1/23/2016
I wonder how many relationships will survive my PE. My husband has been great throughout this but there were times that I wondered about him as well. He saw me at my worst when I was in ICU. I was on bed rest so he helped me "bathe" with baby wipes and he washed and brushed my hair. He even emptied my bed pan. I feared he could never find me attractive after that. I felt like an invalid and didn't want to burden him. When I went to see the gynecologist for my regular PAP smear she offered to tie my tubes. I sat there in confusion then I said, "I'm only 34 and I don't have kids yet." She told me she doesn't advise I ever do have children since I had the DVT/PE and being pregnant puts women at a higher risk of blood clots. My husband wanted children. I wonder if I'm robbing him of a happy life. He doesn't really want to hear me talk about my fears of not making a full recovery and it has even caused us to argue sometimes. Maybe thinking about it upsets him and he wants to stay strong for me.
My mom and sisters have been the least supportive out of everyone. I can't say that surprises me since they have always been very self-absorbed but it does hurt me. Friends don't get it. I had a friend ask me if I wanted to meet for lunch the day after I got out of ICU! While I was happy she wanted to see me I didn't understand how she could be so out of touch. Friends invite me to parties and to have drinks and they just don't get I am tired and want/need to stay home and rest. They don't get I have to plan to do things and conserve energy if I plan to do something outside of my normal routine. Every time I increase my activity level I pay for it and my body demands rest, plus I get short of breath and my heart rate increases. I've always been independent and a loner but I don't want to come out of this completely alone.
My mom and sisters have been the least supportive out of everyone. I can't say that surprises me since they have always been very self-absorbed but it does hurt me. Friends don't get it. I had a friend ask me if I wanted to meet for lunch the day after I got out of ICU! While I was happy she wanted to see me I didn't understand how she could be so out of touch. Friends invite me to parties and to have drinks and they just don't get I am tired and want/need to stay home and rest. They don't get I have to plan to do things and conserve energy if I plan to do something outside of my normal routine. Every time I increase my activity level I pay for it and my body demands rest, plus I get short of breath and my heart rate increases. I've always been independent and a loner but I don't want to come out of this completely alone.
Replies
I feel so bad because aside from the friends wanting to socialize part, my situation is similar. As difficult as it might be, try to focus the marriage vows you each made and believe the best. We have fought also and that really frightened me. I feel in that situation the best thing is to maybe voice it to the support group instead. At least that\'s what I\'m going to try and do. I went from feeling beautiful (to my husband) and adored to a burden. We cannot do a whole lot but do our best to recover. I am pretty pessimistic but we have to try and think the best. As far as children, perhaps when you have recovered more you can evaluate the possibility of adoption?
I was always a loner and independent too. Seems like a dream now... Just know that I do feel where you\'re coming from. I don\'t have any good answers for either of us, but hopefully it helps a bit to know someone gets it.
Hi, about getting pregnant, find an OBGYN who works with high risk pregnancy. You can plan a pregnancy safely. Women who\'ve been on the PE board and the DVT have gotten pregnant, have had healthy babies and did not clot as a result.
Something to understand is that while we experienced our clots and all that comes with it, fatigue, fear, etc, our spouses and families experience it as well, just from a different vantage point. Our spouses deal with it too. And for our friends and others not understanding, they simply can\'t, since they\'ve not experienced it. If we\'re honest, I think all of us can say we\'ve had friends who\'ve gone through things we either didn\'t understand or where we weren\'t as supportive as we could be.
One thing one of my friends did was pull me aside at some point, about 2 month after my PE, and said, point blank, so, are you just going to act like a sick person from now on? It was a jolt hearing that. But she was right. I was acting like a sick person. Hearing that kind of turned things around for me, realizing how I was coming across.
If friends ask you to do something, be grateful. Our worlds get very small after a PE, so it does feel like, how can they just be so cavalier. Well the world keeps turning and they are just living their life, as they should, and by including you, they\'re asking you, BEGGING you, to do the same. Getting out and being with people is important. It redirects your thinking, gets you out of your head, reminds you that you\'re still here in the world and that your friends and families need you to be engaged with them. Otherwise, why the hell bother surviving something like this.
@rmb You\'re right my world has gotten very small. The PE has consumed me mentally and obviously physically. I feel like I don\'t know who I am anymore. Even I don\'t fully understand why recovery takes so long and it isn\'t like a broken bone I can put a timetable on. And not feeling back to normal at 4 mos in now has me depressed.