swilkinson

Staff - Stroke Support
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Everything posted by swilkinson

  1. Yes, we are thankful to have interests to keep us going too. Had our grand daughter and three lots of visitors on Sunday. Ray is at Daycare today having a picnic in the Japanese gardens. He wil be real tired tonight. No Lions for us so we must have our meetings same week as yours. But Ray will get more sleep now the Commonwealth Games broadcasts are over. He just enjoyed the variety of sports so much. Hope you have a good week. Sue.
  2. swilkinson

    Dirty little secrets

    Denny...is that REALLY YOU? Sue.
  3. swilkinson

    Dirty little secrets

    I'm not partial one way or another but "fake ID's" are a problem where ever you encounter them. If someone leaves and comes back it's probably more appropriate to let others who are new to the site know that you were once here and then left and have come "home". So Stan and Kim, welcome home. Sue.
  4. Fred, sounds like you live in a real big neighbourhood there. I just love your positive spin on life. We just bought a small car that I can lift the wheelchair in sideways, makes a big difference to my back. Ray can slide in and out of it easy too. We have too few concessions for disabled people hereabouts but politicians here still need to seek the money to look out for the disabled and their caregivers. We just got a new politician so I might just pay him a visit and see what his policies are. Keep up your work in encouraging the newbies, you are doing a great job. Sue.
  5. swilkinson

    Baby Steps

    Ray get critical when he is tired. Often makes faces rather than comments about food he doesn't like and pushes it around his plate. We eat at our local club bistro rather than restuarants as I can adjust the portions to how he likes it. Man oh man, I wish he just had a good healthy appetite again. Sue.
  6. "Congratulations Mrs *W* you are our grand prize winner for today. You just won yourself a trip to the Bahamas" so said some enthusiastic American voice at the end of my phone line. She was less than enthusiastic when I told her I had an invalid husband, no money to fly anywhere right now, and no time to listen to her spiel. Well lucky me, on a Carers Pension, with a husband who's had five strokes, living on the East Coast of Australia and they are giving me a holiday in the Bahamas!!!! Just what I always wanted!Wake up from this, this is a nightmare. Don't know if you can picture me throwing down the phone and running but it happened. I felt as if the Devil was chasing me. It is not a good day today, I have a car to unload and it keeps raining, I have laundry to do, and it is raining. I have to go to the shops and pay some bills and it is raining. Did I mention - it's raining? It isn't even heavy downpour, fill your tanks up rain, green up your grass kind of rain. It is just silly gusts of rain, the sort that makes you wet in a short time out in it. So shopping is delayed until tomorrow, laundry can go out then, I have maybe two more loads to do. I am still coming to terms with the closing of our church and the end of that era. Ray still went off to Bible study on Tuesday, he can't do that forever but for now it is a comfort to him to still go on with some of the familiar routines of his old church life. This coming Sunday we will go and try the "new" church. I hope the folk are friendly there and there are at least a couple who comes over and say "Hello" and introduce themselves. It will be some comfort. But it is not going to be "life as we know it". I am trying not to dwell on that thought right now. Congratulations Mrs *W* you have been selected to go through life with a lot of little niggling problems that won't kill you but will take a lot of the shine off of life. Quit wasting your time expecting to be happy, the glamourous holidays-in-the Bahamas life is not for the likes of you. And you can also get over the feeling that life is out to get you some days. It is not about you, you have very small problems compared to a lot of others on the planet. My phone still rings with the church folk, I guess they want to reach out one more time for reassurance. It is sometimes hard being an Earth mother type as people look to you for comfort. Sometimes I can give and give, sometimes I can't. I've said a couple of times today: "I don't have angel wings." You know those big white feathery ones that remind you of Pegasus the flying horse. I think some people do think I have them. They ring me with their troubles and out comes my magic wand. But today the batteries are low and there is no glow at the end of the stick. Congratulations Mrs *W*, you just got yourself a dream holiday. Pity you can't take it. Oh well I guess we will just ring someone else.
  7. swilkinson

