all4family Posted July 6, 2009 Report Share Posted July 6, 2009 Pretty much the title says it all. I won't go into how rough things have been for me, I've had that pitty party here before. But I was just wondering what everyone here does to get by each moment when they are down sick, and that is bringing them down emotionally. What helps all of you feel better.....even if for only a little bit. Thank you all in advance. Suzy Quote Link to comment Share on other sites More sharing options...
pat57 Posted July 6, 2009 Report Share Posted July 6, 2009 I lost it when something happened to my son, I went to a psychiatrist got on Pristiq and am getting therapy, I was over the edge.The Therapist really helps because the cloud was to dark for me to see past.good luck Quote Link to comment Share on other sites More sharing options...
carinara Posted July 6, 2009 Report Share Posted July 6, 2009 In the last 10 years there were 3 occasions were i was really really sick. On every of these occasions i was bedridden for weeks, couldnt go to work for 5 months each time. I was totally dependend on other people because icouldnt do anything without severe symptoms. I was hospitalized for weeks and was very worried about my little girl because i am a single mum. All these was before i got diagnosed with POTS. Nobody knew what was wrong with me. On many occasions i thought i was going to die because my whole system seemd to be failing.In during these times i always knew that all of this must happen for a reason and that i just havent discovered the reason. I tried to be patience. I always remembered that these bad days are going to pass again some day, like they had before. I tried to change my perspective looking at my condition. Maybe it sounds funny but i tried to look at my situation as if i would make some kind of a a scientific work out of it. Like a researcher searching and finding out what was happening to me. Just as one day i would hold amedical speech in front of many doctors presenting them all the insight of this illness or writing a book about it. This changed my point of view into another directon.Being a spiritual person also helps me a lot. I also always try to find the blessing in every situation.Wishing you all the best.carinara Quote Link to comment Share on other sites More sharing options...
persephone Posted July 6, 2009 Report Share Posted July 6, 2009 I've gotten really into meditation and mindfulness- it trains you to focus only on the present moment, without feeling scared of the past or present. THere's currently a clinical trial in OXford that uses this to treat clinically depressed people,and the results so far are phenomenal- it's shown to be more effective than antidepressants and CBT combined in some folks.I've just got my hands on two great books, recommended to me by a specialist:Full Catastrophe LivingandTHe Mindful Way Through Depression.They are great texts. Good luck! Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted July 6, 2009 Report Share Posted July 6, 2009 Sometimes a good cry helps. But most of the time I cuddle one of the kitties - they have been real lifesavers for me! Quote Link to comment Share on other sites More sharing options...
mountain girl Posted July 6, 2009 Report Share Posted July 6, 2009 Pretty much the title says it all. I won't go into how rough things have been for me, I've had that pitty party here before. But I was just wondering what everyone here does to get by each moment when they are down sick, and that is bringing them down emotionally. What helps all of you feel better.....even if for only a little bit. Thank you all in advance. SuzyI can't say I really have anything specific, but I try to tell myself tomorrow is a new day and will hopefully be better. It also helps me to have this support group and know that others get sick and tired of dealing with having these chronic conditions too. I have also started rating how I feel each day on my calendar with 1 being the worst and 10 being the best, that way when I am having some bad days I can go back and remind myself that I have had some good days too. And yes, I understand that whenyou feel bad physically, it gets you down emotionally too. For me, I often feel pretty good early inthe day but if I have to work evening shift I get so tired I start to feel really tired and like I have to cry. I can relate to having a good cry because it feels like a stress release. I do not like to cry but holding it in takes more energy. Hang in there! I definitely try to focuson something else if I can like find a good t.v. show I like. Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 6, 2009 Report Share Posted July 6, 2009 Sorry to hear that you are still struggling... I am in the same boat, so at least you can smile a little knowing that you have company. If you are a spiritual person, perhaps reading the Bible or a book on faith in difficult times would help you. I personally find comfort in the promise made in the poem "Footprints In The Sand." Other than that, I enjoy having someone gently rub my feet or play with my hair while I am laying down. Or I lay in bed with candle light and listen to music and do my best to convince myself that this is just all a bad dream. Hang in there Suzy and don't give up! I will be praying for you.~ Michelle (Broken_Shell ) Quote Link to comment Share on other sites More sharing options...
