Nan

How to stay positive

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I need advice how do you all stay positive with everything you are going through?

I started getting sick last year and have been semi positive up until this summer when it became apparent that I would not long be able to get back to my old life.  It is compounded with the fact that I am having trouble with my significant other. I current have no other options except to live with him. My family walked away from me and my friends. I don't have that much finances to take care of my self or the ability to take care of my self fully. So he tells me last night in an ultimatum that I need to be more positive/happy or its over.  Need some advice on how to accomplish this when my whole life is in turmoil. 

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Do you have a problem with negative thought processes?  Thought processes can be changed.

But emotions?  Well, you feel whatever it is that you're feeling.  And if he's going to refuse to accept you because you're having emotions about being in a difficult situation, then...

I think a better question is how to get out of an emotionally abusive relationship?  Have you applied for social security disability?  Is there any kind of work you could do even part time or working from home?  Do you have access to therapy?  You area dealing with so much here, it's complicated.  I don't think your relationship is the problem, but your current financial dependence on him.
 

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I won't comment on the relationship issues because I have never been there.  I will say one book, How to be Sick (I think) by Toni Bernhard really helped me accept my new circumstances.  It's from a Buddhist perspective but is in no way in your face.  She also has dysautonomia and other books.  Another very helpful book for both you and your significant other so you can understand what you are going through is The Dysautonomia Project (I think I have the titles correct, brain fog today).  

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I read the The Dysautonomia Project book and highly recommend it.  Also, Together We Stand: Riding the Waves of Dysautonomia was also very informative.  However, I'm also looking for a book that's less about symptoms and more about accepting your new life.  I guess something more along the lines of living with a chronic illness so I'm going to check out the suggestion above.  It took me a while to get there, but now I  try to thank god every day I wake up breathing.  I've had to lower my goals - wake up breathing is one and getting to work is another biggie.  Some mornings I wake up stunned that I'm still here considering how much my heart was acting up the night before.  What also helped was a lot of friends in my age group that were totally healthy started dying so that has helped me remain positive.  A co-worker of mine recently died about 4 months after being diagnosed with a very aggressive - she left behind two small children .  I think of her every day and my goal is to hang in there for my children.  I try to think that every day is a gift - some days it feels like I've been handed the booby prize but I'm still breathing and that's all that counts.

I'm sorry you are going through so much turmoil, Nan.  The only thing I can think to do is to try to educate your husband about your condition so he can see it more from your eyes.  Mine wasn't always the most patient (I have to admit, if I didn't experience this first hand I wouldn't understand it either) but by having him come with me to the major appointments, I think he gets it a bit better.  I'm lucky in that he likes to drive (I can no longer drive) and doesn't mind taking road trips to new doctors.  Since we didn't have a lot of time or money after the kids and me not being so well for years we haven't gone on vacation much so when I had to take medical road trips, I tried to make them fun and talk myself into thinking I was going on a trip.  (It sounds screwed up but if it wasn't for the Cleveland Clinic trip I never would have gotten to see the Rock & Roll Hall of Fame or the Christmas Story Museum.  My trip to Vanderbilt enabled me to see the Johnny Cash museum and a full-size replica of the Greek Parthenon.  When we went to Johns Hopkins our first stop was at some rinky-dink library to see a bronze statue outside of Frank Zappa's head.  I know this sounds odd but I find it helpful to laugh at myself - it is better than crying (but I do a lot of that too - usually by myself at night).  I have a sister who is also going through a host of medical issues - not dysautonomia but autoimmune issues, possibly MS - and we just look at each other and shake our heads and think "how the heck did this happen"  I personally don't know anyone who has seen as many doctors as I have or travelled all over to see them. 

Try to find something beautiful and meaningful about each day - whether it be a book you can get into, a tv show, making a craft or enjoying a piece of cake.  I try to focus on the little things because that distracts me from the big picture (such as how the heck are we going to pay all these doctor bills and the fact that my credit card is maxed out).  The other night I was really tired but the bed sheets were on for what seemed like forever so I used up every last bit of energy I had to change them (I was a bit p.o.'d that my husband would never do it) but then I lost my attitude and sat on the bed and enjoyed the smell of my new crisp sheets and a bowl of yummy guacamole while watching an old movie.  When I come home I sometimes, if I can, I walk a tiny bit out of my way so I can pass this big tree where all the birds are singing in it every evening.  It really helped me to lower my standards and find joy in little things. 

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I recommend finding someone, anyone, you can talk to about it, even if it is a mental health hotline, or maybe a priest/minister/rabbi/imam/whatever.  Also, think of (and write down) at least one thing each day for which you are grateful.

Staying positive is an act of the will, not of the emotions.  Difficult, but worth working at it.

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There is a book called "God Needs Me" written by a lady named Lynn Foxx Adams. She suffers from dysautonomia and was diagnosed when hardly anything was known about it or how to treat it. Obviously not everyone's cup of tea, but I think could still be beneficial as she talks about dealings with family, raising her children, trying to to "act normal", going to court and lots of other things. 

