Discussion in 'Homebound/Bedbound' started by gb66, Dec 1, 2014.
Sorry to hear things are so tough. Our situations are similar although I think you're
carrying a bigger load. I got sick about the same time you did, but I didn't become
disabled till 1984. Even then I was able to work part time till age 65.
But every few years another medical condition joins the pack. I'm up to about
a dozen now. I spend my days napping ('cause I don't sleep much at night), reading,
listening to music, and sitting in front of the computer. Gordon has to do most of
the work around the place.
It would be nice if there were some possibility of things getting better somehow, but
that seems very unlikely to me. We haven't observed holidays for decades. Never go
out to dinner or a movie or the theater or to play cards, etc. Don't invite people
over. Gets a bit lonely. That's why the Board is so important to me.
As for the power of positive thinking, one of my therapists said, "That's basically
pretending things aren't so bad after all. It's not honest, and it's not helpful."
I wish I could still go to Emotions Anonymous, the 12 step group. Went to that
for about 25 years until I just got too sick. Couldn't stay awake at the meetings, and
couldn't speak clearly. Got my words all tangled up. It's true we have things better
than some people, but on the other hand, that's no comfort. Why should I feel good
if somebody else is worse off? I'm still in a bad situation.
Well, I've just rattled along here. Sending good wishes to you and DH. Your
GB it's been a long time ago that many people actually 'celebrated' the holidays. It's about peace on earth and good will to all men, not about stress and consuming as much as you can. Go for the REAL meaning of holidays of spending time with loved ones and enjoying each others company of those that you are able to instead of making yourself go crazy over the outer shape it is 'suppose' to have according to media that made us into crazy stressed out people that buy even more stuff that only damages our precious planet that is in so much distress already. Go for peace and let go of all the rest, it isn't what it really is about anyways
Positive thinking isn't about denying the fact that their is hardship in your life, it's about understanding what the effect of the direction of your thoughts has on your overall wellbeing. It's about allowing yourself to enjoy the enjoyable despite of the hardship and to find new things (or discover old things in a new way) that are still worth enjoying. Surpressing serves noone but letting your mind go in directions that only make you feel miserable serves noone either. There is plenty to be sad about in everyones life nowadays whether ill or not, but there is plenty to be happy about still too if you look for it. It is about finding new ways to do things instead of mourning the loss of old ways for the rest of your life. It's fine and perfectly normal to mourn a loss but if you stop looking for new reasons for joy then you already stopped living and there is plenty to live for.
Health is not the basis for happiness, our mindset is and allowing ourselves to move on no matter what life serves us. Though ofcourse there can be healthreasons that cause extra troubles to your mind too no doubt. Even though I'm no longer healthy I am happier then I was during my healthy life. Illness has certainly challenged me a lot but has also thaught me a lot about what happiness really is about. It isn't about what I am able to do or not. If everyone would be in our condition all of a sudden it would be normal but would that make us any happier? For me personally I had to conclude that what made me most unhappy is comparing with others or my old life and getting stuck in that. And what made me most happy is finding alternatives to still do what I value in life in ways that are within my reach and do not harm my health, which is challenging and often very limited but has made me ever so creative in finding new ways.
If games on here make you happy, just create more games, do what makes you happy, that serves others too.
I know what you mean GB, I may not have been severly ill for 35 years yet but 17 years is a long time too for a young person, and I have been in 24/7 unbearable pain and discomfort too, I do know what that is like, and I miss being able to be with my family too, especially the children. I cherrish the moments that I can. Personally for me, I found that for a while it just stopped me living in a sense, and I sort of locked myself out of everything since 'I wasn't able to be part of it anyways' ...
Now I'm trying hard to be part of their lives in all kinds of alternative other ways that still show I care, like making them personal gifts and sending them funny emails or messages on their birthdays or simply just in between. And by keeping myself informed on what kinds of social media they are on and joining in on that. It's not the same, but for me taking the step not to go to birthdays and such anymore has helped me feeling less worse so that at rare moments that I AM able to spend some time with them I can handle it much better and it is more fun for all of us. I no longer feel disconnected now though physically most of the time I am.
Did you ever try skype or whatsapp, or facebook or other new ways of connecting that is more in your leauge or tell them how you would love to be in contact more and if they have suggestions on how that could be done in such a way that fits both parties?
There is so much possible these days, that will not replace the real getting together but could give so much more meaning to our lives nevertheless.
My goal has been to be better and without pain for a long time too, but for me the best change has come when I stopped wanting to get better (since that wasn't happening anyways despite all the energy, money and time invested in treatments and medicine that only got me to feel worse) and when I stopped wanting to control the discomfort and everything but started focussing on a completely new way of living I WOULD be able to build up within my limitations is when I started to get a bit of value for my life back. Ofcourse, life threathening things have to be adressed and it isn't about giving up on getting better for me, it's about letting go of the old and unrealistic expectations to be able to create something new that DOES fit.
Each one of us has such a personal and unique road that noone else can plan out for us but to me it took the best possible turn when I stopped trying to get back to where I was. It didn't heal me but gave me a life back, not one I imagined before, not one I would have conciously chosen for but a life nevertheless that is more then just trying to get better for the rest of my life. And I feel sad if I see people spend all their time and energy on trying to get better and spending all their life, time and money on just that, whilst they already have so little of it. I understand it but I also would wish for them that more people would be able to go from where they are at, instead of waiting for some miracle to happen or some docter to cure them or take away their pain, when they already tried that for so many years. But if that is what they feel they need to do, then that is what they need to do and I can only hope that making that choice truely feels best for them and they can at least have the satisfaction of having made that choice as the right one for them at the end of their life.
Separate names with a comma.