To live with AVM puts life in a totally new perspective for most of us. The small things in life that I usually took for granted such as reading a story for my children, waking up in the morning, watching the full moon over the fjord, playing a piece of music on the piano, a beautiful sunset, icicles in a frozen night, the first flowers in the spring, walks in the woods etc has got a whole new meaning for me today than before (I love to catch the moments in my photos :)
It has been important for me to admit to myself that life must go on, on a much slower pace than before to avoid fatigue. Before I did not know why, but today I know the reason and that is an important difference. It is therefore also a lot easier to accept the slow pace and live it out :)
It is not the pace of the life that I find "exiting" but life itself. I find it helpful to focus on all the positive things and really appreciate the small things in life. Instead of falling into a depression over the things I am not able to do anymore, I like to think I have learned from this experience.
Positive thoughts helps against fatigue :)
Being an active student and mother of three wonderful children require that I always have to listen to those signals that helps me make the right choices, no matter what anyone thinks. I trust my intuitive voices and go with them. To listen to my body helps me to know when to rest and that helps me to avoid fatigue and seizure. Life in itself is the most important gift I can give to my children, I will therefore always prioritize health than to wear me out on other things that may not be important to anyone but myself, like studying.
To be present in life, active or passive and be able to work with things that has a value to me, do not drain me but gives me lots of energy :)
Being busy with things I love to do, improves the quality of life, which again combats fatigue....
Positive thoughts and love
Hanne ! Keep catching the moments in your photos because there amazing. Do you take those pic from your front porch,deck or landing what ever they call it in oslol Take care and rest a lot talk at you later : )
Thank you Gordon, I will
I love to take photos, especially macro photos and will probably add more and more of them, in this space.
The sunset is taken from my veranda, as we call it in Norway.
Take care Gordon, talk to you later in the chat space:)
God bless you. I keep reminding myself; that life is not measured by the breaths we take; but by the moments that take our breath away. And the good thing I also discovered is I started to journal, and take pictures, so I wouldn’t forget those moments. I now have short term memory loss, so it helps me remember. And it’s kinda fun going back a year to show yourself how much better we are. I hope this helps you. You have children to live for. Much love Linda
Hi Hanne, thanks for this post. Found it really helpful. I was wondering how you manage to bring up 3 children and study? That must take some organisation! Do you study part or full time, have you got some system for ‘quiet time.’ Do you have support? I know I need a fair amount of quiet time, it keeps me healthy.
It is not easy to bring up children and study at the same time, fortunately I have children that are very understanding. They all go to school themselves so we do homework together
I was studying full time right up to one week before my embo, then I had a year break and am now studying after my one pace. That is, I am registered as a full time student, but only take the exam if I manage to follow the teaching and have energy enough to actually read and get to the Uni.
I am trying to have “time off” for “quiet time” and rest as often as I need to, I do know that it is very important for my health and so do my children.
I find sitting on my veranda enjoying the beautiful view very healing as well as taking photos especially in the woods, playing on the djembe and doing yoga on the floor
My week is pretty busy though, going to Uni twice, seeing a physiotherapist twice, swimming twice, as well seeing a psychologist twice! But if I feel tired and do not have much energy, I will cancel it ALL and ONLY have focus on rest and family life (very important!!)
Lucky that I get someone helping me with washing and that I do not need to worry to much about income, since I get rehabilitation pay during this period (even if that is not much to get fat of).
Unfortunately I do not have any family living close, they live far north above the artic circle in Tromsø, and I am newly separated from my husband, his family are from UK, so most of the daily tasks I have to manage myself, with great help from the children, but we are doing fine. They are a great resource and not a “burden”, old enough to look after themselves in many ways… I love them
Best wishes to you too Flower
hi hann just readingyour blog on about how to combat fatigue your good at putting your thoughts into words and its good reading them all the best shane
Very nicely and poetic messages. Thank you for this uplifting input. I want to share my feelings in a some what mutual way. I need to combat more than fatigue. Mood swings, Negativity, self pity and helplessness seems to be my worst enemy. This is leading me into a very wrong direction. I am hoping someone would have some suggestion.
THUMBS UP!!! WAY WAY UP! Hanne I love the wonderful outlook you have! I have learned the same lesson. Stop and smell the roses and then pick a few to give them to someone you love to see the joy in their face. Life is good love is wonderful and I am here to experience it all!
Allan: I am glad you found this blog uplifting
This is just a few words about how to combat fatigue that has helped me.
The most important is to realize that if you feel fatigue, mood swings, negativity, self pity and helplessness, there will always be a method to combat it, for you.
All I can say is "wow" Hanne. Being that i just found out about my avm, I already found myself feeling down, not so positive and questioning why this was happening to me. I'm tired all the time and all I want to do is hide under my bed.
Just reading you post has inspired me to do the things I take for granted even if that means talking a short walk through the park. I'm trying to think of things that would make me happy and help me get through this. I actually just bought a journal ,so that I can write about my experiences after leaning about my avm.
I'm young, and have no children. I'm praying that one day I would be able to have my own family and enjoy life to the fullest with them.
Thanks for the post.
Nayleen: I am glad you found some inspiration reading my blog :)
I find walks in the woods or writing the thoughts that I am thinking really therapeutic and it does not require that much energy and effort.
Having said that, I also have times when I am so tired that I just want to hide in my bed!
I think that it will be a natural part of our avm life, something we´ll have to accept and give space for.
Regarding children, lots of us avm survivors have children, we all survived :)
Positive thoughts from Hanne xxx