I\'m sorry, I wish I could say something wonderful to make everything better. I do understand the frustration of just wanting and wanting to be better and it feels like it\'s not happening, and the feeling that no one understands. They don\'t, and can\'t. I\'m glad that at least you can vent here and you know we all understand. My husband seemed to get it a little better one day when I was really upset and I told him that I wished he could know how hard surviving was. I said dying would have been the easy way, but I struggled to carry myself through every single day so that I could be here with him and my sons. I usually worked hard even here at home to be strong for my family and show them I was okay, but it was a real change for my husband to see me one day break down from the frustration of all of it when I couldn\'t keep it back any more. I\'m not naturally a crier and on the rare case I do, it\'s private, and it was a real turning point for him to see me be affected so strongly.

Well, I think I\'m just kind of blathering on now, sorry! I\'ll just shhhhh now and say I\'m sorry you\'re having a hard time, I wish I could do something to help, and I hope physically these things get worked out soon too. You\'ve been through enough already!

Oh Ferr, after all you\'ve gone through I can\'t believe he still doesn\'t understand.
My partner doesn\'t quite get it either, but then I\'ve only had one PE. ..

I\'m not really familiar with heart rates or anything so I just did a test with our blood pressure and pulse measuring machine.
Rest rate was 76.
Three times up and down the stairs later it was 93.
Whooops! That would be out of your doc\'s range for me, too.

Oh Ferr - we all feel for you because you\'re the one who always looks on the bright side and makes us laugh - but not today!
My heart rate is way above what it used to be too. I got an exercise bike for Christmas but it was more to build up muscle strength than anything else. I can really only do 5 km in about 20 minutes and add onto that the time I stop to catch my breath at the end of every km ! Sometimes I think that\'s pathetic but hey its 5 km more than I used to do! Don\'t feel like you have to prove anything - you\'re doing just great and coping with lots of stuff right now much better than I would. Hopefully it will all start to improve very soon - love Sandi x

So sorry to hear that you\'re not getting the understanding you deserve at the moment Ferr. I\'m starting to get something similar so know where you\'re coming from. What I\'m finding is that I look really quite healthy (especially having been sitting out in the garden the last couple of weeks) so a few people have queried whether I\'m actually ill or just skiving off work. I don\'t like complaining and like you always try to have a positive outlook on things which seems to make things worse with these people. Perhaps I should complain more about the chest pain, the shortness of breath and the tiredness? One thing is for sure Ferr on this forum everyone knows how PEs affect people so no snide remarks here. Take care and I hope tomorrow is a much brighter day for you.

I can relate, my husband thinks just because he doesn\'t have any health problems that I shouldn\'t either. I can\'t believe your husband saying that after reading all the activity that you do day in and day out. I pray that he sees the light and gives you the support you need and DESERVE!

Oh, Ferr, I really feel for you. I completely understand when you say you understand how some people give up trying. It seems to never end, this cycle of trying to get ourselves well and get back in cardiovascular shape, and the effort it takes to keep trying this when we have setbacks.

I also don\'t understand your doctor\'s suggestion for the heart rate, because mine is like yours when I\'m walking around. It seems like it would make more sense to take the top value when you are walking around normally and add a little more to that for 20 minutes to start. But I\'m having my own exercise issues, and am in the back and forth cycle of feeling good and thinking things are OK, and then having setbacks, so I probably don\'t have very good advice there.

I\'m also sorry your husband thinks you are milking this. I feel sad for you and angry at him. We\'re all doing the best we can, and our spouses, friends and others don\'t have a clue what this is like.

My husband also doesn\'t understand or I think even care at this point. He told me the other day he was tired of me sitting around, and then complaining about doctors, and that I was letting my illness define me. Funny, I thought I was talking with him openly about these doctors (see all the posts by everyone here about crappy specialists who say it\'s all in your head), and I\'m the one who brought up a while ago that I didn\'t want to let this illness define me. If this had happened to him, he would be at the ER every other day, and be going to every specialist in the country to try to feel normal again. And that\'s the problem, at least how my PEs have affected me: I never feel normal or "right" inside my body anymore. Everything has changed. Everything is an effort. Whereas before I cuold do 10 things in a day, now it\'s maybe 2. Everything is harder. He will never understand that because I "look" so healthy on the outside. I guess he thinks I really want to feel this way, to "milk it". It is so upsetting to me. I get no joy or pleasure out of seeing crappy doctors, out of seeing my life become more limiting, out of laying around because I\'ve reached the wall or because my chest pain is overwhelming. Milking it? I\'m not eating bon-bons and asking him to fan me while I\'m getting my nails done. I freaking feel terrible inside, and some days there are huge limits on what I can physically do. Pushing myself on those days makes it worse, as has been proven time and again when I have done it.

Sorry to go off on my rant, Ferr. I just completely relate to everything you have said. I know you are a strong, optimistic person who will keep trying, but we all have our days when this seems overwhelming. Big hugs to you.

My husband is understanding. He gets upset at the hours I have at work. He wants me to concentrate on trying to finish my interupted finishing of my unfinished degree. I dropped out when I had the PE. Maybe it is because of the length of our marriage or maybe it is because he had to learn to do all the things that I did that he did not know how to do (like laundry, grocery shopping, cleaning, etc.) that he appreciates more of the amount of energy it takes. My 13 yr old daughter constantly watches me and asks me if I am all right.

