When is enough, enough?

By Julie Monday, January 25, 2010

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A couple of years I vowed that I would work "until I dropped." I like my job for a lot of reasons: it gives me a creative and intellectual outlet, provides an income, and daily social contact. Along the way, it also can be fun.

Lately, it's been a bit stressful. Maybe more than a bit. What used to come easily to me is now pretty challenging.

I am easily distracted and occasionally confused. I have a hard time processing concepts or problems to a logical conclusion. My ability to speak my thoughts clearly is diminished. Frankly, I feel brain damaged!

Add onto that the typical MS fatigue and other assorted minor physical issues and I'm wondering if I should finally quit.

When is enough, enough?

On this forum there are people who can't walk, have difficulty using their arms, don't drive anymore, perhaps need help feeding themselves. So far, my MS has run a pretty mild course. I don't look as though anything is wrong with me so I am wondering if I'm just a weenie (and please do let me know) or if others face the same thing.

I'm concerned that if I leave my job - which I only work at part -time now since fatigue makes a full time job impossible - I might never be able to work again. My ability to learn new concepts is slow (I think "slow" is the word a couple of my colleagues have used for me too).

But my typical week is work then hit the couch, work then hit the couch. Most days it takes everything I have to put in a 6-hr day - with a one-hour rest time in the middle.

And if I think I may not be able to work again, should I apply for disability? Am I really disabled? I certainly don't look it. And I do have good days and good weeks where the fog clears and I feel more on top of things.

Is this a matter of ‘If I have to ask if I'm disabled, then I'm clearly not'?

Advice, my friends?

How much to tell...

Comments (7) | Add comment

suvivrgrl

1/25/10 1:26pm

Hi Julie. Word for word, you just explained what happened to me back in 2007. The only difference is my then employer didn't recognize my impairments as
"MS" related and proceeded to hold it against me until they forced me out. I went as far as to file a discrimination charge against them (without an attorney, big mistake) and it ended with me accepting some "hush money" and resigning.

This employer did not want to accomodate me after almost 10 years of service so I had no choice.

Julie, don't let this happen to you. Ultimately. I filed for disability and was granted it in Feb 2008 and in some ways, I regret it. I am in the same position as you with my impairments are invisable. In fact, the same impairments you are now experiencing now. The "but you don't look sick" stigma is in full affect. I will be 44 this February and still feel like I should be in the workforce. However, everytime I think I can, I get anxiety when I think about, "what will they think or do if I call in sick too soon, or what will happen if I have one of my temporary brain malfunctions and can't grasp what they are asking me to do or forget something they told me to do." It's not easy.....

I say try to stick it out as long as you possibly can and remain active. I also think that if you need to be on disability, then do it! It's your right...I wish you the best :-)

Laura

1/25/10 7:07pm

I can relate to you. I am told by others that I don't "look" sick, whatever that means! I live in constant pain and have trouble walking at times. When I'm tired my speech slurrs and I forget words which my co-workers found amusing. I am an optician and working with an "eye" doctor, we would see a number of people with ms but he still could not relate to my difficulties even though I was exceptional in my job. I would get scolded if I was even 5 minutes late due to leg issues or pain. So a couple months ago I quit my job because I was tired of being made to feel inadequate. But I am not ready to give up on a career I love in spite of my challenges, so with my husband cheering me on...(he's my number one fan!), I am in the process of opening up my on optical shop. Sometimes you need to be creative with maintaining your independance, activity, and social interactions. Don't give up! Pain is just weakness leaving the body. We need to stay strong. Take care.

tellnhelen

1/26/10 9:43am

Hello Julie

I empathize with your situation. As much as I hated it I had to decide if I could continue work at the same pace (not likely) or perhaps find a less taxing (in all areas) outlet for my career ambitions. I was afraid that disability retirement would force me to work "stringing beads". I retired on disability at a time when I did not look sick..in fact I looked real good. I retired because, like you, I could not maintain work my level at that time. I retired because I still could carry a "professional presentation" and get another job. I retired because I had to anticipate my future medical/health issues. (If you are already struggling, do you think it will get better?) Perhaps, but at what costs to you? After retirement I did find a position that fit my physical and professional needs, although at a less demanding level. I feel satisfied because I can be successful at work without the stress and struggle of full time work. Also my reduced work schedule and responsibilities allowed me to work on managing my MS. Of course, this is what happened to me and is not necessarily your case. The bottom line is that only you can decide. Good Luck

Vicki, Health Guide

1/26/10 8:01pm

Hi Julie,

Whether you "look good" or not often has little to do with whether you are good or not. Listen to your description of your week — work and couch, work and couch. Are you a weenie? No, you are a person with MS. I am not a weenie, I am a wimp. Pick your word as you sink into the couch.

Pick another word when you have a creative success; another for a fun social outing; another when depositing your check. See? You are many things, many people, but you have MS, and you do not want MS to dominate your life. Try no to let yourself become overwhelmed.

Listen to suvivrgrl who regrets succumbing to disability; Laura who is starting her own business that, I assume, she can run under her own terms hopefully; tellnhelen who reminds you if you are struggling now, it won't get better.

Maybe you need a temporary break to see how you respond. Starting your own business or freelancing takes extra work in the beginning, but social networks soften that blow. Being on disability allows you to work, but on a imited basis. You have options. Explore them before making a decision, but know there is more to your life than work and couch. If you make the wrong decision for you, you can make another decision.

Good luck. I'll be watching.

L-bug

1/28/10 9:29am

Hey Julie, I'm right there with you. I still work full time, but its hard. I have been thinking the same things you are. I want to work, but this is just getting to hard. I wish there was an easy answer on when it is time to call enough. Good Luck

ren401968

4/ 3/10 9:51am

I'm not yet dx'ed, but I understand your plight a little about work.. I have the fatigue and brain fog and It takes an effort to try and understand or process something. I'm getting a promotion which makes my stress worse 'cause I need to really try and focus and do good. Sometimes when I can't think or have a brain fart, I feel stupid or slow but it hasn't gotten so bad I need to slow down yet. Being in limbo and not having a diagnosis is so hard because I don't think anyone will take any of my symptoms seriously until I get one.

Julie

4/ 3/10 11:40am

Thought I'd provide an update on what's happening with me and my job now, three months later. I haven't quit -- just really, really don't want to -- and have decided to keep at this day to day.

It hasn't gotten easier. In fact, I'm involved in a complex project at work where I lead a team and, oh my gosh!, do they ever think I'm stupid! I am forgetful, can't get words out of my mouth and have had difficulties organizing and leading. I went to see my neuropsychologist to get some strategies for this and that actually helped. He told me that I can't organize conceptually anymore and that diagramming things out will help me in my work. I have found that works very well for me.

He can't help me with the verbal issue but his advice was to just take my time, let the people wait, take a couple of breaths and give myself a chance to find the right word. He said I will still struggle -- just a fact of MS -- but I need to work on not stressing so much over not being able to be as verbal as I'd like.

Easier said than done.

Anyway, I really appreciate all the comments and advice you have provided to me on this topic. It means a lot to read your experiences with this.

When is enough, enough?

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