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AVM Survivors Network

Get your life back!

Good morning, friends!
It’s been a very, very long time since I’ve visited this site. From the first seizure in Dec 2009 to this very day, my journey has been, at best bumpy and at worst torturous, and it’s not over yet! However, I have learned a great many things about life and I hope some of these lessons will help you guys in some way.

DOCTORS:
Problem: Sadly, my experiences of the UK NHS have been horrendous. I was ignored shunned, palmed off, shouted at, dumped in A&E for up to 6 hours- even though my AVM was known and I was having what presented as a stroke and had to have several tantrums to get neuropsychological tests. It’s only in recent months when I got my hands on my medical records did I discover that I did have a haemorrhage.
Answer: If you are feeling overwhelmed and frustrated in a similar situation, DO NOT TAKE NO FOR AN ANSWER! Shout, scream, cry. Don’t feel as though you’re at their mercy, stamp your feet. If you’re too unwell then take someone with you who will and demand you get every test possible. There are only a few you need. CT or MRI in an emergency and neuropsychological. If you have an AVM in your brain you are likely to suffer some form of brain damage. It doesn’t have to rupture, but it will divert blood from the surrounding tissue causing cell death. The sooner you find out, the sooner you can get neurorehabilitation.

REHABILITATION:
I never got to have this. I was stuck between health boards with neurology being in one and neurosurgery being in another. Both argued back and forth that it was the other’s responsibility to pay for treatment. 10 years on I’m finally getting to see a neuropsychiatrist. Albeit 10 years too late as the damage is done, the brain is dead and the new neurons that fire, allowing for healing after damage, are long gone. I may get some helpful tricks on working around the memory and behavioural control issues so I’m giving it a go. DEMAND IT. Don’t give up nag and nag and nag. There are funds available, there are programs running and you are entitled to it!

MONEY:
This plays a huge part in the darkest times of the last decade. The UK government does NOT like disabled people and they make things as hard as they possibly can for people in the hope that they’ll give up trying. The key here is to get the letter. Ask your doctor to give his report based on the descriptors that the DWP layout for what they decide makes you disabled. When applying for the old ESA, my psychologist had to write the same information in 3 different letters to word it in a way that made it clear which descriptors were satisfied by my disabilities. You can easily find these descriptors, if you’re struggling then you can contact citizens advice or the disability advice bureau and they will send you a copy. If you find your personality changing, you get angry or you lash out, make this very clear!

FAMILY:
I have lost my family. The only family I have left is one cousin and my two children. Some say it’s harder for the family around you than it is for you when it comes to a brain injury that changes your personality. I can understand that they’re almost mourning the loss of the person they loved and grief can be a terrible thing to cope with. During the years where I was struggling to get benefits, couldn’t work, had no money for food for my children and lived on food bank boxes, I saw my parents, who lived locally, perhaps 5 times. I heard they regularly prayed in church for me. I’m not a spiritual person but I understand how it helps, but it’s not a substitute for actively being there for someone.
Being family to someone going through such huge changes is hard, it’s upsetting and sometimes it’s hopeless but, as a wise man once said, suck it up, princess. I’m sorry I haven’t found a better answer for the family. Be the sounding board, the emotional punching bag and be prepared to pick up a lot of pieces. IT GETS BETTER. It took a long time but I’m much better at controlling my behaviour. However, even 10 years on, I still struggle in public, I can’t cope with changes, unannounced visits or diversions in plans. I think this is why it’s so important that brain damage is diagnosed quickly and rehabilitation can be put in place. FIght for it as soon as you can to reduce the impact this will have for years to come.

FUTURE:
So, what seems to be the last leg. After the fights to get help and benefits I had carers, 3 times a day, for 5 years. My family were slowly cut off as, shockingly, they all suddenly wanted to know me when they could benefit from me financially! I got to a place where independence was a possibility. However, do not ever assume that because you’re OK in the house, that your finances are steady and you’re coping with life that means you’re better. You have to constantly control your environment. Who you have in your life, where you go and what happens. Don’t let those around you tell you you’re better now, there’s no excuse to not go to a big family function, or somewhere that puts you in a vulnerable position. I’ve been accused of using the brain as an excuse to behave badly, to avoid seeing people, to be selfish or nasty. It’s a hard thing to accept that you will probably not be who you used to be, but you are still you and whatever you do, don’t allow anyone to try to force you to be who you used to be to them. It will end in tears for everyone. Being a different version of yourself isn’t a bad thing. You’re not a worse version or a better version, just a different version. And it’s who you are now that has to plan for a future, give up planning aiming to be who you used to be, it’s a waste of energy, aim to be a better version of who you are now. It’s a much more achievable and satisfying goal.

