Tired

[SalpalSally]

I e-mail with her, I'll ask her if she is going to return.

[Sunshine]

Why wouldn't she?

[nuthatch]

Thank you all for your concern. I'm okay, just depressed. No, I don't take any ADs and don't believe in medicating myself for it. But I want you all to know I also don't judge anyone else for their choices, please don't judge mine. I feel that my depression is purely situational and no med is gonna change the situation, so I just deal with it. If that means crawling into a hole once in a while, so be it. I always emerge eventually.

There are many things contributing to my depression, especially my inability to go outside of the house. After breaking both ankles when my knees gave out while transfering into the shower several years ago, I cannot stand for even seconds. Because of extreme lymphedema, they could not heal properly, so I have to be lifted with a hoyer lift everywhere - bed, shower, toilet, in or out of my wheelchair. Add that with incontinence, horrible itching skin allergies to just about every fabric, elastic and soap imaginable, extreme lymphedema in both legs so bad it took years to close sores on my toes and now I have to wear very heavy ( wetsuit-like material) leg, foot and ankle wraps, plus compression toe "gloves" just to maintain a somewhat bearable condition. Then there's all the other stuff that we who suffer with MS know so well . . . it's an ugly picture that keeps me rather isolated.
We moved to the central coast of California almost 30 years ago to escape LA smog and crime so our children could grow up in a better environment. They did just that and then went off in opposite directions . . . 600 miles in one direction, 800 miles in the other. Don't get to see them often.
My first grandchild was born last month. Sad that I could not be there to support my only daughter and also to hold and love that new little life. Sad that I will never get to be the grandma I always envisioned being.
Looking forward to the day I can meet her in person. Here's a pic of my sweet grandaughter.
sweet T.jpg

Sorry to unload on you all.
I remind myself daily to count my blessings, but you're right BBS1951, sometimes my bag of rocks is just so awfully heavy.

[SuzE-Q]

I'm so sorry, Joan, you have a lot on your plate, no question. You have every reason to vent!!

Your granddaughter is breathtaking!!

I know you've retrofitted your house to make it accessible, and all your eco-friendly home adjustments...but is there any possibility of moving closer to one of your kids, now that you gave them a safe, healthy upbringing, and they've moved away? Maybe closer to your new grandchild?

If you're not able to get out now, maybe a different scenery would be better now...closer to family, an amazing view, close to services that could help you more. Maybe your needs have changed now and could be better met in a different environment?

Just talking out loud here...

There's no salve for being heartbroken, and I know how much it pained you not to be with your daughter and new granddaughter during such a special time. I'm sorry.

I'm so sorry that life has been so hard and you've been dealt such a heavy hand. Vent any time and as much as you need to. We're with you in spirit.

s

[nuthatch]

Thanks for your concern and the hug, SuzE-Q.
No chance of moving closer to daughter. She lives in a very isolated area in the mountains. Hot in the summer, snow in the winter, very limited housing, limited medical services, power goes out frequently for days to weeks, not to mention it's a high fire, heavily forested area with narrow winding mountain roads. It's beautiful but somewhere you might move to when you're young and move out of when you're old. We're fast approaching the old catagory with my added disability issues.
Bears and mountain lions too. Check out the "kitty print" picture taken in their front yard last winter!
mountain lion print.jpg

Son & wife live in the San Diego area. Too crowded for us, we like a little space and have worked hard to achieve that. Besides, we spent tons of money to build our home with disability in mind, complete with separate attendants quarters should it ever come to that in the future. As anyone who has ever designed and had a house built, it is a pretty intense, grueling process. Don't think I ever want to do it again, let alone move.
The rest of my family lives in the LA area with the exception of one brother and his family who are presently in Las Vegas. No thanks, not for me. We are comfortable here. The kids (ha, nearly 40 and still considered "kids"?) have lives to live, I don't want to hold them back.
Just wish things could have been different.

[Howie]

I'm so glad to see you posting again. We were quite worried about you.

I wish there was some wonderful advice I could offer, but you have so much going on, I wouldn't even try. But please keep posting here as often as you feel up to it.

Lastly, that grandaughter is a real sweetie!!! Thanks for showing us.

[SalpalSally]

No chance of moving closer to daughter. She lives in a very isolated area in the mountains. Hot in the summer, snow in the winter, very limited housing, limited medical services, power goes out frequently for days to weeks, not to mention it's a high fire, heavily forested area with narrow winding mountain roads. It's beautiful but somewhere you might move to when you're young and move out of when you're old. We're fast approaching the old catagory with my added disability issues.
Bears and mountain lions too. Check out the "kitty print" picture taken in their front yard last winter!
[ATTACH=CONFIG]4332[/ATTACH]

NicE KiTTy KiTTy!!!

So happy you are back home with us all.

I love you!!

[Gary]

That granddaughter is beautiful.

I want to put in my Zero cents. For a number of years I refused AD's. Finally I was goaded into trying them and gave up after a week when nothing happened. As a last ditch effort my family got a script from our doc and stood there while I took them after a month I felt a TINY bit better and after a few months I actually could see a reason to get up every morning despite the MS. My AD's, this board and the friendships I have made here are the only thing that has kept me from going off the deep end.

