HAS ANYONE GIVEN UP THEIR INDEPEDENCE BECAUSE OF THEIR AVM. HAS ANYONE FELT INADEQUATE OR BEEN ANGER RIDDEN? TO ANSWER THE FIRST QUESTION, I WAS VERY INDEPENDANT PRIOR TO MY AVM. I HAD MY OWN APARTMENT. I HAD A GOOD JOB. MONEY IN THE BANK AND A CAR. I TOOK VACATIONS AND I DID MUCH PHYSICAL ACTIVITIES. ALL OF THIS I HAD TO GIVE UP FOR A DELAPIDATED WHEELCHAIR AND NO MONEY AND A TEAM OF HOME HEALTH AIDES. HOW DO YOU DEAL WITH THE CHANGE? PLEASE HELP ME!!
LINDA
Hi Linda,
Certainly understandable to be angry, depressed, mad, hateful, sad, cheated, and a slug of other similar emotions.
My wife had an AVM many years ago, survived that relatively unscathed (in the giant scheme of things) and just this year found out she has colon cancer. Surgery, now chemo, then who knows. Prognosis is good. One of her comments was "I survived the AVM, have been taking great care of myself, eating well, exercising, doing it all right. Now CANCER??????????????????"
It will not be an easy adaptation, but here's my two cents worth:
Find a good counselor who can help you sort out your feelings. He/She will likely have you write them down as it helps to organize your thoughts/feelings. Then together, you can assess where you are and try to formulate a plan to go forward.
Treatment / followup on your AVM will have a lot to do with recovery.
Know that your plan can't show "here I am now, and in six months, I want to be 100% like before." Your plan will require revisions as you progress. There will good days/months and bad days/months.
My guess is you will be surprised at how much you can improve in a short time. Celebrate that success.
Thought about this some more: Try taking a sheet of paper and make three columns on it. In column A, write down the things you no longer can do. In column B, write down how that makes you feel, in column C, write down ways to mitigate column A. For example, if you write down "Can't drive to get groceries", in column C write down all the potential people that can either drive you there, or go get your groceries for you, or a combo of both.
Hope this helps.
Ron, KS
It is hard to give up your independance Linda. Before my bleed I was very independent. I worked a very high paced, high stress job. I would occasinally travel alone to visit friends, etc. I'm now unable to drive so I have to rely on friends and family for trips to the grocery store or to doctor's appointments, or haircut appointements. I am married and I have two daughters. I can no longer live alone. While I am able to function relatively well and I can take care of my house and my children, I often have accidents around the house. I've caused two very small fires (no damage thankfully), I've fallen down the stairs a few times, I am unable to manage finanaces at all. I was making a pretty decent salary in my job, now I'm living on social security disability. I understand your anger and your frustration. It's hard accepting help but the truth is we need it. It's taken me a while but I've learned to accept that this is just part of my new life. I don't nearly the physical limitations that you do, but I still need help walking around stores or restaurants. I have a left visual field cut so I tend to bump in to things a lot. My advice is to give yourself more time to adjust. Understand that your friends and family want to help you, so don't be afraid to reach out to them to ask for help. It's natural to feel angry sometimes but try to focus on the positives. For me those are my husband and my kids and yes, my dog! You may find it helpful to talk to a counselor. It may help you deal with the anger you're feeling. Having a place to vent like this group is very helpful for me.
Hi Linda- Losing independence absolutely blows. I try to focus on what I’ve gained rather than what I’ve lost-it’s a very unique experience, and you end up being a different person. The way I see it, you deserve to see all that you’ve gained while being easy on yourself when mourning your losses.
BTW-I like Ron’s 3-step thing; I don’t know where you found that, Ron, but I like it.
Thanks Julie,
Actually, I thought of that myself, though a counselor I went to had me do something similar.
Take Care,
Ron
I rely heavily on my husband. I had to give up everything because of my stupid hemiparesis that is NOT getting any better no matter how hard I try. I've lost everything including my ability to study. I was going to school to better myself and provide more for my kids. I didn't get "dumb" after my bleed but I have no real sense of focus and numbers now give me anxiety now. I had to back off this site because everyone else's recovery and success stories were depressing me. I'm afraid of elevators now. I can't "walk" on a second floor if there's a half wall showing how high up I am (like in malls and, ironically, most medical centers in my area). I don't even go to malls because people just freak me out now. I no longer have the energy to play with my 5 year old....his energy completely drains me mentally. My hobby is now facebooking (out of sheer boredom, I had to reactivate my account) and reading. I shouldn't even count reading as a hobby because I can't focus more than a chapters worth of time. It totally blows and I'm sick of it. I see people running and I'm like....OMGlob, I'd KILL for two working legs so I could run. I hear people complain about working and i'm like OMGlob, I'd kill for a job I could actually do which is impossible because...there's just too many reasons (not excuses) to list. I started doing more around the house but then I'm tired all day. I miss hiking and running and drawing and climbing the playground at the park with my son. Sitting on the beach, holding him while I take him out in the surf while he's bugging and gripping me 'cause he knows I'm where it's safe. It's all gone. All of it. Now there's just...this cripple with a hole in her heart and I hate myself and this life...BUT....I smile because there is still air and there is still life and there is a purpose for this...just need to find it. By the way, my wheelchair got repoed....don't feel too bad about yours being dilapitated.
Dear Kristi,
I understand how everyone sucessess are bothering you because some don't have it as bad as we do. I too, feel like I hate myself and this life. But, I keep going. I am more afraid of death and nothingness then suffering with my AVM operation that went bad. Do we have a purpose? I don't know....Maybe we both represent the people on this site who have it pretty bad...who can't walk, work or do much. Maybe our role is to be a voice for them. You sound like someone who understands me. Lets keep in touch.
Linda
Absolutely! If anything our negative outcomes may put a more positive spin on others recoveries. That's about as positive as I get except that I can at least inhale and be thankful it's air I'm breathing.
Linda,
Felt inadequate? Yes. Felt angry? Yes. But the feelings are a valid part of the journey. It’s nothing but frustrating losing what you once had, the independence, the working thing, the physical activity and a bunch of other things. While I continue to say this (ad nauseum), everyone’s journey is different, the sucky part seems to remain the same. I won’t even try to lie about that. But Ron’s advice is awesome. I especially like the column thing. It can show you how you cope despite it all. It’s a start anyway. And the counselor thing, I know you don’t have money, but be honest about that and some counselors will want to help just because of that (I hear they’re good people ;). Finally, just know that we got your back on this and just venting on this site to people that have been there and/or are supportive helps too. Take care and (((( hugs )))) to you.
:J
I would appreciate to hear from all members of this forum and especially those who have brain AVM, about this topic, as with the situation I’m involved the increased-dependency was the first sign, that something is wrong and led later on (long history) to discover the AVM.
I’ve heard the same from others who have bAVM, that they have increased-dependency.
It may have been something that is going unnoticed by people, as people are not paying too much attention to this issue, and therefore there are not too much research about it, especially while they are being busy with the bigger issues of the AVM.
I would like to add that in the case I’m involved, we took a neuropsychology evaluation which turned out that all the brain motor functions are thanks god intact, which leads me to the question, what is the cause/source of the increased-dependency and if it’s at all related with AVM.