swilkinson

Welcome to the bog community Lisa. It is good to jot down some thoughts, explore some issues, or just vent occassionally.

I am Sue of Sue's Sentiments, I didn't write a blog when I first started. Now I use them to explore issues or write down things that seem quite unconected until I put them down in black and white.

Good to have you posting and blogging

Sue.

Pam, I guess a lot of my angst comes from my fear that I will make a move, then something will happen to Ray and I will be stuck with a house chosen especially for his particular disabilities. I need to really think this through before making a move.

We have been happy in this house and Ray says the front verandah was "the best thing" he ever built so he is happy here too.

I guess I am slow to change but that gives me good foundation for the changes I do make as I have thoroughly assessed the situation first.

Kristen, thanks for dropping by chat today, glad to know you will be "home" by lunchtime tomorrow. I am sure with your character that you will make the most of the new opportunities that come your way.

Fred and Asha, thanks for mentioning that journeying to new lands is a part of other people's family history too.

Sue.

Fred, here a disabled person is allowed into the pool as long as he/she has a supervisor or carer with them. No-one checks the qualification so my guess is that anyone else will do. You might go with your wife, a family memeber or an able bodied neighbour and see if this is sufficient to get you into the water.

Sue.

Pam, sometimes caregivers aren't good at support as they might be thinking "my survivor is worse than your survivor/ worse than you" I know that can be me from time to time. That certainly applies to me when I read the "invisible defects" posts as I cope day by day with Ray and his quite visible defects. But I do realise that each individual has their own losses and griefs that they carry with them every day.

If you had met me in the first year after Ray's major strokes I was heaps less supportive of others than I am now. Now I know that what goes around, comes around. So in a way when I reach out to give others a helping hand I am actually helping myself and also helping Ray.

Some people live and learn, some people just live. I guess we chose our attitudes to others and can also change that if we want to.

I think perhaps is is true that wisdom is born of pain and suffering. So those whose ride through life up to this point has been comparatively easy may follow us down this same road and wind up as a support person themselves. We just have to give the process time.

AJ, I guess you are a person who needs goals and so your riding will take the place of whatever it was that gave you that achievement high. But do take it easy. The stroke could have been a warning that the pre-stroke lifestyle was too stressing.

You need to have balanced life so get some relaxation and meditation type activities built in to conteract the need to achieve. Maybe you could do bikeriding AND bird-watching.

Glad you pulled back from those seizures. Look forward to reading the Bike Riders Chronicles.

Sue.

:cheer: :cheer: :cheer: :cocktail: :cocktail: :cocktail: :Clap-Hands: :Clap-Hands: :Clap-Hands:

Fantastic, it is good to see some progress, have some hope for the future and your recovery is such great news.

You will be able to dance in the future so just think those steps in your mind and one day your body will follow. Don't know about the shiraz, that always makes me red in the face. :Tantrum: Maybe have a nice light rose instead.

It's good when you are able to post good news.

Sue.

Thanks everyone for the good wishes. A birthday IS a significant event for me and it is lovely to be greeted with heart-felt messages, both here on my blog and in a post on my birthday.

When I was a newbie I started a lot of birthday greetingas as of course your birthday comes up after midnght my time WAY before it is the actual day in US. I stopped doing that when someone criticised me for it. But I still add my greetings to other people's posts, after all you are all treasured companions on the journey.

But anyway, early or late, best wishes are great. And greatly appreciated too.

Sue.

Vicki, Ray ties his own laces too, he also puts all the loose ends under the tongue of the shoe as they are less likely to come undone that way too and so he won't have any loose ends to trip over.

You are getting on with life and doing very well now. I am glad Greg is proud of you, he should be proud when he has such an amazing wife.

Sue.

Vanilla moon, life has a way of holding surprises back until we are ready for them so there may be a beaut man somewhere in your future who will come by just when you are ready for him. I agree with Pam, some men are just worth letting go, and with Bonnie, if he didn't learn from his old mistakes he's going to repeat them. :oops:

Go back to your meditation and self-care and have a happy day. :friends:

Sue.

Sandy

:friends:

Sue.