Guest tearose Posted July 6, 2009 Report Share Posted July 6, 2009 Do whatever helps!!!I first try to call it like it is...I'm in a potshole and need time to recharge, usually a week is needed.I do alot of visualization, meditating and healing there.I focus on what to do to get stronger, and then try to see if I can learn anything about what brought me there and how to possibly avoid this in the future.My lovely "potshole room" is decorated lovely and I have all the comforts I need to do all the healing needed. I rest and work there.For some immediate help, try listening to some healing to "you" music. I recently discovered Celtic music and will wear headphones and feel the music pulse through my nervous system and soothe and fill me with joy.Find a good friend to share with or you can pray, speak with a trusted mentor...just know that when you are down it is your body's way of saying it needs a time out. Try to find a way to not be self critical and just move through the healing.best regards,tearose Quote Link to comment Share on other sites More sharing options...
Broken_Shell Posted July 6, 2009 Report Share Posted July 6, 2009 Do whatever helps!!!I first try to call it like it is...I'm in a potshole and need time to recharge, usually a week is needed.I do alot of visualization, meditating and healing there.I focus on what to do to get stronger, and then try to see if I can learn anything about what brought me there and how to possibly avoid this in the future.My lovely "potshole room" is decorated lovely and I have all the comforts I need to do all the healing needed. I rest and work there.For some immediate help, try listening to some healing to "you" music. I recently discovered Celtic music and will wear headphones and feel the music pulse through my nervous system and soothe and fill me with joy.Find a good friend to share with or you can pray, speak with a trusted mentor...just know that when you are down it is your body's way of saying it needs a time out. Try to find a way to not be self critical and just move through the healing.best regards,tearoseI agree... wearing headphones with soothing or sensual music can help take you away to a better place for a little while. Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 6, 2009 Report Share Posted July 6, 2009 I really like the calendar idea. Marking out our good days, or at least better days, shows us that the bad ones aren't forever. I'm also on an A/D and see a counselor, especially when too many things come up and I'm overwhelmed. I wish you the best, Suzy, and to feel better very soon!Hugs, Jana Quote Link to comment Share on other sites More sharing options...
Dawg Tired Posted July 6, 2009 Report Share Posted July 6, 2009 Treasure your good days, sleep through the rest... Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 6, 2009 Report Share Posted July 6, 2009 I get very very small. As best I can, I bring myself back to the tiny space that is this moment. Even though the symptoms feel familiar and last time they last 'this long' or meant I was headed for 'such-n-such' ... I remind myself that these are my mental stories and I try to just let them be, without believing in them. (Truth is anything can happen with this illness, and at anytime everything can turn on a dime.)As I bring myself back to this next breath, I 'tune in' to what sounds are around me. The song of a bird from outside my bedroom window, the hum of the air conditioner, the car alarm in the distance. One by one I recognize and become aware of my environment ... the world at large ... of which I am part of this amazing web of interconnectedness.Even with the pain, I try and focus on just one small part of my body. A tiny spot perhaps the size of a dime and just watch that one area and notice the size, temperature, 'texture' or movement. Cool thing about watching ANYTHING for a while is that we get to experience first hand and for ourselves that EVERTHING CHANGES. The pain (this one tiny spot) eventually shifts, the car alarm stops, the particular bird we heard before has flown away. Even what at first appeared to be a constant drone of the air conditioner when focused on for awhile becomes rich with lots of different 'mechanical melodies' and even silence embedded in the song.In a nutshell (only small pun intended) .... I wait it out!!!Hugs and giggles.~EM Quote Link to comment Share on other sites More sharing options...
