Life w/MS-homebound, untreatable symptoms,what to do?

[MostlyShell]

I have been away from you guys for...too long I think. I need a therapist, I realize this, but can't find one that takes my insurance and will talk to me on the phone. Funny but not in a way.

Okay, so my life in the past year have been my house burned Feb. of '09, lost my PCP of 7years, lost most of my support (family), bad news at repeat MRI, etc.etc.

In the meantime, my symptoms obviously got much worse and gained a few more symptoms. STRESS. Wouldn't be surprised if there were a few more lesions on this year's MRI. I avoid my docs now, and then feel guilty for it. But really, I don't purposely avoid them.  So here's part of the question.

I haven't been able to drive since November. Tried to drive twice since then but bad deal. Meclizine used to help but the symptoms are much worse than before. Like the lights mess with my eyes/brain, get that really sick drunk feeling, very nauseous, and at times, so sleepy, like I haven't slept in days and am dozing off at the wheel.

I pretty much know the first part of it is the vertigo due to lesion on vestibular nerve and have been in for testing on that but what about the sleepy thing? It scares me to death. Not to mention the vertigo. It happens now even while riding in the car.  Do any of you that experience this take anything different than that or over the counter meds?

Second question, (sorry so long), when someone or any of  you are "trapped" in the house for so long, what do you do with yourself? I mean, for awhile, I just did as normal and kind of enjoyed not having to be the main taxi for the 4 kids. But, now, I feel literally worthless. I mean, I still try to clean and have fun with the kids at home and get on the computer, but, I honestly, feel like crap, mentally. Pretty well always feel like crap physically. But used to always say I was putting on my "clown face" while putting on makeup cause it made me look like I feel well. But now it's like, what's the sense in it? I don't go anywhere.

And unfortunately it gets worse. My 13 year old I notice, seems to be doing like me and not caring about what she looks like etc. Even though I talk to her about it, its monkey see, monkey do. But, don't any of you ever feel like it's a chore to do that, and if you don't go anywhere than why do it?

My husband suggested getting a hobby.

I guess to sum it up, if there are any of you that are "homebound", what do you do to keep your mind uplifted and try to stay in positive mode?
Oh, and the untreatable part is not so much for the vertigo, but my feet and legs, ugh, they are driving me insane!

Looking for any answers, any are appreciated, and again,sorry for the length,
Lots of Hugs,
MostlyShell

[The_Lorelei]

I've been pretty much a shut in since last August.  I leave maybe once a week to do necessary shopping and if I'm well enough visit someone for an hour or two, providing that they drive cause I can't anymore.  

I've been afraid of losing cognitive function in addition to my physical impairments so what I've been doing a lot of is reading a variety of books, and playing the type of games that test your vocabulary or problem solving.  Scrabble type games and detective like games (who doesn't love Nancy Drew?).  The forgetting words part of this thing is driving me INSANE and I refuse to submit so I force myself to play those word games or riddle things.

My brother just got me a pet hamster (her name is Cheese but I call her Ham Lin).  It's not a total distraction but watching her run on her wheel, climb her bars, and eat things that she holds in her hands brings a smile to my face.

If my hands aren't feeling too weak or shaky, I try to draw and/or sculpt.  I'm not good at it but it helps to let our your feelings in a constructive way and creating gives a great deal of accomplishment.  Even if your penguin sculpture looks like a deformed giraffe.  : )  Who's to say that you didn't INTEND a deformed giraffe.  Artistic expression can look like ANYTHING!

[Ufrustrated2]

i pop meclizine all the time when these episodes happen. my local neuro paid zero attention to it when i told him of it. come to think of it, most people at the va pay zero attention to it.

for years i have had the "so fatigued i'm going to pass out at the wheel" syndrome. never knew what it was until the last few years after objective test results. incredibly frustrating at the very least. i hate the nausea. i mean i hate it. you can't do anything be lay around or mope around until it passes.

i still drive and just pull over or get home quick when this happens. i have no idea what sets it off. but it is there. i haven't really felt well in months. i started copaxone last night. i hope that doesn't mess with me.

i work with electronics and program micro-controllers part time and have a little office at home. so i get to do that when i'm feeling ok. i can't think straight when i'm feeling bad.  i like to read. but in the last years i find it a chore to read. takes soooo long to get through a page.

i like movies. i built a shelter for the local ferral cats here in our tiny neighbor hood. so i feed them and get them spayed/nuetered ehn i can catch them. i knoe they only drop by for food but i like them.

i paint and fix things up on my townhome. keeps me busy. my first home at 54 yo. i'll never get my $$$$ back out of it, but i like a clean nice place for a change. i might die tomorrow so who cares about it.

i'm lucky as i have some things to do at home and after 16 years in corp america, i like being at home. but i hate the weeks, months i'm feeling like crappola. ever reminding me i have an illness.

[Wobbly]

sorry to hear your going through such a rough time.. I'm housebound most of the time and it took me quite awhile to get used to it.  I worked outside of the home for many years.  I hope you can find some help with the MS Society...the might have someone that can talk with you.

take care and know we are here to chat
wobbly
dx

[HVAC]

Shell,
  Well at least you are reaching out that is a good sign. If you can no way get counseling for yourself sounds like your daughter may need some. Children of Chronically ill parents can have problems of there own.

Have you contacted your local MS Society. All of them our different due to the funds they can raise. Our local chapter would do a home visit for some one in your situation and try to come up with suggestions. Not monetary help so much as guidance.

Can you listen to books on tape or CD. Local libraries have these or you can get a medical doctor to say you have a physical condition keeping you from reading. The library of Congress has a free program.

  Someone told me you can't dwell on what you can't do. You have to find things you can do. I have a friend, well she was a college professor who is house bound in a wheel chair. She lives alone. She has tons of friends I think because she has interesting things to talk about. I have other friends who do not get out and I visit but there is nothing to talk about. It is harder to visit them.

  I like birds. I have a feeder. I watch them when I am bored. I love music. I know with vertigo its hard. I read or listen to books.
  I am not housebound now. I once tore the ligament at the base of my spine in a construction accident. I piled all the classics in literature next to me and read them one by one. I had surgery on my inner ear and had vertigo I got through that period with books. I like books because you can travel anywhere in any time. I also like history and travel on TV. I like to keep learning things.

There are many hobbies. Distraction and learning new things is important to MS.

Good luck,
Alex