Fan-jolly-tastic that you have survived with all your marbility intact.

I love words myself and my favourite quote from Shakespeare for a long time was "But me no buts and and me no ands." a lot of people look a little mazed if you say that to them.

I am glad your old self is reawaking, and when finding itself in a new, more limited body is prepared to make the space its own.

Sue.

Pam, I am echoing Asha here. I know you have fought to get to where you are now, the woman you are now is born of that struggle. But it was all worth the effort to you, and that is what counts. You have re-invested your life in growth and the getting of wisdom.

Bill is a good man and you two should get on just fine. I hope the trip to the mountains inspires both of you.

Sue.

Mary

I think going to a movie and to a Chinese meal is the BEST way to celebrate an anniversary. I take Ray to a movie and morning tea as he is better able to cope, more alert, in the mornings.

Congratulations on your survival, your anniversary and your philosophical approach to life and great spirit.

:cheer: :cheer: :cheer:

Sue.

As a former Pensions officer I also would have said that you have earned it. Disability payments are a safety net so that people don't fall into poverty because of long term illness. We are blessed to be able to have money to live on and a place to live when in so many countries this would not be so.

Don't think of this as "early retiremnt" if you don't want to and would rather think that this is not forever, there may come a time when you are able to go back to work at least part time, no-one knows what the future holds. Look at the advances in medicine over the last ten years.

Ray's major strokes in 1999 put us both into early retirement. Seven years down the track I am happy we have an income and a reasonable standard of living. We keep on looking at the bright side of life, there is a lot to be said for just being alive and being able to find value in each day.

Sue.

Mary, I've thought and thought about your question about feeling guilty when I leave Ray to go out by myself. I think in part it is more likely to happen when I go somewhere I know he would love to go and where he would normally have accompanied me. I rarely go out alone to such an event eg a family celebration. I know he feels left out sometimes as on my return he doesn't ask who I saw, what I did, how it all went. I get a deep silence on my return. It is as if he can ignore it and block it out, when he used to always ask me what I had enjoyed about the evening when I got home when we were both independent people.

Legally as he is 24/7 care I can't leave him alone for long so I can't go off and do my own thing unless he is in the care of someone reliable like my sister or my son, or off at Camp Breakaway. It is probably one of the main areas in our lives where we would both like our "old lives" back. Ray did enjoy the break at Camp Breakaway, he is very well looked after there, loves the food, the entertainment and the attention of the helpers. It is a pity as one of the other participants told us when we saw him that he couldn't go every week!

Sue.

Hey Amy, sounds like you are really looking forward to the holidays, hope you have a lot of activities planned to share with Maddy.

If you can hold the newborn that is lovely. I have a friend who has a "useless arm" (her words) and she says in a happy voice:"Wait till I sit down" and then holds the baby in the crook of her good arm, smiling a big grin all the while. Maybe you need to practice with a doll first, but it should be possible.

Hope your holidays are happy and full of sumnshine.

Sue.

Fred, I just love it when kids strive to get that extra few points to get A's, particularly the not-so-bright ones. They will never take their success for granted like the gifted kids do.

A lot of handicapped kids go on to make a success of their lives and a worthwhile contribution to society. I talk to handicapped kids wherever I get the opportunity. A lot of them have great attitudes to life that we can find encouraging too. Keep on being their cheersleader and keep reminding us that others beside stroke survivors have a battle with life and win.

Sue.

Mary, it is just as traumatic not knowing as it is knowing with a lot of cancer situations. Being over optimistic can be the same as being in denial. I am a great weigher of circumstances. I think I am a realist and have a wait-and-see attitude, cheerful on the outside but often shaky on the inside. We have had a lot of cancer in our family and each encounter is different and has ts own set of difficulties to overcome.

All you can do is keep in touch with your work colleague and be patient with her as she expresses her concern. You've had a lot of practice with that here.

Sue.

Kristen

As a caregiver when I stuff up I know I am in strife. I have to sit down and simplify my life from time to time but first I need to acknowledge that I am not superwoman!

Glad you have somewhere to live in Colorado and a job to go to and friends waiting for you there. Moving is always a big deal.

