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-   -   How do you do this long term? (https://www.neurotalk.org/multiple-sclerosis/169990-term.html)

Debbie D 05-18-2012 02:12 PM

I PMd you...:grouphug::grouphug:

Kitty 05-18-2012 02:14 PM

I've discovered that even the people who seemingly "have it all" really don't.

The ones who seem to stay amazingly young looking usually spend an incredible amount of time focused on just that......and miss out on the truly wonderful moments in life. Who wants to spend 50% of their life trying to halt time....and the other 50% trying to keep up with folks who are much younger and faster?! :rolleyes:

I think most everyone has their challenges even if it doesn't appear so at first glance. Heck, even I don't appear to have problems immediately....but if you look long enough you'll see that I do.

For me, the solution is to be happy in the moment. Because this exact moment is really all we have. And if this is "as good as it gets" then I'm okay with that. ;)

Mariel 05-18-2012 03:42 PM

Kitty, I'm not okay with my present moment. I guess Dejibo isn't. I often laugh at that very thing, the Buddhist concept of being in the moment. If the moment isn't good, it doesn't work. I do have faith that we will be translated into a better "moment", however.

It might be different if I could take mood-altering drugs or even "drink". I can't alter how I feel with any kind of substance, although sometimes I feel better after eating. I can't eat enough to feel really well, however, without getting sick. Metabolism is just not a happy camper. So...moments are not so good. But then, I do have happy times now and again. I sure wish I could take a drug, though. Or even a glass of wine, to alter my perception.

Dejibo 05-18-2012 08:42 PM

Bingo! 99% of the time I can talk myself out of my corner. busy myself with things, and stuff, or activities. I am ...as they say...in the meantime. That not here, and not there moment in life when you are not what you were, and have not yet arrived at who you are going to be. I am still in transition and trying to figure out Who and what I shall become. I am straining against my restraints and new rules. I am pushing back against this dread disease. And the disease is pushing back against me. I am in a tug of war and so far, there are no winners.

yes, it may have to do with the approaching 50th b/d. not menopause as I did that years ago with a surgical pause. I have devoted my whole life in service to others, and this is supposed to be MY time! instead I now give it in service of this stupid disease. I couldnt find the energy to take a walk today because I was so constipated my stomach swollen and bulging I just couldnt get past the tummy ache. I take enough meds that I am surprised my bowels ever work. it was gorgeous day and I sat inside waiting for things to move along.

I am being held prisoner by this, and as an inmate I am trying to find ways to entertain myself, but no one left behind any toys! Im bored with TV. I cant read with bad vision. I cant drive, I go more blind with the heat when I walk...I could go on and on.

So, for now. im unhappy. Perhaps tomorrow will bring a ray of hope. :(

lefthanded 05-19-2012 01:44 PM

I held on just until my 50th year . . . (I am now 60.) Then ulcerative colitis, Crohn's and peripheral neuropathy (which turned out to be transverse myelitis/maybe MS) set in. I hit my peak at 43-45, having worked hard to get myself in my best physical shape ever, eating a 75% raw and almost vegetarian lifestyle, and working out at least 5 days a week. I had just rejoined a gym when my colitis began, giving me symptoms that felt like a hip issue and making exercise increasingly painful. It was a fast-developing diseased colon, not a hip.

Did you know your colon holds your immune system in balance? Remove it and see what hits you.

Dej . . . I totally get where you are. My second grandchild will be here in 2 weeks, I have a great partner, an ok kitty cat, and a yard we have turned into a birder's sanctuary, even though it is tiny. But waking each morning isn't that great "new day" experience for me most mornings, as I awaken in pain and unable to think. I used to amaze my partner at how I would bound out of bed, into the shower and be bright-eyed first thing every morning. She is lucky now if there aren't daggers in my first eye contact with her . . . :(

I just saw my neuro for my bi-annual visit, and he confirmed the ankle and feet swelling is something he sees all the time, and that there is probably nothing I can do for it. I repeat my MRI's this fall, and will have to wait to see if my disease is progressing or if the Imuran I am on is keeping it in check. None of the pain or spasm meds work for me, mostly due to terrible side effects with my Crohn's.

I have spent over $400 on new shoes recently trying to find something that fits, accommodates swelling, and that i can actually walk in. Hiking 8-10 miles in one day used to be my recreation of choice . . . and now a quick shopping trip makes me hobble.

What is the worst, though, is that my partner has watched her life disappear right along with mine. Even if we won a huge lottery, and our financial issues evaporated overnight, we would still be terribly limited in what we could do. (Although, I would love to design the perfect home for someone with my issues . . . my bathroom would be out-of-this-world!)

