Looking Back, Blessings From Pots

[Mamawithpots]

So I am a newbie, still having a hard time adjusting to life with Pots. I was just wondering if any of you who have had it for a while are able to look back and see anything good that has happened as a result of having Pots? For instance, a strengthened relationship, new friendships, lessons learned, etc. If you think of anything let me know, it gives me hope to hear about the good things that happen and not just the bad. Share even the smallest things.

So far, I think I have started to learn how to accept help from others. I've learned to let go a little bit, and not be such a control freak. And hopefully through this I will be better at not letting stress get to me.

What about you guys?

[Macca]

Hi MamawithPots

It took me a few months to adjust to being ill and that was a hard period. When I first got ill I was bed ridden for a significant amount of the day, just able to be up for a few minutes at a time.

That said, after a few months I decided Pots wasn't going to beat me and that there was still enjoyment in life. I focused on the positives, particularly my two children. While I couldn't take them to the playground, I could still spend time with them, reading, playing board games, watching movies etc. I also took up some part-time distance education (that I could complete on my laptop in bed) that kept me feeling like I was making progress in life despite my illness.

I also decided that I would take whatever physical capability I had and do what I could every day to be upright and to expand my envelope of functioning through graded exercise. At the start I did this with the help of an exercise physiologist. Over the past three years I went from bed bound and only being upright a few minutes a day, to returning to work and doing 30 minutes of cardio exercise most days. I am still symptomatic, but it's significantly improved.

In addition to the wonderful DINET forum, there is a great blog written by my fellow Aussie, Michele, called "Bob is Dysautonomia". The blog that some excellent information and inspiring, funny posts from the woman who writes it. She is severely affected with a progressive dysautonomia, but still sees the enjoyment and humour in life. If you're interested a link to her blog is below:

http://bobisdysautonomia.blogspot.com.au/?m=1

All in all I think acceptance that you are sick, but a determination to not let Pots define your whole life is important. Don't focus on what you have lost, but focus on what you still have (eg children, family, friends etc) and fight for your recovery.

Hope that helps. All the best!

[Mamawithpots]

Thanks Macca. Your situation sounds very similar to mine. I'm very glad to hear your story. I too am bed bound, (and pregnant) and play with the kids from bed. I love that you took some online courses. After my baby is grown I'll have to remember that.

It's very encouraging to hear that your physical capabilities have improved SO much! That definitely gives me hope. Especially if this doesn't magically go away like the docs hope after the baby is born. Thanks also for the link :-)

Anyone else have positive things to share? I'd love it if we started a list of positive things!

[Katybug]

I've learned not to take anything too seriously. ...not even POTS or EDS or MCAS.....a good sense of humor goes a long way. I've learned no one is going to care about me, more than I am. So if I am not assertive about my care, I shouldn't expect the medical professionals to be. And, I've learned who my REAL friends are as opposed to my good time friends. I think most people are upset when this realization hits. But, I count it as a blessing because it allows me to know where I should be spending my time and energy and emotions. And, finally, it has taught me how tough I really am....most people wouldn't make it one day in this body!

[lejones1]

Wonderful idea, Mamawithpots, I love this! Like Macca mentioned, when I first became sick I had an adjustment period where I struggled to accept the changes and was honestly pretty negative. But once I learned to stop mourning my old life and accept that POTS wasn't going anywhere, there are so many things I've learned. Physical limitations aside, I'm a much happier person and probably better friend, daughter, etc now than I was before getting sick.

So some of my positives:

Much closer relationships with my parents (and some extended family too). I moved home at 22, when I became sick, after living a flight away for 5 years. Never thought I'd live at home again but it's been really nice to reconnect and strengthen relationships. They were never bad before but we're the types that always swept the uncomfortable stuff under the rug, and that ceased to be an option in dealing with all my health stuff. It definitely wasn't an easy change at first, but I'm so grateful for the outcome, and absolutely so thankful for the support of my family!

A stronger faith. A closer relationship with God. The realization that sometimes I just have to let go of my need for control and trust that his plan is right for me, even if it may not be what I thought I wanted.

I've learned to judge my self worth less on what I could do or accomplish and more on just being me. And also learn that my accomplishments may not be what I expected before I got sick, but I can still do things to be productive and make a difference.

Being more empathetic. I wasn't cold-hearted before but I was definitely uncomfortable with negative emotions so sometimes had trouble relating to and comforting others during their struggles. Having to learn to face my own fear, sadness, weakness, etc. made me more comfortable dealing with and relating to others' problems as well. Instead of making me uncomfortable, I actually really enjoy listening.

