New, Scared, Learning

[bluemanda]

Hello-

I was confirmed with MS on April 1st 2010, some April Fool's huh. As I read up on MS and look back over the years, I probably have been having symptoms for at least five years.

I am 36 and I do not have children. Now I am not so sure having children is such a good idea, for me. See, I have a live in boyfriend who is barely survivin day to day at this time. He needs two new hips, replacing one artifical which has come loose, and one real one that is locking up. He has Ankylosing Spondylitis and is trying to get on SS. He has been denied a few times so we had to get him a lawyer. He can't hardly move, yet he tries to help by doing few household chores, even if one task takes him all day. And he tries to take care of me. He gives me foot rubs almost daily, and it sure does make me feel better.

Because I am the only one earning income I work 48-50 hrs a week. I also have a two hour round trip commute to work. Before learning of my MS I decided to go back to school. So after work I come home and go online to school. At the end of the week I am completely exhausted. Actually about two every afternoon, I struggle to make it through the rest of the day. I just want to crawl under my desk and sleep, or just sit. After two everything is double the effort to get things done.

When the weekend gets here I am completely exhausted, but I have to finish schoolwork/tests, do household chores, run errands. When all I want to do is sleep. I have started trying to listen to my body and take naps, at least on Saturday. It has helped.

Two years ago I moved to where I am to be with my boyfriend. This put me 100 miles from my family and friends. The support system I could really use right now. Before I lived next door to my parents and lots of family lived along the same street, or not far away.

This site has really helped me. I am learning a great deal about what I have, and what works for other people. While some things might not work for me, it can help give me ideas. This lets me know what I am going through, I am not alone.

I like to thank everyone who posts and the ones that keep this site going.

[nightflyer]

Just wanted to say welcome! I hope things get easier for you two! The right lawyer can work wonders!

Also, stating things as how they effect you in your life not just what the health problems are when filling out SSDI can make a big difference.

EX. My hips make it impossible to walk, walk while carrying anything...sitting at a desk or work station for more than 15 minutes at a time without severe pain and stiffness. Can't climb or descend stairs safely or in a timely manner.

Medication strong enough to dull pain causes thinking process to slow and causes decision making to be less then sound. etc., etc.

And I hope you continue to come to MSWorld! And most of all take care of YOU!!! Good luck!

[dalems]

bluemanda, it is funny you should bring up sleeping under your desk. My last year that I worked I did sleep under my desk. I made a make shift bed with some foam padding and blankets under my desk and would work 2-3 hours and than take a nap for an hour then work another hour or so. Me owning my own business is the only way this was possible.

With all of that being said I know how you feel. I was dx in 2001 and still worked 50+ hours a week till 2005. If you keep your focus and listen to your body you will be surprised how far you can go.

As far as you boyfriend waiting on SSDI I feel his pain also. I have not worked sense Aug 2006 and applied for SSDI 2 years ago. Was turned down 2 times and just had a hearing with an ALJ a little over two weeks ago. I am just praying that I am approved. I don't understand how the SSDI system can not give someone like your boyfriend benefits.

I send up a prayer right now for both you and your boyfriend.

[hunterd]

wow!!!!! i hope things get easier, real soon. welcome to msworld. it`s good to have you~!!! i look forward to seeing more of you.
good luck.

dave

[KoKo]

Hello Bluemanda

Welcome to MS World - nice to meet you!

You and your boyfriend have many challenges. It sounds like you support each other through these rough times. And now you have us here at MS World for support also

I'm sure there are times that you wish you were back in the neighborhood where so many of your family members live - maybe someday you both can go back?

I know most of us truly understand your exhaustion. MS can cause tremendous fatigue all by itself. And then add on all that you're trying to accomplish and whew, I'm pooped just thinking about it

We're so glad that this site is helpful to you, and you realize that you're not alone with this stuff

Best wishes to you and your boyfriend

Looking forward to having you around, when you get a little spare time

Take care,
KoKo

[cocogirl]

Welcome bluemanda!

Good thoughts and prayers for you and your boyfriend. I hope the SSDI gets settled soon. I don't know why he wouldn't qualify but I am not the one who decides.

You make me so ashamed of myself for ever having a pity party over my situation. You are to be commended for all you do.

[earnellzwifey]

Hello Bluemanda,

I would like to chime in with the others and say welcome to the MS family. But would like to add sorry that you have to be here.

I can't even begin to wrap my head around your battle right now. I was dx in July and have gone down hill rather fast lately but my husband is still able to work and I have 2 teenage kids that help a lot.

You show true strength and character and don't give up.

We are here when ever you need to vent, rant, rave, or just chat. Here's some love for you and your boyfriend. (((((HUGS)))))