What do you do for work? (Or do you?)

[sunnyinthesnow]

I am trying to figure out the rest of my life this week. Doable, right? : ) Currently, the topic taking up all of my brainpower is my future as a gainfully employed person. As my symptoms get worse, I am trying to think of something that can be done quietly, from the comfort of my own home and won't require too much energy..

So my question to you is- what do y'all do? Do you work? If so, do you have a job that's easy on your fatigue/optical issues/ etc?

Any ideas, advise and personal stories are GREATLY appreciated.

[Guitar_grrrl]

I'm a cardiac sonographer (cardiac ultrasound), and I've done this for 30 years, now.  I, too, have profound arm and leg fatigue, and it's taking a toll on my work.  I even had a cardiologist complain about it earlier this month.  I worry about how much longer I can hang in there.

When it comes to moving on, I've considered teaching at the cardiac ultrasound program in my area, or doing some research assisting (my degree is in Biology).  I can't afford to retire, yet.

One day at a time...

[sunnyinthesnow]

thank you all SO much... i needed to hear each and every one of those things. my biggest problem right now is muscle fatigue in my arms. which, as you can imagine, is freaking me out. i keep thinking, "gee, darlin.... what job to you suppose you CAN do without constant use of your arms, hmmm?" all i can think of is freelancing from home. writing? maybe, but so far sllowe and tireofbeingnumb are the only ones who think i'm funny. ; ) selling vacation properties over the phone? too soon.... real estate crash too painful... i have NO computer skills so that's out...

i DO love science.. how flexible are those labs? : )

alright... i'll give myself two weeks to figure it all out...

[supermum_ms]

I'm currently home schooling my very gifted Aspie son, not a job I really want, hours work for me though cause its very flexible and he likes the hours cause when i need a break he gets to do his thing.

I cant do any of the things i'm trained for, I had planned to go back to uni, was actually looking forward to it and then April 09 changed everything, as time moves on i cant imagine i'll be able to ever go back, but we will see.

I've toyed with the idea of finishing the book i started writting, still like the idea of helping other parents with kids like mine, the good stories as well as the battle it takes to get them there. I use to write (one of my many careers) manuals, breaking down a complicated process into its most simple, lol now its the simple that seems so bloody complicated or impossible. I still think i'll finish my book one day, thats a thought have you concidered editing, thats something you can do at home, as is book keeping, programming etc.

I was also a designer once apon a time, loved to draw and make costumes for any of the schools i've been involved with, cant do that anymore, tremor is a pain in the butt! I've always been a reader, i dont do that as much as i would like, tremor makes it hard to hold the book and the eyes prefer to read using my large screen monitor, though i still do more reading that most i suppose. I have so much art in my head but no way of getting it on the canvas, i have a lot of things i'm going to do.............one day!

What ever it is that you choose, make sure you choose something that you love doing, you'll find a way to get around the issues that come your way, if you hate it or just do it cause you have to, its a lot harder in the long run. Id list all the things you really like doing and list all the things you are qualified to do and list all the things you need eg flexibility then find the cross over, theres bound to be something that you can tweek into a career.

Cheers......JJ

[GrannyJo6]

I work part time ( 5 hrs per day, 4 days a week) at our church as secretary. I am on the computer a lot and this latest exacerbation has involved my eyesight, so as long as my eyes aren't quite right, I can't drive and he doesn't want me trying to do a lot of work in front of the computer screen. Not to mention I have noticed a cognitive shift. It is taking me longer to come up with the correct spelling of a word for instance and yesterday I think it was, I forgot where the comma key was. Not good!
However, they have been very understanding and when I am ready, I am welcome to come back. They will hire someone for 10 hrs for now to replace me. I do have short term disability which will help some.
I am close to retirement anyway, so if this is as good as it gets, I'm OK with that. I will miss driving, but I wouldn't want to take any chances!

Is there something you like to do as a hobby - knit, crochet, bake (that would be dangerous for me!) that you could do to sell at craft fairs, etc. Is you job at all flexible - could you do less hours and work from home on things that aren't critical?
Well, I've rambled on long enough and guess what? My eyes are tired! Best wishes as you sort through life choices. We've been doing a lot of the same. Granny Jo

[Tiredofbeingnumb]

I am a medical technologist. A little known profession, but we are very valuable! Know all of those tests that the doctor orders, like tests for Lyme and B12? Well, it is my job to run those tests and report them to the doctor. Well, technically, I work in Microbiology, so I do things like urine cultures and blood cultures. Med techs also make up hematology, blood banking, and chemistry.

I am lucky in that where I've worked, my hours have been somewhat flexible, but you definitely can't work from home. Trust me, with what I work with, you wouldn't want to. But, it is an interesting profession. It is good for science people, like me, who enjoy the science and biology of it all, but don't want to deal with the patient care aspect, at least the way doctors and nurses do.

[lovemy6monkeys]

I'm a stay-at-home mom. The hours are horrible but you can't beat the "benefits" LOL

I have a little side hobby, making truffle type candy that I sell. It has taken off pretty well in the last few weeks, but not enough to consider a business yet.