Csmith3 Posted July 6, 2009 Report Share Posted July 6, 2009 For me, a bad patch means poor physical and emotional health. To get out of it requires an improvement in physical symptoms. Without this, I cannot stop "feeling low".So it's a case of resting and sleeping and trying to eat reasonably well. And waiting until things improve. In the meantime, if I feel like wallowing in sad movies etc, I do. I am extremely miserable to my poor friends and family (think very grumpy teenager). Luckily, they have come to realise that the situation is temporary and to ignore my extreme pessimism in these situations! As soon as I start feeling better, hey presto, I'm happy again and can get back to normal. But I can't force the good/optimistic mood and, if anything, trying to achieve this whilst feeling ill makes me worse.Hope your situation turns around soon. Best wishes Quote Link to comment Share on other sites More sharing options...
all4family Posted July 6, 2009 Author Report Share Posted July 6, 2009 You guys are a great bunch! It sure does help me when I know I am not alone with this. I am reading and taking in what everyone says. It feels like my lifeline right now ! I am hoping to pull out of this soon. I think I have asked my husband a hundred times if he thinks I will get better. I can't even stand for more then a minute right now. I will reply more later when I've got a little more energy and when I am making more sense. Thank you all so much again. Hugs and thank you'sSuzy Quote Link to comment Share on other sites More sharing options...
EarthMother Posted July 6, 2009 Report Share Posted July 6, 2009 I think I have asked my husband a hundred times if he thinks I will get better.Isn't that funny ... I do the same thing, have for all the years I can remember. And he always answer ... "Of course."So here's a big OF COURSEto help you through today.~EM Quote Link to comment Share on other sites More sharing options...
janiedelite Posted July 7, 2009 Report Share Posted July 7, 2009 Even though I've had POTS for 3 years, it's only been the last year that I've been totally disabled from it. At first, the ups and downs of dysautonomia made me so frustrated!!! Why couldn't I just be normal, or at least have a stable, predictable disease? It seemed it would almost be better to just stay flared up all the time sometimes because adjusting from semi-funtional to non-functional and back any given moment was horrible. Now that I've gone through quite a few flares with "good" times in between, I have a little more patience. It's hard, though, when I'm feeling well enough not to want to take on the world (or redo the kitchen ), but I know that another flare will come sometime and then I'll regret having taken on the responsibility. So, I guess totally readjusting my expectations for myself and what I can do has helped. At least when I have to lay down for days in a row, I don't feel like I'm shirking responsibility. And if activity or stress does bring on a flare, then I do everything I can to get out of it especially avoiding stress! I make it my job to "don't worry, be happy!"During my worst days, I just remind myself that I am loved even when I can't do much... I'm comforted often by my mom (who also has a chronic illness, as you know and knows how it feels), my hubby reminds me I might get better, and I just try to keep my mind occupied any way I can so I don't get too depressed (books on tape, videos, music, called someone to see how they're doing even if I can't talk much in return . And of course, getting on this site helps me to get my mind out of myself for a bit while realizing I'm NOT ALONE!I must add that the good times seem so much sweeter since I've been sick. I think I appreciate them more.I'm sorry you're still feeling so poorly, Suzy. Please hang in there! Quote Link to comment Share on other sites More sharing options...
Rachel Posted July 7, 2009 Report Share Posted July 7, 2009 We all get down sometimes. Life with a chronic illness is hard. There are a few things I do that help me to cope with those really down days, and get to feeling better again (not feeling better physicially, but emotionally and spiritually). I read the Bible; I pray. I like to read "When God Weeps" by Joni Eareckson Tada, a quadrapalegic who understands suffering. I like to be with my son and/or my husband and remember how blessed I am to have them. I rest and watch tv, sometimes with my family, sometimes alone if I need the peace and quiet. I like to chat with a good friend. I pray and rest and sleep. I hope you're feeling better soon.Rachel Quote Link to comment Share on other sites More sharing options...
