Retired and unable to enjoy it! Are you driving?

ThePixie · Newbie Joined: Nov 02, 2006 Posts: 7 Location: Virginia

So after fighting SSA for two years I finally achieved the bliss of full disability. It is not enough to use for exotic travel, but it came with Medicare and at least my medical expenses have gone down.

Now how do you/we cope with empty nest syndrome, children who won't accept the diagnosis and that constant feeling of the need to do be doing something we can no longer do?

The hardest part has been giving up my freedom with the car. First I stopped driving at night, but after three years I realized that I was a danger to myself and others if I drove while fatigued. So... I depend on my partner for most driving needs and I just hate it.

I planned to reach 56 and be free as a bird, to be taking flying lessons, riding a horse and traveling. So how do you learn to value oneself for being not doing????

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Life is what happens while you are busy making other plans. .....
John Lennon

mick_b · Posted: Mon Nov 06, 2006 12:32 pm Post subject: life after MS

Hi Pixie:

I’ve asked myself similar questions. I don’t quite have an empty nest but at 16, my daughter isn’t around that much and my wife has gone back to work (which neither of us wanted). I manage to help out on the computer (paying bills and chasing down loose ends). This doesn’t come close to what I used to do.

Like you, I got full disability from ssdi. I guess we are making a contribution by supplying income to our partners but that doesn’t seem like much when compared to the plans we had before MS.

I don’t think there is much we can do about the fact that MS destroyed our plan. It seems unfair that we worked to get here just in time to get the rug pulled out. I have been trying to find peace with this. The only thing that seems to help me is to start with nothing and be glad I am alive, have a wife, and a daughter, and I’m warm etc., etc. etc. After a while the list seems pretty long and the fact that I can’t do the things that made me who I was is a little easier to bear.

I now have to create a new identity. One that doesn’t depend on things that MS can take away. I’m not there yet but I think it’s possible.

I hope this helps a little (it helped me.). I’ll keep you posted on my progress if you’d like.

Just remember you may find things in the ruins that have great value (but only if you look)

Mick

Melody · Posted: Mon Nov 06, 2006 1:28 pm Post subject:

Pixie I'm in my 40's and don't drive nor have I ever. My husband has MS and drives me around. I don't feel any less a person because I don't drive myself. As to the kids let them not accept it. It just means you haven't changed in their eyes. Isn't that good?????? Wink

As to doing the things you wanted and can't neither can we as our daughter ran off 3 years ago and left us with a 3 year old. So we are back to square one and having to make new friends to go places with as our old friends all have grown kids not a 6 year old. We are loving every minute of it he is our pride and joy and since he is growing up with MS he likes to make the OUCH sounds when his Poppy is doing his needles and loves to remind him to take his supplements. There is always road blocks in life you just need to find a way through them.
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John was diagnosed Jan 2005. On lipitor 20mg .On Copaxone since July 4,2005. Vitamin D3 2000iu-4000iu (depending on sunshine months)June 10 2005(RX: Very Happy

r. O'Connor) Omega 3 as well Turmeric since April 2005. Q10 60mg. 1500mg liquid Glucosamine Nov 2005.

JFH · Posted: Tue Nov 07, 2006 3:53 am Post subject:

This thread reminds me of a conversation I had with two women recently, neither had MS but both had a chronic condition. The women with Parkinson's disease was complaining a little about how she could no longer do her much loved hobby of caligraphy. The other, quick as a flash, said, "Yes, that's a pity. But you are such a good listener!"

Its challenging but not impossible to find other things we are good at. Smile

_________________
John
I am what I am

robbie · Posted: Tue Nov 07, 2006 10:05 am Post subject:

I use to think the future is not going to be so good and now the present is brutal and i don't even think about the future. It's not impossible to find other things and find the possitive and not the negative it's just really really hard and i think it takes a certain kind of person to allow this to be ok and live on and be happy, this is a little more than a road block, but some will get through it and some won't. I don't drive ,work,ect.ect and i do feel less of a person and don't feel like a contributing member of society. I am not meaning this to sound all negative it's just the way it is...

JFH · Posted: Tue Nov 07, 2006 3:51 pm Post subject:

ThePixie · Newbie Joined: Nov 02, 2006 Posts: 7 Location: Virginia

Thanks for all the interesting comments. A few months ago my personal (we are on a first name basis Smile

) physician asked if I was experiencing mood swings. I promptly replied no. About three months later I realized just how dramatic my mood swings were. Yugh. The laughing and desire to do impossible physical feats are fine, but I could live without the overwhelming sadness and tears. I know I should be using my walker every where I go, and yet I just want to believe that if I don't accept the problems, they will get better. After watching my father refuse to accept his physical disability (result of nasty motorcycle accident 60 years ago), my partner begged me to get a scooter. That has helped, but even then I find my patience lags, as I get tired. Since I have one child left at home who will graduate from HS in the spring, I guess I want to do way more than I am able. And then I seem to be very opposed to joining a MS group. Either they are too religious or too drug-oriented for my tastes. I suppose part of the problem is that my oldest child/the first born has a significant disability that has been a center of my life. I think I should be able to fix everything just like I fought to get his services for 25 years. Ah. I don't think there is enough meditation or Rx therapy to make me stop wishing. I am better than a month ago, but as my ability to walk has decreased my patience has also decreased. Wow... I am just blathering. Would that I could drink, I would have a nice scotch and water and go play in the rain. Since I can't I guess I will go back to my knitting for tots project and stop whining!
_________________
Life is what happens while you are busy making other plans. .....
John Lennon

pinda · Posted: Fri Nov 24, 2006 7:47 pm Post subject:

Hi everyone. Good to see some more voices in the golden group. I haven't looked for awhile. As you say, life does go on. Been down with a cold and some symtoms worse, time to look at the site and respond. I'm not dx with MS, neuro does say central nervous system problems. See him every 6 months and so far no major changes, just continual and slow. Has changed how, what and when I do things but many worse off than me. Husband retired now and we plan some big trips as we can afford so hope we can do sooner than later incase I have more mobility problems. Stick helps now and can deal with that. Even a wheel chair if needed when too exhausted. Has happend in an art gallery. All 3 of our boys live far away and 2 in other countries, the time to do is now Very Happy

I'm an artist and volunteer in an art gallery as a Docent taking school classes around and so far not too much of a problem when I use my stick. Have tripped when not using so now always take. Plans for a new show in the new year with 3 other artists and plans for many more. Life does give us some curves and sometimes we need to find other ways to do the things we love. I'm trying and hope the rest of you are too. Linda

Maeve · Posted: Mon Nov 10, 2008 12:00 pm Post subject: Hi

I am facing the same difficulty with my immediate family not accepting my symptoms or limitations, for me however, its a bit worse. I was forced to move in with my brother because my first try at disability fell through (surprise). I lost my apartment and my income. Since I am single, there is no one to help me with the money and my family pressures me constantly to get a job . . . Anyone know of a job that requires no standing, bending, lifting, or schedule? Fatigue is my biggest problem and keeping a schedule is almost impossible . . .

Any advice would be greatly appreciated!

L.