I'm also going to be taking online courses for medical transcription, hopefully in the next few weeks I can get that figured out and started. Then, once I'm certified I will be working from home. I don't think I would do well in an office environment, the whole having to shower and get dressed *every* morning does not appeal LOL My husband teases me that I'm the only person he knows who will get up in the morning and change out of my nightgown and into pajama bottoms and a t-shirt...but I do wear real pants if i leave the house :-)

Working from home will mean slightly less income, and most likely less to no benefits, but it is worth it to be home when my kids are home, and to have the flexibility to do the work on my schedule.
~Jess

[cainer]

I  was devestated to  i  hung  on  as  long  as i  could.  loved  my  job
cained  chairs  the rustic type.    
   but the fatigue  and   the thinking process  brought me down. hjad  to  quit   even  went  2  sleep  on  way  home  that  did it  wrecked  my  car-  i  loved that car-

  all i  hit was a tree  but totaled it-  so    its  something to think of   none of us  would want  to  hurt  anyone-
   pride gets in the way-   then  before u  can  get  disability  lol  u  have  2  wait  2   years  of  not  working!!
wonder  who  made that  law!        tick

[sllowe]

Had to laugh at your trying to figure out the rest of your life "this week." You've given yourself some task guuuurrl, ha/ha

I'm still working. I still think about things like this from often especially during those "I can't do it days."  

In the end, I'm so tired of thinking about it, I focus on getting through my day as is. And, then I adjust as I have to from there.

I'm interested in hearing from others on this too

[NiCeeGlover]

I lost my job before I was dx so I don't have LTD. : (
I'm not on disability yet either.
I hope they hurry with my dx so I can at least get that!

I have small bleeds in the small veins of my brain too, so it complicates things.

I've been stuck holding still on a recliner since last October because of that.

Once that's healed and I am released to move around,

I'll be doing wood work when I'm up to it.

I specialize in furniture for children.

Can't do much these days, but I am doing better.

And hope so bad I'm healing!!!

I will be seeing my doc Wednesday and I can't wait to find out what's happening!

I want to get off this chair!! LOL

Right now I do scapbooking and play on here when my eyes allow
me to: )


Hugs,
NiCee

[Erin0313]

  I am in charge for Accounts Receivable, Accounts Payable, Payroll and sometimes when we are short staffed Customer Service.

I sit in a nice chair at my desk part time 6 days a week. It's nice that I have air conditioning etc and can go home and nap between work and dinner with the family but my problem is cognition.

Most MS'ers are worried about physically doing their jobs. My MS has had huge cognitive effects and if it keeps up I doubt that I will be handling all of those numbers for too long.

Unlike the others I did not get Long Term Disability Insurance and could never afford it now.

My advice is to pick something that you like and just enjoy actually liking your job for as long as you can. "Normal People" have a hard time getting out of bed for work every day so for us it's WAY worse - unless you like what you are doing.

No one - not even our doctors can tell us exactly how long we have before we won't be able to do or jobs so I am taking it one day at a time and encouraging my children (young adults) to find a career that the love so that they will not be among those that moan and groan in the morning, not from pain but from lack of interest in the job that they have to go and perform!

Good luck choosing - keep us posted
Hugs,
Erin :)

[jensequitur]

Yup, I started carrying LTD before my diagnosis.  Now I'm glad I have it - as long as I stay employed!

[Sailorsong]

I use to design computers and software for them. I really loved the work and was devistated when I had to go on disability. Luckily I had invested in Long Term Disability Insurance at my last job so I have more then just SSDI to live on for now.

When I first developed sx 22 years ago my cognitive function deteriated quickly. It is really hard to design a computer when you are having trouble doing simple math. One doctor stated that I had lost 70 points on my IQ at the time I went on disability.

I highly reqomend everyone to carry LTD insurance as you never know when or what will keep you from working.

Dennis

[LoveMyBostons]

I'm the payroll supervisor for roughly 900 employees. I do worry often about being able to continue working for another 30 years like I had always planned on. Right now I'm focusing on paying off as many bills as I can just in case that days comes soon when I have to quit.

[Audrey_M]

I'm the Director of Finance for a YMCA.

Like you, I am concerned about work, escpecially because I am approaching my mid 50's and there are few jobs to be found in my county. I had to resign from a job late 2007 when my son was not responding to treatment for Lyme Disease. I had a short stint with a CPA firm and then it took me 10 months to find a job.

I commute 45 minutes, all highway driving. I have missed numerous days when my sx flare up.  The biggist reason for not being able to go into work is the "unbearable lightness of being" feeling along with blurred or double vision. Fortunately, I am set up to telecommute, so that if there is work I can do from home, I am able to do so. Unfortunately, one never knows when those "impossible" days are going to hit, so I don't always have the backup with me to be able to fill a day.

I have noticed that my cognitve functioning has been impaired, and this does impact the quality of my work. I have to keep instituting safeguards/double checks to ensure that my work is up to par.

I'm not dx yet, but have an appointment with a new neuro who specializes in demyelinating disease tomorrow. I am hopeful to get to the root of all these symptoms with some treatment that can address them. I know that it is going to be another spell of doctors visits and tests, but this time I am determined to see it through.

[HVAC]

I am an artist, a painter, and I pet sit a few animals that are close by. I used to have a busy pet sitting business. I used to drive to people with dog's houses three times a day and keep dogs at the house. I can't count on driving anymore. A supposedly friendly dog killed our cat in our house so, no more dogs at the house.

I may get back into dog training.

Alex

[jensequitur]

I work as a graphic designer, so I'm inside, sitting down in the cool most of the time.  This works well for me.  If I'm feeling poorly I'll be less productive, but it doesn't keep me from working.  Unless I'm really bad off, and then I'll take a day or two off sick.