I went back to college a couple of years ago at 39 years old. The equality act has opened up a new world for people of any disability. I explained my problems, it was really hard work, but I completed a year-long access course. My behaviour could be aggressive at times, emotionally charged and inappropriate, but I worked around it, although if the other students had to describe me in one word I think it would be, “intimidating”. Don’t be scared of these things, people adapt and adjust and it’s a learning curve for the students that there are people with problems and they made exceptions for me. It was great to see just how willing the rest of the world is to be understanding.
When it comes to learning academically I struggled to keep information in, but, I learned a trick which helped immensely. I drew out most of the things I was studying. I did forensic science. There was a lot of chemistry, atomic structures, etc. I drew atoms, I drew how they bonded, I drew human anatomy. The images were so better at sticking in my brain. The college understood. I worked backwards then from the images into words for the essays. It worked and I encourage anyone that is struggling with reading/writing in large and complex ways to try this.
As an example of how the brain damage lies just underneath the surface, right at the end of my course I had an ESA assessment and, despite all the evidence, I was thrown off and had to try and apply for universal credit. I was told my money would be stopped immediately and I had to get a job. I had applied to go to university but over the next 12 months of tribunals and cruelty, I spiralled into devastating places, suicidal, self-harm, a rage that I hadn’t displayed for years. I was placed on medication after sedative after antidepressants and I was almost sectioned. I won my tribunal in November of last year and the Judge recommended that the DWP never assess me ever again. I missed being to start the degree, my children one again, suffered greatly because of my behaviour and once again I had to start having home care support.

That was just a glitch in my recovery. I’m starting university next month. I’m making sure that every possible bit of help I can get is in place. I have plans laid out for any worst-case scenarios the could turn up. If I can do it, with a really significant level of brain damage and against the terrible things close family, friends, and the government have done to me and my life, then so can you. There are a few things that I have tried to instil in my children and one of the most important things is that nothing gets done unless you do it. It’s pointless staring at a messy room and wishing it was clean. Clean it, clean house, get rid of those who are holding you back. You’re not responsible for keeping people around you happy, by all means, try to put a smile on someone’s face if you can, but not at your own expense. The best thing you can do to make others happy is to get to a place where you can make yourself happy, please believe me because I have had 10 years of learning this at great cost to myself.

Have a long term, a big dream of a goal. Think about what you need to get to it. Then think about what you need to get that first. Then think about what you need to achieve to get there.

Stamp your feet, don’t be afraid to cut out the negative, write 16 page long e-mails to MPs. Never, ever stop fighting for a better future version of yourself. And, once in a while, remember to thank those that are around you after all the abuse you may hurl after all the times you lost it and flipped a table, after every angry outburst or hurtful insult, hold their hand and say thank you.

The fight is worth it in the end.

Good luck to you all x

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Sarah, first let me tip my hat off to you. There is so much valuable insight in your story, it’s amazing. There should be someone who could turn your story into a book.

Secondly - to all of us (including me) - read what Sarah wrote here - at least two or three times. There is that much of value in it. The paragraph that starts with “Have a long term, a big dream of a goal…” If any of you are like me, and if you are, I apologize :slight_smile: , but this is a really big struggle. What can I do? What can I do when I can’t do what I want to do? What do I have to do to get there? Wallowing in self pity is acceptable for only short periods. Then it’s time to move past and get your life back - even if it’s a different shape or size, it’s yours.

Thirdly, well, here’s an example of what a brain AVM and embolizations in the brain do. I can totally remember while reading Sarah’s post that there were three things I wanted to comment. For the life of me, I can’t remember the third one…

Oh wait, here it is! The more I read stories like Sarah’s, the more I talk about my story and get reactions to it, the more I’m convinced that the way we can make something out of this damage and this struggle is by telling our story. Don’t hide it, don’t attempt to downplay it, call it what it is. One of the cognitive struggles I’m dealing with is when I’m talking to someone (in pretty much any situation), I have a hard time bringing the right words out. So I say that, “Ugh, i can’t think of the words I want to say… See this is some of what happened.” Everyone has been very understanding when I acknowledge it and bring it up out front rather than try to “hide” it. You wouldn’t hide a broken leg or cancer, why hide this three legged monster?

Okay, enough rambling for the moment.

And I hereby nominate Sarah for the motivational post of the day, week, month or whatever…

TJ

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