What do you do when you're at your wits end?

[seaboardbc]

I was diagnosed with POTS 3 years ago. For those of you who know me, I have managed to keep a jovial (well maybe that's a little strong), okay positive and upbeat attitude through it all. Oh sure, I have bad days, but I'm always able to pick myself up and get going again. But now I'm at my wits end. I'm functioning, but I feel like a robot going through the motions. What do you guys do when you've had about all you can take? I'm looking for "non-medicinal" suggestions. Although I am a fan of counseling, I don't really want to go to someone and talk about my medical problems, I spend enough time dealing with my health issues as it is....and Steph if you read this don't worry about me, I'll get through this I promise and I'll be my humorous self again (I would just prefer that it's sooner than later because right now I can't even stand being with me, but I have no choice, so I can only imagine how everyone else feels).

Thanks

Bren

[briarrose]

Hey Bren

I'm up tonight and will be for the rest of the night. Give me a call Let's talk about it.

You know me too well.

Steph

[Guest tearose]

Mornin' Bren, I hope you were able to chat with briar!

I think what works for me is to try several different things until the "spell" passes. (morgan would say "episode" : ) ) No one formula works all the time...that would be too easy! I try both rest, more activity, changing my salt intake, taking in some more water, putting on more compression... I will climb back into bed for an extra rest, or try to start using muscles I may not be using. Just try different things.

I don't use medicines because what may help some things in my body, also worsens other things. I understand that you also don't wish to go to a "professional" to talk about all this...I don't either. I figure if I had the energy to get up and out and to a therapist...I wouldn't need them!

After 14 years of all this, I get to know what to do, you will too! There are times when you will forget you even have POTS!!! really! And there are times like now for you, when you don't know how to balance your head on your shoulders. There is no one out there who will pull us up, we have to learn how to pull ourselves up. There are no magic pills that make it all go away. Be gentle with your limitations but at the same time be your own cheerleader and force yourself to keep up with activity , good nutrition and above all else, that positive attitude you already have!

Try to make a new positive goal for yourself and then work towards making it happen. Don't beat yourself up if you don't get there as soon as you wished, just keep breaking the task up into small manageable, attainable pieces. Listen to your body, how are your POTS symptoms responding? Make adjustments...keep moving forward, the body will follow!

Maybe a first goal for you would be to plant a flower, OR cook a portion of a meal OR take a shower and fuss with your hair... Try to let your body "retrain" itself, without triggering more pots symptoms and you will see your endurance improve. Over time, you will improve.

Hang in there...tearose

[Jersey Girl]

Hi! I feel the same way about having all you can take some days. But, I totally agree with Tearose's suggetions. I am also taking a non-medicinal approach to managing my symptoms as well, because I also have found that most any medicine makes other symptoms worse. I felt that Yoga really helped me when I could do it prior to my recent shoulder surgery. (I started with an easy class and bought some Yoga tapes to follow at home) I'm still in physical therapy post shoulder surgery for nerve impingement and calcifications and have found that after 3 months of regular therapy on my shoulder and neck, the pain has improved, as I don't have the pain and discomfort setting off the dysautonomia as much. I wish I could say the same thing for eating--it definitely makes things worse, yet I still eat and drink like a fish. And those monthly cycles are the pits. Swimming at an indoor pool also helps with the shoulder therapy and the POTS and a general sense of well-being. Keeping my leg muscles strong by exercising also helps with my endurance. I try to get out of the house at least once a day to do something. It was 3 years for me this past March with these crazy symptoms and I know that these annniversaries can be upsetting. I am still hoepful that someday I will forget that I have this condition. Wishing you a better day! Martha

[Ernie]

Hi,

In the summer I go for a swim, in the winter I go to the movies and in spring and fall I got for a wheelchair drive.

Ernie

[morgan617]

Hi Bren, all good suggstions. Sometimes I just hang on for dear life and wait, because it does pass, experience has shown me that. I watch a show that I love, to take my mind off it, or think about what this illness has taught me. I am a more compassionate person because of it, there are still little things I can do, and somedays I am going to feel like a robot going through the motions. But if you remember back to before you were soo ill, you will realize that even then there were days we just went through the motions. There's just a few more now.

