Staff - Stroke Support
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About HostSue

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    Blog Moderator
  • Birthday 06/04/1947

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  • Stroke Anniversary (first stroke)
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  1. Pearls, I have copied what you wrote and reposted it here. Hope this finds more people and allows some discussion. "Please tell me if I am posting in the wrong place. I am still very confused by the new format and can't find my way to my own Blog. Ownership. When I first came home from the hospital three years ago, I was in a fog. I was overwhelmed by fatigue and pretty out of it. I let others make decisions for me and guide me because I just didn't care. I thought it was temporary. I didn't know who I was or what I wanted. I lost my identity, I lost my job, I lost my relationships, I lost my sense of worth, I lost my dreams, I lost my future, I lost my soul, I lost me. Slowly I have worked to regain those parts of me and I thought I was doing well. Today it struck me that the house I have lived in for ten years is no longer mine. Physically it is. I still feel detached and disassociated from my surroundings. I feel like I am in someone else's house. Things are not where I would logically keep them, someone else does the food shopping, someone else does the laundry and they do it differently. They are in control. I do not know if I lost ownership or if I willingly gave it up. It's not my house and it's not my life. I am just so disassociated. About six months after my stroke I became so disassociated that I felt I was no longer part of the human species. That went away. Thank goodness. My big question is how do I get it back? How do I belong again? How do I feel whole again? Right side brain trauma. I get the cause but I don't get the fix. There are up days and down days. Just eat ice cream and forget it." This is her words posted in the Blog Forum: Please contact Pearls, reply on her post in the Blog Community Forum called "Ownership" or on this one, whatever you feel is best. Sue Blog Moderator
  2. Pam, we all encounter a needy friend from time to time, no advice for you really. I have found in most cases that if you are courteous and kind but firm about your need to be alone sometimes they either adapt to your routine or go and find someone else to follow around. Like you I have many people I call friends and drop in on them to do a small kindness for them. I am not really a best friend person. So some people who are looking for more than I can give do drop out of my life. Which suits me fine. Hope you fnd this cools down and you have some peace.
  3. Pearls, you will find your blog at:
  4. uncertain times

    Sometimes I really wonder what life is all about. I think I watch too many newscasts on television, there not being a lot of interest to watch in mid-winter here. In this age bad news travels fast and bad news from all over the world hits our TV screens especially in the late news which I often watch before I go to bed. Events like the fire in London where so many people died because of bad building materials, local traffic accidents due to wet conditions and constant news of strife and shootings in the Middle East all seem to add to my angst. I am not really a nervous person but the miscellaenity of killings and the worsening world events seems to impact on my life from time to time. I have plenty to think about just within my family circle and among the folks I know and my prayer calendar is always full but still what happens in the world impacts on me whether I like it or not. There is not a lot of good news these days. As you get older news of babies being expected in the family and more exciting things like engagements and weddings seem to diminish and deaths seem to proliferate. Of course the fact that I do so many hospital and nursing home visits also impacts as the deterioration in the ones I visit is more noticeable in winter too. We all get paler and catch small viruses that make us cough and that makes us appear less healthy. Today we had a celebration lunch at church and I picked up one of the people I visit at hostel level. M is able to get into my car and so I promised to take her to the lunch. I think she is deteriorating too although she is under 60 as she mainly associates now with much older people and that is reflected in her limited topics of conversation. We often do become like the people we associate with. That is one of the reasons I decided to invite her to the lunch today, to help her to catch up with some of her old friends as I thought this might give her something else to think about and a new topic of conversation. On returning her to her accommodation I decided to visit another lady whose visit I had not done this month. She was half asleep but one of the nurses woke her up to have her afternoon tea and asked me if I would hold the cup and help her drink it so she (the nurse) could go on and help someone else. All of a sudden it felt like I was dealing with Mum again and a sadness filled me, I told myself that what I was doing was just helping someone out and it was not something i should be sad about and the sadness slowly lifted. To me it was a sign that I am still vulnerable because I have not as yet completed the mourning process - and maybe I never will. Perhaps there will always be some things I associate in a negative way with the death of Mum or of Ray. When that happens I have to tell myself it is not the same and just keep on doing what I am doing. I had another two lunches out last week with some widowed friends who wanted to help me celebrate my birthday. It is so nice to be made a fuss of. I really miss my family at special times, particularly the way they used to make an event of special birthdays like the "O" Birthdays. And of course I also miss the excitement and all the hustle and bustle that visiting family members bring with them. We did manage to get some of us together last Christmas but that is such a busy time of the year I would prefer them to visit me either for Mother's Day or for my birthday. Of course I can suggest it for next year and see what happens. It is part of the loneliness of being a widow that makes me feel this way I think. If I still lived in England I would of course have cousins and other close family members to celebrate with as well. I do envy people with family living close by. On the plus side I had a phone call from my son Trevor and grand daughter Alice from Broken Hill on Saturday morning. Alice who is five now plays soccer on Saturdays, they do not play a full game just spend a half hour on the field and this Saturday she had the award from the coach for "extraordinary effort" and she announced in a solemn voice that she was "the best in the whole world". Not that she is proud of It is little things like that that make my life worthwhile. When the other grandchildren were a similar age they lived close by so I could enjoy their little triumphs, attend Grandparent's Day or Education Week events at their schools and feel a part of their lives. Luckily Trevor does keep me up to date with Alice and her doings and I do get to talk to her on the phone for a short time most weeks. It is such a shame such a distance lies between us. One of my grandsons in Adelaide has a birthday next week and the best I can do is to send money to him in a card when I would much rather be able to give him a present. The wet winter weather is getting to me and I know I will be glad when we pass the Winter Solstice and the days start to slowly get longer again. The wet weather is also isolating and we had a poor church attendance today as some of the members are sick with the viruses that are going around. I sometimes give them a ring after a week or two to make sure they are okay. One funeral next week, someone I don't know well and I will see if going to the funeral fits in with the other things I have to do. I can't do everything. I think sometimes when I reread a blog like this it sounds as if I lead a sad life but I don't , there is always fun and laughter at the functions I attend especially Friday Coffee Morning as we have the Playtime kids there and those little folk always keep me amused with their vitality and their childish charm. And the Friday Soup and Roll lunch with a few new and different people in attendance means different conversations and I enjoyed that very much too. I know others locally must also feel the same loneliness and isolation that I feel some times so in a way that makes it seem ordinary and commonplace and just something I have to learn to overcome. We all have to be grown ups and endure what cannot be changed. I am lucky I have good basic accommodation, the car to go out in, and that is how I have go on to build companionship into my life. Counting my blessing rather than looking at what I have lost or what might have been.
  5. Ray had his major strokes at 57 so we too fell between the young stroke survivors ( 20-40) and the senior (65 and over) stroke survivors and therefore I had to fight for care for him and really only had help the last five years of our journey when he was over 65 and "qualified". That difficulty in accessing care happens in Australia so you don't get the help you need unless you find it for yourself. I found talking to other caregivers really helped me to find out what was free, what was not too expensive and what the govt or some civic minded organisation helped with. I'm glad to hear the water therapy was a success, hope you find he improves as he gets more confidence in the water and with his therapist, that seems to take some time. I hope you take advantage of the water and have time for a workout too. I found time to do some exercises while Ray was walking up and down the pool.That was one period of time we both benefited from.
  6. None of us can be cheerful or positive all the time, I know I have often written blogs when I have been down. Often wondered afterwards if i should delete them and write something more positive but did that only twice. Even if I do not think a blog is forceful enough when I write it i rarely edit it. Of course sometimes in the light of the next day I felt much better and shuddered when I reread how i had felt the night before. It is your blog so write down whatever your true feelings are. Sometimes just writing them down is enough.
  7. Pam, we all read the blogs for ourselves, at least I do. I gain wisdom and knowledge and confidence from reading what others write. We all have up days and down days and sometimes I write from either side of the coin. I just write for myself but also I think also listen to what others have to say. I must admit to using "nice" as a generic term for whatever pleases me. Me bad
  8. Fred, I saw your comment on Asha's blog so you HAVE been back on this site.  Your browser history should show that too.  If you have any trouble getting back on maybe your daughter can help you with that.  We miss you.(((hugs))) from Sue.

