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Things that have helped


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One of the things that's helped me to adjust is seeing a neuropsychologist. Since I am a therapist, I never envisioned myself needing to see a therapist myself because I seemed to be able to use many tools to change behaviors, deal with stress, or navigate through daily life. However, when my SAH hit the scene, there were so many issues that weren't ordinary/usual to me and too much for me to handle all at once on my own. A neuropsychologist is different than a plain psychologist (although many may need this too) in that they don't spend 1/2 the time trying to come up with a diagnoses for you like depression/OCD or the like and yet they understand better than most about your issues. It also has taken some of a burden off both myself and my husbands' thinking of "How do we deal with this one?" There is an outside person to consult as strange happenings/feelings arise.

On the other hand, I got testing done (by a different neuropsychologist) and actually do not recommend it until you've gotten at least a year under your belt. I took my testing at about 4 months and it was stressful and the results indicated that I had deficits...NO KIDDING.

I'm 9 months now and wouldn't even do it today. However, a website that works on all areas of cognition is helping me to improve my cognitive functioning.

What have you found to be helpful along the way?

~Kris

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My Family helped me Kris....as it took a long while for me to get help....when I was in cuckooland I remember my daughter

making me do exercise on hands...I thought she was still my little baby so I played along with her...and when I went through

automatic doors I used to say "Open Sesame" to make my baby laugh...lol bet I was a pain....but without my families

backing...I honestly do not think I'd have made it...and that is sad really !

The OT's wanted to put me in home....I wonder how many are in home because of misdiagnosis ie hydrocephalus and all it took was a shunt to get me back to normality...well as normal as I'll ever be..lol...Hope an OT reads this !! and will not let someone down !!

Thanks to my Family for their Love and care xx xx They helped me as they never gave up on me xx

Think I get on there nerves now ha ha

Love to All

WinB143 xx xx xx

Edited by Winb143
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headway helped me loads, I'm one of those people who needs to know what I'm dealing with with any illness. Headway taught me about brain injury & what effects it can have & why I feel the way I do. It also helped me to know there are people with other types of BI that have the same problems I experience.

My neuro psych was ok but what I really wanted was counselling but the CBT was useful for identiying negative thinking styles, most of which I realised I did do pre SAH. I try not to think negatively now & with the help of the anti d's I'm getting there. It helped to have a sympathetic GP too,

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The neuro psych, an acquired brain injury support worker & BTG are what helped me. I didn't have any input at all post SAH for nearly 2 years and a combination of these 3 things helped me out of a world of confusion, exhaustion & denial that I had been affected. I had tried to go right back to my old life & really believed that everything would get better.

The cognitive tests were done at 2 years, the results were devastating, as was the gentle advice that these skills were now unlikely to improve. BUT understanding what bit of my brain function had been damaged was a turning point for me. Understanding that I couldn't get better just because I was absolutely determined to was the first step towards accepting the changes & learning to deal with them.

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As long as I can laugh at myself and others ..in a kind way...and remember Songs...Well I was never going to be a Brain surgeon..lol

(Bet you lot are glad I wasn't lol)

I can still do a crossword..etc etc anagrams remember my sisters n brothers xx Hey what more do I need ermm legs to move

better without backache ..Stop moaning WinB

Love to you All

WinB143 xx xx

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There are 3 things that have helped me really; BTG, my partner Andy and my friend Libby. Like most people on here, we left hospital with no information and had no input or support until I got a placement at Headway a month ago. I really could have used that 8 or 9 months ago, but it's done me a world of good to see how others have been affected by brain injury and to realise that really, I'm not too badly off at all. Everything I know about sah, I have learned from BTG. It was very good to find out that the weird itchy brain and watery feelings were normal along with the neck and shoulder pain and that I still suffer from even now along with the sleep issues. Andy used to do memory tests with me as soon as we realised that I was beginning to have a few moments of memory. I still remember the first time I could remember something from the previous day. BTG taught me to be patient with stupid comments like 'oh, I have a bad memory too, so don't worry about it'. I used to want to say to people, 'really? can you remember whether or not you have eaten today? Or if you have showered or not?' But everybody here really helped me to calm down on that one. As for Libby, she lives in my street and while I had no driving license she took me out once a week, every week. We went shopping, to cafes, to big houses, to museums. She well and truly kept me sane and has been an absolute godsend, everyone should have a Libby of their own.

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Hi, I'm still struggling, but a therapist has been a great help for me. About a month ago, I was feeling better emotionally for about 10 days and thought I was "cured" and didn't need her anymore. Within a few days, the depression and misery came back. I tried dealing with it on my own for awhile, but ended up calling and making another appt. She has experience with stroke patients and seems to understand a lot of what's going on with me. She helps me put things in perspective and is able to make me understand why I'm feeling the way I do. For me, there are a lot of confusing emotions (anger, jealousy, sadness, etc.) at certain people and situations that I can't figure out on my own. Having someone tell me, "I hear that all the time from stroke patients" makes me feel better and somewhat "normal." When you've gone through a major life threatening illness, lost a part of yourself, have physical difficuties and suffer from depression and mood swings, ya just need someone impartial to talk to and sort things out!

Of course, I also find btg a huge source of information and comfort. When you've gone through a life changing event, there's nothing more theraputic than

communicating with others who've gone through the same thing.

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Kris,

My strong willed personality

Suppotive family, friends and co workers.

BTG

My own determination to understand HOW the brain functions, being an investigator to how MY own situation is affected by the "white" areas along with the additional issues for mind & body.

Having already having limits on my health prepared me for this but it also ALL seems unfair at times but I do not let that feeling stay very long as I recognize how very lucky I am to not be worse off.

Giving myself permission to not be 100% - thats a big one to let go of. But I am not who I want to be and I need to believe everythign happens for a reason and my reason may be to slow down. Slow down and enjoy the life I do have. Maybe it being more simple is a blessing.

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Understanding that I couldn't get better just because I was absolutely determined to was the first step towards accepting the changes & learning to deal with them.

Gold,

I loved this part because that's what I'm struggling with now. I was always the best. I was the smartest, the funniest, the best listener...but now...I'm not. For about 6months post SAH I was taking ALL the advice I was given. However, I was totally overdoing everything because I believed that I could 'Will' myself to get better. I can't. Much of my healing comes with time and patience from my friends/family. I hope others will find this space way before I did. I've told everyone I know about it as it has really helped me feel like I'm doing great even though I feel like I'm not being picked first this time...maybe even last, but I'm going to play the game at least.

Thanks again everyone for your posts.

~Kris

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  • 3 weeks later...

I don't "know" any of you, but I think I love you all! Reading these posts is therapy.

What is helping me now:

My husband

My Children..esp my 16 year old daughter....amazing woman she growing into!

My dogs,

and walking a little bit farther every day with one of my dogs. Allowing myself to slow down and be social.

( I used to run for miles and miles with my 2 weimaraners, my goal is to be able to handle both of them again, and run a 5k this fall with my crazy male, hopefully that will happen).

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Keep your goal in your mind and on bad days just remember what you put....do not be put off by bad days....I was told ...

I will not walk again....they did me a favour as it lmade me prove them wrong. ..okay I push my wheelchair into supermarket...

when back aches I get in chair ..so it's been a long slow progress but I am getting there ...and so will you xx

Just wish by back didn't hurt so much lol arghhhh

Keep the good work up Mary xx .....Good to have a a great family around you xx

Without my hubby daughter and sisters I'd be lost...poor families we do put them thru it..lol

Love

WinB143 xx

Edited by Winb143
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