This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi
I can't rem if I posted about this before, may have! - sorry, memory is sometimes a bit ropey. Periodically gets to me....and this is NOT a pity-party-post - I have a very good life - just could do with some constructive advice about this situation.

I have just had 2 weeks off work as hols and have hardly thought about MS at all, felt so good. Even got the gym, did garden, went for walks- I felt alive. It seems all I think about in work (in between working!) is how awful I feel fatigue/muscle pain/eyes/balance/pain. Don't get me wrong, I really love my job and co-workers and I am a worker-bee to the core. But really starting to question whether I should be working fulltime.

Here I am, nearly 35, MS doing ok finally, and I'm spending 2.5 hours a day commuting, working fulltime and recovering from work in the evenings and weekends. I have very little quality time for me or husband or friends. I feel like I'm always trying to hang on another week. That has been my choice so far, don't get me wrong.

It's the commute that gets to me the worst. We'd love to move but the area I live in is low-cost compared to the area we'd need to move to and it would move our mortgage into a mortgage that would need both of us working fulltime to pay it! As we all know, I can't guarantee I can do that longterm with MS.

Keep on going? Or perhaps do half-time?
The thing that's really making me think is a close friend has SPMS and has lost the ability to paint/walk far/ etc. I am wondering if that's ahead for me too, and if so do I want to spend my life working, or have a bit more quality time now.
Any thoughts?

Hello World,

Well you know you should always listen to yourself but you can always take in advice. That's just to say that, ultimately, it is your decision what you do and yours alone. I, too, suffer the sypmtoms you describe. The only advice I offer you is advice I got from someone else and am just passing it on.

They said that you should work until you are absolutely, physically or metally, unable to do so. If you really think about it, I think once you became unable you would look back on times when you were able and wish that you had put your body to good use. I live by that advice and sometimes when my feet feel like pillows and I am reeeaaaalllly tired I call on that advice. I may have even read that advice on this board; I'm not sure. It works for me and I thought I'd pass along my mantra about working while you still can.

Please take it for what it's worth. I read your posts and you seem to see things clearly, but remember, it's just advice. It's like opinions.....well you know the rest! Don't agonize, but also don't take this decision lightly. It is life altering. If you can't tell it's a subject I'm passionate about. I struggle with it all the time and I, for one, choose work. However, if I were able financially to do so it would be a different story. Since I am not, I must work. Do what feels right, but also stay in your head some too. Good luck, I hope you choose what's ultimately right for you.

Hi Wonderful ,I just know that having to stop work was one of the hardest things for me and not being able to drive was just another kick to the head. I agree with Loobie , keep your life as normal as possible for as long as possible.

_________________
Had ms for over 19 years now.

Always on the Job, Employees Pay With Health
By JOHN SCHWARTZ

Published: September 5, 2004

American workers are stressed out, and in an unforgiving economy, they are becoming more so every day.

Sixty-two percent say their workload has increased over the last six months; 53 percent say work leaves them "overtired and overwhelmed."

Even at home, in the soccer bleachers or at the Labor Day picnic, workers are never really off the clock, bound to BlackBerries, cellphones and laptops. Add iffy job security, rising health care costs, ailing pension plans and the fear that a financial setback could put mortgage payments out of reach, and the office has become, for many, an echo chamber of angst.

It is enough to make workers sick - and it does.

http://www.kronos.com/About/nytimes1.htm

Hi Loobie
thanks for your honest reply.
There are two approaches, the "hang on as long as you can" - the approach you advocate. Then the "work-life balance" approach, which is starting to call to me more and more, if I'm honest about it!
I had followed the hang on as long as you can approach now for nearly 10 years since dx. I really define myself by my work, really can't imagine not doing my job. But really starting to consider half-time at least. That way I'd keep working, just have more quality time too. I think I have deliberated over this for the last year, no fear of me taking this decision ligthly!! In fact I find it very hard to make any decisions....
It will affect my pension, even maternity benefit if I am lucky enough to keep a pregnancy to term. I am in no rush to force myself to decide on this. As you say, it's too big a decison.

