Worsening fatigue jeopardizing my work

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photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 9/12/2007 6:02 PM (GMT -7)   
Hi all,
 
I'm so frustrated and just need to vent to those who "get it".  I was diagnosed about a year and half ago and didn't think I'd be in this position already.  The fatigue is killing me!  Every little thing I do, I end up paying for.
 
I went home for my dad's 60th birthday (4 hour drive) and came back the next day.  I always do all the driving but needed my fiance to drive most of the way home.  I was so tired/dizzy/nauseous and plain exhausted.  It's so frustrating because all we did there was visit.  No shopping, no nothing.  As a result I've already missed 2 days of work.
 
The work absenses are rapidly piling up and I know I need to work less (only work 24 hrs a week as it is).  I'm scared because I feel it's not going to be much longer before I can't work at all.  Work is my sanity, my social outlet and my escape.  I already feel so limited in what I can do and I hate it. 
 
My sister and her family came to town for a summer festival and I really wanted to go, but I knew that would cost me about 3 days of recovery time.  Am I needing a scooter or wheelchair already for stuff like that???  That seems so soon to me!  I'm 32 and haven't had MS for very long at all. 
 
In a week and a bit is our Florida trip for my nephew's make-a-wish.  We both rented scooters and thats fine because I know it will be hot and humid.  But now I'm worried I will be completely exhausted before we even get there, just from walking through the airport and visiting on the plane.
 
I'm still taking Levo Carnitine which helps some?  The other meds don't agree with me because of my anxiety (which is also probably wearing me out mentally).  SIGH.
 
Anyway, thanks for listening... I'm trying to stay positive but it's hard.  Being positive takes energy sad
 
Hope everyone is doing ok,
Shar
 
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/12/2007 7:16 PM (GMT -7)   

The fatigue is unfortunately one of the main reasons why many of us had to quit our jobs.  I'm sorry you're having to face this.

You do need to preserve what energy you have. Indeed, driving 4 hours is VERY tiring. You were with your boyfriend -- next time split the time coming AND going, and try to nap when you aren't behind the wheel.

When you have events like the summer festival, rent a scooter for the day. It's good you're renting a scooter for the Florida trip. When you're there, rest as much as you can. Excuse yourself from some activities and get an hour or so "down time" in the afternoon, so you can manage to get through dinner and the early evening. The heat and humidity will be very taxing, and combined with the "not home" location and the stress of the event, you're going to be exhausted afterwards.

When you check in at the airport, tell them you need assistance -- a wheelchair and a push -- to get through security and to your plane.  They'll be glad to provide it (for free, but "tip" whoever pushes you!). Then when you're on the plane, about 30 minutes before you're scheduled to land, ask the flight attendant to call ahead and have someone there with a wheelchair to meet you, and get you through the airport, to baggage, and to whoever is picking you up (or your rental car.) I don't know if you've traveled by air lately, but they really aren't happy with folks moving about the airplane, except to and from the bathroom (and even then, you're looked upon with suspicion!) so you might find yourself with plenty of time for a nap on the plane, at least!

Summer festivals, long airport terminals, Florida trips, are NOT "every little thing" when you have MS.  They are events that you need to plan for, need to know that you need to rest plenty, before, during, and after the event, and that indeed you may "pay" for it later by needing more "down time" than someone else who is 32...and who does NOT have MS.

I was going to suggest you find a way to reduce your hours, but you said you're only working part-time as it is.  Can you find a way to conserve energy on your job? Sit down, work a few hours and take a break -- even 15-20 minutes of quiet time can help -- then work a few more hours? Do some work from home?  Work from a wheelchair so you don't have to walk around? (I don't remember exactly what you do...so these are just generic sorts of suggestions...)

I really am sorry you're in this position. 


...I am not a doctor, nor health professional, and don't pretend to be one, here.....


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 9/12/2007 7:35 PM (GMT -7)   

Thank you Uppity.  Those are some good suggestions.  I've seen others on golf carts bombing around the airport, I should check into that.  I think the reality of my situation is hitting me and it just doesn't feel good, as I'm sure it doesn't for anyone else either.  This just seems so soon to me, I expected this 10 years from now, not now.