I haven't been to therapy for awhile either. We figured out why I get blue. I am sick, duh. Sometimes just being able to talk to someone you know cares and understands is all you need.

I think we have a tendency to withdraw during these times and it is probably the time we should least be doing that. It's being in with the community of people who feel the same and we know they understand, that buoy us up. Even if we are cranky and don't want to feel better. I've had days like that too. I just want to be cranky and sad, and, frankly, I think that's okay sometimes.

The fact that you are putting yourself out here says you are maybe ready to get over this rough spell you are having. I hope so. We all care about you, and certainly understand where you are at. So hang in there and as someone famous, I have no idea who, said, This too shall pass. Maybe more slowly than you'd like, but it will. Hugs, morgan

[Guest Mary from OH]

Bren-

I would encourage you to search your soul.... Is there something that you've always wanted to do?? Community centers offer classes at reasonable costs and usually even have financial aid if you need it!! They have classes in pottery, painting, drawing, yoga, etc... What would you like to do that you have NEVER tried??? I took up pottery/ceramics and have really come to love it!

Also, when I am feeling "ok", I love to go outside and work in my yard and garden. There is no better feeling than planting flowers, etc. and watching them bloom. You can lay inside on "bad days" and enjoy the fruits of your labor.

What about journaling??? They have some beautiful journals out there nowadays. If you aren't up to the counselor thing right now, what about a journal? You can write about anything! Poetry, stories, life, whatever comes out of your head. If writing by hand is too tedious, use the computer. If that's stiil too much, use a tape recorder...

Do something special just for YOU!!

Have a wonderful day!!

[StaceyYount]

Hi,

My husband calls it changing my perspective. Somedays it is just going into another room to do something I usually do in my "room". Watch a movie or lately it has been to sit outside and look at the stars. Sometimes we go for a ride and look at different things. I ususally pay for those but for awhile I have escaped my "illness". I am not sick Stacey I am just out.

But also somedays I just have to let myself have bad days. I cry, I scream ( on the inside anyway), I virtually throw things but you have to let it out. Then I can get myself back together and face this one day at time, sometimes one moment at a time.

It also helps on the bad days to have friends who understand, that you can virtual scream and whine with because you know they understand.

These maybe just simple things but to me they have kept me relativly sane(no comments from the peanut gallery!) for the past 10 years.

I try never to think that this is the way my life will be forever, somedays are much harder than others but it is that hope that keeps me going.

Always remember that we all understand and hope that one day this will all be just a memory.

Hope this helps,

Stacey

[Roselover]

Bren,

I am just hitting three years too. And, in the last few weeks, I have been wondering the same thing. Each time I think I have found something to take my mind off my illness, I find that I take a step down in energy and ability to do anything.

A few things I have done:

I have always wanted to learn to watercolor paint. I have begun painting on my better days. I also order watercolor books to be mailed to me from my local library to look at and learn from when I am not even up to painting.

I also order documentaries and other videos from my local library.

I also have some computer games I enjoy and play them on a laptop while sitting in my recliner.

Sometimes I enjoy knitting - but when the brain is foggy I struggle with patterns.

One of my favorite pass times was playing tennis with my husband. Now we have a Nintendo tennis game we play instead. It's not as good, but sometimes I almost forget I'm sick and the old competitive me comes out. Imagine a couple in their late 40's playing Nintendo and laughing and cheering like they are really on the tennis court!

Some days I can only sit in my recliner and listen to music that I enjoy and imagine myself somewhere else - sometimes I take a walk out in the country side... many times I travel to England, or I am driving fast in a little convertable sports car... depends on the music.

But many other times, I lately, I feel like you Bren... wondering what can I do?

Thanks for posting this question. I hope others will share what they do. It helps me to have more ideas. Sometimes, like Stacey said, I just want to scream!

