I'm sure that there are lots of people on here that will totally relate to how you are feeling right now.
Anxiety and PEs seem to go hand in hand but it does get better.
Everyone seems to find their own way to deal with all the turmoil of the pain and the restrictions and of course everyone is different. You really just have to be patient and br glad that you WILL get better - you're a survivor! Sandi x

I do understand what you're going through in so many ways. It is very, very hard for family and friends to understand even when they really try. I've told my husband that he would be shocked if he could live inside my body for even one day. I know this will surely sound strange but I actually think it's positive that you're crying. I was locked up for about 6 months and couldn't cry, and it's still hard for me, but all those horrible feelings are still down there festering away.

It seems impossible but things will improve. I didn't really believe that for a long time, but it does. As Sandie said, we all kind of have to find our own way, though this is a wonderful place to talk things through. My recommendation would by to right now try NOT to think of the long term, it's too overwhelming when there's such a struggle getting through each day. I would at this point not freak out about the coumadin thing either yet, because like with my I was initially told I would never be coming off it either, but things have worked out and I've been off about two months now, so you really just never know. Right now probably even your doctors don't know. There are constant ups and downs both physically and emotionally on the road to recovery. I'm almost eleven months on that road, and I feel like I'm just starting to kind of get myself into a groove that I can live with. Have faith in yourself, know that you'll find your way too, and remember that we're all here to help when you need a hand.

By the way, I agree with you that there is a kind of grieving process in recovery. Emotionally I've actually gone through a very, very similar process to when I lost my brother. But although it isn't pleasant, grief can be a healthy way to help us cope, just try not to let it overwhelm you. Know that you still have a future to work toward and that alone is a good thing!!

Best wishes in your recovery,
Sarah

You are definitely not alone in your reactions to this illness. This is the place for you to vent because you will find other people that have experienced the same thing. My PE was June 15 and the first 3 or 4 weeks were an emotional roller coaster. I tried to tell myself how grateful I was just to be alive, and I am grateful, but my emotions seemed to be on a course of their own. I dont think I have ever cried as frequently or as hard as I did during that time. I think that every bit of my energy was sapped out just functioning throughout the day. When totally depleted it is like a child that cant control their emotions. It is not unusual to be depressed for a time after an event like this. Although I still have some sob, it has vastly improved (with the occasional bad day). The fatigue hasn't improved as quickly. My doctor said that would be the last thing to return. This has made my hip rehab (hip surgery is how I ended up with the PE) long and difficult, which tends to be discouraging. But I can definitely see improvement and dont feel that I am destined to be like this forever. We will get better.
As far as the coumadin monitoring is concerned, I am highly annoyed by that as well. But, once we are stable testing wont be as frequent. Your wife is right, try not to think too far ahead and focus on the present. Look for the progress you have made, and think about continuing that road. You will improve. Hang in there. And dont hesitate to vent.
Mary Lou

It has been almost a month, and that is not a long time.

For that matter, my 17 months is short compared to those who are past their episode(s) by 17 years. It has been up and down. Survived, that was an up. Back to running (more like trotting) in a month, up. Got near the end of the one year eval and thought I'd get my life back, up. Learned I will not get it back as it was before, down. Since then, ironically, the ongoing nature of it has seemed more of a "down" than the initial episode.

However, time makes all things livable, and I have made arrangements where at least I will not be tethered to the clinic every 3 or 4 weeks. Grieving for what was lost is normal and perhaps beneficial. In some ways I am coming to a new set of terms. Every day is its own blessing.

Dear cjmenjou,

...there is a "mental battle" that few talk about on this site...perhaps because everyone is focused on the physical aspects...so thanks for bringing the topic up...

...but I am sure that everyone here has had (in their own quiet, private moments) shed tears over this awful condition we share...
Facing death (while looking so healthy) is quite a contradiction...and a lot for anyone to contemplate...but rest assured that you are not alone in your feelings...

...our minds are used to "calling the shots" and expecting our bodies to "follow orders"...now things have changed (for awhile hopefully) where our bodies our calling the shots...and the mind refuses to salute and follow orders...tough stuff to handle...

...it follows that we need something else to lean on...to carry us through these difficult times...personally...my mind has found comfort in praying and faith...

