archive
G'Day to you Scott,

After a year long fight to stay employed and then going the disibility route myself, I understand. (I'd worked for 20+ years and did need the income.) It's certainly not easy but then neither is this disorder. Unfortunately the disorder often makes the choice for us.

Having a family to provide for makes it much more difficult. It seems to me that men may have more of a problem in this area than the women.

Venting is very much what this BB is about. There are never support groups handy when you need them. In my location there is but one meeting per year. Since the disorder is somewhat rare, most of us do not have access to others who have experienced the same path.

Connection and comparison is necessary.

Take care,

Judy Blackman
blkmn36@earthlink.net




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Re: To see or not to see ...

Re : To see or not to see ... --- Moderator-JB
Posted by Kelly Saffell , Nov 14,2001,10:45 Top of Thread Archive
Our support group in Dallas area seems to meet once every 10 years! I just started attending the dysphonia/dystonia support group which isn't as good as a beb one but at least there is a common thread. At the last meeting there were 3 of us with beb so we spent some time together. And the people are so nice.

Kelly




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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by Carol Brown , Nov 14,2001,10:29 Top of Thread Archive
Hi Scott,

I read your message and felt the need to respond. Believe me, you are not alone. I worked for 26 years, then ended up going on disability. I know when I was first diagnosed with this, I was devistated. I went through times of depression and anxiety. But then, I got to really looking into this disease and finding people who are so much worse off then me. I am new to the BEB board and I think it's great. My husband tries to support me the best he can, but you know, it's just not the same as talking to someone else who is going through the same thing.

It sounds like you're on the right track with your upcoming appointment. I also go to a neuroligist for my botox injections and somehow feel they (neuroligists) are maybe more qualified than an eye doctor.

Good luck to you Scott.

Carol in Naselle, WA where we have a raging rain storm right now.




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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by Shirley-Arkansas-USA , Nov 14,2001,18:06 Top of Thread Archive
Venting one's spleen must be an Australian saying. I've never heard of that one. Quite graphic.
I agree that this board is a great outlet and we all like to act as pseudo-therapists, anyway. Gives some of us a mission or job.

Gee, let's see-having a life with your family with less symptoms or no gratifying life with the ones that you love but worsening symptoms and pressure and a "job". Tough one, huh? I know that I am making light of it but you actually summed it up rather well yourself. I agree with Judy, too, that I believe that this is more difficult for men to come to terms with.

My employers kept wanting me to come back to work. They were even going to have someone drive me to and from work. But, I knew that I couldn't do the job and I've never been happy with doing something half-way. So much pressure was gone when the actual "decision" to quit was made. I was so relieved even though I had enjoyed my job and had been good at it. It was no longer worth what it was costing me.
I also was coming home exhausted and could do nothing with my family. Most evenings, I would just go to bed and try to hide. I don't even like to think about that first year. I was also embarrassed to ask for SSD. I knew that I would qualify but somehow I felt like people would think less of me if they knew. It doesn't bother me so much anymore.

Good luck with your decisions and "Vent your Spleen" anytime you feel like it.

Shirley in Arkansas with BEB/Apraxia




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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by MaryNY , Nov 14,2001,18:38 Top of Thread Archive
Hi Scott- Yes, I've heard of "venting your spleen", and sure know how to do it at times! You're right about this BB being the best therapist, and doctor, for that matter. I almost think you are working your thoughts right through the idea of "retiring" -- you're very fortunate to have a "great disability policy". I, and I know many others, think stress is the most outstanding cause of symptoms, and you are saying that you are stressed at work, but not so much at home. Doesn't that answer your question? You would not be retiring from LIFE, just from a stressful situation. And, if you're really lucky, your new "job" at home will be the best supporting factor you could have. As long as you are financially able to maintain at least a stable lifestyle, I would think you'd be better off at home. Just give yourself enough time to "wind down", and not worry about it for a while. Then you will certainly find new possibilities ahead, and be able to pursue your choices, not your so-called duties. Good luck to you!



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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by Delaine Inman , Nov 14,2001,19:17 Top of Thread Archive
Venting your spleen or spilling your guts...it's all the same outlet we need sometimes. I think you have to do what is best for you and trust that the rest will take care of itself. I also think you already know what is best for you and if you are blessed with good disability coverage at work that may be exactly the blessing you need to give yourself premission to use to have a better quality of life by not working. Your family will appreciate and benefit from having your presence with them in the best possible way. I had taken a $20,000 a year pay cut from management and critical care nursing to do a job that I loved. When I did it a part of me said "you must be nuts", as my salary went down my husbands went up drastically. When I was working at the job I loved I would have told you we can't live on 60% of my salary if I quit and get disability. The truth is I couldn't do my job and stopped in May of 1999. If I could have held out until August I would have been fully vested in my retirement plan and gotten a raise that would have increased my disability income, but I just couldn't keep forcing it. It was too stressful and dangerous for me and my patients. Guess what? we survived....We sold our house and made a large profit and moved closer to my husband's job and decreased our expenses. Blessings from sources we could have never imagined keep coming just when we need it every time. That's my story and I don't regret it. Sure I wish I could work, but frankly managing this with as little stress as possible is the best medicine for me. My job was not who I am and my mantra became, "God is my Source, Love is my Force"......May the Force be with you.



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Re: To work or not to work - that is the question????

Re : To work or not to work - that is the question???? --- Scott Harvey
Posted by scott harvey , Nov 21,2001,05:32 Top of Thread Archive
G'day

Thank you for all your posts

I suppose they just reinforced what i was thinking

Went to the Neuro-op on Monday who had nothing much to offer - so I guess it's approachoing decision time for me.

Is there anyone from Aus who is lurking out there who may have some suggestions about docs? Apart from one in WA (sorry I can't remember your name) it would appear that ther is no one else who is experiencing the effects of this condition as I am. The Doc I saw on Monday did say that all of his patients responded to Botox and I was "special".

Will keep you informed of my decision regarding work - thanks

Scott




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Re: To work or not to work - that is the question????

Re : Re: To work or not to work - that is the question???? --- scott harvey
Posted by June in Toronto (June Floyd,June in Toronto), Nov 21,2001,07:48 Top of Thread Archive
Glad to know your doctor thinks you are "special" Scott:-) Good luck with your decision.

June in Toronto




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