Decreasing support and how to find more support.

[LisaT]

Thank you for your responses. The reality keeps changing and every time it does there's a whole new set of adjustments to make... I don't want to feel like it's a fight every step of the way. Who has the extra energy and time to drag someone along kicking and screaming?!? Anyway, I will keep doing what I need to do and he can get on board or not when he so chooses. He usually comes around, just not on my timing... I really appreciate all the support I'm receiving here. And I had lunch with my good friend, who happens to be legally blind, and when I told her what was going on, she said, don't worry,,, you have me... And my BLIND support. She's always able to make me laugh. Back to the beginning of the thread, that's my advice for everyone; spend time with the people who make you laugh.

[windchime]

Take some time to chat with Lilly. She had some of the same problems. Maybe you can send her a PM or if she sees this she can send you one. She's probably the best person to give you advice on this subject, at least that I know of. Your story is somewhat parallel to hers with regard to her/your significant other. Just a thought.

[nympha7]

Anyone close to South Tx??

[sbeach78]

I noticed the same thing. when I was so ill I couldn't so much as set up I had all kinds of people show up to visit now I just set hear unable to find work and alone. Sometimes I wonder if its me though, between the PRED. and everything else maybe I just chased them off.

[drz]

It is interesting to me how people find these old threads that have been inactive for months or even years and read them and identify with the content and then reactivate the thread by posting a comment. It was interesting for me to read this again over two years later since I started this thread. My situation is about the same as my last post in May of 2014. I like to go to various activities and entertainment that are low energy events and I am always on the look out for another new friend or even a new best friend or female companion. I try to keep in touch with the old friends and visit a lot with other people in my apartment building and try to partake in many of our building social activities. I often organize or plan events for some of my friends here, as I am the youngest one in our senior housing complex. I try to plan things that can fit in between my many medical trips and appointments like an outing some where to enjoy some Irish food for St. Pat's Day.

I guess my doctors and nurses are also an important part of of my social support system since I rely on them for assessment and advice on managing my chronic illnesses. One advantage of being a frequent visitor at various medical facilities is the staff recognize you and greet you like an old friend and it speeds up the registration process. Two doctors have also given me direct numbers to reach their nurses in case I need to contact them for an emergency which is a nice perk too.

[drz]

I noticed the same thing. when I was so ill I couldn't so much as set up I had all kinds of people show up to visit now I just set hear unable to find work and alone. Sometimes I wonder if its me though, between the PRED. and everything else maybe I just chased them off.

I think pred causes mood change that can be confusing to the people around us. Another issue I went through briefly was the depression that followed from the losses causes by my Wegs. This lead to a period of being isolated and withdrawn too. Not being able to hear for a couple years until I got my BAHA also made any group social activity difficult or impossible too. Some people can understand and accept such limitations and those are the ones worth keeping in one's life.

[Debbie C]

drz,its sounds like you have come a long way since you first posted that thread. You seem to socialize quite a bit within your community.I think having your hearing back has made a world of difference for you.
I think pred ( and all this other meds ) changes us all in someway. I can't believe the guy I am seeing has stayed with me for 14 yrs. I know I wouldn't stay with me with all the s@#& I give him and my the tone in my voice has changed to where people think I have an attitide about things sometimes.

I don't know,we are not the same people we used too be and that is sad. But on the bright side things could be worse.

[annekat]

All this talk of isolation, loss of friendships, and changed tones of voice hits home with me, too. Although I do see enough people in the course of what I do to not be too isolated. But I must say that this forum has been a blessing in sending me lots of new friends who understand the issues of having WG. Deb, your boyfriend is obviously very devoted to you, to stick around for so long! You are lucky in that respect, and I'm happy for you. He must be a pretty patient guy who doesn't want to lose you.

[BookNut]

As Pete says, even just retiring brings social changes. I wonder if you could do something that keeps me socially active with friends. We are all retired, but I think it could be arranged to work with a mix of retired and working friends. Here is what we do. Some folks who retired about 8years ago, set up a regular lunch for all retirees from our school district. It is very simple. you choose a regular day and time , such as the first Tuesday of the month at 12 noon. It could be set up for dinner time as well. You find a restaurant that is willing to set up a reservation for an ever changing number of people. The restaurant we meet in sets up tables and chairs for about 16 folks. Sometimes there are 6 of us.....sometimes there are 14 or more. No one is in charge. We just show up, and whoever is there has a great time. It might be a little tricky at dinner time...but as long as it is a large restaurant, and it is on a typically slow week night, it should work for most people. Worth a try. We love it.