Hey there, We all know what you are talking about, and it does come up quite often as a topic on here. I always say we are some the healthiest looking sick people around. It is also hard to comprehend that our body has let us down and there is absolutely nothing we can do but go along for the ride and see where it takes us. By the way, I am not a big time biker, but ride in the summer with my kids-should I not be doing that-I am in violation if I'm not! I have been doing this for 2 years-it will get better -give yourself some time and listen to your body -don't push too fast or your body will rebel. Blessings, Teri

The emotional toll is certainly there! It's a major adjustment in how you see yourself and how you see your future. I think it's perfectly ok --maybe necessary even-- to have some time to grieve and get over the shock before going on to the next stage of "yay me, I'm a survivor."

You have to remember that you are really new to this.... if you have time- check out the archives from just one year ago. You will see many of the same questions asked. Yes- there is a huge mental toll from going thru this PE experience. It does get better, but always on my mind (I had my PE in June 2008 and still on coumedin for awhile, but going off slowly) Everyone is different in their physical and emotional healing.... it's been a very slow recovery for me, but I can say that many people have had great turn arounds.

If you're already swimming..... then I would say you're doing very well. I have my degree in exercise physiology and worked as a personal fitness trainer before my PE and the economy tanking. I was VERY active and my life came to a halt for several months. I had a LOT of pain in my lung after just doing daily stuff. When I tried exercising- it got worse. Most of my doctor's think the pain is related to scar tissue, but having this recurring pain brings on the "cycle" of anxiety, depression and worry.

You've found the right place- so many family members try their best to understand, but it's difficult for them. I have friends that don't understand why I'm not back to normal. AS many say at this PE site.... we are the healthiest looking sick people in town. I'm glad that you can express your emotions in tears- at least you're not holding stuff in. Remember that you can come to this group with anything. It is a grieving process and you will have a "new normal" for awhile and with all hopes- you will get back to your previous normal. One day at a time has been my motto from 2009!
Hang in there! :)

cjmenjou, There is really nothing I can add about the emotional roller coaster we are all on except keep the faith brother. I am a 4 time multiple PE survivor and started this back in 2005, I am also a lifer on Coumadin as is several others that post here often. I will reiterate that things do get better, very slowly but they do in fact improve as you adjust top your new norm. Several of us on here are in complete denial that we can't overcome this silly illness such as myself so I continue to try and do things I have always done. I am back to most everything except fighting wild land fires as that really screws with my lungs. I am back to working full time and back to going on searches with my dog Maks in the back country of North central Idaho. No I don't ride a bike or run and never have unless I have to. I do swim every chance I get as that's good exercise for my dog and myself to keep our legs in shape for the rugged terrain we work in.
Be patient my friend as I know your family and friends don't have a real clue to whats going on inside, lol we look great on the outside as Teri says but inside we're a train wreck. Just remember your never alone, we're always here with you and will help you through this.
HUGS
Ferr
(Joyce)

Actually, I think we DO talk about the "mental battle" a lot on this site. There are so many posts on anxiety, stress, etc.

It's the medical community, the nurses and doctors who diagnose you and treat you for the immediate clot and then send you home telling you to just live your life, who have no clue about the emotional fallout many people go through during recovery. No one prepares you for that.

There's this process you kind of go through: happy to be alive and yet sad about what seems lost and now unfamiliar. It's the strangest thing, not at all what you expect to feel when you survive this type of trauma.

And I agree too that there is this sort of grieving feeling. Things feel like they are lost but you will gain things back. They might not be exactly normal but then they become a new normal.

PE or not, we are all works in progress. It just takes an life changing event like this to remind you of that. Hang in there.

Yes, you will see MANY references to " mental and physical ROLLERCAOSTER ". I think you can guess what that means...
Yes there is a strain from the illness, but at the same time there are some side effects that can be associated to coumadin/warfarin.
When I was on it I did have problems such as being cold all the time, being tired all the time, brain fog (having to really concentrate on something that usually is second nature AND reeked havoc on my emotions, from one second to another it was like black to white.
I'll admit it, yes I cried at some points, like a wittle boy...

Dero, That just makes me love you all the more my dear friend.
HUGS
Ferr

I truly want to thank everyone that's posted in this thread, it's been a great help. I felt really good for a couple days after reading it, then as it happens, the rollercoaster went down.

I have gotten back to swimming, even plan on doing an open water race (as an event, not a "race" :) ) in August. And making some tentative plans to put more exercise on the table. That stuff helps a bit.

Again, thanks to everyone here. No one really understands it like we do.

Hey, good for you! The exercise not only helps physically, but it helps with the mental state too.

Yep, ups and downs. It's that old saying, "one day at a time."