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<blockquote data-quote="Marguerite" data-source="post: 354798" data-attributes="member: 1991"><p>Same as me. He's a good rheumatologist, but I won't go back to him because I'm clearly not interesting enough to him, plus I don't like doctors who have a "revolving door" approach, where all patients get the same diagnosis and same treatment. Especially with CFS, especially when you have other stuff happening, you need an individual approach. That's why I recommend you be the boss of your own treatment team, because you know you, best of anybody.</p><p></p><p>Don't worry if your GP doesn't know CFS. She knows you, and she believes in you. That is more important. As long as she keeps on looking, keeps on doing the basic "Let's make sure you haven't got anything else nasty going on" tests.</p><p></p><p>Keep those specialists in your stable, the ones already on board. Go back for your check-ups, make sure they write back to your GP. But I agree, there's no point searching for the magic specialist with the miracle cure - I say I had one of the best in the world, and HE couldn't cure me. But at least he didn't promise to, unlike some who promised others and are now lying low...</p><p></p><p>You sound like you're already doing all the right things. Just because I wrote stuff down in ly "to do" list doesn't mean I think you need a kick up the rear - far from it. I just put it ALL down, including stuff you're probably already doing. I wanted to validate the stuff you already have under your belt.</p><p></p><p>It's horrible, how this feels. The brain fog is nasty in how it can sap your self-confidence. I value my brain and to feel like I was losing that too, was awful.</p><p></p><p>Here are some tricks that have worked for me:</p><p></p><p>1) Keep your brain active, but when you feel mentally tired, take a break. Don't push your brain harder than you can handle at that moment. SO to that end - I have several books going at the same time, from something at kids' level (I read all the Babysitters Little Sister books, officially so I could discuss them with my kids) to tertiary level research journals to the classics. I also do Sudoku or other brain puzzles. I keep lifting the bar where I can, finding more difficult ways to do something easy mentally, like doing Sudoku without writing in those little numbers as clues; I try to do it all in my head. But I've worked up to this over time. I have multiple Sudoku books everywhere so I can pick it up and just do a bit more whenever I have a spare minute. But I also find that often, Sudoku puts me to sleep.</p><p></p><p>2) Find a hobby that you can work on a little at a time. Crochet is good, because again, you can put it down easily. TimerLady paints watercolours, which helps her emotionally a great deal. I write, but I also am working towards taking up oil painting. I've been watching a TV show which explains how to do it. I won't go to classes. I've never been to writing classes, not official ones. But I've taught them in recent years! I never thought my dabbling in writing would take me there. I've begun knitting (but find I have to go carefully and prop my shoulders so they're not taking the workload). I'm knitting squares to make blankets, following a program done by a Sydney radio station, "Wrapped With Love", who make knitted blankets to send to refugees around the world. I'm thinking of upping the ante again (for the mental stimulation) and I recently knitted a Fairisle square. Just to prove to myself that I could. Next - I might start knitting a jumper for my first grandchild. No, there isn't one on the way yet, but I know how long this could take me to knit!</p><p></p><p>3) Recognise everything you do in a day. I find the Morning thread is good for me that way, because for me, the thread happens at the end of my day (thanks to being in Australia!) so it gives me a chance to look back over what I have done for the day. Value everything you do. Recognise the effort you have put in, just to sit in a doctor's waiting room. If you feel tired, know that you are justified to feel that way because you have expended that energy. Look back on your day at all the things you have achieved and be proud of everything you accomplished. If all you did was get to a doctor, that is still an achievement to be proud of. If all you did was the cooking, the juggling of education for the kids plus timing the other family needs, then you have achieved more than you think. Time spent on yourself is also an achievement to be valued. And if your difficult children dump on you and tell you that you are a lousy excuse for a mother - you are telling yourself you are not, and frankly in tis, you have more experience than they do; your opinion counts for far more.</p><p></p><p>Heather, it is hard to realise this when you are feeling really down, but there IS joy in life, even when you are struggling with CFS. When you can only walk slowly and short distances only, it is the slow walker who is more likely to see the butterflies and find the four-leafed clovers. But sometimes you need to actively work on finding that joy every day.