Do Family/People Not Take You Seriously Anymore?

General
21

Bob...I totally agree with you about the Keppra mood swings. I was only on 250 mg daily for a week and was "snappy", crying, mentally exhausted, and constantly falling asleep. I've been off it now for three or four days and am still feeling it's effects!
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Zilly...I know you've heard me agree with you about this already. lol But this week, probably fueled by the Keppra situation I just mentioned, has been the week from hell on this issue! Even my usually supportive husband seems to have boarded the "You're crazy!" bus. But if you ask me several times during this day, "What's wrong? You don't look so good." and I reply that I have a severe AVM headache and you give me water to take morphine pills for said headaches ...that should give you a clue that I don't feel well! lol

Then I turn off the bright overhead light, leaving on the lamps in the livingroom...go hang up my jacket and return to find the overhead light back on although both my daughter and husband are in the kitchen. I turn it back off and then say to them, "I just turned that light off, why is it back on?"

Mike & Christina then have a debate over this..I hear something about "What's her problem?!" Knowing that I didn't hear everything and that perhaps they misunderstood me, I said, "I just said why is the light on when I just turned it off? That's all."

The two of them got mad at me for being "crazy", "bitchy", and not listening to what they say! I walked away to bring some tissues to the upstairs bathroom, then return to the livingroom to find that darn bright light turned back on! But I'm the crazy one, right?

Sigh...you are definitely not alone in this, Zilly!

22

Hi Zilly,

I understand your concerns and your frustration. Being in the shoes of the relative, I can perhaps try to explain to you why they are reacting the way they are.

In my partner's case, he collapsed because his AVM bled and he was unconscious for a while, then confused, he could not really make decisions for himself in his state. I ended up being in charge of everything related to his treatment and it is quite scary. I am not a bossy person and taking this kind of decision was difficult but hey, I had no choice and I always kept his best interest at heart.

When my partner improved and came back home, he was still a bit confused and had the beginning he needed some help, to walk etc...
I can tell you, after being used to decide for him, I found it a bit hard to let go and let him call the shots. Not because I thought I knew better but because I had an irrational fear of what might happen if he made a "wrong" decision.

It was even harder for his mom, who was living with us during his recovery. She thought that as a mother she knew best (and most of the time she did to give her credit) but it was hard for her to let go and respect my partner's decisions.

Maybe you already have, but perhaps it is worth seating with your family and telling them how you feel about that and calmly state the obvious, that you are in charge of your own life and that they need to trust your decisions.

I think people cope differently when confronted to this kind of situation and let's face it, it's hard to understand what AVM patients go through.

After reading the different comments (some of them quite shocking to me!), I found it interesting that the exact opposite is occurring to my partner. Since he looks recovered and healthy, people (especially at work) tend to undermine what happened to him (his nearly fatal bleeding).

They don't get Juan gets tired more quickly and that multitasking can be a struggle, especially if he is tired.

I lost a friend because we were invited to a picnic a few weeks after my partner was discharged from the hospital and my ex-friend thought we were using Juan's been tired as an excuse not to go since he looked fine.

Either way, I think the best is to communicate and insist on your wished because no matter how annoying you may find your family, in the end they have your best interest at heart even if they do not act the way they should. Point them in the right direction and try to be as patient as possible, your efforts will pay off!

Best wishes

23

I think my brother would agree. After he had his 3rd bleed he was sent to rehab to recuperate. While there he witnessed his roomate die (coded the day he was supposed to go home), he already had a history of depression and anxiety before that, but this was the icing on the cake. After that he kept complaining of excrciating back pain, couldnt participate in therapy because each movement was too much for him. He cried out in pain a lot, he was self-defeating (verbally) and his confidence was at a low. Now with my brother, this was not any different from his norm, I essentially thought that this was all psychosomatic, but I felt he was entittled to feel grouchy b/c he is only 39 and going through a crapload of stuff now. Well, I dont think I will second guess him, b/c the pain was real, the increase in weakness was b/c of CSF buildup and he needed a shunt.

24

This is good advice, Fe. Due to being way over-medicated for a number of years, I was unable to stay awake very long or concentrate on anything...and therefore was unable to do so many of my former responsibilities in my home. Those tasks then fell on my husband's and daughter's shoulders.

When I fell and broke my neck in March, the doctor at the rehabilitation center cut my med dosages down by 2/3! Within a week I was my cheerful old self, doing physical therapy (that I should have been receiving all along!) with gusto and helping other patients. Needless to say, I have since fired my old neurologist,whom I had already been unhappy with before this happened.