Maybe the being without the boss has gioven you some skills that will enable YOU to be the boss one day, seems to me you have the potential there.

Catch you in chat one day soon,Sue.

Everyone says the first year is the worst and they are right. But now it is time to help that tired feeling go away, in Rolly and in yourself by adding some new ingredients into your life. I know it is hard when you work as well.

In our first year we gave up so much. When work went so did our income,the rehab took time so lots of friend went, even family suffered as we only gave them our leftover time. I felt as if life as I knew it would never be happy again.

Then we took up the coach holidays. They were compact, we could go for just a week or longer, all meals, entries, excursions etc were organised and pre-paid. So it was something new that was partly a rest, partly a change of scenery. That gave me new ideas of what to do at home and inspired some of the other things we did as we talked to other "retired" folk about their life changing experiences. :chat:

We also added water therapy and bowling in our second year. You will find the new things that are right for you, look around, ask yourself what you miss the most and how you can build that into your present life together. Sue, I m saying these things to inspire you to use your summer to the full, get out and about, visit friends, see new landscape, try to renew old acquaintances. Just have some fun.

Sue. :cheer:

Yes, Ken, it is treatable and heaps of people grow old without a thyroid. My Mum had hers out when I was in my teens so maybe 40 years ago. No radiation then and she is still going, well she has Alzheimers but she is also nearly 88.

So your neice could live a long and happy life. Hope it works out that way. In the meantime support her and her family all you can. We have lots of really good specialists here so no panic.

Sue.

Mary, hope you get sunny side up soon. I sometimes get grumpy (various reasons) and must cast a shadow over the lives of those around me.

The survivor pity party and the caregiver pity party are pretty well undistiguishable.

Hope the sun will come out again for you soon.

Sue.

I had an occassion today to talk to a person who to me seems to have some slight problems. To hear her speak you would think she was skeletal, laying down writhing in agony and close to death. Instead she is a plump, healthy looking middle aged woman with a healthy head of hair, a lovely complexion and plenty of animation in her facial expressions and body movements There was so much difference between how she described herself as being and how she presented herself that there was no connection between the two images.

I am wondering if this is a perception problem or if it is something deeper like the girls with anorexia who "think they are fat". Do you think there is some pre-determined condition that makes people see themselves as "ill", "permanently damaged", "beyond recovery" and a few other things my friend threw in for good measure today?

I guess I am asking are there "false" measuring sticks and "true" measuring sticks? So some people are convinced they are worse than they are and act accordingly because of how they perceive their condition, rather than how it really is?

And when you are considered "fully recovered" by your doctor or therapists do you need some help in accepting that it really is true, you have been there and done that but now it is all over and you are a recovered stroke survivor. Maybe we need to build some self-assessment skills into the process?

Sue.

I think I make the same mistakes as your husband sometimes. I do get tired and cranky, I do put the "guilts" on Ray too.

It is not easy to be "on call" all the time. Even if Ray said it was fine to do something in the early days o f his stroke I would think: "I can't, what if I do it and he needs me, or has a fall, or..." so a lot of the burden was from my own thinking.

Ray does dress himself, taught to like Don, by his occupational therapist. He can also stand long enough to shower himself. I do button him up and help with dressing sometimes too, especially if we are in a rush to go somewhere.

Take Jean's advice and get some "dressing lessons". If the going gets tough have a wash instead of a full shower. Maybe sometimes initiate his having a bike ride by saying: "What a wonderful day. Why don't I sit here while you go have a ride?"

Believe me , sometimes for a caregiver, in the first year , it does feel as if you do everything. Even when the person you care for is most co-operative. We all feel the burden of doing all those unaccustomed tasks that our partner used to do. And we are all just a human being, doing our best. So do keep coming here and venting, we all need to get it out , rather than keeping it in and becoming ill because of the built up stress.

But there are lots of couples struggling with the new depended/depended upon role of survivor and caregiver that you are going through now.

Sue.

Wow Caroline :welcome:

You have a great first blog!

:cheer: :cheer: :cheer: Three cheers for you.

Lovely to talk to you in chat tonight. :chat:

I had a shower and now I am not tired.

Sue. :big_grin: