Have many of you downsized / simplified your life & in what ways?

Would be nice to know if anyone has recognised that they needed to simplify their life in order to manage, eg change jobs / not work, decide not to have children /get satisfaction from other things & if if it was an easy decision.

flower
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How have I downsized/simplified my life after my AVM?

My background first:
I am 57 years old, AVM discovered in 2008, (frontal L/H side cranial) no treatment as of yet, with regular monitoring via MRI’s.

Well,…In all actuality,…a few changes.

I have lived a very active life so far.

I spend time with my children as much as possible. (my daughter and son actually saved my life)
I still work for the same employer. They have been so very gracious and understanding of my condition.
I still exercise and work out, keeping my body in shape. I also exercise my mind and try to keep on top of my mental exercises too. (my attempt to keep from having long term and short term memory losses)
I still ride my Mountain Bike.
I still drive my sportscars.
I still maintain my home and property.
I still compete in amature sports/combat pistol shooting events.

So actually, not many changes to my life, with the exception of the following:

Since I have had two seizures (taking a “keppra” generic 500mg twice daily);

Trying to cope with my headaches, ranging from severe migrains to pressure system headaches.
I stay away from deep water and have severely reduced my pool, lake, river, and deep water activities.
I have severely reduced and actually basically eliminated my “rock climbing/rappelling activities”.
I try to be very aware of my mood swings, and am learning how to anticipate them and in turn control them.
I realise that there are times when I cannot remember very simple things, and yes,…I beat myself up on those situations, do to my memory losses.

Basically I refuse to let the AVM controll my life, I try to do what I want, when I want to do it. I do realise that I will either: possibly need to have a procedure performed, or: gamble with my life and hopefully see if the AVM will reduce in size and correct itself.

William

The one thing I have done is SLOWED down!! I have always had a rosey outlook on life (except for a few thoughts on how long my life would last), but I still always rushed and to be honest took a lot things for granted. I have 2 children and always wanted more, but I don’t think I will have any more natural children. I have also always wanted to adopt and will someday be in a place that will make it possible. I am always thinking about getting a new job, but because of how wonderful the company I work for was during all of this, I feel like I have an obligation to stay where I am and from what I have seen since returning to work the ship would sink if i wasn’t there.

Yes I have bad days and good days, and I am starting to recognize when to slow down. I can sometimes sense if I am going to have a seizure, and turn off the noises and stop what I am doing. I am not working but would like to try to do part-time. There are days when I have felt off all day and end up having a seizure. I realized this was happening in hindsight. I haven’t had one in many months. I still take care of my 2 boys, and clean, and I have a large raised vegetable garden, and try to continue learning about horticulture, although things don’t always record in my memories! I tried school since I was almost done when I had to quit, but I had to retake an assesment for math, and did horrible. That area of my brain was affected.
I make new friends and the boys play baseball at Rancho Buena Vista little league so we keep busy and meet many people there. Every few seasons I take on a team mom position…keep positive.

Hi guys,

Thanks for your replies, am looking forward to seeing who else chips in!

Finding it a bit hard to keep positive atm (sorry) which was why I posted it up.

What I can do,well, after losing my job, I:
Work voluntarily.
Maintain my home and garden
Do courses
Keep fit at the gym
Meditate as this helps me stay balanced.
Do yoga
Read
See my friends and look after them

What I can’t do
Work full time
Drive as I have epilepsy, but I can cycle.
Rely on my memory as my short term memory isn’t good. I have to keep a calender split into 'morning, afternoon and evening.Does anyone else use one of them or similar memory aide?
I don’t take holidays as my executive functioning (planning etc) skills has been affected.
I can’t do too much in one day as I tire easily which still annoys me as, after 20 years of this, I’m still no good at explaining to people clearly why i get tired & still don’t manage to pace myself. Is anyone else the same?
I have to limit the amount of noise I’m exposed to.
I also have to watch my moods.

HOWEVER, and here is the but, despite all the above I managed to get a BA Hons Degree after the avm was diagnosed and operated on.
I can’t have children as i know I wouldn’t be able to cope.

flower
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Erica Morrow said:

Yes I have bad days and good days, and I am starting to recognize when to slow down. I can sometimes sense if I am going to have a seizure, and turn off the noises and stop what I am doing. I am not working but would like to try to do part-time. There are days when I have felt off all day and end up having a seizure. I realized this was happening in hindsight. I haven’t had one in many months. I still take care of my 2 boys, and clean, and I have a large raised vegetable garden, and try to continue learning about horticulture, although things don’t always record in my memories! I tried school since I was almost done when I had to quit, but I had to retake an assesment for math, and did horrible. That area of my brain was affected.
I make new friends and the boys play baseball at Rancho Buena Vista little league so we keep busy and meet many people there. Every few seasons I take on a team mom position…keep positive.

Hola Flower,
Have many different life situitions since AVM back in 03’. Your statement regarding The Executive Function, really cought my attention, I too have very weak executive function, So bad I can’t work.
ANY ideas/ways you know on how to improve this function?