Since coming home from rehab, I've been able to take a number of burdens off my daughter's shoulders. But instead of being happy she gets constantly pissed off at me! I guess she's not happy with my being a Mom with opinions again! lol

25

Hi Connie
I agree with you on the over medicated by doctors. When I had my stroke due to blood clots ( a rare one of course) they put me on topomax which I was constantly asleep...my primary doctor told us I needed to get off it after two months..or I would not recoop
Then a few months later I developed the fistula due to the stroke blowing up some of my veins...I too had to rely on my husband to everything except the laundry
Now I am trying to do more and now he blew out his knee and cant do much so I am calling on a friend to hire her to help once a week. I am back at work but still have pain in my head from the embolisim and pain in leg from my stroke. I just try to do as much as I can and dont worry about what I can not do. As for your daughter I think she is probably just worried and maybe she likes the extra responsibity. Let her do it.
Good Luck with your recovery
Angela

26

I never had bleed or stroke. Just gamma surgery and a grand mal a few months back. I have all my wits about me other than some "instant" memory issues and some physical balance coordination issuues, and visual disturbances. Mentally, I'm sound. Thank you though.

27

Hi Zilly,

I can't relate on the level of before and after the AVMs, but I can relate on the level of family members not taking me seriously because of relative lack of income and getting older. It must be especially hurtful because it's your spouse that is treating you this way.

Hopefully time will help your husband realize that you still are the same person. In the meantime, you have all of us who understand.

All the best,
Debbie

28

Zilly, just thought that I'd mention that I haven't had a bleed or stroke either, thank God! Like you, my mind is fine and I do have some coordination/short term memory issues...but I also suffer from some nasty headaches, left-side facial & hand/arm numbness & weakness, exhaustion, etc. The physical therapy is helping the hand weakness some. Occupational therapy helped my finger coordination too, but insurance is no longer covering that. Maybe PT could help with your coordination problems a little?

Connie

29

I don't have the same issue, but my family seems to doubt my migraines are debilitating, which drives me nuts if I let it. I've decided that they are my 'zen' teachers since I have to learn great patience since I do love them dearly. You can't change people, only your reaction to it. In our crazy modern world, learning a little zen is a good thing :-)

30

Thanks everyone. I just get so frustrated anymore. Like the last person who understood me now does not understand me any longer. I feel all alone these days. Now I'm constantly arguing with my caregiver and life partner, my best friend. It's very heart-wrenching when find out you can no longer be sure you can trust the last person you thought you could trust. They say one thing but the expression on their face tells a whole other story. It just seems like nothing I say matters, it's just always going to be wrong, or not taken seriously, and my condition is the issue, and I'm not thinking clearly. It always starts out, "Since your surgery"... And it's like, if I hear that one more time I want to just pick something up - something heavy - and throw it at something that will break. You know? lol. I've tried the power of zen, I've tried breathing, heavily, slowly, counting to 10, self-hypnosis, walking away, walking far, far, away, crying, showering, sleeping, everything...I am just at the end of my rope. I just feel like I'm stuck in a bottle and everyone around me is just barreling down on me and I cannot get out.

31

My husband and my mom were doing something like that to me and finally I got fed up and said look I am back and stop second guessing me...and it took a few times of having to get mad and raise my voice which I hate to do but after a few months now they say hey she remembers more than we do and who had the stroke and angio and embolism..etc...
I also did a mental test for social security that my insurance made me do and they confirmed that I had no mental issues and said I had a high IQ and then I went back to work but at work they demoted me (but are paying me the same for six months) and are having me do really easy stuff but in this job market and with my husband out of work since he quit to take care of me I am just rolling with it for now...
Its very frustrating. Its like once you are down they cant see the progress that we make each day. Sometimes I have bad days and I just say I am bit coo coo today but really who does not have bad days...even people who dont have serious health issues.
This is a safe place to vent. I think for me since I have always been independent and making my own money it was really important for me to try to go back to work and even my husband sees I am happier and got more energy and he tells my parents who still think that I should not be working at all much less now I am full time.
It sounds like you are independent as well and its especially frustrating because its hard for us to have people take care of us and be dependent on others.
I hope he can see your progress and appreciate what you have been through!
You have been through a great deal and it does take time to heal but you will get through it.
Angela

32

Hi. Thanks for your post. How was the CSF build up diagnosed? Had he ever experienced any leakage from his ears? Thanks, Laura

33

I feel that way and don’t know what to do. Also I second guess myself. Every time I forget something I’m like uh-oh what now. My confidence is not good. Any advice so appreciated…

34

Right with you,My AVM surgery cost my marriage of 25 yrs. Yes and I am glad to have put that torment behind me.It's so good to be able to recover in a stable environment.Your confidence will be back.Try not to beat yourself up too bad for what others are not capable of understanding...stay connected with the positive people in your life.Take time for yourself and do what really makes you comfortable..