swilkinson

Jeannie, we have found life moves on and you actually do make new friends as long as you stay connected. Ray and I still belong to a few clubs and organisations so we still do the rounds of Christmas parties etc. But some parties I decline if they are too late at night or in a venue that is awkward for Ray to get to. We belong to a craft group so we went to the end-of-year party for that today. Nice Chinese lunch with 21 ladies and Ray! (In Australia just about everything closes down from Christmas till the end of January!) Your new friends will come from the groups you join after the stroke and very few friends will be from your old friendship groups. It is a sad fact that we, both survivors and caregivers, can no longer keep up with the "old gang". Sue.

Oh dear how very black the hole you have fallen in is. I am so sorry you are feeling like this right now. I sometimes feel the same but mine is: "Why can't Ray and I do all those things we planned to do, why are our friends living OUR dreams?" And for us as for you the answer is:"what is done is done, now accept." a very hard answer for me, and perhaps even worse for you. So what do we do? I guess it is to learn to look at what we have, not what others have. We do our best with what we've got. Or in my case make the most of what Ray can still do. Ray walks funny, he falls and I pick him up, he tires and I push him in the wheelchair. Not the life he would have chosen when he was such a vibrant and active man ten years ago. I never had the perfect body, the best smile,the cutest nose and I could never do my hair the way the tv presenters do, BUT I am kind, friendly and loved by some of those people who really count in my life. As I am sure you are too. You, Katrina, ARE BEAUTIFUL. I never had that optomistic spirit I see in Asha so like you I struggle to make sense of my world. I'll pray you also one day make sense of yours too. (((HUgs))) from Sue.

Hi Ken, keep your spirits up, summer is here and Christmas just around the corner so don't sweat the small stuff, just go on with life. I imagine this is my retirement and do as many things as I would have if Ray and I had retired. You can tell by my blog that Ray and I keep pretty busy. Imagine if we had not got on with our lives, it would have been ten wasted years. I think you have to appreciate each day as much as you can. A day may contain a lot of peace and happiness that we will miss if we keep on looking back over our shoulder to what might have been. Ray cannot walk any distance but is content to be in the chair with me wheeling him. He hears a lot of growling from me as I do so of course...lol. He has learned that it is the journey, not the mode of transport, that counts. Keep smiling, (((hugs))) from Sue.

How much family is too much? This is my

Wesley I am glad you are still thinking! I wonder sometimes if you ignore the fact that you were once an on-the-edge survivor if you lose some of the humanity that facing some of your own feelings about mortality brings. I have great admiration for the way you have approached your recovery in such a common sense way and have really made it your life's work to get the most out of your body in terms of recovery. I know that you are able to look back at what you have achieved and feel good about it. Keep up your blog for the sake of the newbies looking for a role model. You have a lot to offer now as a mentor. Sue.

Some weekends are more like running a marathon than a relaxing time off. We had our grand daughter here from Friday afternoon. I was meant to mind her little brothers all day Friday but finished up only looking after them for a couple of hours late in the afternoon and when Tori came she wanted to stay so soft hearted Granma said:

I too am sorry you lost a dear friend. It has really been clear in my life lately that the Christmas letter once a year is no way to keep in touch with dear friends. Those positive good people like your friend are too precious to lose. As Ruth said, life is precious. Sue

Yep, particularly about the hair loved off and the joints being loose ( in my case creaky). It is a growing as you go thing, being REAL. And long term carers and long term survivors have paid the dues and OWN this position. Thanks for this blog Erin, very thought provoking. Sue.

Being a caregiver is not a lot of fun especially when the person you are caring for is full-on and you are tired all the time. Please caregivers, find a way to give yourself a break from time to time, the more you build yourself back up the easier it will be to go on caring. Sometimes we need to acknowedge that there is more than normal caring involved especially if the stroke has triggered mental health issues so make sure your doctor knows what is really going on and can give the care recipient appropriate medication. Trouble is too often we don't tell the GP they are driving us mad, we are angry too much of the time to be normal and that we are overtired. The GP needs to know EXACTLY how it is for us as caregivers as all stroke survivors are different and so degree of difficulty in looking after them differs too. And caregivers, come to chat if you can, every little bit of support and understanding helps. No-one need be angry all the time or feel alone and unsupported. Sue.

If you have never been away for a weekend with 20 or so other women I guess you will not understand a lot of what I am writing about here. This was my fourth WAGS Women

Jan I must say I have some trouble believing the sentiment in some of this literature as it is written in what I call "heroic form". The words of Mrs Hudson Taylor, caregiver, may have been very different! While it is good to read some of this inspiring literature it is not very grounded in today so I tend to read modern autobiography instead.I guess it is all personal choice and personal experience and depends on when we are reading it whether or not we are currently being "sore tested". I do depend on God and it is a lot of the time when I am in the Valley of the Shadow when I cling on most stubbornly. Keep on posting material that gives us food for thought. Sue.

