Sunshine,l liked your letter good one...

cheapChic:

Sunshine,l liked your letter good one...

Thank you~

Dear Seaturtle, I was referring to your post of Sat 10/11 @ 8:30PM, when you said how bothersome it is when folks ask, "WHAT DO YOU DO?"  Yours in Him, Deb

Someone mentioned that it can make you feel old when you're young. I agree! I know there are a very few apartment complexes in some major cities that are intended to work primarily for younger people with disabilities as assisted living centers.  I wish there were more, or even better more buildings that were built for universal access that had a reasonably-priced store onsite with convenient public transportation so that it would be easy for everyone.  As it is, in the area where I live, if I didn't have relatives who could help when necessary, I'd have to move to the local retirement community, and I'm in my thirties!

Hi mimi just dropping a note for you a quick one that is, first you rock just saw your e-mail here you only can do what you can do for know which seems like your doing just fine which is cool,  me around your age in my thirthies not to long ago I mean I aint that old but one advice thing I will throw your direction take it one day at a time I already doing good at my end....:)

Thank you Cindy!  You are always such an encouragement!  Have a blessed New Year!

sunshinetreva:

I guess some people think that if they can't see the disability, then they don't full believe it exists.  But so many disabilities are internal and invisable.

I have MS, the severity of the symptoms come and go.  My balance and vision is mostly affected.  I have heard the same comment over the years, "You don't look sick".  It has taken me many years to learn not to get angry over what people say to me.  They don't understand. 

Karen K:

sunshinetreva:

I guess some people think that if they can't see the disability, then they don't full believe it exists.  But so many disabilities are internal and invisable.

 

I have MS, the severity of the symptoms come and go.  My balance and vision is mostly affected.  I have heard the same comment over the years, "You don't look sick".  It has taken me many years to learn not to get angry over what people say to me.  They don't understand. 

I also have MS, and get that too.  I get either neuropathy or exhaustion, and people don't get that the tired is not regular tired.  I get "you look fine!"  Well, thanks, but I don't feel that way.  Today.  The fact that it comes and goes also confuses people. 

Then there was the person who told me that I wouldn't have MS if I hadn't eaten McDonald's food (which, I eat about once a month anyway... )   Gee, thanks, if I had known, I would have avoided that.  Thanks for telling me something no doctor knows. 

KateHC:

I also have MS, and get that too.  I get either neuropathy or exhaustion, and people don't get that the tired is not regular tired.  I get "you look fine!"  Well, thanks, but I don't feel that way.  Today.  The fact that it comes and goes also confuses people. 

 

Then there was the person who told me that I wouldn't have MS if I hadn't eaten McDonald's food (which, I eat about once a month anyway... )   Gee, thanks, if I had known, I would have avoided that.  Thanks for telling me something no doctor knows. 

It's hard to explain to someone that they don't have and feel the same kind of tired you feel.  The one virtue I didn't receive much of was patience.  If having this disease has taught me anything it's to be more patient, with myself and with others.  When I was first diagnosed 20 years ago someone was telling me about someone they knew that was horribly crippled with MS, couldn't live on their own, blah,blah,blah.  I looked at my husband and burst into tears and ran away from the conversation.  Being patient with ignorance is hard but I have learned to try turn it into a conversation to inform someone about MS.  Like not eating McDonalds.  HA!  What a laugh.

Disability has certainly changed the whole course of our family's life.  My husband suffered severe brain injury five years ago, due to a botched surgery.  [yes, we tried to sue, and no, the lawyer screwed us over, waited until the deadline to file and refused to take the case after all]

I had to quit my part time job as an interior designer to become his fulltime caregiver.  I also had to take over everything, from finances to parenting our two [now] teens.  I bought a minivan [and paid it off two years early] because it is the only vehicle my husband can get into and out of.  We recently moved to a one-level home so he could move around better.  He uses a walker constantly now, although he didn't when he first came home.

After eight weeks in ICC and rehabilitation, the doctors all told me to put him in a nursing home.  He was 43 at the time.  I refused and took him home with us.  It is trying on some days, impossible on others, and okay most of the time. 

We've managed to move past the anger and the "why me?" stage and learned to accept that our future is totally different than when we started out.  Luckily, the disability payments and my Homecare payments are just enough to pay the bills and put a tiny bit away for emergencies and my daughter going to college in two or three years.

The best thing that has come out of this situation is empathy.  I sympathize with everyone here who has a disability or cares for someone disabled.  We didn't ask for this, nor do we deserve it.  But I feel that God only gives us what we can handle and somehow, we must try to find the silver lining.