swilkinson

It is good to have a special treat, especially a freshly picked piece of fruit, glad it happened to you Pam. May many more opportunities come your way.

Ray had to have new brace when he lost weight as the old one moved awkwardly resulting in a ulcer on his heel that took a long time to resolve. These things happen partly because of the little time staff have to really observe the patient, when a shower is a splash and dash affair. Ask staff to please look at skin condition etc when they shower him. You take time for yourself too my friend.

Little things mean a lot when they add value to your life. Paying it forward is the way to go, we all have something we can give. (((Hugs)))

George congratulations on embarking on what looks like a great adventure, hope it is the trip of a lifetime. You have had a stroke but after much struggling now live a good life. Bravo! Now my friend give us some pleasure following your adventures by blogging from time to time and if you can add pictures that would be a bonus for me. Love to Lesley and her Mum.

Happy Mother's Day Asha, being content with what you have is the secret to a good life.

The generous gift Dan and your family in consenting to the donation has created is it's own legacy. It is a great tribute to Dan and to you that the gift has brought new life to others. Sarah your son had a good example of that during his upbringing. I am so glad that brought you some happiness.

Kelli I hope you are right and it becomes routine. If there is nothing I can do about it I will just have to get used to it.

Heather, the problem with getting the stocking wet is that it will chafe the edge of the scar behind my knee which is 9cm in diameter, quite a big wound, and with quite a bit of nerve damage around the rim. I can pack it with cotton pads for day wear but that would present another possible problem. I will work on finding a solution though, I am sure to find some kind of gel pad that fits the space.

This afternoon I went to the Lymphoedema Clinic for the first time, I was anticipating getting some of my most pressing questions answered. I had done what everyone does, gone to Dr Google for my answers about the relationship between lymph node dissection and lymphoedema. Most of what I found related to breast cancer but that is understandable as the breast cancer girls pioneered the use of lymph node surgery. I am very grateful for that and the surgeons who pioneered the treatment. The girl who I saw put me through the usual paperwork, I am getting used to it now, taking them step by step through the discovery, diagnosis, surgery, recovery etc. Then there was examining the wound site, taking the measurements of both legs etc. Then she asked me could she call a colleague in and the colleague explained that I would have a new pressure stocking, measurements would be taken six monthly and on and on. I was a bit puzzled as the surgeon had said I would have the stocking at least until the end of October, so I mentioned this. The colleague laughed and said : " I don't think so, this is forever." And I burst into tears. The girl who had asked me the questions was dismayed and tried to calm me down. I'm sure they thought I knew this was a possibility. But I didn't. I assumed the condition would settle down and I would only be wearing the stocking for long distance traveling once October ended. I guess it is like any diagnosis, I found it af bit hard to swallow. Initially it was devastating. I thought it was a case of accepting the changes, having some physio and then a new life with a new normal. Silly me. When the colleague has gone back to her room the original nurse Connie explained that certain factors like getting overheated, stressed, tiredness and overuse of the affected leg can cause the lymphoedema to spread. So it was safer to continue to wear a pressure stocking. Dr Google didn't tell me that. So I now have to get used to the idea of having this condition forever. I can still take the stocking off for short periods of time, wear gym pants which will apply some pressure for swimming, walking on the beach with my grandchildren etc but a lot of normal summer pursuits will have to be carefully monitored because of the possibility of overheating. I know a lot of my friends will pat me and say "never mind" but I do mind. It is another body blow, another little death, the death of summer dreams. Just the thought of finding some place to change in and out of a pressure stocking near a beach kind of denies being able to do anything without prior planning. "I'll just be five minutes, well closer to an hour I'm afraid." Nothing spontaneous about that is there? Okay, I know that is the case for a lot of stroke survivors so I am lucky, but I need time to get used to the idea. And that kind of sums up the last couple of decades, changes that I have had to get used to. And eventually I do. But not without a fight usually. Sorry as I am about my inability to adapt to every new situation. Maybe body image is still one of the issues, I want to look and feel as good as I can for my age and circumstances. I guess we all do. I know some people are able to relate to this and others will find it difficult. After all I still have the use of both my legs. How long is forever? Nurse Connie said it is like today, tomorrow, the next day and the day after that, if I can think of it that way it won't be so hard. Perhaps the survivors will understand that. I can in a way. I did a lot of that when I was a full time caregiver for Ray just looking a few days ahead, not too long ahead or I couldn't adapt to the sudden changes. And we all know how suddenly life can change. Hopefully this won't be the case for me. Until the next set of tests I can pretend nothing else is going to happen can't I?

(((hugs))) Tracy, I have been experiencing some setbacks recently myself. All we can hope is that things improve.

My husband used to cheat when he had a blood sugar test by hardly eating anything the day before so his clever doctor would do a test in his rooms - whoops! I used to tell him "your body will always make a fool of you"...lol.

(((hugs))) all we can do is supervise the care our loved ones receive as much as we are able to. No guilty feelings my friend you have always done your best for Dan.

It is over five years since Ray died, I still long for that life, bad as it was. There is no getting over some of our feelings, we just have to live with our own uncertainty and insecurity.

Kelli, don't know how long it took for me and my older son to get to understand each other, he is mid forties now and we are still working on it. Glad you're back home, you just did what you had to do, leave it at that.

