Retired and unable to enjoy it! Are you driving?

[ThePixie]

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????

[/b]

[mick_b]

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]

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??????
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.

[JFH]

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.

[robbie]

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]

... it's just really really hard ...

You're not wrong robbie it's really really really hard.

[ThePixie]

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

[pinda]

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 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]

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.

[pinda]

Not sure if this is to do with MS, dx with central nervous system disorder possible MS. Had ultra sound and xray, waiting for CT or MRI. Having MRI of brain, again, in April ordered by my neurologist so family Dr. asking if neck area can be checked too. Xray showed some narrowing in neck area where nerves come from spine. She thinks this may explain some of my problems. Probably arthritis and from past car accident, 1988. Maybe not though. The swelling is above the clavicle, over the bone and some burning, problems lifting with that arm, and no problem moving the arm around. Do not think arthritis. Some new problems re hot and cold feelings too. Seem to be cold from the inside out and can not get warm for a long time, no matter how many clothes I have on. Than very hot and pealing off. Have had problems from start re hot and cold and shower cooler than before because feels hot but now warming the water up, do not feel it is too hot for most of my body. Still hot on back, back of arms and some other smaller areas. Thermostat is all off. Any one with similar problems? Linda

[Shayk]

Hi Linda

Glad to see that you are still checking in and that your docs are still checking things out.

I can't say that I've had the arm/shoulder problems that you're describing....I did have a frozen shoulder several years before I was diagnosed.

As far as my thermostat being off--yes, although I don't notice differences in hot/cold in different parts of my body--in my case I overheat way too easily. At the gym where I work out some have nicknamed me "the hurricane" because I have so many fans going to try and stay cool.

Can't remember if you've had your thyroid functioning checked, but if not, it might be worthwhile to ask your family doctor about it.

Hopefully some others will respond too so you can try to sort this out. Take care and keep us posted.
Sharon

[pinda]

Hi Carol. Had thyroid checked a few years back when all this stuff started to happen. Maybe I should again. Thanks for the idea, I'll talk to my family Dr.
Hope you are doing OK. Seems this Golden Years space is not a very busy one. I read the other forums from time to time to see what new info is going around. Seems to be some new things happening. Take care, Linda S.

[pinda]

Sorry Sharon, gave the wrong name in my last post. I should have checked before posting. Not very experienced in doing this. Linda S.

[Shayk]

Hi Linda

Not to worry. I think some of us at this golden stage (especially me) aren't all that IT savy.

Yes, it's so quiet here I frequently forget to scroll down and check to see if anyone has posted. I am doing "ok", I think, all things considered. I'm still working (fairly stressful environment), still exercising, and take an occasional trip. Last year the neuro said I was better than the year before so we'll see what he says this year.

I've been reading more about thryoid issues lately and I do think it wouldn't hurt to ask your GP about it again. From what I've read it's a tricky thing to get "right" and if it's not "right" can result in a lot of symptoms.

I hope you'll keep checking in and are able to get to the bottom of the symptoms you're experiencing. It can be so frustrating sometimes--is it this? that? or?

Do take care

Sharon

[lyndacarol]

Sharon (Shayk) is absolutuly right when she said,

I've been reading more about thryoid issues lately and I do think it wouldn't hurt to ask your GP about it again.

This is something I intend to do after reading the book The MS Solution by Kathryn R. Simpson.

Overall, the book has good ideas, especially about checking hormone and vitamin/mineral levels. I take exception to her statement on IGF-1 on pages 141-142.

Growth hormone production is highest at puberty and declines progressively after age 21. Made in your pituitary, it stimulates bone and organ growth. It causes increased production and release of a substance called insulin-like growth factor 1 (IGF-1), which travels to target tissues such as bones, organs, and muscles to trigger growth and repair. It has also been shown to promote growth of myelin and nerves.

I prefer to believe the research reported in

the recent Winter 08-09 issue of Momentum, publication of the NMSS (I am generally skeptical of this group and its projects), which addressed this idea with the following:

"The growth factor IGF-1 had shown some success in promoting myelin formation, so a Society-funded team led by Stephane Genoud, PhD (The Salk Institute, La Jolla, Calif.), injected it into mice with EAE. The injections actually worsened the disease. (Journal of Neuroimmunology 2005; 168:40-5) Such failures are important to pinpoint before they affect people with MS in clinical trials."

Here is the abstract of the work mentioned:

1: J Neuroimmunol. 2005 Nov;168(1-2):40-5. Epub 2005 Aug 24. Links
Targeted expression of IGF-1 in the central nervous system fails to protect mice from experimental autoimmune encephalomyelitis.Genoud S, Maricic I, Kumar V, Gage FH.
Laboratory of Genetics, The Salk Institute, 10010 N Torrey Pines Rd, La Jolla, CA 92037, USA.

Insulin-like growth factor 1 (IGF-1) has been identified as a critical molecule in the induction of myelination in the central nervous system (CNS). Systemic injection of IGF-1 has been shown to have a varied and transiently protective effect on the clinical course of experimental autoimmune encephalomyelitis (EAE). Since systemic IGF-1 can also modulate peripheral immune lymphocytes, we examined whether a sustained and local delivery of IGF-1 into the spinal cord would have any influence on the chronic course of EAE in C57/BL6 mice. The capability of adeno-associated virus (AAV) to be retrogradely transported efficiently from muscle to motor neurons of the spinal cord was used to overcome the difficulty routinely encountered when attempting chronic delivery of molecules into the CNS. We demonstrate that AAV-mediated delivery of IGF-1 in CNS did not have any beneficial effect on the clinical course of EAE. Injection of AAV-IGF1 after induction of the disease worsened the clinical symptoms. Furthermore, CNS expression of IGF-1 did not affect the pathogenic anti-MOG T cell response, as examined by proliferation and cytokine secretion. Thus, enhanced expression of IGF-1 in the CNS during inflammation does not have a significant effect on myelination. These data have important implications for the potential use of IGF-1 in the treatment of multiple sclerosis.

PMID: 16120466 [PubMed - indexed for MEDLINE

It's another one of those areas that deserves more examination!