My Wife has a CM, feeling hopeless

Discussions of issues related to living with cavernous angiomas

My Wife has a CM, feeling hopeless

Postby hausmusic » Wed Jul 31, 2019 11:18 pm

Hello all,

I really don't know where to start. MY wife has been living with her CM for the better part of 11 years now, with multiple bleeds / ooze events. The CM is in the left side of her brain, she is too high functioning for many doctors / neurosurgeons to consider her CM operable. The CM has left her with right side motor skill / grip weakness, issues with her speech (mixing up words / difficulty stringing together complex sentence,) and near constant migraines. I try to encourage her to live more in the moment and accept herself as she is now, but I know these deficits must be brutal as she is quite smart and in an intense working environment with a lot of high demands needing quick decision making.

She has been feeling very hopeless about her situation and worrying about deteriorating. We have been toying with a second opinion from a center that seems to be well regarded in this forum located in AZ/Chicago. What ways are best for me to support her? How do you fight the loneliness and feeling like things will never get better and only get worse?
hausmusic
 
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Re: My Wife has a CM, feeling hopeless

Postby heave2468 » Thu Aug 29, 2019 2:28 am

Hi Hausmusic - I'm so sorry to hear about your wife's situation, I can some what relate, everyone's situation is different but I was also in a high pressure job and I ended up leaving to get help and focus on my health. An every day struggle.

for me, having something wrong with me that people cannot see is the lonely part. Because it isn't a missing limb or broken leg, it sometimes feels like even the people closest to me are ignoring my pain. The longer I go without reaching out to friends the harder it becomes, when I do find time to connect with people who understand and accept me, it is always worth it, if she can find the energy to do so, it might help her too.

The feeling that things will get worse is a tough one, I'm still new to this disease, discovered I had it in Dec. 2016 and had surgery in Jan. 2017, and for a time it seemed better, but that was short lived, because these things bleed. I try to take 1 day at a time right now, and I'm working on self compassion, as a previously high performing professional it is not easy for me to forgive myself(the headaches that keep me from work) as my symptoms increase, maybe your wife is feeling similar.

Hearing that your wife has survived for 11 yrs running actually gives me hope, I am amazed and impressed with anyone who can handle this disease day in and day out for that long, she must be made of steel.

We are currently looking into (AZ)Barrow as well, from what I see on this forum it is worth the effort, fingers crossed it works out for both of us.

My partner supports me by being open and honest about the ramifications of my new limitations. We talk about how things have changed and he lets me mourn my old life, pre-bleed, while still helping me to remember the changes I made for my health, helping me uderstand these are also successes.

I'm not sure if any of this is helpful but your post sounded so familiar to me.

I really hope things can improve for you and your wife, good luck and if you believe in it, God bless.
heave2468
 
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