Just this weekend to go and Ray is back full-time into my care. And from second week in December it is full-time as that is when all the services disappear until the end of January. That is when all the helping hand agencies take a heap of time off. I guess that is because the volunteers are all old and the Christmas period is full on for them without all they do as volunteers adding to that busyness. I have spent a lot more time with Mum, which has been really good. I do so feel I neglect her sometimes just squeezing visits into when I have the time. It has been good to be able to respond to her good days by spending longer with her and one day it was two hours as I was able to help her with lunch and then take her out in the wheelchair for an hour in the lovely gardens and she could hear the parrots in the trees and feel the breeze on her face. It will soon be too hot for that. My time off has been a mixed blessing. I have caught up a bit the housework, sorted out a few things for Christmas, and washed a few curtains. I have bought most of the grandchildren

Fred, we are such little insignificant dots in a HUGE universe that it surprises me that we think we can do so much. I guess it takes a great God to look after all of us errant children. We too mentioned your folk there in our prayers in church on Sunday. What a strain going off to war puts on every nation. It may be "over there" but the soldiers come back home and bring their woundedness and troubled hearts with them. Got a friend going through some Post Traumatic Stress right now so know how that comes on so unexpectedly. Keep up the prayers for those you know and see in your streets day by day. Reach out the hand of friendship, give them a smile, do whatever you can to make life easier for them. Sue.

Ray has been in respite a week, one more week to go. I thought I would get a lot done but I was wrong. My routine takes up so much time now that there isn

Any one who has a low hemoglobin reading is thought to have a "slow leak" somewhere so the colonoscopy is usually just a "look see" for tiny fissures rather than something more sinister. Ray had a colonoscopy last year, same reason. No definite result so they put him on iron and vitamin C for a while. Sue.

Yep to a couple of things you said. Companions on the journey, friends who have expereinces similar things to whatever we have been through are very much valued. And catching up with your favourite people, especially women friends - priceless. Hang in there, you are doing fine. Sue.

Erin I can relate to the envy. In Ray's stroke group only a handful have had multiple strokes, only two are wheeled in instead of walking in and only a few have ongoing problems. So Ray is much more incapacitated than a lot of the others. It is as if there are various stages and levels in every room full of stroke survivors and although they all have the stroke in common how each stroke has affected family life, being able to work etc is so different. Thanks for publishing all of these blogs. I will eventually get to read them all. Sue.

By nature I am a very selfish person. Yes, it is true. All my instincts yell:

Rick it is all about attitude whether you are a survivor or a caregiver. Believe me there are days when I think I just want a normal life with a healthy man but then I remember the wedding vows, all those good years and our family and how it would be if all of that ended. I know that Ray has it harder than I do, at least I CAN WALK. Ray can walk but with a lot of effort. So I stop thinking selfish thoughts and I am able to go on. The issue of making concessions is one of the areas that I find difficult but so far, so good, I am still here and so is Ray. Evelyn, nice to meet you, sending you (((Hugs))) from a fellow caregiver. Sue.

Give him plenty of fluids and plenty of love. Sue.

:cheer: :cloud9: :friends: :cocktail: :secret: :juggle: :cheer: Well done...I wish I could send you a big bunch of roses, a basket of goodies, a young man in a tuxedo to take you out to dinner. You are such a wonderful young lady. I can't understand why others your own age don't see that too. Just be assured here at Strokenet among all you friends WE think you are very special. (((Hugs))) from Sue.

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Here I am, waiting again. This time for the continence nurse to come. I was told she would be here at 10.30am. Waited till noon and rang her office, her secretary said she would get her to ring me back. Finally got a phone call at 2pm to say how about next week at 10.30am? I have to have a report from this woman to get Ray

Doreen, it is tough when friends let you down without an explanation, it happens to me from time to time too. I guess when we don't have a lot of good friends it seems even worse when someone appears to have abandoned us. Usually there is an explanation eventually. Do you go on any regular outings? I am not sure what would be available in Forbes in the way of community activities, but it helps if you can get out occassionally, lunches, dinners, bus trips, whatever is available (and affordable) locally. We have Survivor lunches for the women who are stroke survivors in our stroke support group once a month in one of the local cafes and women caregivers and women survivors together get a weekend away coming up in four weeks time. I'm going, they are great fun. Sue.

I had to wait until after midnight to post this as I am not allowed to tell anyone about this till