    NEWBIE HERE

    Hi Simleman Lots to see here, plenty to read about and add your reply to. Glad to see you in chat already. Stay on this site for a while and get the support you need or give others a help in their time of confusion. And you started a blog too. Good work Sue.
  8. swilkinson

    mom's stroke

    Good your mother is getting back to normal again. But as you've learnt time is important in strokes, as the blockage continues ( or the episode of extremely high blood pressure) more brain cells die, more is lost. I guess we are all wise after the event, Ray had two TIAs we now know before his first stroke, but we put them down to his diabetes. Always best to get something checked out. We do now. Welcome ot the blog community, it is a great place to get life in perspective. And to look back over past blogs on anyone's blog archive will help you maybe see where you are going too. Sue.
  9. swilkinson

    OK, ANOTHER SONG

    Hey Kim I sing all the time, often spontaneously, I find the words of the song I am singing aren't relevant as a whole but a phrase in the song will have REAL SIGNIFICANCE. I think this is what you have hit on here. In your world yo can "never leave" no matter how much you want to leave the stroke behind you can't. But you can redesign your own world, we all can. So sit down and think what you can do with what you've got ( including home, family, time etc) and see if you can make it more like what you want it to be. Interpreting dreams and visions in your head is a very old problem but an interestiing one. You might even be able to find someone to help you with some relaxation techniques that will help slow your thoughts down so you can "see" them more clearly and work on what you REALLY want to do. Good thought just having a stone massage....mmmmm :I-Agree: Sue.
  10. swilkinson

