Author Topic: Working for a living?  (Read 6093 times)

lorjacks

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Working for a living?
« on: May 30, 2014, 08:37:41 am »
Hi all - I was just wondering if any of you wonky heads out there were still working everyday and how you cope. I just started a new job (pre-toastie) and find I'm wobbling from the parking garage to the building. Once here I'm better (I think stress or nerves have a LOT to do with your balance).

Anyway, I'd like to hear your stories about how you cope with the challenge of balance at work.

Thank you
Loree J.
diagnosed in 2009
W&W 5 years
AN grew to 2.4
CK at the University of Miami Sylvester Center
July 30, 2014
"By heaven, man, we are turned round and round in this world, like yonder windlass, and Fate is the handspike"... Melville

Echo

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Re: Working for a living?
« Reply #1 on: May 30, 2014, 01:10:30 pm »
Hi Loree,

I have been able to work all day, every day both pre and post Gamma Knife with all my symptoms, wonky head and balance issues being the most challenging.  Stress can increase my symptoms but I am more sensitive to barometric changes and darkness so for me winter was a real challenge.  My wobbling was noticeable enough that a few coworkers commented on it.  I just brushed off their questions saying I was fine, just having some inner ear balance problems, and that was usually the end of their comments. 

I also find being 8 months post Gamma that I still require plenty of rest.  I stop everyday for lunch and find a quiet place to put my feet up, close my eyes and listen to relaxing meditations on my Ipod for 10 - 20 minutes.  Being well rested makes a huge difference in all my symptoms. 

Pace yourself and keep rested, you'll do fine!
Cathie.

 
Diagnosed: June 2012, right side AN 1.8cm
June 2013: AN has grown to 2.4 cm.
Gamma Knife: Sept. 11, 2013 Toronto Western Hospital

Kathleen_Mc

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Re: Working for a living?
« Reply #2 on: May 31, 2014, 02:52:13 am »
I returned to work 3 months after surgery and have continued working ever since, full time nursing. How do I cope with the balance issue? I just "carry on"....push myself. Yes there are days I am so dizzy I don't know if I can make it through the shift, but I do.....and yes I have had to be off sick when things are really bad (say I get a cold or something else that effects my sinus area, that will make things really bad). I guess a lot depends on the type of job you do, your own interpersonal coping skills etc.
Take care, Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

Hokiegal

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Re: Working for a living?
« Reply #3 on: May 31, 2014, 05:00:44 am »
Hi Loree. I returned to work after four months, but at reduced hours for another three months while I continued physical therapy.  I work as an engineer, on the computer all day, and my vision was a real challenge  at first due to facial paralysis and dry eye.  I used Lacrilube, which is like looking through Vaseline, so I was essentially a one-eyed data analyst for eleven months. 

After two years, I still tire easily, but I am finding ways to cope.  I find extreme multitasking to be exhausting, so I try to structure my workload to focus on just a few things at a time.  That's not always possible, but it helps with my energy and focus.

Background activity distracts me now, so I sometimes leave the cube farm and find a quiet place to work.  Or I stick an ear plug in my non-AN ear -  amazing how much that helps with focus and, oddly enough, with tinnitus too.  I still take occasional vacation days just to rest, and I sleep a lot on the weekends.  and that's frustrating after two years -- I feel like I should be past that by now.  But it's usually a result of working too much (eleven hour days) or letting things get too hectic.

Hearing is an ongoing challenge, and while most people are very accommodating, some are not.  Straining to hear is exhausting, and there are times when I miss something.  I do ask people to speak up when needed, and to speak one at a time in meetings.  And I try to position myself at the corner of the conference room table.  All that helps, but I will tell you that I am starting to consider a career change.  My work environment is fast-paced and multilingual, and there's only so much I can do to manage it. 

All of the above -- the stress, the fatigue, the hearing. the blurry eye -- affects my balance, and I have recently had some near-falls. I love what I do, but overall quality of life is important, too.  Everyone's situation is different, and many people do just fine at work.  I wish you all the best in your journey.
« Last Edit: May 31, 2014, 05:11:55 am by Hokiegal »
3.0cm AN diagnosed 08/11, age 47
surgery 09/11, Dr. Patel (MUSC), 95% removed
SSD with tinnitus, right side facial paralysis, vision and balance issues
facial movement much improved, and still returning after 3yrs
"We are better than we think, and not quite what we want to be."  Nikki Giovanni

robertwh2

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Re: Working for a living?
« Reply #4 on: May 31, 2014, 06:34:32 pm »
I was able to return to work 8 weeks post op, but should hae taken a few more weeks. I also am a bi-vocational pastor and returned to thar after 4 weeks. My tumor side balance nerve was 97% non functioning so besides being tired I did fine. More recently, 4 years post op, having more issues and struggling to make it through the day. From my first week back I have napped Sat and Sunand slept in on Sat to help with overall fatigue.

I have been lucky though.
Diagnosed Feb 2010 with 2.3cm x 3.2cm left side AN
Trans Lab May 26, 2010 tumor had grown to 4.5cm, University of Michigan
Subsequent MRIs are clear
Left single sided deafness

lorjacks

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Re: Working for a living?
« Reply #5 on: June 02, 2014, 09:27:09 am »
Thank you all for your responses!  :D I am very encouraged and I need that right now. I see Dr. Eshraghi at Univ. of Miami on Friday to discuss Cyberknife.
diagnosed in 2009
W&W 5 years
AN grew to 2.4
CK at the University of Miami Sylvester Center
July 30, 2014
"By heaven, man, we are turned round and round in this world, like yonder windlass, and Fate is the handspike"... Melville

ampeep

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Re: Working for a living?
« Reply #6 on: June 02, 2014, 11:39:01 am »
I was fine until 9 - 10 weeks post GK, then got hit by bunch of side effects, including sudden dizziness -- couldn't drive to work for a week.  At the same time, I got some bad headaches, almost unbearable tinnitus & total hearing loss on my AN side. 

After a week, the headaches went away & few weeks later, my hearing got a little better.  It's been 6 weeks & I'm still dizzy, though not quite as bad.  Had a MRI done a few weeks ago that showed swelling, which would explain  the side effects.
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

SDTom

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Re: Working for a living?
« Reply #7 on: June 02, 2014, 04:39:14 pm »
Hi,
I would to say if you can work do so. I had complications and was told my job would not be there for me. (this was after about 9 months and I was getting worse) So I went on disability and long term disability insurance. I'm very grateful for this and to my wife who has done all the legwork. Here the thing - once you go on disability it might be difficult to get off. At least that is what I am finding.
Tom
June 2011 3.8 cm tumor debulked.
July 2011 Hydrocephalus, Meningitis.
August 2011 shunt installed.
Sept 2011 28 rounds of radiation.
Things kept getting worse
March 2012 tumor removal at Mayo clinic