So when I read a post like yours, my heart immediately opens up and hugs you. The other day I just wanted to crawl into my partner's arms and let her just hold me . . . but guess what? My body can not handle that for very long. If anything sucks worse than that, I haven't found it yet!

Sending hugs, love, hope for some moments of pure relief, pleasure, pain-free life. (((Dej)))

Dejibo 05-20-2012 06:57 AM

I think I am figuring some things out.

1. if my DH were to go away or something were to happen our marriage, as much as I love this dear man, i would NEVER have another man in my life. I think I would troll the gay bars till I found a good woman. Women tend to take better care of each other, and meet their emotional level needs better than woman/man couple in my not so humble opinion. I feel like I am ALWAYS compromising and waiting for it to be MY turn! I have been married 25 years this year, and while he is an amazing husband, he is making me crazy! He retired and is ALWAYS under my feet. I have no privacy or alone time. and when he is near I am always up and having to perform. im tired!

2. I would get a dog. We lost our dear MaggieMoon about 5 years ago. While my cats are wonderful and I have poured alot of love into them, I miss the dog. She was a reason to force me out for a walk.

3. I already eat great, and exercise every chance I get, BUT I would take a Karate class or swim lessons at the Y, or bowling! I love bowling and cant get anyone to go with me. BINGO! i love bingo but no one wants to go. I think one of my problems is that I am lonely. I had amazing friends, but like any other friends when someone has a long term illness, they tend to wander off. Some faster than others, but in the end 99% of them go. The ones that stay have their own lives to lead and cannot fill the hole the others left.

4. Even tho I really struggle with my family, I would take more time to go visit. NOT stay in their house, but drop in on a vacation to visit.

5. I would MOVE! I HATE HATE HATE this neighborhood! We moved into a wonderful house, that sits lake side, and we thought WOW! we have made it! This is how the other half lives. These folks are CRAZY! They bicker, argue, gossip, backbite, and nit pick till you want to scream UNCLE! I have one of them on a special ring on my phone, so I know without looking its her calling to tell me how back her life is. PLEASE go sit in your winter homes and leave me alone!

and finally 6. I know that I need to accept this disease, and roll with the punches, not fight against them. Some how I think rolling with them makes me a quitter, and therefore I fight. I know how to do cancer. You FIGHT! and fight hard! with MS you have to relax and let it be. if you fight it, it gets angry and wakes up. I need to find that fine balance between living my life, and allowing the monster time to sleep.

So... after a few days of rest and reflection this is what I came up with.

kicker 05-20-2012 08:55 AM

I do tip-toe around my MS. Never sure I could(or want to) handle more, so I don't want to wake this sleeping beast.

I have 3 cats and 2 dogs. Cats are easier (I have "5-year olds" moments with my dogs. Being a mother of twins helps me with them) but love my just turned one dog. She protects me fiercely but never bites (How she growled at wheelchair repair guy! - he has dogs, insisted she come in and understood her behavior. She is my girl and lets the world know.)

Moving is fun. Hard, but a nice clean sweep and change. We have 4 neighbors here on our hill, we nod and smile and that's it!!!

My SIL (we married brothers) and I swear that when they die, we'll tattoo "never again" on our foreheads. And we love them.

SallyC 05-20-2012 11:23 AM

Yep my plan..Go with the flow and try to have a good time between PITAs..:D:p:D

Exercise when you can, rest when you should and enjoy the little things. :hug:

Jules A 05-20-2012 10:08 PM

Quote:

Originally Posted by Dejibo (Post 881102)
BUT I would take a Karate class or swim lessons at the Y, or bowling! I love bowling and cant get anyone to go with me. BINGO! i love bingo but no one wants to go. I think one of my problems is that I am lonely. .

Oh Dejibo, please do one of the above! Go alone and keep going back. Although it might take time you will find someone nice to socialize with I promise. It took several months before I felt like I started getting to know the people in my Y spin class but now I feel like I even have a couple of causal friends.

Of course I’m always in favor of getting a dog if someone can afford to care for them properly and I have sworn for years that when my husband croaks or leaves me I’m getting a girlfriend…provided she will clean my house. :D

Dejibo 05-21-2012 07:34 AM

I dont drive anymore, so I need someone to take me, esp after dark. I handed the husband a bunch of buy one get one coupons out of the entertainment book a neighbor gave me and told him "I want to do these, PLEASE! find a way to make at least 3 happen" there is bowling, swimming at the Y, karate, dance lessons, bike trail stuff, and free bingo cards, and so forth.

so, yes, I think part of my problem is that I am lonely.


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