Less stress is mentioned above - yes absolutely! I've talked to other women with female-dominated illnesses (autoimmune), and it seems like so many of us have a history of being particularly hard on ourselves, perfectionist, internalizing stress, etc. Having a limited amount of energy definitely forces you to prioritize and say "ok what's the worst that will happen if I can't do that today?"

I think I've become more self-aware. Recently I was talking to a friend who'd broken her back about how much being bedridden, because of all the time spent alone and without many distractions, really forces you to come to terms with who you are - maybe finding things you really like but also things that need improvement. I'll always be a work in progress but I think this has made me confront and pay attention to my weaknesses and things I need to work on.

Appreciation for the small things. This was even more pronounced after I came out of being bedridden (but that's probably a good thing to not get ecstatic about taking a shower everyday!). But still definitely - things like a conversation with a friend or a good meal or a funny movie can make my day - and I'm glad! I've realized that, in most circumstances, happiness is a choice - you just have to pay attention to the little things (and people!) that make you happy. Also definitely, appreciation for the importance of good relationships.

Ok well I obviously have a lot! I think one of the ways I've learned to cope is to focus on the positives that have come from POTS, so I don't just think of it as this horrible disease. And actually I think that's an important message to anyone who's newly diagnosed (Mamawithpots, it sounds like you're already doing this!) - it can be very hard to adapt to the changes that come with POTS and I think it's pretty normal to have a period of struggle, but once you come to terms with it, there's definitely a silver lining and there are so many things that can be learned and plenty of good that can come from it.

[Mamawithpots]

This is awesome! Katybug and lejones1 thank you for sharing!! I loved reading your positives! I think I can relate to pretty much everything you guys talked about. I have to say, it is so nice to converse with people who can understand and empathize with me. What a great blessing this forum is! Let's keep the ball rolling, who's got more to share?

[sue1234]

My POTS hit me 8 years ago. I was very happy with my life, busy with high school and college-age kids. After POTS hit, I spent the first year thinking, whatever this is, the next doctor I see will figure this out and fix me, and I will get back to my life. During that time, I was still upbeat and actually taking advantage of the quiet time to sign up for Netflix and begin watching tv series I had not taken the time to watch before. It was excellent company during my lonely days.

After that first year, I begin to actually really think about how this might be my life indefinitely. I still knew I would keep searching for just the right doctor that was going to fix all this, but I began thinking ALOT about the meaning of life. I was raised without a religion and only going to local churches for Easter(I have no clue why just Easter!). When I got married 30 years ago, I converted to Catholicism to be like my husband. That was fine enough for me all that time, but then POTS kept me from attending church anymore, so I began to really think about what part religion played in my life, and realized it was just a weekly ritual for me. With time, I made the decision that, for me, I had never felt as spiritual as the present time when I realized that everything happening to me is part of MY life for a reason. I have spent alot of time contemplating what it means to be me, here with the family that I have. Again, for me, exploring spirituality made so much more sense than being involved in organized religion. When Catholic, I felt I never had the "power" to control my spiritual life. I was told what to do and how to recite prayers, etc. Now I just look at life and calmly say to myself that something is being taught here...learn from it.

My whole life I gravitated towards the "underdog", but now I really feel a kindred attachment to people less fortunate. I'll admit I'm not perfect and don't always love everyone, but I now UNDERSTAND a lot of why people are what they are. I see things now for what the actual scale of problems they are. For instance, and I don't want to get political, but bringing it up to make my point, but when alot of people complain about our country and "liberty" issues, my thoughts immediately go to the poor in third world countries. It makes me think how spoiled we as a society can be, when our problems are not problems of day-to-day existence. We don't have to forage for food daily or literally starve to death. We don't have a raging war going on in our communities for years.

I must say that I spent my pre-POTS life with careful blinders on. Life was great all around me, if I didn't delve to look too deep. Now that I've dared to look and feel, I cannot turn back. I just cannot judge people's life situations anymore, as we all need a little help. (Once again, I am not perfect, but I do make a heck of a lot more effort to say and do the right thing, following the "golden rule".

Because of all this, I am in a hurry to get my POTS fixed now, as I feel like there is so much to do! I seem to now have a multitude of purposes that I could chose from and go from there. If only I could get this old body to cooperate!