I am tired/exhausted all the time, too! My heart pounds when I do the things I used to do. I started walking again, to the county road and back again-2 miles. I have to stop on the way back to get my heart to stop pounding so bad. My leg hurts and cramps at night, my chest hurts, and I still have problems with my balance and/or dizziness, but I am fortunate I have my family\'s support. Two years out since I first started to get sick, 16 months since the PE, and I still am not where I was.

I\'m sorry that you do not get the support, though it makes me appreciate my family more. I think that the understanding and help has made it better for me. My husband is healthy all the time too (so was I, before!), but he still understands that I have a long haul and that I may never be 100% again. Sometimes a listening ear that has experienced the same is better than a listening ear who has not experienced it. So complain here if you need.

Hi Ferr

Was nearly with you there with the tears cos you have been one of the people that always comes up with such good advice and support for everyone else.

Havent got anything magic to add but know how it feels with the frustration. Have lived for over a year with a pain that is still a bit of a mystery to the doctors so you do kind of feel sometimes that they think you are milking it even if they dont actually say so!

Just to let you know we are all here to share a moan anytime and think it helps just to find other people that understand.

Take care and let us know how you are doing

Kate xxxx

Ferr I\'m sorry you are going through all this. It\'s hard enough to have physical problems and then to not have support at home is not fair. You deserve to have support and to have someone to back you up. Maybe you should smack him around a bit and get your exercise that way. Kill two birds with one stone!! LOL JK I really hope you have a better day and can figure things out.

April that\'s a lovely idea and I may just do that lol

Ferr, I like April\'s idea too. Could we just have a giant intervention day and smack around ALL the people who don\'y get it, including x-docs?
My husband doesn\'t get it, he never will. I have chronic fatigue syndrome since my PE. I sleep a lot more than I used to and my husband is always making snide remarks about me sleeping too much and being lazy. I wish he could have just 1 day in my body -then he might think twice about criticizing me.
As far as the heartrate thing goes -heck I would top out you docs range sometimes just lying still trying to go to sleep. My heartrate was always on the high side to begin with, even when I was very physically fit. One of the reasons I ended up in the hospital a second time for 5 days after my PE was diagnosed was because I couldn\'t even stand up without my heartrate jumping up to 160\'s and me about passing out. I take a beta blocker called Atenalol to slow my rate down-at least I can stand up and walk around without feeling like passing out. I tried to go off the atenalol 3 times over the next year. Finally got sent to a cardiologist, 24 monitor, tilt table test -Atrial Tacchycardia- most probably caused from the PE. I can take the medicine or have cardiac ablation surgery-no thanks. So my heartrate is mostly 70-80 on a small dose of the drug which also lowers my BP so I am usually in the 90/60 range. If I break 3 numbers on top I am usually upset or ticked off. Anyway, I think the range your doctor gave you is pretty low. Heck , if I just go up one flight of stairs I am at 120. I can\'t seem to get the exercise thing goig again either. Every time I try, I end up paying for it the next day or 2. I had asked about a pulmonary rehab exercise program, and I don\'t fit the ctiteria.
One thing I have done recently that has slowed my heartrate some, and eases the chest pain and SOB a lot is a breathing class called Buteyko Breathing. It is named after the russian doctor who deveolped it and studied it. I finally found an instructor in my area. I had asked my x-doc about it and he ordered a book about it from the library -written in russian-end of discussion. Anyway it teaches you to learn how to slow your breathing and heartrate -as a PE survivor, I developed something called chronic hyperventilation syndrome- caused my SOB and chest pain- I breath too fast all the time, use the wron muscles to breath, breath through my mouth instead of my nose. I am sure it is what causes a lot of our longer term chest pain and SOB. Our body gets used to a lower CO2 level and then our brain makes us breath to keep up that level. So, we must retrain our brains in a sense to get used to a higher CO2 level that is normal. It will also make you sigh and yawn a lot -did me. The class teaches you to do that through certain breathing exercises. I have made progres and intend to continue doing the excercises to improve my health. The program can help people with all kinds of problems from snoring and sleep apnea, to panic attacks and hyperventilation, to asthma and emphysema. The lady I learned from is a resp. therapist , and long time asthma sufferer. She no longer needs any asthma medication and is very physically fit.
The other thing I have done is accupuncture. I thas helped -started that before the breathing classes, and am better. Not sure which had the most impact, -don\'t care as long as I feel better!!
Ferr, hang in there-we are with you! Blessings, Teri

ferr, just want to say i luv yah and send a big hug your way.

Hi Ferr. People like friends and families sometimes dont understand and think that we are milking for their attention when in reality we are in real pain which they dont understand because phyically we looked ok. It is frustrating but you are a strong woman. I hope things gets better. Hugs:)


Zalia

I'm sorry you aren't getting support at home. I hope it gets better. I just don't think people just can't understand this if they have never lived through it.

I'm the opposite with my husband and I know I shouldn't. He tends to pay lots of attention to how I am doing and he often frustrates me. He reminds me every time that I fuss at him for being so over protective that I don't know what it's like to be called at 4am and told to return to the hospital asap.

OK so now the Doctor is going to try something new. Today I start taking Metropolol tartrate twice a day to slow my heart rate down. I was taking it just at night and it seemed to help and I also slept like a baby. Hopefully it wont make me sleep like a baby at work, I don't think that would be good for some odd reason. Thank you all for your love and support. Hopefully we can get this fixed so i can get on with my life.
HUGS
Ferr