On 3 July 2013 I was diagnosed with a cerebral aneurysm, which later turned out to be two. This blog is a journey into my brain as I deal to the aneurysms lurking there. Along the way I'm calling on the collective proverbial wisdom and sage advice of some recognised (and maybe a few not-so-recognised) writers for aphorisms which complement my journey.

This is not just a personal journey but also a journey of discovery for everyone who has, had, or knows someone with a cerebral aneurysm.

Thursday, 18 February 2016

“You feel fine, and then, when your body can't keep fighting, you don't.” ― Nicholas Sparks

This month I'd written about feeling good and the next one was about looking after my ABI. Back then I felt pretty good for how I was - feeling great where I'd gotten to in my recovery. But today I've dropped back a couple of steps.

I've known that so many people who had been through their brain aneurysm have fully recovered, went back to work and felt great. Others felt very similar to me - up and down, up and down. For me, this is related (I think) to my stroke, but I still feel that my aneurysm sticks its middle up at me and, even though it's clipped, just wants to feel that it still reigns inside my brain. Either that one or its the second one, still in there, not fixed.

Last night my beautiful dog was very sick. She wandered in the yard and found any sort of grass she would eat, she breathed much faster than usual, she drank two bowls of very cold water one after the other, she laid down and I worried about her. She would stop breathing often, and I'd lie beside her and hold my own breath until she started again. Some time this morning I had to go to bed. She slept, and this morning she is much better. I don't think I am.

Sometimes I think I am working on my recovery and am doing very well. I have started reading again, most days. I am still volunteering at the Redcliffe Art Gallery and once a month I do a 4-page newsletter for them. I have enrolled with Estrada's Diploma of Counselling and I'm getting through it fast. I occasionally write my blogs (I've done a total of 26 so far this year). I occasionally update my main website Reibus. I am the secretary for the Redcliffe Peninsula Poets group and I've designed a logo and some administration paperwork. Recently I've even joined the Labour Coalition Party and I read pretty much everything they post because, for me, fighting the extremely bad policies thought up by the current LNP government is my future.

But my recovery has dropped off this week. I'm wondering if some of this can be blamed on summer. Far. Too. Hot. I am so tired. I can't ever seem to sleep a whole night - 3 hours would be the max. Most times when I'm reading I'll find myself asleep. I pack up and go to lie on my bed for a decent sleep, but I can't sleep then. I am so hot - even lying down makes me even hotter.

I still don't have the decision from QIRC and it's 9 months since the court case, and wondering ever single day drags me down. I've planned on what I need to spend, because relying on my DSP will keep me in poverty. This year I've paid my car registration, RACQ for my road-help membership, the dues for both of my websites and ACA membership in relation to my Diploma of Counselling. Far too much for my income, so I've had to borrow from Centrelink. Doing that reduces my DSP for 6 months. That becomes a revolving situation - I can't save anything while I'm paying this back.

Perhaps I shouldn't be telling you about this... but getting it off my chest might help me.

This life is so different than I used to live. Sometimes I don't think my body will keep fighting.

Wednesday, 10 February 2016

I have brain damage; deal with it! ~ Sharon Stone

Since I discovered this little gold thing which Sharon Stone said last year, I feel that this is definitely me as well. Of course I have brain damage! I had a brain aneurysm; I had surgery in April 2014; I had a stroke; I was locked into BIRU for 6.5 weeks. 

Sometimes I feel I'm one of the very few who suffered both of these things in Australia. I'm a member of Aphasia group but it seems that I'm the only one of them who had a stroke with my brain aneurysm. I'm a member of Synapse group but it seems I'm the only one of them who had a stroke with my brain aneurysm. I'm a member of STEPs... etc, etc, etc.

I know there are a lot of people on the BASA Facebook page who had a stroke with their brain aneurysm, but I very rarely have heard from any of them. I would love to know: 
how many of those who had a stroke with their brain aneurysm are able to talk, read, think, walk, feel?
Brain aneurysms are not ever something that a "normal" person can just wave away. ABI - Acquired Brain Injury - or TBI - Traumatic Brain Injury - often happens to a person who has had their brain aneurysm worked on in surgery. 

