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Mentality Of Sickness


navyblue

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Does anyone have any tips on how to still take care of yourself with POTS but enjoy life and not feel defined by it? How to not have it be on the mind so much?

Symptoms like dizziness and fatigue can be a struggle, but what seems worse is how much they overwhelm me psychologically.

"Is it getting worse?" I ask myself. "Am I getting more bad days? Is it my baseline now to be much more fatigued?" Though I'm not sure what I would really do if it was....

I worry a lot about the cause...Sjogrens? My mouth feels dry every morning. Lyme? I get muscle twitches and other symptoms that are just weird. Something else? What will happen?

And all the time..."Is this the new me? Tired, dizzy, sad? Why can't I be who I was before? Can I make my life work with this?"

Symptoms are one thing, but I call this thinking my "mentality of sickness." Thoughts like this go through my head about 95% of the time. It isn't helpful, especially when I'm not making any plans about moving forward with tackling this thing, such as maybe finding a good doctor. Instead I see the thinking as DOING something about my condition, when in fact it's making my condition take over my life.

I know things are better when I don't think so much. When I went on an awesome road trip with my boyfriend, I was so distracted/happy that thoughts of illness were farther away. But it seems anytime I'm doing normal stuff like job or school, I think about feeling bad and worry about the cause and the future. Are there any good mental tricks to feel better?

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I got us a puppy! And though it might not be your kind of thing and I need to say that at times I have trouble taking care of my fur baby (others step in when I can't take care of him, we agreed on that before we got him!) he def is a great distraction! I remember there are also tricks when you set an alarm on your mobile phone several times a day and when you hear it you can purposely think of something happy or positive.

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I have been wondering the same. Even before my illness I always found it difficult to turn my brain off of whatever was troubling me at the time. I too constantly think about this illness, constantly assess how I feel. Doing things outdoors when I can helps the most, even pulling weeds, but some days that is not possible. I did some online meditation that I believe helped some but I have gotten out of the habit and need to try this again. When I talk a walk I try to look up and let my mind go blanl and just observe my surroundings. Keep trying..I think it is important to distract ourselves and not obsess.

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That's a great link, Katybug. I am thinking about getting a pet also, but I worry that would be selfish because I can barely take care of myself and my family already!

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Well ruling some stuff out with medical tests (Lyme, Sjogrens, etc.) can always be helpful, but I think it can leave you with the "Then what can it be?" Once that stuff is ruled out. I still get into that mode of thinking on particularly bad days, or when a perplexing new symptom arises.

From my own personal experience here are some things that have helped me:

-Taking daily action like wearing compression stockings and salt/ water loading, taking meds even when I'm feeling "fine" that day.

-Plan out the activities/ chores that I'm am going to do throughout the day in the morning so I don't get sidetracked into living in the comfort of not exerting myself even when I know it won't hurt me.

-Mindfulness and meditation practices, this is something I try to do each day a great book on mindfulness is called The Unteathered Soul

-I'm recognizing how much anxiety about things that will make me worse affects me (for example going out with friends when I won't know where we will park, how much I'll have to walk, what will be the plan for the night, etc) so I make it an effort to get out of the house just to be out of the house like going and getting lunch, or taking my dog to the dog park, just to keep my mind and body out of its comfort zone

-and I think most importantly is taking everything one day at a time, having patience and being ok on bad days where I can't be more active in life, and making a list of a few things that I want to do and make a priority to at least try and fail to do those things than not do them at all

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Sometimes I have caught myself in the same thought "loop" that you are describing. If I separate myself from the thought and look at, I may say something to myself like," is this thought helpful? Or how can I reframe that thought?" Looking back for me is never helpful. Anytime I go to the "I used to be able to......" , I am looking backward and not forward. You have a lot to offer in your current condition. It may be different than it used to be but I'm guessing that you now also have a new empathy, understanding and wealth of knowledge to work with. Someone said, " when I look forward, I'm anxious. When I look backward, I get depressed." That leaves being in.the here and now. Experiencing the moment.

I have also set daily goal for myself at times. I make sure they are achievable so I don't get bummed out and relevant so that I am doing something meaningful for myself.

