Almost a year of MS...

[Rosemary7]

My partner and I making it through, it's been rough. We have 3 kids a mortgage and a lot of responsibility. My partner has the MS diagnosis. Last August we did 4 days of IV treatments to shorten the attack. (After 3 days of the IV treatments I finally was able to talk to his Doctor now ex doctor, and get the official diagnosis) Then we got him started on Copaxon which seems to help.

He has been able to continue at work. Which is amazing, since his job provides our insurance, retirement, and is the larger paycheck. But he is completely fatigued most days he works, comes home and crawls into bed. Where I bring him dinner and he crashes out. Weekend are usually low key and restful as well. This is a complete change from pre MS life.

He was up late up early,and non-stop on the go. We have been advised by his union lawyer not to disclose his diagnosis at work. So we now live with this big secret. A few close friends know, and our close family, but the circle of trust is pretty small. We have done the whole 30 diet, and really like it I just don't have enough time to be faithful to cooking that clean, working, running kids to sports, yard work, laundry etc.

He takes vitamin B shots once a week and a bunch of supplements daily, we have a naturopathic doctor we really like. I'm just wondering if there are books or resources that others have found helpful as MS has moved in and taken over their lives?

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[jreagan70]

Hi Rosemary:

We have been advised by his union lawyer not to disclose his diagnosis at work.

That's excellent advice. Anything your partner says about his health at work can and will be used against him. Never, never, never, never, never disclose MS to anyone at work.

If your partner and you haven't done it already, you should educate yourselves about the provisions of the Family and Medical Leave Act (www.dol.gov/whd/fmla). FMLA allows people with medical conditions (and under other circumstances) who meet certain requirements to take up to 12 weeks of unpaid leave without losing their job.

The leave can be taken incrementally to allow time for medical visits. If longer leaves are needed, it isn't guaranteed that the person will be able to return to the same job, but the person can't be fired for taking medical time off and at least has a job to go back to.

If the the time comes that your partner needs to start missing work because he has a relapse or needs to go to doctor visits or physical therapy or get some other kind of medical treatment, and he qualifies for FMLA leave, he should go to his Human Resources department and start the application process immediately (he'll need his doctor to fill out some paperwork). Under FMLA, he still doesn't have to disclose the nature of the condition that qualifies him for leave.

Some people might advise that he apply for FMLA now, before he needs it so it's ready to go. That's a judgement call your partner will have to make.

Even if the time comes that your partner begins to have difficulty performing some of his job functions and needs to ask for reasonable accommodations under the Americans with Disabilities Act, he still doesn't have to disclose the nature of the condition that made him ask for accommodations.

For some people, the effects of MS become so obvious that it's actually more awkward not to tell. But that's also a judgement call. Some people with MS had a good experience when they disclosed their MS at work. But from what I've been reading on MS message boards over many years, most people don't.

Unless and until your partner gets into that situation, the overwhelming consensus is to not tell. It's really nobody else's business.

So we now live with this big secret.

It puts a lot of unneeded pressure on your partner and you to think of MS as a "big secret." The undercurrent to that is that you feel you have some obligation to tell. You don't.

MS isn't a secret. It's just nobody else's business. Share with who you trust and want to share with. For everyone else, it's none of their business.

The more people you tell, the less control you have of where your private information goes. The more people you tell, you'll be exposed to people who don't care and don't understand. And then it will only frustrate you and deplete your valuable energy when you become misled into thinking you're somehow responsible for managing those people, too. Far better to just leave them out of it from the beginning.

But he is completely fatigued most days he works

Is he taking one of the anti-fatigue medications?

I'm just wondering if there are books or resources that others have found helpful as MS has moved in and taken over their lives?

The website of the National Multiple Sclerosis Society (nmss.org) has a wealth of technical information. It will benefit both your partner and you to start reading through it a bit at a time so you begin to learn about MS as reasonably factually correctly as you can.

As you acquire reliable information, you can start to read other authority sites about MS and it will begin to make more sense. And if you start off with reliable scientific information early, you won't get misled by misinformation you read online, misunderstandings of what his doctors have said, or more misinformation well-meaning friends and relatives picked up somewhere and want to pass on to you. You can be more proactive and confident about your choices.

The NMSS site also has information about how to help your children as they adjust to the way their dad's condition is affecting your family. So that's a really good place to start.

[Kimba22]

Hi Rosemary,

Welcome to MSWorld! Sorry to hear your partner has MS, and how much his fatigue is impacting your lives.

It takes awhile to learn about MS, and it's an ongoing process. The National MS Society is an invaluable resource. MS for Dummies is a book that many recommend, especially for starters. You can also find a wealth of information at MSWorld.

Here are a few links to get you started:

http://www.nationalmssociety.org/Sym...mptoms/Fatigue

http://www.nationalmssociety.org/Res...-Keep-S-myelin

http://msworld.org/creative-center/c.../book-reviews/

Best wishes,