Pam acceptance is not easy, it is a constant struggle but sometimes the best things come after a long struggle. (((Hugs)))

Sorry you have a painful knee. I've had some pain recently after the operations and know how it tends to take the sunshine out of life. Hope you find some workable solutions. The brace sounds like a good idea but would be restrictive in some ways so maybe some physio would be needed as well.

The only way I know would be to copy and paste the entire contents from the blog set ups you don't want to keep into the one you want to keep and then delete them from the old blog entry by entry but then you would lose the comments.Alternately you could just copy and republish on the preferred blog those entries you see as important with a historical note e g this was first posted on 4th September 2016.

Congratulations Sarah and Gary, you're both strong people. Sarah I know how much you have struggled to get this far, 14 years of hard, continuing caregiving surely takes its toll. And yet you maintain your sense of humour. You and I had our time together in Hawaii and I am so glad we did. Hope you have the best summer ever. Blessings on you both.

(((hugs)))

From time to time I have a melt down, at five years out from Ray's death it is not frequent but sometimes intense. Tonight I was watching a travel program and there they are, that older couple walking hand in hand along a beach and before I knew it I have tears streaming down my cheeks. Darn! I don't want to feel like this, like I am lost and alone and yes even deserted and abandoned because that's what being a widow feels like sometimes. As if that special person who like you said "till death us do part" should have been here keeping their side of the bargain. At the end of July Ray and I would have been married 50 years. I am going to find somewhere else to be alone for a few days around then as I don't want to be here wallowing in grief. I want to feel okay without forgetting Ray but with a renewed life that is my own. I know a lot of widows and widowers have managed to get over the death of their partner, find a new life, sometimes even a new partner and sometimes within a couple of years of the death of a spouse or partner. Why I haven't I don't know except that for me it is still su'n'ray.It was that way for 44 years and somehow the thought still lingers. Sometimes I talk as if Ray is still alive, I know that because a friend told me so and sometimes I am aware of that myself. Most of my stories are Ray and Sue stories. This my friend tells me will certainly put off anyone who may be interested in me. Well what am I supposed to do about that? In the first place how do I know if a person is interested in me or not? Aussie men are famously lacking in courting skills, giving little indication of their feelings. I am very poor at judging how people feel so that combination of characteristics is unlikely to enlighten me. Also I have been told a few times that I am just like " a big sister" to one or other of my male friends which is not a good analogy for anyone seeking a budding romance. So the hand holding, walking along the beach thing is never going to happen except with a young grandchild and sunsets will be seen from my verandah alone rather than the deck of a cruiser on the Rhine as part of a couple. Okay I could go on a cruise alone , walk on that beach alone, watch that sunset alone, I know that. Being alone is my speciality right now . I dodge loneliness by filling my life with a lot of busyness usually, that hasn't been possible recently because of the treatment after the operation and so alas once again my feelings have been able to ambush me. Hopefully I will be able to resume my busyness soon and feel stronger emotionally. Is this a pity party for one? I suppose it is but it is also a melting moment, one of a string of them that will happen from time to time. As long as I get over it quickly I am okay, it is when the same thoughts hang around for a longer time that I am in trouble. In the blogs over the years I have seen a lot of pity parties, after all venting of thoughts, sad, angry, why-me etc is one of the purposes of blogging. Where possible I try to express an empathy with the poster, what a friend of mine would call a "feel sorry" moment. And I am sorry circumstances have changed making the poster sad, bad, mad etc. It is not comfortable to feel that way and in the long run not healthy. As a former caregiver a lot of my friends look to me for comfort and advice. I feel that I am expected to be sympathetic and considerate. On one hand that is exactly what I do, try to comfort others, to make a difference, to help alleviate their pain. Acting in this way is part of my Christian upbringing, I was taught to treat people the way I would like to be treated. In another way I can see the value in allowing people to experience their own pain. I know the value of that myself but only in retrospect. I wish we do could get the wisdom without the pain. It is unwise to assume we have the power to change the way people feel from the people in our own family to the person we talk to in the mall. The fact is that the stranger may be more willing to take our advice than those who know us well. Familiarity breeds contempt we were told. So our nearest and dearest may not be pleased by us giving our advice and even tell us so. I stopped hitting my head on that particular brick wall long ago. But there still remains the fact that when I need advice and we do all need advice at some stage I guess I just have to be wise in who I ask. And I need to remember that a lot of advice is well meaning even if it does not exactly fit the case and be glad the person who gives me the advice likes me enough to be there for me.

Ray had a lot of resentment that he was disabled, sometimes about me being well and so not understanding his plight. That is why Scallywags, the men's stroke group he belonged to was so good for him, they were stroke-affected men so understood what it was like to be male and disabled.

Thanks Tracy.

I know I don't understand, only another stroke survivor who has similar symptoms can. And unfortunately fewer and fewer of them are reading the blogs and posting comments now. That is why sometimes I just say: " (((hugs))).

I got that way for a year or so after Ray died, I put it down to anxiety attacks. It passed after a while. It could also be related to the stroke in your case. You might mention it to your doctor, maybe there's a solution. In my case it was easier once I got my head around being alone. I rarely get that now.

Thanks Pam and Kelli. I really value you both. Got to keep on keeping on, the only way we can go is forward.