Hang in there..You aren't alone. Till this day I still feel the same way as you even though I am close to the end of my therapy. If you were previously active.. Id give it a few weeks of full rest before trying anything strenuous. Being active and taking baby steps will speed up your recovery. This also took my mind of things. I started with walking quarter mile to a mile each day broken down to several sessions. You will get back to your routine slowly but surely but allow your body to heal. This kind of event is mentally taxing more than anything at least for me. It will get better, give it time.

Well, here's a couple of things, first you are really, really early in recovery. Be patient with yourself, because this recovery is not a sprint. If you've already walked a mile a few times, I think that's really pretty good, since when I was at your point in recovery, I was still sleeping pretty much all the time. I am a big believer in walking as much as you can manage, but it's a delicate balancing at in the beginning to learn what your body's limitations are. And doctors really don't give much guidance on this, I think most of them have no idea how much work it takes to get better after PE.

I agree that it might be good to cut back on how much you're trying to walk at once, I think it's better to stay consistent and try to walk a little every day rather than push too much for a day or few and then feel terrible again. It's kind of a trial and error procedure to figure out how much you can tolerate.

One thing to bear in mind, remember that whatever anticoagulation you're taking, that is protecting you. Remember what you've felt when you've returned to the ER is right now "normal" for you when you've done too much. So next time you feel that way, think about whether you maybe did a bit too much and are overtired, causing your symptoms to get worse again, think about whether your blood is therapeutic, because if it is, then it's a pretty safe bet that you're not having any new clotting problems. But having been to the ER and told you were okay, that kind of gives you a baseline of what it's okay to feel right now. It doesn't mean you'll feel this way forever, just this is how you feel while healing.

When you physically feel like you can't do more than being around the house, try to keep your mind occupied with positive things. I was truly limited for a long time after my PE, and rarely got out of the house, but I'd go sit outside and just enjoy feeling the air and the sun on my skin. It was kind of a reminder to me that I was alive and just helped me remember the good of being alive. I also kept myself really busy with non-physical things. Something I never anticipated doing before, but I started crocheting and knitting while I recovered, because it didn't require much physical exertion. I'll be honest, in the beginning I couldn't even manage doing that for more than about 15 minutes at a time, but I think it was emotionally good for me to learn something new which distracted my mind from the pain I felt and just didn't allow myself the time to be anxious. I have often thought, Do I control my thoughts, or do my thoughts control me? Well, I want to control them, and I think that we can make a conscious decision to stop anxious thoughts when they creep up by doing something else or even just forcing ourselves to think of something different.

Some people have eventually taken medication or done therapy to help with anxiety, but I think you're still too early in the process of recovery to consider that. You may very well get better without finding either of those things necessary.

Welcome to the group, by the way, although I'm sorry for what you've been through and are still going through. Let us know whenever we can help.

I'm two weeks out of the hospital, diagnosed on 7/14/14, and I can relate. It's terrifying to face your own mortality. Mentally, it's very difficult to try to find your way back to the carefree attitude prior to the PE! Every pain now has a whole new sense of urgency. Hang in there, it will get better I'm sure!

Thank you so much, Pubbypaws and ShilosMommy for the great advice about taking it easy and going slow, especially right now. That really helps me have a better idea of what I should and shouldn't try to do. I'm glad to hear that you both encourage keeping active and walking, but just slowly and gradually getting into that. I have always been very impatient with myself, so this is going to be a big challenge for me, for sure! But I think it will also teach me some good life lessons in the end. I'm also realizing how different everyone's experiences are with this, so no wonder the doctors don't send you home with any good advice about activities to do. And I hear both of you too, about the mental part of all of this...that really is a huge part, to trust that the medication is keeping me safe and that the symptoms I was feeling after over-doing it were just 'normal'. Gosh, it's such an eye-opener, though, to have been through such an event and to have it hit me that I'm not invincible and that even though I live a pretty healthy lifestyle something like this can still happen to me and it was out of my control. Huh, I need to ponder that thought a little more...

And, JuliesLife, thank you for relating to me about those feelings. It really is very scary especially when you read all the information on the internet about this condition and how lucky we all are to have made it through. Wow. That is a lot to take in, and it's so hard for others to really relate to that who haven't been through it. I just keep trying little by little to turn that thinking around and focus more on what all of this might be trying to tell me and what changes in my life may come out of this. I am a strong believer in 'everything happens for a reason'. If you ever need anything, I'm here too. I don't have a lot of wisdom yet on this subject, but can definitely relate with both of us being so new at this.

I think it is a blessing to have found this community!