    TIA

    Why are you waiting dear one? I hate to think of you waiting till J comes home to see if you need medical help. Will be thinking of you. Let us know as soon as you have been assessed. Your worried friend Sue.
  11. This isn't about how to be a good carer - it is about the differences that show up in disasters. We have just had a cyclone up in northern Queensland, right in the middle of our sugar cane and banana belt. The damage has yet to be assessed but already there is talk of billions of dollars. Not in compensation but in lost income and assets. So far no reported loss of life but who knows? It is never reported how many people have strokes, heart attacks, commit suicide or die younger than they would have as a result of natural disasters. Of course the people of Northern Queensland are reported as a tough bunch. They live in a climate that is hot much of the year, where there is always not enough rain or too much. To a certain extent they rely on the "dumps" of rain from summer storms and cyclones to fill the catchments of the rivers which all flow out to sea and to cover the valleys with inches of water to replenish the underground water supplies. Life is extreme, on the coast there are sharks and box jellyfish , the sting of which can kill. Inland there are venomous snakes and in the inlets crocodiles. You live there because you love the place. The centre of the cyclone was Innisfaill, a small town between two cities, Townsville to the south and Cairns to the north. This is the coast where the oldies flock to in winter from Victoria, Tasmania and even parts of south western New South Wales where winter temps drop below freezing from May to September. The oldies live in relocatable homes (in some places called manufactured homes) in large spacious parks close to the water. Luckily most of them are still at home as yet and haven't headed north. In a months time it would have been a different story. What does our Government do in emergencies? Each State has a partially government funded State Emergency Service. These are the guys and gals who put tarps over your roof when the storms hit. They also co-operate with the Bush Fire Brigades and other emergency services to provide muscle. They are already in the area. The usual charities like Salvation Army, Anglicare, Red Cross will be on the scene to assess immediate needs, there will be an appeal. The Federal government "may" call out the army etc to provide demolition crews and installation crews to put up bailie bridges etc. It is all done pretty fast. But as with any government operation a lot is overlooked so that is where the fund raising bodies come in. They give emergency money, your house may be gone but you still have to pay your phone bills. There is some rorting of this system always but usually it is pretty well respected. Financial counsellors move in to help you stall the banks, counsellors to help your children sleep without nightmares. Food, water clothing and shelter are the first priority and the State government will bring workers in to help with that. The people will rally round and help each other too, they are country folk and used to helping neighbours. If you can't get a relocatable home you can sleep in a tent with your rescued goods in an old shipping container. Power plants and generators are in large planes on their way. Neighbours from hundreds of miles away will send a truck to help in the convoy work. Telephone and power restoration, reconstruction of roads and bridges etc all take a lot longer, that is where the bureaucratic red tape and all the angst comes in. And the s-l-o-w assessment and payment of claims of the insurance companies. But the residents of Innisfaill have already set up their own emergency aid stations and shopkeepers have BBQ's and food stalls to feed the workers. No-one will starve but then there are only hundreds of people, not thousands to cope with in this sparsely populated area. Kind of reminds you of some families doesn't it? They rally round when there is a crisis. Some of them leave too soon to be of much help, but at least they were there for a while. Others are practical people who are there to give you real help for as long as you need it. I thought of writing some of this down as a few of you have PMed me already. Thankfully al of this is happening 1600 miles(2095 kms) away from me. But we are part of the same country and so if there is an appeal we will give as we always do. And like Katrina and all other disasters there will be people who survive and come out stronger for the experience and those who give in to depression and illness or break under the new load they have to bear or even go down financially below a level they will never recover from. Not everyone will receive aid as a lot because of pride or whatever will never even apply. Life is not fair and equal and whoever said it was must have been thinking of some other planet. Guess all we can do is pray for the people inundated ( literally as it is really raining up there) and distressed by what has happened to them. It isn't their problem alone either, bananas and sugar will both be higher priced this year and sadly some of our snow birds will have had their winter nests blown away. For Australian news try: www.ninemsn.com.au should be news on the cyclone there for a while.