Hi Gerado,

About weak executive functioning. Have you had assistance / therapy to help with this as it is one of those infuriating INVISIBLE things that many people just don’t get. (Like fatigue and memory problems).

Umm,

I was advised by a brain injury specialist to keep my life simple.(Which am not very good at!)

Try a calender divided up into sections to help with planning your day.

re; work or any task, break things down into sections.
I try to remember that I am lousy at planning so have to actively think ‘ok, I’ve got to do such and such’ ie it doesn’t come without thinking, if that makes sense.
Only do things a bit at a time, eg tidy up one drawer or do one task at a time. Don’t aim high.
I write lists before going shopping.
Read up on brain injury and how the brain works to help understand the beast.

Be kind to yourself

flower
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Gerardo (David) Barriga said:

Hola Flower,
Have many different life situitions since AVM back in 03’. Your statement regarding The Executive Function, really cought my attention, I too have very weak executive function, So bad I can’t work.

ANY ideas/ways you know on how to improve this function?

I had started to volunteer at a homeless shelter a month before the discovery of my AVM and it brought me so much happiness! I went back to it as soon as I could after my surgery and it still gives me that feel good feeling that I don’t get from any other part of my life. Yes my children bring me happiness unmatched by anything as well as my family, but volunteering brings me a different happiness. I highly recommend it!

Smoke w. said:

hi my name is smoke . no it was not an easy decision i graduated top of my class in art design school 3.63 received honors two trophy’s. i was given 6 month to 1 year to live in 02 i’m still here by the grace of god my avms are inoperable and untreatable. Ive spent all the years living with several extra diseases that poped up afterwards fibromayagl and Parkinson disease. I’m bipolar part of depression that may go along with the Parkinsons anyways. theirs no rule book Ive found therapy psychological and physical to have been helping the most right now . not working i have had to move and separate from my partner of thirteen years and raising my step daughter that was in 08. i spent 6 years waiting to die and trying to live and finding no one who could understand or relate. i was suicidal from the pain in my body and life had no hope my friends talked my into keep on going. one thing that really worked was Chinese medicine.


not working has created a no social life my friends left when i got sick and my partner plus my social security is the basic, i didn’t have enough work credits the way the ran it it was there they didn’t take the diagnose back far enough because i went to work after i got out of school.so i get ssi make sure you know what you’re looking at receiving . it a long and grueling process 6 months minimum where you cant work while you wait for benefits to go thorough. make sure you have your neurologist sign off on social security if you go that route. its what made mine go Thur the 1st time instead of years were you cant work while your waiting for social security to kick in . however long it take the give you a check for the back amount from the time that you applied.



finding out what you can do now as to what use to do is hard but its possible and a process. there wasn’t a support group like this when i was sick i just found this wonderful gift and have met a few people who have been helpful positive and beautiful people.who are helping me to re-inspire myself to do things like my art work and most of all no I’m not alone this congenital disease affect’s 1% of the population . i haven’t been satisfied in awhile until recently i started accepting what has happened has happened and all i can do is try to have a team of professionals doctors therapist and social workers help me with the life management part.the rest is up to me



the happiness is up to me. and that’s a struggle satisfactions I’m working on that one is difficult because there are so many things i cant do that i used to like ,sitting standing walking for long periods of time.its effected my whole life .then i remembered the saying if you think you got it bad someone has it worse. so Ive been feeling less sorry for myself and pushing the envelope even though it hurts . but be reasonable and take breaks when and if you need, them i pay the consicinesess when i don’t listen to my body. and do what is right for me at the time .



simplifying my life i had to i have a hard time with my thought process its slow and i forget a lot and no its not a simple process because if i try to to do the things you used to be able to do at the level that i was able to achieve before i had my avms rupture, i may frustrate myself, or if i hold myself at the same level of capacity and i don’t truly have that capacity I’ll come up short every time. another words be real with yourself honest and give it your all but do a personal inventory and see what you are truly cable of and what you want to create for future goals you wont know until you try. be gentle kind and treat yourself like you would treat your best friend with the same condition.



hope this was helpful

sincerely smoke

best of luck it a life process that’s why i shared so much instead of just saying do this or i suggest that. feel free to contact me

I am really enjoying spending the summer with my daughter. First time I have not been working in the summer. No stress or deadlines. I hope I can figure a way not to have to go back to work when I am released by my doctor.

Hi Flower,

Congratulations on earning your BA degree, especially after all you’ve endured. That is really terrific!

So often I hear people say that after having a tragedy in their lives they learned to have a much deeper appreciation for life and to stop and enjoy the simple things more. I think it’s great they’ve been able to experience that. But for myself, for at least most of my adult life, if not before that, I already was acutely aware of all I had to be grateful for and tried as much as I could to be in each moment, to “be here, now” so to speak. But certainly after the AVM rupture it hit home how quickly and easily my life could change, or how quickly and easily I could lose it.

