Quantcast

AVM Survivors Network

Introspection

Birthday today and time for reflection…

September 16, 2006; fresh start at the University, everything is possible:)
many future plans, never heard of AVM.

September 16, 2007; nine months ago I was diagnosed with cerebral AVM,
this year has been a year full of investigations, MRI, sleep deprived EEG, MRA, angiography, functional fMRI, decision time, waiting.

September 16, 2008, decided to postpone treatment until the end of the academic year,
managed to finish the second year at Uni just a week before embo.
Rikshospitalet, embolization (20%), hemorrhage, paralysis, exaggerated startle reflex
(no one had never even seen or heard of this before in the national hospital!)
Wheelchair, physiotherapy, stroke unit Ahus, Cato Center rehab, home for a short period.

September 16 2009; a year more or less in hospitals, Sunnaas, rehab, epileptic hospital, new home,
electric scooter, crutches, ambulance, three more hospital stays, swimming, more physiotraining, Sahlgrenska hospital in Sweden investigating exaggerated startle response.

September 16 2010; another year full of challenges, started studying again, my father died :(
Trip to Tromsø, managed to do one exam in Bioscience-, ethic-, and environmental philosophy :)
Helicopter ambulance at the Uni in the middle of a lecture, news from the neurosurgeon, no further treatment, no more embos, not able to do more studying this spring semester, another hospital stay, managed to do a MRI with exaggerated startle reflex :) no rehab at Sunnaas after all the effort,
no gamma in Bergen because the risk of getting paralyzed is 100% (!),
...so no more treatment options at all!
No sign of communication with the national hospital! Proton treatment in Uppsala, Sweden??

Mobilizing all my energy, decision time again…
August, decided to start at the Uni again (!)
managed to do two exams (oral and written) in immunology :)
September, course in molecular biology started.....

Status today: I can walk short distances without crutches, I can dance (!) and swim 2 km without a break :) almost no exaggerated startle reflex when I am in familiar surroundings, I can walk on wobbly paths in the woods with crutches, and it is possible for me to sit in a full hour lecture x 2 without getting seizures.
I am not able to run, bicycle or drive a car, I can not be in a noisy environment, take public transport a long distance or do serious shopping, such as shoes and clothing...yet....

For a long time I thought the only way to get on with life was to remove the avm and refused to accept the decisions that had been taken. At the same time, I was also very anxious that further treatment may lead to complications, as it did last. What would gamma rays actually do to my head?
I was terrified! I did not know what I wanted, but I knew I wanted to take the final decision myself.
Now it is not up to me to decide the rest of my life. So it feels....

The news that treatment is not an option for me anymore, has been difficult to digest, at times totally unreal! It came to a point where I felt completely paralyzed, unable to think ahead or plan the future.
At all! I was quite resigned.

Aside from the fact that I have not been physically or mentally able to continue my studies after embo,
due to the fact that I was paralyzed and without a home, being separated from my children,
in the middle of a divorce etc. I was no longer able to actually focus on concentration.
For me this was worse than not being able to walk!

Long periods of constant worry about where to live, when I would see my children again,
how I could get on my feet again, walk without crutches, driving a car, if my AVM will burst,
if the ambulance would pick me up after seizure and drive me to the hospital again,
if there would be a treatment option for me...at all?
And if so, when, where and what? How much longer until "everyday" life begins again?
During this period I learned I had reasons to fear but also how to live with it without anxiety.

I know it sounds strange, but in this difficult time it has been important to me to try to complete my studies, to complete something I had begun. Something I felt was a sort of under my control.
It was like my whole life had bumped into a stop button, all I wanted was to search for the start,
or fast forward.
I just wanted to be able to move forward in life, but did not quite know how to?

Study worked as therapy for me, the brief periods I was able to focus, to follow a lecture and complete an examination was as wonder drug for me :)

...but it were also times I felt it was a nightmare, when I was not able to physically attend a lecture,
when I had seizures in the classroom, when my head was completely empty as cottonwool,
when I could not fall asleep in the night, could not get up in the morning, was unable to eat or worse of all, having to sign of courses I had begun. Depression.

Today I know that even if I find the challenge of studying nourishing, I also know that this does not mean that I can not go further in life if I do not finish my studies, or that there will not be new opportunities for me. There are so many other things I can fill my day with, such as macro photography, walks in the woods or just see a beautiful sunset over the fjord, etc...
Being with my children in my new home. I love it :)

An important reflection that makes me better equipped to face the life that awaits me.
Yet I choose to give my studies a last chance. Yes, I have been extremely tired at times because of it,
and it also happens today. The reality of the life I live now.
I have had to learn how to live an exciting life without being fatigued.
I have learned to listen to the signals that helps me make the right choices, to rest, eat, to slow down,
to recognize when the task is too much, to change my mind if that is for the best for me, and I accept it.
Being busy with things I love to do improves the quality of life, which again combat fatigue...

It's really liberating when I can now see opportunities where before I only saw obstacles.
I hope I'm strong enough to carry out these thoughtful thoughts of introspection into practice.
Only time will tell.

