Please, advice . . .

A forum to talk about the general challenges of daily life with MS.
Post Reply
User avatar
Maeve
Getting to Know You...
Posts: 13
Joined: Tue Apr 01, 2008 2:00 pm
Location: Tucson, AZ

Please, advice . . .

Post by Maeve »

Hi all,

I hate this because I feel like I'm whining but . . .

A brief background - diagnosed a year ago, was able to continue working for about six months, then had to take disability . . . the short term disability ended and they denied my long term so I was forced to move in with my brother . . .

My brother and his girl know of the MS, but unfortunately?, I have all the invisible symptoms and few of the visible . . . my mobility is good, though my legs are weak, but I get all the spasms, pains, fatigue, numbness, tingling etc. . . . by far my biggest issue is lack of energy and fatigue, thus the disability . . .

Though they know of my MS, they think that I am either exaggerating my symptoms or making them up altogether . . . I am constantly being pushed to find a job, though I know that I can't work a 40 hour week . . .they even talk of moving without me . . . his girl pushes hard to get me out of the house . . . I'm single and my kids are across the country and about as broke as I am . . .

So what do I do? I'm so stressed out over this, and stress just makes me feel even worse physically . . . Is it possible to find a job that requires no standing, bending, lifting, multi-tasking, or schedule? The fatigue really kills my attendence . . .

All advice is gratefully appreciated . . .

L.
Lyon
Family Elder
Posts: 6071
Joined: Wed May 03, 2006 2:00 pm
Contact:

Re: Please, advice . . .

Post by Lyon »

.
Last edited by Lyon on Sun Nov 27, 2011 11:07 am, edited 1 time in total.
User avatar
lyndacarol
Family Elder
Posts: 3394
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Suggestions for Maeve

Post by lyndacarol »

Maeve--you wrote:
All advice is gratefully appreciated . . .
and so I feel free to offer my thoughts. I do not have "the" answers, only some thoughts.

Your issues seem to fall into distinct areas--medical, living arrangements, and work (job).

You have the diagnosis; could you discuss your "invisible," but troubling symptoms with the diagnosing physician? Maybe there is some treatment to try.

Is there anywhere else you could live? Even with friends? Is there any church/minister/social agency you could discuss this with?

Are there any employment agencies near you that could help? Any MS Society office that could help? How about a government job--they are often desk jobs? I heard a line on TV the other day which said that in this economy jobs were still to be found in government, education, and healthcare. Is there a hospital near you? They have many desk jobs like admissions and records and billing, in addition to those very physical ones working with patients.

Maybe again, a minister or friend or neighbor could brainstorm with you and offer ideas. Good luck to you. Please let us know how it goes; folks here do care; we do not consider you to be "whining".
User avatar
Maeve
Getting to Know You...
Posts: 13
Joined: Tue Apr 01, 2008 2:00 pm
Location: Tucson, AZ

Post by Maeve »

You guys are the best! Thank you sooo much . . .

I hadn't thought about the church option as my beliefs don't require a church, but I do happen to have a few friends that may be willing to sit down with me and see if we can brainstorm a few ideas . . .

I've sent the link to this site to my family. I decided on an email, since we've already discussed this to death, and I'm hoping if they care enough to look around here that someone else's story may help them understand what I'm trying to cope with . . .

LyndaCarol you gave me several ideas when you suggested the colleges . . . I'm sure I could act as a tutor . . . and I can lowball anyone's rate at this point :P I don't even mind watching a couple of kids after school and throwing tutoring in the mix . . . my brain is finally moving in the right directions. Thanks for the much needed nudge . . .

If I can get an income going, I'm already at the top of the list through one of my Drs for private subsidized housing, so its just a matter of a steady income, any income at this point . . .

Lyon - I had a 180 day appeal period on that disability, I think its nearly up , I'll have to pull out the paperwork . . . is it possible to reopen that after the fact? I know absolutely nothing about these things . . . I was thrust into this all so suddenly. Until the past few years I was an extremely active person . . . this has all been just a terrible nightmare so far . . .