~Roselover

[seaboardbc]

I really appreciate all of the replies. I do a ton of things and I'm sure to the rest of the world I look like I'm doing very well. When I was first diagnosed I went back to school and I'm working (slowly) on getting a PhD. I hope to get it and be well enough to do medical research on this crazy illness. Then I won't feel that all I've gone through has been in vain.

I'm feeling better (emotiionally) than I was a few days ago. The best way to describe how I was feeling (and how I feel sometimes) is to equate it to how I felt after 9-11. I was in NYC on 9-11 very close to the world trade center. For awhile after that I felt like I was only "existing", it was very difficult for me to think about a future because after having our world as we knew it pulled out from under us, I was so gun shy waiting for it to happen again. I went for counseling after that and although I can see it every time I close my eyes, I'm in charge of my emotions instead of my emotions being in charge of me.

So that is sort of how POTS has been for me, each time I'm feeling sort of comfortable with it, the "rug gets pulled out from underneath me" again with some new symptom or ailment. So when I dream about my future I start to wonder if I will have one (although I desparately want to live to be a ripe old age).

Stacey, I like the idea of changing your perspective (your husband sounds great). Today I got up and said to myself, what guarantees does anyone have in life? I feel better because I feel a little more "normal" now. I just hate when I start to look at myself as being unhealthy, because that is so not my attitude. So as your husband calls it, I changed my perspective...I got up early, got dressed nice, and was out of the house by 10 am doing errands. So what if I was on my way back home by 11:30 am and on the couch the rest of the day...for a few hours I was just like everyone else and I was happy for that....

Thanks everyone

Bren

[kristinp29]

Hi Bren,

I haven't visited the forum in a few months (hi again everyone!) and I'm a little late on this one, but I had to chime in.

Everyone had some great suggestions. I've been through so many difficult times throughout this journey (I have POTS), and have endured. Although I used to get very, very discouraged sometimes, I found that journaling always helped me. Be sure to write on your good days, too, because those good days will give you hope on the days that you can't imagine it ever getting any better. I also would watch a movie. If I wanted to "escape" my world, then I'd watch a comedy and it would make me laugh. If I just felt like being sad for a while, then I'd watch a drama and I'd cry. The crying seemed to help.

Anyway, these are just a couple of suggestions for everyone. A new perspective is a great idea, too, though I found that it's difficult to change your perspective when things get really tough.

Love,

Kristin

[Kitsakatsa]

Not too long ago I faced the very same thing. To make a long story short, I headed for the car ( I was at work), when I reached it I cried my eyes silly, called my mom and took some Ativan. Then, I signed up for a counceling session. Luckily I got in immediately. The councelor was very understanding and let me talk forever about the struggles of everything ( you already know the details, by heart!) He gave me four activities and those have carried me through the really hard times:

1. Draw out on a piece of paper your problems and struggles. Relabel them "challenges" and start to connect them to "solution" bubbles. I know that this sounds really silly and dumb, but sometimes I sit and do this in meetings. After a while I come up with solutions and sometimes they are insightful changes in therapy, sometimes they are just attitiude shifts and ways to look at things.

2. Journal bad and good times. When you have a great day, journal as much of it as possible. Then you can go back on your bad days and realize that not the whole world is falling down on you. You could even start a gratitude journal, some people like those things and find sunshine in them.

3. Connect more with other people. A Swiss proverb: A joy shared is double the joy, a sorrow shared is half a sorrow. This board is great for that!

4. Plan. Plan the good stuff. I get out a notebook and plan lots of things. Outfits. A new diet plan, exercise plan. You could plan a vacation, pretend that you're feeling good for it. Rearrange your house- things that you have control of. I plan huge meals that I will probably never cook and definately never be able to keep down. Just something in the future of some sort. I'm going to start ordering tons of stuff from tourism boards around the world and plan the ultimate vacation.

Anyway, I hope this helps. It all sounds silly now that I've typed it, but those four things have kept me from just calling it quits altogether and pulling the covers over my head forever more and never to emerge again (except to go to the bathroom and change the channels).!