</p><p></p><p>I had to go to hospital for a few weeks in 1997. It was bad timing for us - the day I was sent to hospital was the same day we were told that difficult child 3 was autistic and difficult child 1 had Asperger's. In fact we had just left the pediaitrician's office, still stunned form the news, and were walking back to the car when my mobile phone rang. It was the Professor telling me I was supposed to be in the hospital, they had a bed for me and to go straight there. So right when we were trying to come to terms with the stunning news about our boys, husband & I were separated. husband had to cope with the house and the kids, plus handle all the appointments that suddenly filled our lives - and I was in hospital. I was the one who usually did all this, who kept things running. We lived too far from the hospital for husband & the kids to visit much, so we really were apart. We needed to be with one another. </p><p></p><p>naturally I was depressed. The psychiatrists assessed me (part of the multidisciplinary approach) and declared I had dysthymia. A psychologist who I had known separately (thanks to my long-term advocacy) saw me immeidately after the psychiatrists told me their diagnosis and her response was, "Rubbish! If you're a bit down right now, you have very good reason. That is not necessarily dysthymia; it is reactive depression. You don't need pills. You need your family."</p><p></p><p>I'd been told that dysthymia meant that while I wasn't seriously depressed, my mood was constantly low and I wouldn't get the same enjoyment from, say, a sunset. So as I watched the sun go down over the sea that evening (my hospital room had a great view!), I thought hard about it. I studied that sunset and observed the colours changing and the way the breaking surf reflected back the colours. I forced myself to only think about that sunset and to cast my mind back to happy times when those colours reminded me of good things. That deep apricot colour of the sky was the colour of a favourite shawl I used to borrow from my great aunt. I remembered the feel of the silk tassels around my shoulders. That magic twilight silver-blue of the sea was my favourite silk coat. It became a luxurious silken sunset. After the sky was dark, I thought again - did I enjoy that sunset? Yep. Was I capable of enjoying beautiful things in life; those unexpected moments of joy? Certainly, even when life was throwing crud at me.</p><p></p><p>Since then I've deliberately sought out those moments of joy in the midst of yuk. They are there but sometimes hidden. But they are like healing medication, massive pain relief for the soul, when you find them.</p><p></p><p>Spending a few minutes each day looking for the fragments of joy, is time well spent and yet more achievement.</p><p></p><p>Value it all.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 354798, member: 1991"] Same as me. He's a good rheumatologist, but I won't go back to him because I'm clearly not interesting enough to him, plus I don't like doctors who have a "revolving door" approach, where all patients get the same diagnosis and same treatment. Especially with CFS, especially when you have other stuff happening, you need an individual approach. That's why I recommend you be the boss of your own treatment team, because you know you, best of anybody. Don't worry if your GP doesn't know CFS. She knows you, and she believes in you. That is more important. As long as she keeps on looking, keeps on doing the basic "Let's make sure you haven't got anything else nasty going on" tests. Keep those specialists in your stable, the ones already on board. Go back for your check-ups, make sure they write back to your GP. But I agree, there's no point searching for the magic specialist with the miracle cure - I say I had one of the best in the world, and HE couldn't cure me. But at least he didn't promise to, unlike some who promised others and are now lying low... You sound like you're already doing all the right things. Just because I wrote stuff down in ly "to do" list doesn't mean I think you need a kick up the rear - far from it. I just put it ALL down, including stuff you're probably already doing. I wanted to validate the stuff you already have under your belt. It's horrible, how this feels. The brain fog is nasty in how it can sap your self-confidence. I value my brain and to feel like I was losing that too, was awful. Here are some tricks that have worked for me: 1) Keep your brain active, but when you feel mentally tired, take a break. Don't push your brain harder than you can handle at that moment. SO to that end - I have several books going at the same time, from something at kids' level (I read all the Babysitters Little Sister books, officially so I could discuss them with my kids) to tertiary level research journals to the classics. I also do Sudoku or other brain puzzles. I keep lifting the bar where I can, finding more difficult ways to do something easy mentally, like doing Sudoku without writing in those little numbers as clues; I try to do it all in my head. But I've worked up to this over time. I have multiple Sudoku books everywhere so I can pick it up and just do a bit more whenever I have a spare minute. But I also find that often, Sudoku puts me to sleep. 