Frustrated

[Michele48]

I am at wits ends. I am not sure how much more I can take. Have worked so hard to not let this disease define who I am, but feel like I am losing the battle. both mentally and physically. I was diagnosed over a year ago. yet I still trouble accepting this disease. I am not the Woman, Wife or Mother I used to be. Makes me so sad. One doctor wants me to see an Occupational Therapist to help with the cognitive issues. Both want me to exercise, they also want me to see a Therapist who deals with disease management. When? I have used almost all my vacation time because of various doctor visits. I am so fatigued right now..i almost feel asleep at work. Any suggestions would be greatly appreciated. I just want to cry.

[mjan]

Oh dear (((( MICHELLE )))) I am sorry for all you are going through. I do remember those "daze"...

BTW there are some supplements many of us have taken for fatigue. Find it on the Tara's nutritional site. It really helps. And there is RX Provigel too.. helps.

You need to sit your family down, ALL of them and make a list of the things that need to get done, prioritize them and see who can do what. I would also ask extended family and friends, church members to help. Trust me, our pride often stops us from asking for what we need.

This is a BIG lesson in learning to ask for what you need. And your hubby et al, need to learn about the fatigue.

I didn't exercize either,, but. finally got on my gazelle and did 2 mins, then 4 mins. I can only do 10 mins now, but it helps stretch my tight muscles.

There is proof that exercise improves the situation with our brains and that the brain CAN regenerate when they thought it could not.

I met a guy who's MS was soo bad he could hardly sit up, or hold a utensil to eat. He could only take a few steps. He started to exercise, a little.. a little more, until he could finally walk again AND then RUN!!!

Now he is a triathalon runner!!! I could not believe it.

So any movement helps, but get the help for your fatigue first. Those 2 supplements are worth every penny. Or talk to your doc about Provigel.

There are some brain teasers you can try for cognitive issues. READ, do puzzles USE your brain as a muscle and it does improve..some.. or a lot!

Talking to a therapist is wonderful, but feeling less tired, getting help so just thinking about ALL you have to do drains the little energy you have. LEARN to conserve your energy by PACING yourself, asking for help and letting things go.. HUG you kids instead!!

Keep us posted as to how you are doing.. we care and will walk this journey along side of you..

Warmly, Jan

[MSer102]

If you've been using your vacation time for doctor visits and its almost used up then it sounds like its time for you to apply for FMLA leave. The time off isn't paid but you get guaranteed time off and your job is protected.

Then as soon as you can I think its a good idea to start seeing the therapist. It sounds like a lot of what's bothering you is coming from how you think about things. Its not that your ideas are bad in themselves but how you think things should be doesn't apply to your life anymore. It sounds like holding on to ideas that don't apply anymore is pulling you under. So you can keep holding on to old ideas and go down with the ship or let go of them and get into the life boat. The good news is that you can change how you think if you really want to and a therapist can show you how. It sounds like maybe your still in a bit of shock and could use some help in moving out of it.

MS doesn't define who you are. I think its how you respond to MS that defines who you are. You can't control MS but you absolutely can control how you respond.

It took me about two years to get all this figured out. I was a little slow on the uptake. But I finally realized that my biggest problem wasn't MS it was me and how I was thinking. My life got a whole lot easier after I straightened myself out.

Things aren't magically going to happen by themselves you know. So there are some things your going to have to do to help yourself. Getting on FMLA sounds like the first thing you need to do to get past your objections about why you can't get help. Then the therapist. And you can start doing some homework about how to help with the fatigue. Are you taking a fatigue medicine? If not you can talk to your doctor about starting one. If your taking one you can talk to your doctor about changing to a different one.

And another thing you can do to overcome those feelings of helplessness is to make a commitment to doing things to support your overall health. That means eating healthy and starting to get some exercise. There's some research that shows that exercise can help with MS fatigue. And make sure your getting enough sleep. Taking care of your health can go a long way in making yourself feel better. Then you'll be better set up to deal with the harder issues.

My best wishes are with you and I hop you get started on this new part of your journey right away.

[Thinkimjob]

Yeah, no, that sucks, first bit of advice, 15 years in, have a good cry, as often as you like.

Then you have to "suck it up". I was soooo annoyed when people told me that, but what else can you do?

It's bad, but it's not that bad. Well, it is, but Good years ahead, any luck.

[Cat Mom]

MS doesn't define who you are. I think its how you respond to MS that defines who you are. You can't control MS but you absolutely can control how you respond.

It took me about two years to get all this figured out. I was a little slow on the uptake. But I finally realized that my biggest problem wasn't MS it was me and how I was thinking. My life got a whole lot easier after I straightened myself out.)

I wish I'd seen this piece of advice when first dx in 2005! Amazing how a few simple words can generally sum it all up. Thanks for this!

Jen

[Michele48]

Thank you!

Thank you all for your support. It is comforting to know that I am not alone. You are so right..I am trying to do everything I used to, I am so determined to do it myself. So hard for me to ask for help. Have been thinking about FMLA or short term disability. I work in Healthcare billing. I really need to be honest with myself..Is this job the best thing for me? It is extremely stressful, which makes all my symptoms worse. I have many decisions to make in my life. Thank you for all your suggestions, support and kind words. I need to have a sit-down with my family, friends and employer. Again, thank you!

[mjan]

Michelle, there is such a thing as "intermittent FMLA" which is what I used. THat means you can use a day here or there as you need it, and they cannot fire you for missing too much work =occurances.

You need to get the form from HR and fill your part, then the doc every year I believe.

See if that works for you~

Hugs, Jan