All we can do is work toward our diagnoses but even when I'm laying in bed, I am more than a person laying in bed. Hope is a powerful tool. We will all get there. It takes time and there is a wealth of information on here.

I hear ya NavyBlue. This can be a confusing and overwhelming process. Rest, be good to yourself and God Bless.

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I think this illness requires self monitoring, and that is ok.. I have heard the expression, " don't let your illness define you" but it does define you to some degree, wether you like it or not. For me, it is a full time job, trying to keep a healthy balance between living and taking care of myself, so as not to get worse.

I have been ill since I was a child, but became fully disabled at the age of 42. I am now 60. It was a gradual decline. I think being a single parent with a lot of stress probably didn't help . Anyway, when I became disabled and could no longer work. My brain fog and exhaustion was severe. I went through a period of " morning " ....the death of my former self. Over time I learned that distracting myself ...seeing good friends, doing something fun, exercising ( swimming, warm water exercise and walking) was the best thing to do. But it has to be positive experiences. Negative experiences just amplify the misery. I now focus on what Positive things I experience, and never dwell on what I have lost. For whatever reason...this is my life. It could be worse. I have a roof over my head, and a doxie and Pomeranian that bring joy and comfort. So when I am stuck on the sofa, what can be better than having my two buddies laying with me. Anyway....My heart goes out to all of you that have this invisible illness.

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One thing POTS is teaching me is to SLOW down and that it is OK to slow down. It is teaching me self-compassion and how to take care of myself and not take my good days for granted. It is teaching me how to take care of my body. Prior to my diagnosis, I was a cigarette smoker of 30 years, I took prescription sleeping pills for over 25 years, I took psychiatric medication for bipolar disorder, I drank caffeine (a gallon a day between coffee, tea and Mountain Dew), I exhausted myself physically, and spent endless hours in worry about one thing or another (I have always been a worrier). I did not exercise regularly, I did not eat right (in fact sometimes only one meal a day). The day I was admitted to the hospital for the flare that took me down and led to my diagnosis, I stopped ALL OF IT! No more nicotine, no more caffine, no more sleeping pills or psyche meds. AND I AM GRATEFUL to have all that garbage out of my system. There are days where I am plagued with symptoms and there are days where I am not, but no matter what the day, I make sure to drink my prescribed amount, to eat correctly, to get rest when I feel like I need it, to take pleasure in watching a TV program or reading a book or listening to an audio book on days when my vision is bad. I miss hot baths but have learned to enjoy a warm soak. It was hard to change my mindset. Initially I was preoccupied with my symptoms, my heart rate, my blood pressure, but now I just listen to my body. I have also involved myself with a 12 step program for fellowship and support and spirituality and it has helped me to see things differently. I also practice mindfulness and connect with nature as much as I can. I have found delight in activities indoors when it is too hot outside. I have learned not to worry because worrying about anything including my symptoms only aggravates my autonomic nervous system and makes things worse.

I understand your distress... I really do.... In the beginning I went through all the stages of grief like someone diagnosed with a terminal illness, and I still do sometimes, the frustration of not being able to function at the same capacity even in self care activities (I still sit in the shower most of the time), I had to get my hair cut short because lifting my arms over my head to blow dry and flat iron was exhausting to me. Losing sexual functioning, the ability to have my body be MINE! I told the nurses in the hospital that I felt that my body had been highjacked and in fact it has, but I do not have to allow my mind and my mood to suffer along with my body and keeping my mood elevated will in fact make the body stuff easier to deal with. I have also been seeing a therapist to help me deal with all of this. The anger toward myself and toward God for making this be my fate, the depression and sadness, the "what ifs" and "is this going to get worse as I age"... I just can't go there. For me keeping it one day at a time, one moment at a time helps, and remembering that even though we have been dealt this diagnosis, no ones life is guaranteed, nor is the length of our life. So just seize the moment and exist within in it and do the best we can in that moment, and breathe... breathing is so important. Deep breathing exercises, biofeedback, progressive muscle relaxation, I am doing it all, and it is helping both my mind and my body.

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