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Frustrated...caution whine ahead
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<blockquote data-quote="flutterbee" data-source="post: 171513"><p>Linda,</p><p></p><p>I haven't read all of the other responses, but I'd thought I'd lend my shoulder and my experience.</p><p></p><p>As far as the sleep, it could be a vitamin/mineral deficiency as Lisa suggested. It could be that the medications are causing some of it. It could also just be part of the disease. Cushing's causes overwhelming fatigue for one. I've found with whatever is going on with me that the fatigue seems to ebb and flow. I am always easily fatigued with physical or mental activity, but the sleeping enormous hours of the day seems to come and go. For a couple of months, I was sleeping 12-16 hours a day, sometimes more. I finally saw my doctor about seeing a sleep specialist and before we could schedule the appointment, it stopped. It was like someone flipped a switch and I went from 12-16 hours a day of sleep to 5-7. Within the last week, I'm back to sleeping a lot more again. I've slept most of the day today...I was up 5 1/2 hours total on Thursday.</p><p></p><p>I know for me, the fatigue makes me feel significantly worse. The pain and weakness and cognitive disorder is one thing. But when the fatigue hits, I feel really ill all over. This is going to sound dramatic, but I feel like my body is shutting down. I know my kidney function tests and liver function tests, etc, all come back good, but it really feels like my body is slowly shutting down. I don't know how else to explain it. Intellectually, I know different, but it's how it feels.</p><p></p><p>I understand how hard it is to try to come to terms with who are you know vs who you used to be. I struggle with that daily. And, as I posted on my b-day thread that you started for me, my mom was telling me today that she remembers me as a baby and a child and even a few years ago and she can't believe I'm the same person. Today, I had to have my son help me get out of the bed. When I woke up tonight, he was asleep and it took me almost 15 minutes to get out of bed. I'm angry at what has happened to my body and my mind. And I'm letting myself feel a bit sorry for myself, too. It's miserable and finding the positives all the time is sometimes hard and I think we need to honor our feelings from time to time.</p><p></p><p>I'm sorry that husband is finding it difficult to do all that you used to do. We want things to go on as normal and it's frustrating to not see that happen. I've had to considerably change my expectations or I would just lose my mind. I had to realize that what I did before, I did because yes, it did need to be done, but I also found gratification in doing all that I did...in making sure the house was always clean, dinner was made, etc. So, some of that was selfish needs and desires of my own and not everyone is going to share that. It is frustrating, though, because we really sacrificed for the needs and wants of others and these things are important to us and can't someone give just a little more? I understand.</p><p></p><p>I wish I had more to offer. You always have my shoulder, my ear and my understanding.</p><p></p><p>((((hugs))))</p></blockquote><p></p>
[QUOTE="flutterbee, post: 171513"] Linda, I haven't read all of the other responses, but I'd thought I'd lend my shoulder and my experience. As far as the sleep, it could be a vitamin/mineral deficiency as Lisa suggested. It could be that the medications are causing some of it. It could also just be part of the disease. Cushing's causes overwhelming fatigue for one. I've found with whatever is going on with me that the fatigue seems to ebb and flow. I am always easily fatigued with physical or mental activity, but the sleeping enormous hours of the day seems to come and go. For a couple of months, I was sleeping 12-16 hours a day, sometimes more. I finally saw my doctor about seeing a sleep specialist and before we could schedule the appointment, it stopped. It was like someone flipped a switch and I went from 12-16 hours a day of sleep to 5-7. Within the last week, I'm back to sleeping a lot more again. I've slept most of the day today...I was up 5 1/2 hours total on Thursday. I know for me, the fatigue makes me feel significantly worse. The pain and weakness and cognitive disorder is one thing. But when the fatigue hits, I feel really ill all over. This is going to sound dramatic, but I feel like my body is shutting down. I know my kidney function tests and liver function tests, etc, all come back good, but it really feels like my body is slowly shutting down. I don't know how else to explain it. Intellectually, I know different, but it's how it feels. I understand how hard it is to try to come to terms with who are you know vs who you used to be. I struggle with that daily. And, as I posted on my b-day thread that you started for me, my mom was telling me today that she remembers me as a baby and a child and even a few years ago and she can't believe I'm the same person. Today, I had to have my son help me get out of the bed. When I woke up tonight, he was asleep and it took me almost 15 minutes to get out of bed. I'm angry at what has happened to my body and my mind. And I'm letting myself feel a bit sorry for myself, too. It's miserable and finding the positives all the time is sometimes hard and I think we need to honor our feelings from time to time. I'm sorry that husband is finding it difficult to do all that you used to do. We want things to go on as normal and it's frustrating to not see that happen. I've had to considerably change my expectations or I would just lose my mind. I had to realize that what I did before, I did because yes, it did need to be done, but I also found gratification in doing all that I did...in making sure the house was always clean, dinner was made, etc. So, some of that was selfish needs and desires of my own and not everyone is going to share that. It is frustrating, though, because we really sacrificed for the needs and wants of others and these things are important to us and can't someone give just a little more? I understand. I wish I had more to offer. You always have my shoulder, my ear and my understanding. ((((hugs)))) [/QUOTE]
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