2) Find a hobby that you can work on a little at a time. Crochet is good, because again, you can put it down easily. TimerLady paints watercolours, which helps her emotionally a great deal. I write, but I also am working towards taking up oil painting. I've been watching a TV show which explains how to do it. I won't go to classes. I've never been to writing classes, not official ones. But I've taught them in recent years! I never thought my dabbling in writing would take me there. I've begun knitting (but find I have to go carefully and prop my shoulders so they're not taking the workload). I'm knitting squares to make blankets, following a program done by a Sydney radio station, "Wrapped With Love", who make knitted blankets to send to refugees around the world. I'm thinking of upping the ante again (for the mental stimulation) and I recently knitted a Fairisle square. Just to prove to myself that I could. Next - I might start knitting a jumper for my first grandchild. No, there isn't one on the way yet, but I know how long this could take me to knit! 3) Recognise everything you do in a day. I find the Morning thread is good for me that way, because for me, the thread happens at the end of my day (thanks to being in Australia!) so it gives me a chance to look back over what I have done for the day. Value everything you do. Recognise the effort you have put in, just to sit in a doctor's waiting room. If you feel tired, know that you are justified to feel that way because you have expended that energy. Look back on your day at all the things you have achieved and be proud of everything you accomplished. If all you did was get to a doctor, that is still an achievement to be proud of. If all you did was the cooking, the juggling of education for the kids plus timing the other family needs, then you have achieved more than you think. Time spent on yourself is also an achievement to be valued. And if your difficult children dump on you and tell you that you are a lousy excuse for a mother - you are telling yourself you are not, and frankly in tis, you have more experience than they do; your opinion counts for far more. Heather, it is hard to realise this when you are feeling really down, but there IS joy in life, even when you are struggling with CFS. When you can only walk slowly and short distances only, it is the slow walker who is more likely to see the butterflies and find the four-leafed clovers. But sometimes you need to actively work on finding that joy every day. I had to go to hospital for a few weeks in 1997. It was bad timing for us - the day I was sent to hospital was the same day we were told that difficult child 3 was autistic and difficult child 1 had Asperger's. In fact we had just left the pediaitrician's office, still stunned form the news, and were walking back to the car when my mobile phone rang. It was the Professor telling me I was supposed to be in the hospital, they had a bed for me and to go straight there. So right when we were trying to come to terms with the stunning news about our boys, husband & I were separated. husband had to cope with the house and the kids, plus handle all the appointments that suddenly filled our lives - and I was in hospital. I was the one who usually did all this, who kept things running. We lived too far from the hospital for husband & the kids to visit much, so we really were apart. We needed to be with one another. naturally I was depressed. The psychiatrists assessed me (part of the multidisciplinary approach) and declared I had dysthymia. A psychologist who I had known separately (thanks to my long-term advocacy) saw me immeidately after the psychiatrists told me their diagnosis and her response was, "Rubbish! If you're a bit down right now, you have very good reason. That is not necessarily dysthymia; it is reactive depression. You don't need pills. You need your family." I'd been told that dysthymia meant that while I wasn't seriously depressed, my mood was constantly low and I wouldn't get the same enjoyment from, say, a sunset. So as I watched the sun go down over the sea that evening (my hospital room had a great view!), I thought hard about it. I studied that sunset and observed the colours changing and the way the breaking surf reflected back the colours. I forced myself to only think about that sunset and to cast my mind back to happy times when those colours reminded me of good things. That deep apricot colour of the sky was the colour of a favourite shawl I used to borrow from my great aunt. I remembered the feel of the silk tassels around my shoulders. That magic twilight silver-blue of the sea was my favourite silk coat. It became a luxurious silken sunset. After the sky was dark, I thought again - did I enjoy that sunset? Yep. Was I capable of enjoying beautiful things in life; those unexpected moments of joy? Certainly, even when life was throwing crud at me. Since then I've deliberately sought out those moments of joy in the midst of yuk. They are there but sometimes hidden. But they are like healing medication, massive pain relief for the soul, when you find them. Spending a few minutes each day looking for the fragments of joy, is time well spent and yet more achievement. Value it all. Marg [/QUOTE]
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