Not to say that I don't have my "days" and if I start sliding into that frame of mind (was going to say 'dark place" sounds too melodramatic) and I don't snap out of it I talk to my Dr about upping them or changing them. I don't plan on ever going back to the way I felt then, actually the thought really scares me.

I am not trying to force something on you or judging your choices. Just another perspective.

And I along with everyone else here, want only the best for you and we are here when you need us. Lord knows I have vented and dumped on everyone here, more than once.

[Jeanie Z]

:) Nuthatch your grand baby is beautiful. I am glad you are back posting. Please don't stay away long or we worry. Jeanie :)

[Howie]

Gary, when I was first DXed, I started an AD. After a few months, I said, "I don't need these, I feel fine". It didn't take long before I thought, "maybe I DO need this", and have been fine ever since. Depression goes hand in hand with MS. No need to suffer, once you find the right AD, things really even out.

[nuthatch]

Gary, thanks for sharing your experience (Zero cents? aww common, at the very least give it a 2 cents valuation!). I appreciate your kind words more than you know.

Funny how "unloading" so much about the "ugly" physical junk I deal with on a daily basis and then seeing the caring responses, even though there is nothing anyone can do and nothing really changes the reality of the situation, has made me feel better equip to deal with it. Wow, revelation!!! That's what a support forum is all about!!

Sometimes people (myself included) don't like to show a vulnerability or weakness or a need. We want to be thought of as strong, as one who shores others up when they need a friend, and find it nearly impossible to admit needing and/or asking for support. Sometimes we simply need to be seen in the crowd. It's hard to be a wallflower when you don't really want the spotlight, but the dark corner is oh so lonely. I hope that I can shed a little light on each and every member here, including/especially those who never speak out, so that all feel cared about.
Okay, now I'll get off my "sitting position" on the soap box and turn it over to whoever wants it next!

Joan

[agate]

Joan, reading your post where you gave more details about your situation made me realize that what I've often thought is actually true. People who post here are showing only a small part of themselves. They may not be doing well at all physically or emotionally. They're reluctant to talk about themselves. They're shy. Maybe they've been brought up to believe that it isn't a good idea to talk about their own problems.

The point is that we can never know from a person's post what that person's real situation is.


It's sad that your children have opted to live so far away. You bring them up to be free to choose, and they do just that, sometimes making choices that aren't the ones you'd hoped for. They don't always realize that they won't have their parents around forever. Sometimes the realization comes too late. I hope they'll at least visit, and maybe rethink their decision to be so remote.

Clearly you've thought through your situation with a lot of careful planning and aren't able to pack up and move.

I believe you've been on this board regularly for 15 years and like quite a few others who are still here, you've been consistently helpful to people.This board can be very helpful for anyone affected by MS, I think. I hope you'll use us. We're here. Still here after all these years!

[Cherie]

Joan,
I've read but not answered since you began this thread. Granddaughter alone is something miraculous and worth living for. I have 4 and don't see them all that often but every time makes life worth it.

[nuthatch]

Agate, thank you for your response. I'm sure your right about not really knowing how or what others are dealing with. Even though I know how MS can vary in how it affects different people, I can't help but wonder how many are just putting on a happy face while silently struggling to get by, forever hiding what might be seen or considered a sign of weakness. Fact of the matter is we all have weaknesses. Honesty is important so that we can lift each other up and help one another through this life with MS while enjoying each others company.
Glad you're still here after all these years, Agate.

[SuzE-Q]

This thread has been so thought provoking for me.

Like agate said, despite this being a close support forum, I too believe many here soldier on alone with much of their burden hidden for the most part, never revealing on here how bad it is or how they may feel. I wonder if that's BECAUSE people here feel close - would it be easier to 'lay it all out there' among strangers instead, I wonder? We build it up and only vent when it reaches a critical point?

Honestly, MSer's are not big on complaining, despite having legitimate hardship and much worth complaining about! We really do keep a lot to ourselves.

Joan/nuthatch, I hope you're feeling a little bit better. I really admire you for venting here, I feel honored to be a part of a group that you trusted enough to share with, among those who care about you, intent on supporting you and sending our love and respect to you in the hopes of helping you through this.

We may not be able to do much, but knowing you're not alone hopefully helps, and knowing that we understand better than most the frustration you're feeling at being deprived of simple pleasures and precious moments that so many take for granted. We know all about that and can relate and empathize with your feelings.

I'm glad you started this thread because it made me think too about how I handle my own grieving of the losses and missed experiences that MS has taken away. I think I need to start reaching out more myself.

I do hope you are feeling a little more optimistic too. Humans are very adaptable, we certainly have more practice than most...maybe that's why MS genes have persisted in spite of Darwin's theory, our ability to adapt?

I'm going to check out Google Earth - this may well be my opportunity to visit many places I'll not be able to see in real life - I'm kinda excited about this now! Thanks for sharing that. I'm going to go listen to those TED talks too, i have lots to unwind with now, thanks to Howie's thread, and lots to think about thanks to your thread!