[Mamawithpots]

Sue1234, wow! Thank you for sharing your experience! That was lovely. Good luck to you in all you pursue. Best wishes.

[LastUnicornLady]

I've been struggling with POTS for a year now, although it only really started getting serious this past summer. At first, it was so frustrating to feel awful all the time. We had no idea what was wrong with me, and my first debilitating symptom was nausea 24/7. I didn't feel like going anywhere, and I was miserable all the time. Eventually , the nausea kind of calmed down a bit. However, a whole slew of symptoms followed that. I started getting dizzy when I stood up, and fainted in front of nearly a hundred people. By this point, I had already seen two different GPs multiple times, and had a sonogram that didn't show anything. I was referred to a GI doctor, who suggested that POTS might be the answer after she heard about my fainting. We the proceeded to visit two separate cardiologists before getting a diagnosis of POTS.

It was such a relief at first to finally know what was causing me to feel so ill. After the initial relief wore off, shock set in.I was very upset at the fact that this was a chronic illness that's very hard to treat. That there was no certain cure for me. But my faith brought me through that very hard time. I finally accepted that, even if my illness never went away, it didn't mean my life was over. While incredibly sick, I raised $1000 to build a well in Asia. It was an incredible reminder that, no matter how weak I am, God is my strength.

I truly believe that this illness has helped me to learn patience. I have learned how to accept help from others, and I have been reminded of how much people care about me. It has showed me that I have so many great friends who are with my through thick and thin. I have learned to make the best of my circumstances, and enjoy the little things. And I have learned that normal is all relative.

[Mamawithpots]

AnaBanana, I totally understand what you mean when you talk about feeling relieved with a diagnosis. I thought I was going crazy for a while, and was so happy when I found out it was a legitamite condition. And how inspiring it is that you were able to do such good for others, and you didn't let Pots stop you! Your last line is the best, normal is all relative! Thanks for sharing :-)

[gjensen]

A greater since of gratitude for my immediate family that has been very supportive. My wife has been wonderful. I am very very thankful that we stuck it out through the years.

An expanded view of, and sense of humility. A head strong man that has been put down, that maybe could have used a reality check.

Curiously, I was on the subject of appreciating the little things when this was coming on. That has helped.

A better appreciation for what others go through. I am more sensitive to people that are alone, dealing with a chronic illness, suffered a loss, etc. Where before, I took the tough guy approach, now I have a better understanding. I have read a quote "that none are as sensitive as those that have been skinned alive.". That is probably a paraphrase, but if you picture the sensitivity to being touched it is pretty clear.

A better sense of gratitude for the 40 healthy years that I did have. I have been very fortunate to have what I have, and what I had. I wish that I could go back min time with this experience under my belt. I would have been more appreciative, and took less for granted.

Before I understood, and through some scary spells, I have pondered my mortality. I think it has been healthy and put things in perspective. The fact is that we are not here forever, but we tend to dodge the subject. What was important is less important now. What should have been more important is now.

My youngest son, needed me. He has me now. I am not too busy.

I have three boys at home (young men), that have to do some of what I would have. It has made me more of a teacher, and they will be better men for this. I think this has toughened us all up.

I have learned that I am not above a debilitating illness. Who would I be to think that I deserve this any less than any other? I am not better than any other. If a ten year old can die of cancer, or if anyone can suffer an illness alone, why should I complain? Really, I have had it and still have a lot to be grateful for.

I have met some friends here that I would not have met otherwise. I find myself rooting for people I do not even know, which includes everyone here.

I have learned who my real friends are and the family that would be there. I have even been surprised (in both directions) by what I found. I have found family that really is not, and friends that are really family. I know who is who now, and I have to wonder where I would have been myself. I cannot say confidently that I would have been as devoted. I am sure that I would have cared, but I wonder if I would have done as well being there.

I could go on and on. This, (whatever it is) has been tough, but in more ways than one - it has been good for me. I look at it has being pruned. A lot of useless, strength draining leaf is being cut away. Maybe, just maybe, I will be more productive where it really matters. With things that count. Not all of the things tat we as people get caught up in that are nice, but in the end does not add up to much.

[Katybug]

So many beautiful thoughts in this thread. I say often, "Gifts sometimes come in strange packages." I guess it's really officially time to add POTS to the strange gift list. I see through so many of your eyes in what has been written here.

[Mamawithpots]

Gjensen, How beautiful that you can find so many good things from this. Thank you so much for sharing! I hope you all know how much sharing your personal experiences helps others, and how grateful we are.