  9. I agree with Heather that life is not perfect for any of us. I do understand your frustrations though as I saw Ray got through similar problems many times. I like to have a list of things to do on a blah day, if all else fails I watch an old sentimental movie and shed a tear or two. Hope tomorrow is a better day for you. (((hugs)))
  10. Pam, it is hard to find staff anywhere now who are truly compassionate and try to understand. A lot of people get flustered when there is a delay of any kind to their schedule and then lose their professionalism which is what seems to have happened to you. The practice manager rather than the doctor should have dealt courteously with the problem. The problem with the driver was not your fault at all. I think over here you would have been advised to have someone to accompany you so you were not left alone in a waiting room in case there was a delay. I know it is hard to have to ask someone to do that for you. Hopefully if there has to be another visit that can be arranged.
  11. As most of you know I am a widow, my dear husband Ray died in 2012 but I still have contact through my old Stroke Recovery group with others, both men and women, who are still looking after a stroke survivor and I give them what support I can whenever we met up. I know in my life as a caregiver I often felt unsupported and know that people who are new to being a caregiver or even those who have been one for some time may find the same. I thought I would start this discussion topic here so you have a chance to share that feeling with other caregivers. Sue.
  12. Picture all those negative things in a big box and you bending over the box and throwing them out one by one. Then redecorate the box until it sparkles and take the good things n your life and fill the box with those things. I find visualisation works for me, not all the time but a lot of the time. Yes, you are a good person, a great asset on here and definitely worth it!
  13. Robin, the changes come when we least expect them and typically on days when we are occupied with other thoughts. How about you think of something special to do to to commemorate it being a year since your brother's passing, it is always good to have your own rituals. What is happening to you at work is unsettling but hopefully you will shine in your new position and it will all turn out well.
  14. Pam, another good blog raising all kinds of questions for me as a visitor to nursing homes. When Ray was in the nursing home I guarded him like a fire breathing dragon. I also guarded one of his room mates who had a simple mind. I made sure he played his bingo card right and he sometimes won which he was amazed at. Ray had some special treats set aside for him, suitable for a diabetic and someone who couldn't swallow well. You do your best to fit into that place and I know it often is very hard for you. Enjoy having your own purple poker chips. Things always disappear in nursing homes, I call it the "Bermuda Triangle Effect"
  15. Asha, very well done. You do have it in you to do amazing things. And with a little help you have made a weekend that many will remember. Like you I sometimes doubt my abilities ans then am pleased when things go right instead of wrong as I had anticipated. I am happy that your husband was relaxed and enjoyed the dancing, that must have been a boost for him too. Cling onto those happy memories when the going gets tough, we all need to do that, to embrace the good times.