Luckily my job is a desk job and my work has been VERY accomodating.  The mental fatigue is what's getting me, our speed is constantly monitored and mine is slowing down, adding to the stress.  Im waiting to hear if I'll lose some of my benefits if I work less than 20 hours a week, that might decide right there whether I stay or just collect my long term disability and keep my full benefits.

I hope I can keep working, I'm not ready to leave yet.

Thanks for your reply,

Shar


Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Kimber
Veteran Member


Date Joined Jun 2005
Total Posts : 1852
   Posted 9/12/2007 7:40 PM (GMT -7)   
Hi Shar,
 
    The fatigue in itself can be a dreadful thing to deal with.  Since your med choices are limited you might ask your doctor about occupational therapy.  With MS they deal with helping people maximize their abilities and energy levels by teaching them how to do things in a different way. They also can advise on what devices might be necessary for you at this point and teach you how to use them properly. 
 
    I hope things improve for you.  It's an awful feeling when you want to do things but your body has other ideas.   Have fun on your trip, let us know how things go. 
 
Kimber
 
Co-moderator for Multiple Sclerosis
 
Allow Healing Well to continue to help others, clink link for details

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 9/13/2007 4:37 PM (GMT -7)   

Hey Shar,

I don't have any good advice but just wanted to offer my support.  Fatigue is such a hard one.  It is hard to deal with and doctors seem to have a tough time treating it too.  You certainly have my sympathy.  I want so badly for you to have a great time on your trip.  Take Uppitycat's advice and get all the support you can to try and manage your symptoms.  Take good care and let us know about your trip.

love and prayers,

 


Gretchen
diagnosed: MS  July 2006
 
A person without a sense of humor is like a wagon without springs.  It's jolted by every pebble on the road.
Henry Beecher
 


rhondab
Veteran Member


Date Joined Mar 2006
Total Posts : 2146
   Posted 9/13/2007 7:38 PM (GMT -7)   
Hey Shar

I'm so sorry to hear of this for u. I have had this fatigue and i know it can take everything from u. No life in u no matter how badly u want to do things...u just can't hold out long enuf to do anything. EVERYTHING drains u. I don't have any advice for u either...except that i used to just sit. That didn't help, but at least i wasn't working to sit. That alone tho, felt like work too. Just take good care and let s know how u'r doing. I'm here if u need me friend.
rhonda
Co-Moderator, MS Forum
 
*~*Sometimes the Lord calms the storm. Sometimes He lets the storm rage and calms His child.*~*


photogirl1358
Regular Member


Date Joined Apr 2006
Total Posts : 299
   Posted 9/16/2007 12:17 AM (GMT -7)   
Thanks everyone for your responses and support :-)
 
I got some good news yesterday that I can work less than 20 hrs a week and keep my full benefits, what a relief!
 
We are going to try me out at 5 hour shifts instead of 6 for awhile, unfortunately I only made it 2 1/2 hours today before crashing and burning.  You made a good point Uppity - I think I'll take the rest of the week off and rest up for Florida next week.  I have a feeling I'm fighting a cold, I hope that's why I'm so dizzy and off, not a new relapse or a new "baseline" of crappiness.
 
I will let you all know how I make out on the trip!  yeah
 
Take care all,
Shar
 
Diagnosed with MS April 2006
Longstanding anxiety and depression
Currently on Betaseron


Motown John
Regular Member


Date Joined Jun 2005
Total Posts : 475
   Posted 9/16/2007 5:48 PM (GMT -7)   
Sunday p.m.
 
Good evening:
 
Of the broad spectrum of MS symtoms, fatrigue is the worse to me.
 
It never leaves you. 
 
And unless you are a MS patient, you cannot understand the depth of the fatigue....
 
All I can say about your situation and, and it is VERY hard to do....
 
Just say no to attending such events.  Tough to fdo, but...
 
I take a script for my MS fatigue...Provigil...hopefully you have a good health ins. program, because it is an expensive drug...REALLY expensive.
 
Great luck.  John

Tertle
Regular Member


Date Joined Jul 2007
Total Posts : 108
   Posted 9/25/2007 10:07 AM (GMT -7)   
Just wondering if I couldn't work anymore, is my only option taking long term disability or is there something else to do. Just trying to prepare and know my facts. Also I have FMLA and am under the impression that a job can't fire you because you take time off. is this true?