Again, the advice and ideas are soooo appreciated . . . thank you
User avatar
patientx
Family Elder
Posts: 1072
Joined: Wed Sep 10, 2008 2:00 pm

Post by patientx »

L,

I noticed that you've listed one of your interests as computers. This may or may not be practical, but maybe you could consider taking some classes in programming, web development or something along those lines. Then maybe you could work from home, coding or doing web pages for people or the like. You could work on your own schedule this way. It seems nowadays a lot of times all you need is a PC and internet connection. Also, my brother does software development and is pretty computer-savvy, and his friends and neighbors are always dropping off their computers to fix one thing or another.

I'm considering doing something similar myself, if the day comes I can no longer go to the office everyday.
User avatar
Maeve
Getting to Know You...
Posts: 13
Joined: Tue Apr 01, 2008 2:00 pm
Location: Tucson, AZ

Post by Maeve »

Patientx - yes, actually I have a Voc. Rehab counselor trying as we speak to get me into some local classes on web construction for free . . . its looking good but I won't be able to start them until after the new year . . .

Actually, this was the very first thing I thought of since a good portion of the businesses in this area don't have websites yet . .. I'm thinking I may even be able to teach myself with a decent book on the subject . . . My last job was Tech Support for Intuit, so I have a bit of advanced computer experience . . .

Thanks for the brainstorm and caring enough to answer

L.
User avatar
Sharon
Family Elder
Posts: 1283
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado
Contact:

Post by Sharon »

Maeve -

Last night a Denver news channel ran a story about people working from home. It might be of interest to you - here is the link
http://www.9news.com/news/article.aspx ... catid=339

Be patient - it takes awhile for the link to load on your computer

Take care
Sharon
User avatar
Maeve
Getting to Know You...
Posts: 13
Joined: Tue Apr 01, 2008 2:00 pm
Location: Tucson, AZ

Post by Maeve »

Thank you Sharon! I will definitely check it out . . . you guys are all so wonderful! I'm glad I found this site, I feel blessed to get so much support here from you all . . .

L.
she-aardvark
Getting to Know You...
Posts: 15
Joined: Sat Jan 31, 2009 3:00 pm
Contact:

Post by she-aardvark »

Yes the invisible stuff is the worst and while we don't all want endless sympathy we do want understanding. I too look likle a "normal" person to the untrained eye !

Seems to me your brother's girlfriend wants you out of the house but is that just day time or do they want money? If not the latter then get out and do some charity work for 1 or 2 hours a day and give them some space.

I spent my entire career in IT amd I wouldn't necessarily recommend a computer class but probably the worst is to be put under pressure to hit deadlines when some days are good and some bad so voluntary works.

Consider becoming a VA (virtual assistant) where you offer typing, spredsheets, desk top publishing etc for businesses (they don't even need to be local). If you want to consider this I can recommend somebody who helps set up VA sites for their customers.

Building web sites : it's easy to do a quick and nasty one but the world is full of people who can do great things. Maybe you should set yourself up as a web designer and just go to businesses and ask what they want. Then go onto elance.com or reantacoder.com and put up the specification and ask for bids. You'll be amazed how cheap you can get them done as somebody realy skilled in India or Estern Europe usually offers a good price. Offer the first one at cost price to get a track record. Then you can turn up at the customer as a hero. ( you would need to know basic stuff like buying a domain name

You can offer yourself as an author to people wanting articles written on elance . Not great money but it's a start (usually $10 for 400 words) There are software pachages that do all th research you need for the articles.

Finally consider Internet marketing. I can let you know wherer to look for this if you let me know.
she-aardvark
Getting to Know You...
Posts: 15
Joined: Sat Jan 31, 2009 3:00 pm
Contact:

Post by she-aardvark »

just saw this on another forum and it's so true and valuable for your situation.
enjoy
http://ms-people.com/forum/index.php?showtopic=70
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Daily Life”