Positive thoughts to all of you from Hanne xxx

Hanne ,
HAPPY BIRTHDAY !!!
Thank you for this lovely gift you share with us on your Birthday .
You are one who is infused with desire and one must wholely desire something to see it and make it so . Your abject honesty is the true path to understanding that alterations may well be necessary in order to achieve the ultimate goal ; To make " it " so as best you can with the mind and means you have and all the extra that you can dig out . You are by even the most stringent criteria always making it so and one great success at improvisation with determination .

HAPPY BIRTHDAY HANNE !!!

Thank you for your kind words Marianne :slight_smile:
It is 20.40 pm here in Norway and time for me to go out and celebrate my day. I will spend the evening together with good friends, playing cards and eat cake :slight_smile:
…so no study for me tonight!!

Happy birthday!!!

A late happy birthday from Sweden:)
Thank you for sharing youre thoughts. You are a really strong person and I think you can do anything with youre life. To se the beatiful in the small things in life and to keep fighting and finding the positive in all the darkness. I understand youre need to keep on with youre studies. It is inportant to do the things that is that strengthens youre identity and the feeling when you succed gives you more power to keep fighting.
You are truly an insperation and I wish you the best .
Tråkigt att höra om din pappa med som du skrev så är det ibland en brefrielse att få somna in och slippa lida mer. Jag tror som du säger att han kände att han var redo och att det var hans tur att gå. även så för min vän.
Hoppas du fick en bra födelsedag! Och att det kommande året innehåller många positiva överaskningar! Tänker på dig och finns här om du behöver någon att prata med
Kram monica

Tusen takk Monica :slight_smile:

Selv om jeg ikke vet om jeg faktisk greier å fortsette studiene så vet jeg at jeg ikke gir opp før jeg møter nok motstand og innser at det beste er å slippe taket og forsette livet i en annen retning. Alltid her for deg også om du trenger noen å dele tankene dine med.

Jeg har startet en undergruppe for oss fra Skandinavia, tanken bak er at vi kan dele våre erfaringer med hverandre. Helsesystenet vårt er slik at alle har rett til behandling men at det ikke alltid er opp til oss pasienter å bestemme om vi faktisk kan bli behandlet.
Akkurat det er vanskelig å forstå for enkelte her inne hvor det private helsesystenmet gjelder. Er litt lei av å høre at du kan jo alltids bare få en second opinion. Nei, det kan jeg faktisk ikke.

Klem Hanne xxx

Hanne, it has been really helpful for me to have found this site and for your encouraging words in your blog.

My kids are not hanging around much as they are teenagers and it’s not so cool to be with Dad, even if I’m sick (but not all the time at all). Since embolisation six weeks ago I have had 3 seizures, and have not had much help from neurologists, GP’s or anyone else.

I want to adjust my medication but realise this can have a negative affect on seizures as well. I feel trapped, and when a seizure begins I have terrifying thoughts about how unimportant I am in relation to the universe and “it doesn’t really matter” until I lose conciousness.

Does anyone else get this or is it just the part of my brain where the AVM is situated?

It’s coming into spring here in New Zealand so I am looking forward to warmer weather and longer evenings, trying to find some positives. Your messages have really helped me cope, thank you very much.

Positive thoughts to you all too. Phil : ))

Philip: I am glad you found this site and my blogs helpful.
That is really encouraging for me, to continuing share my thoughts and time in here with all of you.

I have been trying different types of “typical” anti seizure medications without much success. At the moment I am taking only Piracetam, which seems to help for my myoclonic attacks.
Philip. you are not “unimportant in the universe”, thoughts like that, is a way to handle facing a seizure, like “whatever happens happens sort of state”.

Have you read my blog “The Voyage to Seizure”, there I describe how I feel when I am facing a seizure. When I finally get there, “it does not really matter anymore, whatever the outcome will be…”

Lucky you, facing springtime!
On the other side of the planet, literally, which I think Norway is in relation to New Zealand, we are facing a new winterseason. The first snow was falling yesterday, and the sunset is getting earlier every day…
Not my favorite time of year, when the darkness and cold penetrate and give rise to winter depression…

I guess it’s good that you know what I mean. I just got back from a walk in the forest with two doctor friends, they understand medically but the actuality of enduring a seizure is not something they can imagine.

I just find them scary as they come on, I’m not so bad afterwards (I think I’m in shock).

It is nice to have springtime here just as I am facing up to some of the realities of my treatment, sorry you have winter and feel it will be depressing. Here the clouds are great for photography in the winter - we are exposed to the “Roaring Forties” winds that encircle the southern oceans.

You can see some pictures from my place here: http://www.youtube.com/watch?v=7sEqlLTI7TA

Everything is being like spring today, the sun is out and there is a jolly breeze across the harbour, people are sailing yachts and fishing…

Philip: When it comes to the understanding of seizures, I find that there is a lot of “experts” that do not know how to approach it, if they can not find the pattern they are seeking from the EEG.

Thank you for sharing your stormy view. I love taking pictures of the clouds, something about the ever changing pattern that I find fascinating…