Brye Posted July 7, 2009 Report Share Posted July 7, 2009 Sometimes I just need a good cry!! I love it when I can hold my babes tight and just have a good cry. I don't want my kids to know I'm sick but when I have just my 2 and 1 year old to myself I can get a huge hug and cry in all at once. My kids (7,5,2,and1) keep me going and I just look at them and remind myself how blessed I am to have 4 beautiful, healthy, children. My pity parties can only occur during certain hours because I try not to cry in front of my older kids. I really don't want to tell them I have this illness but it's hard to hide it from them. They're getting so smart!! At some point I'm going to have to explain it to them but I just keep hoping it'll go away. I played college basketball and my 7 year old keeps asking me to come out and shoot hoops with him. Some day I will!!!!Brye Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 7, 2009 Report Share Posted July 7, 2009 i research. Quote Link to comment Share on other sites More sharing options...
firewatcher Posted July 7, 2009 Report Share Posted July 7, 2009 i research.Birds of a feather? I also research. (can you tell?)But I also pick up an engrossing book or watch a good movie to escape for a while. Reality can stink and must be escaped every now and then!I don't know how to add the link, but the "hope and inspiration" thread was a good one. Quote Link to comment Share on other sites More sharing options...
carinara Posted July 7, 2009 Report Share Posted July 7, 2009 I forgot to mention, that i keep a diary since many years. Every evening i write down what happened in during the day, how my health was and what there was for me to be proud and thankfull for. Since 2004 i write my diary into my MDA wich is also my mobile phone, that way its just a click away to find out how i felt on each and every day. Writing and reading up on my diary for so long, i can truly see a pattern of bad periods followed by better periods. When iam real bad i find notes were i felt as bad as that before followed by better times. Thats helps me a lot. Quote Link to comment Share on other sites More sharing options...
all4family Posted July 7, 2009 Author Report Share Posted July 7, 2009 Hi Everyone,Thank you all so much for your wonderful ideas, encouragement, and support. I know there is a lot to be said about emotions, and our health, and it must be true. I read all the encouraging things everyone here does, and what I got was that I feel guilty when I can't do anything. So yesterday I gave myself "permision" to be sick. My kids gave me massages, and we had a movie marathon day. I found a comfortable position that I was able to watch the movies in, and you know what is funny? I was EXHAUSTED!! But I just was fighting that feeling instead of taking care of myself. I was critisizing myself for what I couldn't do, instead of caring for myself the way I needed to. I was feeling guilty, and stressed about the unfinished kitchen, and the messy (very messy at this point!) house. I was mimicking, and repeating what I have heard from doctors about it's all in your head, or if you would just get yourself busy you wouldn't have time to think about it. You all gave me the "permission" I wasn't giving myself to go ahead and just be sick. And you know what? I got up this morning, and was able to pick up some stuff in the kitchen. Walked around for about 15 minutes just doing some things, and then I got dizzy, so I went back and laid down. But I got up to begin with, so that gives me hope. Oh and EM, I told my husband that you do the same thing, and what your husband always says, and he was really happy, because now he knows what to say to me!!! Thank you all so much, for helping me find ways to get myself back up. If I didn't have this group I would still feel sick, and on top of it would still be beating myself up. At least now I just feel sick!! Take care everyone! Hugs and Many many thanksSuzy Quote Link to comment Share on other sites More sharing options...
potsgirl Posted July 7, 2009 Report Share Posted July 7, 2009 Yay, Suzy! How terrific that you had a little better of a morning, and more importantly, felt better about yourself. Bravo. Let's all take the little miracles we do receive, and appreciate them to their fullest.Cheers,Jana Quote Link to comment Share on other sites More sharing options...
all4family Posted July 8, 2009 Author Report Share Posted July 8, 2009 Thanks so much Jana,Sometimes I forget to be grateful for the little things. Unfortunatly the rest of my day wasn't as good, but at least that gave me hope. Take care.Hugs Suzy Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted July 8, 2009 Report Share Posted July 8, 2009 For me I almost think i could accept POTS more if it was constant. I dont understand how I can gradually improve over time and live relatively normally at times, go on holidays and feel great, then come home and suddenly one day just go right back to square one for no apparent reason... I dont get why POTS appears paradoxical in that for some symptoms of sympathetic excess are actually symptoms of the opposite... very confusing!! Quote Link to comment Share on other sites More sharing options...
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