The Synapse "Acquired Brain Injury: The Facts" booklet, page 4, says
People with an Acquired Brain Injury do not necessarily experience a decline in their overall level of general intellectual functioning. Rather, they are more likely to experience specific cognitive changes that lead to difficulty in areas such as memory, concentration, communication and behaviour.
Bayshore in Canada said the
most common causes of non-traumatic ABI include stroke, hypoxia, brain aneurysm, brain tumour, prolonged exposure to toxic substances, alcohol/drug abuse, and meningitis or encephalitis resulting from viral, bacterial, fungal, or parasitic infections.
Brainline.org has a very well-written page on brain injury, which reviews how this can be discussed with other people. They have written about how our brain overlooks everything, such as physical, cognitive, communication, emotional, behaviour and social functions.

Karingal, in Victoria, Australia, said that brain aneurysms are one cause of ABI.
Pate Rehabilitation in Texas, USA, said that ABIs are from many brain injuries which include aneurysms.

Neuronetwork in Ireland agrees that stroke can come after brain aneurysms and cause ABI.

The Brain Injury Alliance in New Jersey, USA, has a pdf booklet which gives basic information about brain injury and how they are treated, and includes BAs in "acute" brain injury. This different word is also used in Europe, but means the same thing.

Am I going on? Well - just read any of these! This is throughout the internet-accessible countries and includes real existence and real treatment. If any of you have had ABI or know someone with ABI, please make sure that you have found information about how to get it treated. It is definitely necessary at least in Australia! And if you are still reading on, please make sure you know this:

I have brain damage; deal with it!

Friday, 5 February 2016

"Mistakes are always forgiveable if one has the courage to admit them" ~ Bruce Lee

Being the administrator on the Brain Aneurysm Support Australia Facebook page occasionally discouraged me. I reckon I've had a Google bed  whilst I'd looked for so much information for BASA. I now have a l-o-n-g bookmark section! Some of the information seems very blah, some of it is repetitive, and sometimes I have to put in different words in Google to try and find an article about something which has caught my attention. Some, though, really do work.

This morning, on my own Facebook page Brain Aneurysm Research Funds, I had listed a few blogs which I have found. These are so good for anyone with a brain aneurysm, gone or still there, and ABI or TBI which can often happen to a BA survivor. These days I think I have ABI. These blogs are:

Each blog is for the author's feelings - like, for instance, Kara Swanson is very happy, while Will T's blog is very much anti-life after his BA let him down. Have a read - they're all worth it.

Recently I had signed up to the ABC Active Memory brain games, and sometimes I'll follow them onto their website and join in if the game appeals to me. This morning it was a brainteaser called "The Password". My brain didn't work the way this finished... but I think that many, many people who read something like this brainteaser would do just what I did - think "logically". Have a look at it and see if you got the correct answer!

I'd found the PACE program (Positive Action towards Career Engagement), during my search for anything for BASA earlier last year. I joined it, and I went to meet my mentor, Steph, at her ANZ branch where she is a manager. That lead me into my interest for any courses I could have done, and I found Estrada College. I have signed up for a Diploma in Counselling which starts next week. I could have gone to university, but right now I need to keep recovering, and I feel that this diploma will help my recovery and will help me in any relationships I seek with people in my area who have an ABI or TBI from their brain injury.

So, how do the blogs I mentioned earlier and the ABC brainteaser and the PACE program work in together? For me, these are steps towards my recovery, and slot in with many other things I have found over the past months since I got out of hospital. I might have written, sometimes, with a feeling like Will T, but mostly I feel like David or Kara or Heidi. I know that it's a hard road, and maybe I'll never be exactly how I used to be - but you know... sometimes I feel that my BA and stroke have been a step into a wonderful future. Maybe I'll never get as far as I'd love to, but I feel good... very good about where I am.

And I'm still here!