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 9/25/2007 10:23 AM (GMT -7)   
Tertle said...
Just wondering if I couldn't work anymore, is my only option taking long term disability or is there something else to do. Just trying to prepare and know my facts. Also I have FMLA and am under the impression that a job can't fire you because you take time off. is this true?
Your options are tied first to what is available at your place of employment. Some employers offer short- and long-term disability, which would be your first "line of defense".  So read your personnel manual carefully, as each program has specific steps you must take to qualify, and you'd need to know what they are before you start.
 
No, it is NOT true that you can take FMLA and won't be fired!  FMLA generally is used by an employee to support someone in his family who is ill, not as an extension of sick leave.  If you KNOW that you're going to be out for awhile, like you have a scheduled surgery, then you can use the FMLA for that (but understand that it is UNpaid leave).  Using FMLA (Family Medical Leave Act, in case someone is reading this and doesn't understand what it is) can be very complicated. You should go to the website (just google FMLA) and download the material there.  
 
Your basic question -- can you use FMLA and not be fired -- is not true because if you don't follow the "rules" you can be dismissed (the rules on the web page). And if  you're out very long, the employer may not give you the same job back, but perhaps a similar job.  And -- like all regulations like this, employers can and will try to figure out ways to circumvent the laws, and you could be dismissed too.
 
There is also the ADA -- Americans with Disabilities Act.  This is not designed to help you reduce your work hours, but instead to help you figure out ways to do your job with reasonalbe accommodation.  You would need to do the same job you're doing now, but maybe there are ways you can ease your personal work load.  I can't get more specific with ideas without knowing just what you do for a living, but some reasonable accommodations that folks I know have used in the past included things like more breaks during the work day (but increased daily hours) so that they're working for 8 hours but maybe are at the job site for 9, and the additional hour is broken up in to extended breaks.  Or maybe simply moving their work space closer to a bathroom, or installing a fan, or ensuring closer parking space, or figuring out how to do the job sitting down rather than standing. 
 
Again, go to the ADA website and download the information there.
 
Finally your option is SSDI -- Social Security Disability Insurance (or income), or SSI -- Supplemental Security Income.  SSDI is more likely your option.  You can go to the Social Security webpages and find out more about both of these programs, to see if you're eligible to apply for either (or in some cases, both).  In these instances you'd not be working at all but would get some supplemental income from the programs.
 
This is a VERY preliminary and sketchy overview of what options might be available to you. But you're smart to look at all of these now, when you're not in the middle of a medical crisis and have to make quick decisions!   Happy Reading!
 
 
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


doodle67
Regular Member


Date Joined Sep 2007
Total Posts : 20
   Posted 9/25/2007 11:44 AM (GMT -7)   
Like Uppity said, read your employee handbook very carefully.  If your employer meets the guidelines for you to qualify to use FMLA, then you are entitled to up to 12 weeks of unpaid leave provided you supply them with all of the necessary paperwork. They must quarantee to hold your job for you or a comparable job if you return.  Again, this is IF you follow all of the guidelines.  As a caution, if an employer would like to part ways with you they will look for a loop hole in the paperwork or your job performance.  Some states are "at will" states but there again, there are always conditions that apply to every rule.
 
Take care of yourself.

DeeBeeMee
New Member


Date Joined Jan 2006
Total Posts : 16
   Posted 9/27/2007 3:36 PM (GMT -7)   
Have you considered taking a med like Provigil? I'd be lost w/o it.
Dee

Birthdays are good for you; the more you have, the longer you live.


pedidiva
Regular Member


Date Joined Mar 2007
Total Posts : 45
   Posted 9/30/2007 6:23 PM (GMT -7)   
My BIL has MS & had terrible problems with fatigue.  The neurologist put him on Strattera--it helped but the insurance does not pay for it as MS is not an indication (ADHD & ADD is, though) & Strattera is costly.
 
He has tried several supplements & then tried something called Tunguska--he has had no fatigue since & says that his energy level is like it was before his DX of MS. If you like, I am sure that he would share his experience with you  
 
(mod note: For privacy issues please place contact information in your profile instead of directly in posts themselves.  To do this go to the control panel and then edit profile to place the information.  Thank you, and if you have any problems or question don't hestitate to email me. )
 
 

Post Edited By Moderator (Kimber) : 10/1/2007 2:53:13 PM (GMT-6)

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