  12. Sometimes us mothers smother our children with suggestions. In our bid to take the pain away we just make it so much worse. My Mum was full of suggestions like yours. We used to say: "Yes, Mum." smile and walk away. Now she sits silently at the Dementia Lodge and I sometimes wish somehow I could have all that old chatter back. Hope you get into a good sleep pattern soon. Sue.
  13. Hi Lynn Good to speak to you in chat today. I just love flower shows too. We have a regional Springtime Festival in our local area (Gosford) in September, we go every year, it is like paradise to me. Wherever you go there is a chance of meeting a friend so the more you go out the more likely you are to make a friend. Speaking and writing about plants is a great career move, there are so many organisations wanting guest speakers, we belong to our local Lions Club and when we invite someone it is a free meal for person and their partner so there is another place to meet people. OOh how I wish you were here!! Sue.
  14. I think of my first introduction to life's troubles, was when I was about eight years of age. The death of a really special person in my small world. That is the one outstanding traumatic event in my primary years. I had a good friend called Jenny, she wasn't a personal "best friend" I had one of those too, a friend called Jean who I am still friendly with after 50 years. Jenny was a wit of note, at 8 years of age she was smart mouthed, clever, exceedingly academic and not bad at athletics. Given she was also small, Welsh and a girl she was going to be our first superwoman, and we all knew it. Jenny had a "gang of four" and I was one of them. This meant a lot to me as I was a migrant child with not a lot of friends. Jenny had head-aches, she would go a bit red in the face and have to lay down. She did not play on this illness, being a comic this meant when she was supposed to be sitting down taking life easy instead she would roll on the grass, laugh until she almost cried and we would all do the same. She was leader of the pack. Then we came back from our long summer vacation and Jenny was not there, she had "had an operation" during the holidays said our new teacher. Jenny came back for a visit just once, she was thin, wore a headscarf and had lost her light-heartedness. She listened to all WE had done but didn't share what she had been through. We found out afterwards she had had an operation for a brain tumor, the cause of the head aches. But in our eyes she was still Jenny, our chosen leader. We so looked forward to her coming back to school and leading us into a new bunch of mischief. We were all stunned when three weeks later the teacher announced that our friend Jenny had died. DIED? That was what old people do. Not young people like Jenny. I think that was the last time I was a member of a gang, an insider, a laughing, let-it-all-flow person. I did hit that phase again later in my teens but not with full enthusiasm. I think I will always still be a part of Jenny's gang maybe because I never got to resign. It still seems a bit unreal because I didn't get to say goodbye to Jenny. Small children were not supposed to attend anything but the funerals of close family members, and in some cases I think the same applies today. There was no counsellors rushing to school to help us all cope and nothing happened when a child died who attended your school except for a minute's silence when all you could hear was coughing, shuffling of feet and some stifled giggling among the kinders. I don't know why I thought of Jenny today, maybe it was the bright headscarf I saw a child wearing on Friday when we went shopping. A small brown eyed child with a laughing mouth but sad eyes. Some parts of our lives are like patches of quick sand, we stumble upon them on a long stretch of sand that seems peaceful and serene, we don't see the warning signs that have fallen face down on the sand. Strokes affect the lives of some people just like that because they are sudden, seemingly come out of no-where and the life you had can be sucked so quickly down into them. I often ponder the posts here, re-read them a few times, coming back to ones that I think are particularly relevent to what I am going through at the time. I think the written word has a lot of advantage over the spoken word. You can go back over it until you can get the meaning behind the words. I know like Asha said in one of her replies to a previous blog that we don't feel that we are "wise enough" to reply to posts or blogs and some people can't spell or write what they want to say. But we have all had experiences that are worth sharing. And we can enrich the lives of others by using our own experiences to support and encourage others. We all need signposts and bus seats and wailing walls. A signpost points the way, there are some great signpost people here. A bus seat is somewhere to sit and wait and that is what some of us do in chat, we sit and wait and someone comes by and chats for a spell. A wailing wall is where you just put your head on those sun-warmed bricks and cry out your troubles. Those cries echo through our Newbie posts and other forums. Go gently with Newbies, remember when you were one. That's me waxing philosophical again. Funny what memories can be stirred up by such small events on the pathway of life.
  15. swilkinson

