tag:blogger.com,1999:blog-4984975650770875916.post7668220629121710150..comments2018-09-08T15:36:09.778-05:00Comments on Uncommonly Disconnected: Symptom Diary...Trishhttp://www.blogger.com/profile/00066168943529936014noreply@blogger.comBlogger5125tag:blogger.com,1999:blog-4984975650770875916.post-47141285549429694422010-03-20T19:43:17.004-05:002010-03-20T19:43:17.004-05:00I still wrap my legs like that even though I shoul...I still wrap my legs like that even though I should not. I think I commented on your blog Saurou about it somewhere! I do it I have worked out to keep myself on a chair particularly an upright one as I am short and in my own weird way it helps me to stop falling off it! Enough said my guess is you get the picture.<br /><br />Are you OK Trish. I know I know I haven't emailed. But I haven't emailed anyone (hides head in shame).<br /><br />How are you?Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.comtag:blogger.com,1999:blog-4984975650770875916.post-56848466991929878372010-03-13T21:31:07.475-06:002010-03-13T21:31:07.475-06:00Thanks! No comment from someone who knows where I ...Thanks! No comment from someone who knows where I am and have been there many times themselves is unwelcome!! Saurou: I have to say that your profile pic made me laugh. Before I had 4 kids and gained more weight than I ever dreamed of I could totally wrap my legs around like that, and it was actually very comfortable and it used to freak people out! hahaha. Thanks!!Trishhttps://www.blogger.com/profile/00066168943529936014noreply@blogger.comtag:blogger.com,1999:blog-4984975650770875916.post-52950790179061609642010-03-11T21:40:56.940-06:002010-03-11T21:40:56.940-06:00The pendulum is a great image for how we do or do ...The pendulum is a great image for how we do or do not take the care we need for ourselves. This struggle you are feeling has been me, several times. We try our hardest and put everything we have in ourselves to accomplish slowly what an average person can do while having their morning coffee and not even thinking about it. We put up with the chronic pain, the acute pain from our actions, and the exhaustion of pushing ourselves to the limit. And after that, there are people that will say, "THAT is all you've done?" And sometimes that person is ourselves. I know that I remember back when my EDS was not as bad to when I could do so much, and when I see how little I can accomplish with so much effort, it hurts. <br /><br />And I've found I can go two ways when I feel this way. <br /><br />I can push harder to ignore the pain and fight even harder to do more than my body tells me I should. Can I do more when this happens? Yeah sure. Did I end up in the hospital the last time with the possibility of permanent nerve damage? Absolutely.<br /><br />The other way to go is to take an hour or two and recenter myself. Take a bath, meditate, pray--whatever. But I have to remind myself that my body is no good to me if I abuse it. And expecting it to do what my neighbor can do, is just that. Now, it normally takes my partner lecturing me and nagging me back into resting to realize that I'm getting to this point again, but once I realize that I'm getting there I can start to get back into a healthier space. Be gentle with yourself.<br /><br />I hope that made sense and wasn't too long or unwelcome. Take care.saurouhttps://www.blogger.com/profile/16662403017320806603noreply@blogger.comtag:blogger.com,1999:blog-4984975650770875916.post-17815119830361485802010-03-11T20:54:12.266-06:002010-03-11T20:54:12.266-06:00I so appreciate every word that you send my way!!!...I so appreciate every word that you send my way!!! I am sorry that you feel this in every way that I do, and even more sorry that I get a sense of hope and understanding and well being from your words. I don't take pride that others pain gives me hope, but to have someone REALLY understand is so vital to me right now!!!!<br /><br />And, just so you know I did get a "LOL" out of your comment, even if it wasn't on purpose!!! The "leaves" hilariously were not literal "leaves" but the meaning of the word in "leaving" or "left" undone. My literal leaves have long been left right where they were and the dog and the kids piled them up and jumped in them and I watched and laughed!! Hahaha<br /><br />Sweeping the kitchen floor, trash left in the corner because it feels like I am going to drop when I am done! My husband says sometimes: Have the kids help you more! And I do have them helping more than they used to, they are learning responsibility, but lately I feel a sense of guilt having them do my work knowing that they hurt sometimes as much as I do, especially if we do a great deal of cleaning and then Kimber wakes up in the middle of the night with a headache. That is heart wrenching. I am still learning, I am a horrible pendulum swinging violently from one side to the other trying to find a happy (or less painful) medium.Trishhttps://www.blogger.com/profile/00066168943529936014noreply@blogger.comtag:blogger.com,1999:blog-4984975650770875916.post-9455917598687621552010-03-11T20:35:09.774-06:002010-03-11T20:35:09.774-06:00Well this post wasn't here an hour ago as I pu...Well this post wasn't here an hour ago as I put another comment as well as my last on your last post.... Its two o clock in the morning here... why when I have had a busier day (bearing in mind my idea of busy) and am over tired can I not sleep I wonder. Anyway this is about you not me.<br /><br />Trish Trish Trish - stop beating yourself up so much.<br /><br />Who is judging you so apart that is from yourself? You can email me the answer to that one if you like.<br /><br />You are right the leaves can stay there - wearing yourself out with such low energy levels already is pointless, however much they irritate!<br /><br />Driving - will email you that on that one. I will I will I promise.<br /><br />Symptoms, a few ideas. Please feel free to discard seemingly ridiculous one's and laugh a lot at me.<br /><br />Have you looked at the possibility that you may have POTS quite badly at the minute and some of the symptoms you are having in the morning could be related to autonomic dysfunction. Just a few ideas, try upping salt intake and fluids. Really important.<br /><br />Have a medication review with a pharmacist, going through possible drug intereactions and possible rare side effects. (Really important.) If there is a rare side effect to be had I get it.<br /><br /> Twitching as you know can be caused by a variety of things,EDS. from fatigued muscles, to a common side effect of some drugs, to dehydration panic attack bla bla.... plus some medical conditions. <br /><br />Driving... I will email you.<br /><br />Be kind to yourself.<br /><br />Headaches... side effects of some pain killers (particularly some opiates) . EDS. dehydration. neck problems! Blood pressure fluctuations. Stress..... bla bla bla<br /><br />Memory Issues, some AED's cause really really bad memory problems. I know! POTS can cause memory problems. Pain, fatigue. Stress. Depression.<br /><br />As for grumpy - is this just you saying you are? I bet in reality you try your hardest every day. I think in actual fact thats some of the problem. You are exhausted before you even get out of bed.<br /><br />What you say of course it matters. BIG TIME.<br /><br />I can't move when I wake up - neither can my daughter. She gets a sort of paralysis. I get mind blowing pain - husband has to lift me very carefully to sit and then I have to gently stretch for ages before I have help to get up. The pain is usually in my spine, ribs with accompanying spasms - nice. But hip, usually joins in plus the rest.Numbness is usually followed by pins and needles - oh its good to be alive...<br /><br />So Trish Trish Trish - I do get it.<br /><br />YOU NEED more help around the house - more support generally. Whilst you are having such a flare as this. <br /><br />You are not giving in - this is real and needs to be accepted by those around you so that they can work with you to make life more bearable. <br /><br />Will have to email tomorrow now with other stuff as got computer eyes. <br /><br />Be kind to yourself.Acheloishttps://www.blogger.com/profile/13489197508242501952noreply@blogger.com