My life has changed a great deal since the rupture. There are many things I used to do that I either no longer can do at all (hiking, back packing and dancing are just three). I used to be able to clean my entire house in one day. Now, I’m lucky if I can get one room done in a day. When I can afford it (which isn’t often) I hire someone to do some cleaning for me.

I used to do all my own yard work. Can’t do that at all anymore. I hire people to do that now. I used to have a vegetable garden almost every summer. Now all I can manage is a few tomato and herb plants. My goal with the garden is to eventually have some raised beds built so I can work from sitting in a chair.

I’ve learned to come up with adaptions for the things I want to do and can manage. I now use a bar stool to sit at the kitchen counter to cut and prepare food, and sit on the stool to wash dishes (we don’t have an automatic dishwasher - we are the dishwashers! lol). I use a shower bench to sit on and have another one next to the bathroom counter to sit on while I do my hair and makeup (when I do makeup!). We have several ‘grabbers’ around the house so I don’t have to try to bend down or lean over, as my balance is lousy and I’ve had lots of falls.

I have to use Loftstrand (arm cuff or Canadian) crutches for distance walking, and my neurologist has suggested I get a scooter (need to ask him for a prescription for it). I have these metal things that fit between the mattress and box springs to hold the bedding off of my since, because of the neurological pain, it hurts so much to have bedding, clothing, shoes, socks, etc., touch me.

The more I do in a day, especially walking, the weaker my left leg gets and my foot starts to drag. I’ve accepted that when I get tired (some days it just doesn’t take much for that to happen) it’s alright to do whatever I need to to take care of myself. I don’t like having to sit or lie down as much as I have to, but that’s just how it is.

There are lots of other adaptions I’ve had to make, and I invent stuff to help out all the time. Every once in a while I really miss being able to do some of the things I used to do and can’t do now - most especially dancing my fanny off, and sometimes I have frustration about it all. But mostly I just feel like this is my life now, I’m still alive and can still do lots of things, even if I’m very, very slow and people are always way ahead in front of me. I always feel like I could have had so much more damage from the bleed and I’m just happy to be able to do what I can.

If there’s anything that continually frustrates me it’s people forgetting that I can’t do all the things they do, that I can’t keep up with them, feeling like I’m in people’s way, that I have to do things they don’t have to do to take care of myself when I’d rather be doing as much as they’re doing, etc. I do grow weary of the need to remind people, and because of those kinds of things I tend to stay at home more than I might otherwise.

I did have to stop working and that has been a real drag.

But I think I’m mostly used to the life I have now, and I think that, all in all, I do pretty well with either accepting the things I can’t do, or making adaptions to the way I’m able to do them. And I don’t let it all make me unhappy - I’ve always been a basically happy person, and I won’t let this change that.

I just HAD to cut back to part time work after trying to work my usual 50 hours a week that is pretty much mandatory at my organization to work full time. I couldnt keep up the first 4 weeks i went back. So then I lost my position that i have held for 8 years and was a big part of my identiy. I was really upset at first but now i realize i had no choice but to slow down. andsometimes life at a slower pace is better and you can apprciate more. I have a 4 year old, and now i hope i will be able to sty up to put him to bed instead of falling asleep at 7pm every night after work… i think it will get better

Flower, Hi. My name is Ben. I’m 48 and became disabled with multiple symptoms from my avm a year ago. I’m single and I have no children. I use to work and live a very active and happy life. I don’t think I made any decisions to simplify my way of living but, my “illness” did it for me. :slight_smile: I no longer drive more than 4 miles away from my home. I don’t go to the mall or shopping by myself any more. When I do attempt to work on my house, I no longer go up ladders. I have also chosen not to date anyone…I think that would complicate things even more, for me any way. I definitly do things a lot slower and I can’t multi-task like I use to. My short term memory has been failing as well. Because of that…I have trouble learning new things. I am on dilaudid for pain. Other weise, I couldn’t function at all. I do as much as I am able to do.
I have definitly learned, I have limits now that I didn’t have before I got “sick”. The changes I had to make in my life was not easy at all. I’ve always been a very indepenent person. Now, I have to rely on my friends and family for help. That is probably the hardest thing I had to come into acceptance of.
I’m glad you posted this discussion. It helps me to see what others had to do as well.

Hi, Flower. My name is Libby. I’m 51 and have been diagnosed since 1974–but I think we all agree that I was born with my AVM. I have seizures that are mostly well-controlled with Keppra and Tegretol. Days vary and I try to pay attention to my energy limits which are definitely not what normal people enjoy–or what I had a s a young person. Sunnier seasons and climates are better for me in general but I live in Portland Oregon and manage. I see a Chinese doctor for acupuncture and she encourages me to rest any time I feel the need. Over the years I have learned that this is good advice.



I used to teach English in an inner city school and while I loved it, I couldn’t continue. So I live a simpler life now, am an artist, spend a lot of time on cultivating health–used to swim 4 or 5 times a week, now I walk. I eat fresh organic food, etc and try to manage my health with good habits. I have one child.



Sometimes my life seems dull in comparison to what I used to be able to do and it’s hard–but on the other hand I credit what health I do have to leading a simpler life.