The book was helpful on a personal level but more so for my family, and our relationship. It was very healing for my mom and I, our relationship was a bit rocky in the begining. So I would recommend it to anyone, and have, even my non-christian friends.

My faith in God is a big part of who I am and trusting God has brought me peace and Joy, that's how I stay positive. I have also found that serving others helps to shift my mindset and when I'm not focused solely on myself it's easier to remain cheerful. That is just what works for me, obviously everyone is different.

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When i first got sick I was 17, I was really really sick. Horrible random health issues, and erythromelelgia on top of my POTS symptoms. They were all brushed off as me being clinically depressed. The brush off made me more depressed while I got sicker. I became suicidal and tried killing myself one night after about a year of being bedridden and not leaving my house. Was in the psych ward for a while afterwards.

Now I am happy and live a semi normal but restricted life but my entire thought process has changed.

But maaaaaaan it has been some work getting here. And when i say work, I mean real work keeping my mind occupied. I still get depressed often but I get myself out of it and don't wallow. I read a ton, draw, paint etc. Thing I can do while relaxing that are easy on my body. But the negativeness that comes with these types of health issues is never ending. To this day I am still looking for answers and see plenty of doctors on a regular basis. It is part of my life, but I've accepted it.

I would say some things that help are;

Don't stay up late googling your symptoms, don't google diseases, it'll only worry you more
Don't focus on every thing your body does wrong, each pain or bruise or whatever happens in normal bodies (this was hard for me to do)
Read books, books helped me so much!!!!!
Keep your mind busy, maybe join a positive online community that is for something other than health issues. The less your life revolves around it the better you will be.
Know that people will NEVER understand, it's just part of it. They can only understand to a certain point but there is a wall, and it's better you don't force that expectation on people
Just keep yourself busy. Doesn't matter what it is, idle handle are the devil playthings as they say. Well an idle mind lets your thoughts wander, which can turn into a bottomless pit.
Look for online friends if you can, maybe not ones with health issues, or maybe even some with it, doesn't matter, just find someone to talk to!

I do hope you feel better. I've been "sick" over 15 years, been in and out of hospitals/doctors etc. It's a long road, but being negative will make it worse for yourself and those around you. And I truly understand that it is easier said than done, but if you're working towards it somehow you can change. But by not trying to change, nothing will improve.

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"If you're still breathing, it can't be that bad" Jon Kabat-Zinn

I just ordered the How to be Sick book. Accepting reality has not been easy for me. I used to be totally hyper and my career is based on being 'super smart'...and that is a joke when you have brain fog everyday. But, after years of illness, I'm still relatively happy (just coming out of a few months of really sour mood anger right before getting diagnosed...the diagnosis definitely helped). Here are some ideas that might help:

Watch a funny movie everyday, right before your boyfriend gets home. Then, tell him about the funny parts. Try to find funny stories to tell; practice them with your cat.

Play practical jokes.

Start a gratitude journal. Write down five things you can be grateful for each day.

When the negative thinking comes up, do ANYTHING to redirect your attention. Maybe get a good computer game (I like Civilization VI) or start knitting or stand on your hands or lift up your legs and 'draw' the alphabet with your toes or sing out loud. Just do anything to break the negative thinking habit. What you do doesn't have to be nobel prize worthy, just try to find something that is neutral (not unskillful).

Maybe your boyfriend is trying to yank you out of some depression or maybe you need to cry on someone else's shoulder for a while to give him a breather. I don't know but it would be good to be in a living situation that accepted you as you are with people who can see your glorious true nature in the midst of all the dysautonomia ****. But, having a safe shelter comes first so try to make the best of where you are (assuming its a safe shelter)!

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Looks like everyone has different ideas for how to stay positive. My husband helped me become more positive by calling my life the "new normal" for me. I cannot do all the things I want to do or used to do, so I have had to find new things that bring me joy. Have you ever watched the Ellen show? Comes on abc at 4pm EST. She often has things on that make me laugh, and comes on each week day. Also, our cable company has a music channel called soundscapes, and plays relaxation type music, and shows pretty scenary along with positive uplifting quotes. Sometimes I find a quote I like and write it down, and put it on the kitchen window, or someplace I will see it everyday. 

I also listen to talk radio while I am resting, WMRA. I feel it is a way I can learn new things. My husband and I share something each evening from our day, so I can tell him something funny I saw on the Ellen show, or something that was being discussed on the radio or news.

I looked up yoga that can be done in bed, and do a few of those stretching exercises everyday. I think being able to do something (little as it may seem) makes me feel better!

I still go through spells of feeling down, and I think that is normal when dealing with a chronic illness. Maybe your significant other could find some joy in bringing you happiness on those days, like finding some music on the computer he knows you like, or just giving you a hug and asking what can he do? I have to say I am blessed by having a husband that does these things, and just lets me cry if I need to. I think it has helped me to have fewer down days.

My own mother does not understand the illness, and that has been difficult, but I am learning not to dwell on that.

It is better to light a candle, than curse the darkness. By Eleanor Roosevelt (that is one of the quotes I like, that can be applied to life:)

 

 

 

 

 

 

 

 

 

 

 

 

 

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