I had my PE in February, a few months before my 40th birthday. And I still get random pains from time to time even though I had a follow-up CT scan in June and showed no clots and I'm still on warfarin. Even though I know that it's unlikely to be another clot, every twinge feels scary.

As for physical activity, I think you need to cut yourself some slack!! It's been less than a month since you had a major medical problem. Of course your body doesn't feel right, it's not ok and it know it. You need to take it easy for a bit. All my doctors have said do what you can and stop if it hurts. If you're short of breath or have chest pains, stop. My hematologist also recommended yoga (regular yoga, not hot yoga). I don't know if this is a medical opinion backed by evidence, but she said that it would open up my lungs, help me breathe more deeply and help my lungs heal.

Thank you, mamajena. Good advice that if I'm feeling short of breath or it hurts to stop! That sounds so simple, but it can be hard for me because I'm used to pushing through pain...being a runner all my life. It hardly ever feels good to run, there is always some kind of ache or pain, or mental block that you have to overcome, but you just accept that and keep going. This, however,is completely different. I'm realizing that if I push it like that I'm not helping myself at all. Only making things worse.

I may try some real low impact yoga, though....it is great for deep and controlled breathing and I can see how it could help heal your lungs.

There are a few groups/communities around for runners who've had PEs:
http://clot-buster-triathlete.blogspot.co.uk/
https://www.facebook.com/groups/81164797980/
However, the advice given above is sound, you can't run through this and you've just got to give your body enough time to get over it.

I have always pushed through every difficulty in my life. First I fought to live. Then I fought to go to a regular school back in the day when epileptics were closeted in psychiatric hospitals and considered "mentally and emotionally unstable". I fought to walk normally with big metal braces on both legs. I fought to be able to ride a bike or play the clarinet or march in the marching band. I've fought through lots of adversity in my life, and I find it very difficult to fight through this.
I'm used to banging my hard head against a brick wall until it falls down, but now I'm having to chip away brick by brick with a toothpick instead. It's frustrating, but do be patient with yourself. I set my recovery back trying to push myself harder every day to get well faster. Realize that some days you'll be able to do almost your normal activity and some days getting out of bed, making coffee and toast and walking out to the mailbox will be the most productive things you're capable of. It's terribly hard, because there is no measuring stick or test or way to tell how fast you are recovering or how long it will take. When I look day by day, I often get frustrated, but when I look back at April and compare myself to that, I feel like I've truly come a long way back. Be happy with small victories and chalk up your bad days to a good way to learn patience with and forgiveness of yourself for not being perfect, always.

Hi, I am 42 getting ready to be 43 this month. On 6/6/13 I was diagnosed bilateral PE's 5 total. I went in the ER in pain, shortness of breath, that really changed my pain scale! I joined this group then and learned that the pain and symptoms can last quite a while and they did and had to remember and remind myself that I was on a thinner so I was just healing. Some Doctors do not think that inhalers can help with the SOB but they really can if you are still having that problem. It took me a long time to get myself back to normal to not be scared. I understand how you are feeling, I think everyone in this group can relate. Give yourself time to adjust, love yourself. Do what you feel you need to do to not worry. REST! At first I walked around my kitchen once a day then added another lap when I could do it and still be able to talk...take your time, everyone is different. I agree with the others in that you really do not get a lot of info on what to expect, that is where this group is a blessing without them I would have been lost! Good luck and I look forward to the day that you post that you have gotten your MOJO back!!!

I am almost 15 mos post bi lateral PE & DVT. I had no clue what was wrong when i went to the ER with the shortness of breath.

They are right...Rest is very important early on and will be for awhile.There are days I still take naps as I am just worn out.

Exercise is important. Keep moving but do not over do. If you can walk to your mailbox or end of the driveway, start with that. Do it a few times a day just don't over do it. Only you know how much you can do.

Recovery time frame.....well everything I have seen here says from 1 year to 2 years depending on a number of things. Usually after a couple of months you do start to feel more like your old self or at least close. Everyone recovers at different rates so what might be normal for me may not be anything close for you. Other health issues also play a part in your recovery as well. I have trouble walking so exercise is a real challenge for me.

I too suffered from anxiety/panic attacks after being release from the hospital. I am started taking medicine about 3-4 weeks out as all I would do was cry all day or fight the tears. Since then, I am doing better with things. Some people go to counseling/therapy, some use medicine, some do journaling,etc So find what works for you and go for it!

I am mid 50's and raising 2 young grand daughters. There are days they keep me young and moving and other days I swear they are going to be the death of me yet! LOL

Hang in.....things do get better it just takes time. Listen to you body and rest when it needs to rest, and don't push your self to hard.