Thanks also, and hi! Robbie and Thomas. I do agree about keeping my life as normal as possible. I have only just learnt to drive and am just loving it. My friend with SPMS has had to give it up and it is really upsetting her. And Thomas, it's ok, I'm not American so I can't claim that my job is killing me! I work in a state organisation so I am treated very well regarding time off and working hours, no complaints there!
Thank you all again for replying.....I have a lot of thinking to do....

After looking through the forums without finding the perfect fit, I am putting this new (to me, anyway) vocabulary word here. The subject affects the daily life of so many of us!

From a recent AARP publication came this information:

20 million Americans have blenophobia--or fear of needles--according to a recent study.

Shall we make blenophobia the "word of the day?"

Hello Wonderful,

You may want to consider a compromise, if one exists. This doesn't even have to do with MS, it is about getting a better quality life, period. Your problem is not your work, it is your commute. It is about getting rid of your commute time. You mentioned you can't move closer to work because of housing costs, and I know how that one goes. Still work full time, but consider taking another job that is closer to home, if that is possible. It may be something that doesn't pay as good, but it might be something totally different and interesting. There is also the increasing costs of transportation to consider in the equation, especially if you are driving.

Long commutes are extremely life-draining, and not just for MSers, but for EVERYBODY. Years ago (pre-diagnosis), I lived in the LA area, and my ex and I had to find a place to split the drive difference as our jobs were 100 miles apart. I spent a minimum of 1.5 hours up to 3 hours a day commuting, depending on traffic. After I got divorced, I moved to be within 5 to 15 minutes of my work. I had to live in a dumpy duplex, but I could not believe the difference that made in my life, that such a large percentage of my life was getting sucked up commuting, and I didn't realize how much it had exhausted me until I stopped doing it. I vowed to never again take a job involving a long commute, and I have kept that promise to myself, even if it meant turning down good job offers, or taking good job offers and scaling my living accomodation back to be close to work. That is one decision I have never regretted.

Good luck with your decision -
Lisa

Hi Lisa
you have "hit the nail on the head". It is the commute that is the problem not necessarily working fulltime. Many of my non-MS friends complain about how tired they are from their commute and a few say there's no way they'd commute like I do. I take the bus, I wouldn't be safe driving for that amount of time every day! - I'd get a tired day and mistake red for green! But even sitting on the bus is tiring.

I am going to start actively looking around for a job closer to here. I keep wishing a job would come up in an organisation 5 mins away that I've had my eye on since it was built, but no luck so far! - they are also state agency so they don't hire until they've a real vacancy. Fingers crossed.
Thanks for your reply

WW, does the preferred nearby state agency hire temps? if you found out which company supplies its temps maybe you could get in the door that way? or is that not an appealing idea...

Unfortunately they only hire centrally Jimmylegs, I've never seen anything come up for them yet, but I keep checking.

I think I've a real issue with dropping down grades in my job. I've worked so hard to get to this level, that I would find it very hard to consider a drop in grade. I know I said above I'd consider it, but the more I think about it, I really don't want to....as it is, I have a contributary pension, options to take years career break if I have children/adopt, flexitime, really good leave. It would be so hard to give those things up.....my wages are not huge, it's the perks that keep me there really, that and the fact I REALLY like my boss and assistant. I've worked in so many jobs where there were bullies or bad tension, but there isin't for me in this job. There's a lot going for it.....so very hard to think of giving it up.....

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ooooooooooooo! I've just seen a vacancy at my grade in a place 30 mins from my home!! Downside is that it is for 1 year only, and my own job is permanant..... I think I'll apply for it anyway and see how it goes.............

With your last post Wonderful, i think you answered your own question.

_________________
Had ms for over 19 years now.

best of luck WW!