[Kite#7]

HI seaboard,

all the advice on this forum never ceases to amaze. When we worry about rules and such , you find it is Humanity that really rules the discoures here.

any who ; I always keep to mind/ heart these 2 JAMES JOYCE Quotes

I am tomorrow , or some future day , what I establish today. I am today what I establish yesterday or some previous day.

Better to pass boldly into that other world , in the full glory of some passion than fade and wither dismally with age.

with these in mind ; when ever I am having a " problem " for instance I can't speak and am drooling / shaking - eyes don't want to stay open. I'll try to make as light of the situation as possible for those around me. I have THIS !!! I HATE IT. and there are times... But I give my Head a shake ( on purpose) and work harder to live well. Accomodate this to MY LIFE not the other way around. Most days it works. Certainly with the help of MANY but , isn't that the case with anything you do in life - jobs , kids, sports etc. One Momement at time , then many moments make a wonderful Time. Failing that U2 has a song XANAX & WINE love song haven't tried the mix.

TAKE CARE Kite 7

[Miriam Poorman-Knox]

Kitasha,

I am going to copy that down. That is what my therapist has been trying to get me to do, in my brainfog I havn't clicked.

Seaboardbc

.As for other bad bad days................. I sing like roseanne!!!!!!!!!!!!!!!11I sing its a beautiful day in the neighborhood, poor Mr. Rogers, It aint easy bein green........ my husbqnd does seem to retreaT BUT i Actually feel better. We will, I BELIEVE have good lives. Different than we planned. But GOOd!!! blessings Miriam

[Poohbear]

Sorry I'm late in posting to this but I hope someone will still benefit from it.

I do many of the things you have all mentioned. Music for me is one thing that is often very calming and peaceful to me.

I also have a "quote book"...what you do is get a journal and when you are in conversation with someone or a group of people you listen for the statements made that are really funny when taken out of context. My friends and I kinda "compete" on who comes up with the funniest quotes (although you can't purposely TRY to get quoted...it never works out very well.). Often, the things in the book will only be funny to you and those who were present during the conversation. But it is uplifting to read and laugh at these on your bad days.

I don't know if I'm explaining this very well so I will try to give a couple of examples. Once, while in the hospital I was having to do a 24 hr urine collection. I walked out of the bathroom and said, "Will you please put my urine on ice?" So my friend quoted me, because out of context, if you weren't there and didn't know the circumstances that is a funny quote. Another example....while watching a tv commercial for some drug my friend said, "It's good for you but it might destroy your liver or make your eye fly out of your head" so I quoted that...again out of context...really funny.

Another thing I do sometimes is "internet" mad libs. Hopefully you all know what mad libs are but I will either create my own story or use one from the books and ask my friend to email me adjectives, adverbs, nouns etc and I will plug them into the story and email it to everyone. Sometimes they turn out really funny.

Maybe I should try a creative mad lib on the board soon! I'll work on that!!

Take good care of yourself!

[Merrill]

I heard a great line yesterday:

It'll all be OK in the end. And if it's not OK, it's not the end.

stay cool,

merrill

[corina]

Wowww Merrill, that's super cool!!!!!! I love it!!!!

Thanks for that!!!!!

Corina

[geneva]

I love to pretend I am on vacation somewhere wonderful. I can close my eyes and see the whole trip and how enjoyable it is, doing things that I probably won't ever be able to do (that is not the point of course). I plan the travel itinerary, the excursions, and seeing friends. During this time, I really feel like I am there and it is very relaxing. Hours can pass by while I am "on vacation".

I just got the book, "1,000 Places to See Before You Die" by Patricia Schultz. Last week on one of my difficult days, my husband and I went through it looking at all the places he and I have been separately and sharing experiences. It was so fun and most of all, distracting!

Also, I started reading the book (recommended here by someone I forget) called "Full Catastrophe Living" by Jon Kabat-Zinn and I am finding suggestions to try to live with illness. I also liked his book, "Wherever You Go, There You Are".

Bren, glad you are feeling better. It is such a good topic and the wonderful ideas here will help others as well.