    Reality

    Steph, don't stress over what you were. You had strokes and missed some of your life, that happens. Now you have a lot more time for your kids and can make up for some of that. Sometimes choice in what happens just isn't there. Sometimes we choose unwisely but often there is an opportunity to makeover the present and make our life count for something. I am a firm believer in redemption. And while we can never lose the past to a certain extent we can make up for it. Plan to be there for your kids and with your kids. There are a lot of good times ahead for you and Dave and the kids. Enjoy it to the full. Sue.
  16. Don't know if you ever played a game where you had to complete proverbs? I used to play it as an icebreaker when I was a Tupperware lady over a period of eight years. It goes something like this. 'I am going to give you the first half of a proverb and I want you to complete it for me. Ready?"The grass is always greener....?"Lady eager to win the first prize:"when you mow the lawn?" Lady next to her:"when you water the lawn?" This is a good place to stop and give them both a prize. Because the secret of life is not to know the RIGHT answer but to know AN answer. And the aim of the game is just to engage them in ideas, to put them in the mood for the sales pitch. Now I have been on this site since last May, in that time I have become a prolific poster, a blog writer and a chatterbox. And I have enjoyed every minute of it. Sometimes now when I am looking at a thread and I see the answer I have posted to someone's question back in my first months of posting I find I think differently now. More water under the bridge since then, older and wiser, maybe I have gained some knowledge of that particular area of stroke that I didn't actually have back then. The answer I gave might have not been the exact answer I would give now but it was AN answer. I want to encourage everyone who reads this blog to reply to the posts of newbies. It is a terrifying feeling to be all alone, as a survivor, as a caregiver or as a family member. What a relief it was to me after my first post when I came back on and I had four replies. Four lovely people had reached out to help me cross from my lonely room in front of my computer into the Strokenet family. I am thrilled with the number of newbies we have had join lately, there seemed to be a lull for a while and as some of the people who were here when I first came on dropped away for a variety of reasons I am sure I got a bit worried. What if so many people left that there was no-one on here when someone needed help? I know there are over 4400 members but some of them have never posted, some rarely post, some post regularly but not every day/week/month. What if someone came on with a need and there was no-one there to answer? Seems unlikely that would happen. Now we are having new blogs too and that is good. If someone like me can do it so can everyone. It is like writing a letter or a report so if you've been a business person you can certainly do it. Or reprint a joke, or write us a poem or post a new recipe we can all try or at least yearn over. And a photo of you in the Gallery helps newbies put a name to a face. I am sad that some of the great bloggers like Cinder have now retired from the site. Like so many I come on several times a day and check the posts, blogs and Gallery, learning so much about how people cope with their stroke or with their partner's or parents' stroke that I become a better person just by associating with such great people. I have a lot of worries on my mind right now. But in coming here I see so many others do too and they are coping as bravely with the hand they have been dealt as they can. And I need to too. So thank you all who honestly share their ups and downs. You really ARE a support to others. So thanks all, for those in chat, for those who post, for the picture in the Gallery, for the PMs and the emails. I appreciate them all. Thanks to the staff, the hosts and the CEO too for having this site available, free of charge, 24 hours a day. The grass may not be greener at your house than at mine but by showing me how you deal with that grass you show me how green my grass can one day be.
  17. The alternate would be for your doctor to say "excuse me" and pop over to the other office and ask the neurologist himself surely? He might even be able to give you an educated opinion then. It's comic that they need to pass you bodily from one to another when a quick chat, phone call or email would have done the trick. Scooterman is right, it is about who gets paid. Sue.
  18. I also feel vulnerable as I did give a friend the address to look up information not thinking that he could also view my blog. Iwill have to make it more generic and less personal. Don't want to offend anyone. Or give them too big an insight into my life either. Sue.
  19. :I-Agree: my rose coloured glasses need renewing now too. I am a caregiver not a survivor so don't have the health issuess but other problems at the moment are getting me down. I haven't had a massage for years, maybe that is what I need too. Looking after yourself and doing something positive can really lift your mood. Hope tomorrow is a better day. Sue :friends:
  20. swilkinson

    empathy

    Seven years post major strokes Ray still has no empathy. He lives a bland life mostly. Some little outbursts but nothing I would describe as beyond mild affection. I don't know if he doesn't feel anything much. Or just doesn't have the ability to describe what he is feeling. Sandy, I talk a lot about not being able to deal with something but find, given time, that I deal with it just fine. I don't want to, but do have the ability to. It's a matter of choice. Sometimes I discuss Ray's inability to show feelings with friends and in their own circumstances say they would prefer it that way!! Can't give you any advice so :friends: will have to do. Sue.
  21. swilkinson

    The clock is ticking

    Blogging about nothing is good. I find sometimes I have so much I want to say that I can't say any of it. Kind of like now when my mind is overloaded so I just repsond to other people instead of trying to work on my own confused thoughts. Glad Joe is feeling good enough to join the "guys" again. You take care of you now, watch all those old movies and have a sit and relax for a while. Sue.
  22. swilkinson

    A. A. A. D. D.

    Fred, I do a lot of similar things, I just put it down to being a dizzy blonde with grey hair. Sue.
  23. swilkinson

    Grumpy old woman

    Maybe you are just having a fit of honesty? I've been thinking along the same lines. What is making me feel grumpy? For me it is life changing and me not wanting it to. Sue.
  24. swilkinson

    One crazy day

    In the meantime :friends: Sue.
  25. Miss you but I know how work can keep you busy. Remember all work and no play can make Kristen liable for illness too so be very aware of your energy levels and your sleeping. Sure you'll get back your normal life one of these days. Sue. :Cheers: