Worsening fatigue jeopardizing my work

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. 

    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

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 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?

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!