Aortic dissection & aortic aneurysm information support group

Aortic dissection, aortic aneurysm - The aorta - Life after an aortic dissection

When things are only normal on the outside...

I wear my scar proudly. I know a lot of people, my mother-in-law, for instance, would prefer that I hide it behind a high collar or a scarf, but I'm not ashamed of what I've been through. 

In the beginning, my family treated me like a fragile thing. I was cherished and pampered in all the right ways. But as my body started to heal on the outside, as I've been able to stay awake longer, walk longer distances, do more around the house, eat a bigger variety of food, work, drive, and generally live normally, everyone around me has reverted to treating me as if my dissection never happened. In some ways, it's a good thing. For someone as independent as I was pre-surgery, having to rely on others to do things for me was really tough. The truth is, though, I was profoundly changed by my dissection, not just because I had a nifty little stroke to go along with it, but because, among other things, I feel the strong hand of mortality nipping at my heels. 

It doesn't show on the outside, but I have a harder time processing information. It takes a bit more focus and concentrated effort, especially a few hours after I've taken my meds. I often have trouble coming up with the right words and sometimes that means my message will be misunderstood. I used to be the queen of multitasking, but that's a thing of the past now, and if I don't make lists, I'll forget even the most obvious things. Being completely absentminded, I'll forget to do things seconds after being asked to do it. I even need an alarm to remember to take my meds. 

I make mistakes in my work and forget to pay bills on time so I have a complicated set of checks and balances to make sure I don't mess up too much. We own our business so I'm able to make my own hours, but it's still a challenge to keep up. 

I also find that I'm not able to handle stress very well. Over the past few weeks, I've been tasked with moving my 88 year old mother into a care home. She went, kicking and screaming, and ever resentful because I'm unable to keep her at home. Finding her placement and getting her household goods moved was quite difficult with my kids starting school again and meeting with the bank to refinance our house. Frustration over my inability to cope with this heavy stress load has reduced me to tears several times. My husband makes a big deal to me about not lifting heavy objects, but he and everyone else seems to forget that what I really need is emotional support.

Yesterday, mom and I had an argument. She was being ornery with the staff and I asked her to be nicer to people instead which, of course, made her angry. "I'm going to die soon anyway. Why should I have to be nice?" she said. Well, because every day is a gift, I wanted to say. I'm only 47 years old and doing everything I can to still be here when my youngest daughter graduates from high school (she's 12 years old now) so my mom's point of view confounds me.

But, I don't know how to get the people around me to understand that I'm different on the inside and that my normal is so far from what I used to be. Nobody wants to hear that, even though modern medicine will probably keep me alive for a long time, that time is relative and conditional based upon how well I take care of myself. Even though my surgery is something in their past, I live with the effects of it every single day. I know they say the psychological effects of a life threatening illness are long lasting, but I really never expected this. 

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Comment by Cheryl Kerber on September 13, 2012 at 22:34

I felt like I was looking into a mirror!  Today out of the blue I got in a mood -- tired of just not being "normal".  I went on the site and here your blog was.  I will be 47 next month and my youngest(a girl) is also 12.  I too don't want to be treated like an invalid, but because we look normal (we can be pretty good at faking it), they do all forget (which is good in a sense) but at the same time makes it very difficult for us to function as like you said - things are just different.

You are not alone with everything you just wrote - down to the remembering etc., I was thinking it was only me.  I'm best in the morning - I can stay "tuned" in but it wanes as the day goes on - especially after lunch time.  My kids will talk to me, and it just doesn't register - and then I ask them questions and they tell me they just told me.  I feel horrible and don't want them to think I don't care.

It's like brain cells died during my 2 major surgeries.  And the meds don't help in that area either.

I'm still doing physical therapy for post surgical issues, but there isn't much they can do for the mental aspect - very frustrating.

My mom is only going to be 70, but she doesn't take very good care of herself, so I get concerned as there isn't any way that I am capable of taking care of her.  Right now, what I get from her is the guilt trip if I don't call.  It's hard to explain to her, that I'm just trying to keep up with raising my 4 kids, trying to work part time to bring a little money in, while trying to heal.  If I tell her any of this, then she gets all clingy and treats me like I'm sick or near collapse which I'm not --- it's just the mental aspect is hard to explain. 

I know that we can get more ornery as we get older, but because of what we have been through, I think we see life a little differently.  We do appreciate things differently and see people in a different light because we appreciate having survived what we have and are still here to hopefully see our kids graduate and move forward in life. 

I don't know if we can get our families and friends to understand.  I do understand - as I'm sure most on this site do.  I know that doesn't help you on a daily basis, but you are not alone.

Stick your ground and don't beat yourself up trying to be something you aren't anymore.  It will be hard for them because they are used to you being a certain way, but realistically that just isn't doable for us -- not without taking a negative toll on us which we really can't risk.

I've had to succumb to being honest with my kids.  Sometimes I break down, and they ask me why - and I'm just honest with them -- like when my daughter brought home some cheese curds from the church festival for me.  Why that would make me cry who knows, but I just went with it.  I didn't hide it.  I worked through it and then I was fine - life continues.  I used to try to hide it - I didn't want to burden them.  But you know what -- kids are very observant -- they know - they feel - just like our pets, so just be honest.

As for my husband - I think he understands - kind of - and again - I just have to be honest with him.  I might get the frustrated look, but to tell you the truth, it's not worth making ourselves bad and risk hurting ourselves physically.  I don't like to be a complainer - but if I'm not up to going somewhere - I just have to be honest with him, because the pay back isn't worth it.

I wasn't always "stronger" - especially after my first surgery -- but the journey I've been on since that first surgery and especially after my second, I've had to come to terms with: it's their problem if they don't understand not mine", I'm relearning, just like they are learning from our experience and hopefully it will make them more empathetic and non-judgmental as they grow older.

I'm not completely there yet - believe me --- but you have to start somewhere/sometime otherwise, you are right, it will take its toll on you.

take care and just know it's not just you - it's the blessing/curse we've taken on for going through what we have --- hopefully the blessings will out shine the negative,

Cher

 

 

 

Comment by Nicola McMeekin on September 7, 2012 at 8:53

Dale, I understand completely!!!!  I had my AD a year ago and still get 'wobbly' emotionally occaisonally.  I am grateful for every day - I have 2 teenage boys who I want to see grow up -but although I am OK on the outside some days are a struggle.  I too struggle with stress now whereas before it wasn't a problem, I admire you coping with all that you have re your mum etc.  People seem to forget we are still recovering or maybe they don't know what to say to us once we have healed physically. I understand what you are saying about your mum's attitude, every day is special, maybe that's hard to grasp unless you have had to face head on the possibility of not being here anymore. 

You're certainly not alone

Nicola

Comment by Graeme on September 3, 2012 at 14:09

Dale, yes. The surgeons heal us physically or at least give us new parts that seem (do!) work really well and in my case have so for the last 9 years - and I hope for many more to come.. but this sort of thing REALLY messes with your head emotionally even after 9 years and I know exactly what you are saying/feeling... It also makes you so mad/sad when people want to throw the towel  in (so as to speak) like your mother as this thing we have al lgone through teaches you to seize every day and live it and life to the full.. no matter what you forget or leave undone. :-) So like us all - grab a hold of life and live it.. and the emotional support will follow as well from your family with a little gentle reminding...;-)

Carpe diem quam minimum credula postero" ( "Seize the day and place no trust in tomorrow!")

cheers

 

Graeme

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