brain injury survivor Archives - Jumbledbrain

Guest post: Advocating for Your Health Post Brain Injury: A Mini-Guide

Michelle #jumbledbrain — Fri, 02 Jun 2023 15:10:30 +0000

Guest writer, Julie Morris has kindly compiled 7 of her top tips on how to help you advocate for yourself with your healthcare providers. It can be overwhelming for patients at the best of times, but if like me you struggle with your processing speed and memory these crucial appointments can be even more challenging. But Julie has some good ways to deal with some of those issues and has included lots of useful links that explain each in detail.

Julie Morris is a life and career coach. She thrives on helping others live their best lives. It’s easy for her to relate to clients who feel run over by life because she’s been there. Today, she is fulfilled by helping busy professionals like her past self get the clarity they need in order to live inspired lives that fill more than just their bank accounts.

To find out more about Julie go check out her website juliemorris.org.

Living with a brain injury can be challenging. Proactively and positively advocating for your own health can help you manage your condition, be healthier, and improve your quality of life. Personal health advocacy, if you’re unaware, is the act of taking responsibility for your own well-being, learning to navigate the healthcare system, and empowering yourself to receive the care you deserve.

Below are some advice and suggestions on how to advocate for your own health post your brain injury, along with useful links to get more details:

Find a solid healthcare professional

Your choice of therapist, doctor, or other healthcare professional matters. Your treatment and recovery will go smoothly if you have someone experienced, knowledgeable, and caring in your corner. You should prioritize experts who specialize in brain injuries. For the best results, shop around, ask friends and family for recommendations, read reviews, check the legitimacy of licenses, and carefully evaluate the care you receive during your initial visit. PyschCentral expands on this further.

Educate yourself on your condition

Knowledge is power. If you know your condition, you know what to expect and the best practices to follow to recover (or improve your quality of life). Furthermore, knowing your condition also helps you receive better quality care from your healthcare providers. For instance, you want to be able to ask your doctor the right questions and better follow along with treatments. NICE offers a brain injury guide that you might find handy.

Organize your medical records

Organizing your medical records offers many benefits. There may be times that you need to check back on what appointments and specialists you have already seen. To reduce stress and save yourself time, file away all your records and documents. You can quickly find information when you need it, you can share information quickly, and, generally, better understand your condition and health history.

Often different specialists and types of appointments (i.e. online or in person) will use different platforms and devices and often will not be able to accept all document formats. However, the one that is pretty much universal is PDF so converting all your documents to PDF will solve this issue for you. Instead of having multiple files creating clutter, you can use a PDF merging tool to keep all your documents in one file. This will cut the time it would take to find a single document. Once you combine PDF files, you can move the PDF pages to get your records in the right order.

Prepare for your doctor visits

Preparing for your doctor (or therapist) visits beforehand is key to making the most of them. Remember – doctors are often pressed for time and are only human, so they may miss things. You should collect relevant medical records, note symptoms, and prepare a list of questions to ask your doctor before you go. Asking your doctor relevant questions is critical – it’s key to getting the best care from your doctor. TIME offers a list of questions doctors strongly recommend you ask them.

Consider private insurance

For those of you who live in countries which have a state funded healthcare system, such as the NHS which caters for residents of Britain, you’re probably used to relying on them. However, the NHS has many problems currently. Switching to private insurance (and healthcare) may give you access to better healthcare options, with reduced waiting times. Before making the switch, do your research. Underst and key insurance terms, compare insurance plans, and check coverage offered. When in doubt, consult with an expert.

Live a more healthy lifestyle

Self health-advocacy is more than seeking better healthcare – it’s also about directly taking charge of your health by living a healthier lifestyle. Get plenty of physical exercise weekly to feel good in your body (it also helps your mind). If you work a lot, you can still get some exercise by taking the stairs instead of the lift and going for a walk during your lunch break. Following a mental health routine is also essential. It can keep negativity at bay and help you bust stress.

Ask for help

Self-advocating for your health doesn’t have to be a solitary journey. You can and should ask for help from the people around you. Your friends and family should be willing to lend you a helping hand when you need it. There are support groups for brain injuries you could join. Last but not least is Jumbledbrain – you can receive coaching from a brain injury survivor with first hand experience and take a 6-week that teaches you how to thrive post-injury.

Conclusion

Self-health advocacy puts you in the driver’s seat of your own recovery and general well-being: You can better navigate the healthcare system, save time and money, and learn how to work together with your doctor to improve the quality of care you receive.

Other articles you may like:

Do you have more tips on how other brain injury survivors can self advocate?

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How ego makes accepting support after a brain injury challenging

Michelle #jumbledbrain — Thu, 08 Jul 2021 19:20:22 +0000

There’s so many things about a brain injury which are difficult to deal with, but probably the most fundamental is accepting that you can’t do things as easily as you did before. We often can’t even recognise what we’re struggling with to begin with until we look back at an event with hindsight. I’ve mentioned before in Lack of insight when brain injury strikes how this can affect me in strange ways, and quite frankly, can leave me feeling a little ashamed at my abnormal behaviour. Maybe that’s why I sometimes find it hard to accept that I need help with certain things because it means I have to acknowledge my problems.

Accepting support is so much harder than it sounds.

Actually I thought I’d become much better at accepting help, and I guess I had, but there was one more thing that required me to swallow my ego to deal with. Even as I sit here now, writing this post, I don’t feel comfortable opening up about what I’m about to admit. Not because it’s anything to be ashamed of, but because I have to own up to my disability which I find distressing. Previously in Tinnitus, the loathsome bells of brain injury I’ve told you about some of my hearing problems. Now the eagle-eyed amongst you with have spotted that I wrote that article almost 5 years ago. (Oh my, have I really been prattling on about brain injury for that long? Thank you for continuing to put up with me all this time.) Even though I have been living been this issue for a long time now, I have only just put serious effort into accessing a long term solution. Why? Because I knew I had some hearing loss and I was frightened that I might be told hearing aids would be the only answer. I didn’t want to have to face that because I didn’t want the world to see them and know I have a disability. The irony of that when I’m have complained about living with an invisible disability for so long isn’t lost on me.

I had been mishearing what people were saying and constantly feeling like I needed to either turn the TV up or have subtitles on to make sure I followed the dialogue properly. So finally I had an appointment with a private audiologist who confirmed my fears. I have moderate hearing loss which will be at least contributing, if not the primary cause of my Tinnitus. I have no doubt that my brain injury has exacerbated this and left me in this position. Although the news did not surprise me, I was deflated when he told me I should have double hearing aids. My left is worse (as is my leg, arm and well, everything following my brain injury) but I still warranted assistance for both ears.

I’d been trying to avoid having a device to support my hearing because I didn’t want people to SEE me as a disabled person.

As I’m in my late 30’s it’s not considered usual to have this level of hearing loss. The hearing aids the NHS hand out to patients here in the UK are large and very noticeable. My fear was that they would be uncomfortable and that people would see a “deaf woman” rather than me. That’s why I chose the private route. I know that this isn’t an option that many can consider, but honestly I would have just continued to tell myself that I could deal with it and try to ignore the problem. Fortunately, at a price, they were able to offer me hearing aids which are small and unless you look very hard you would never know were there. I don’t know why, but it still makes me feel less of a person which is stupid because I hold no judgement of the deaf community at all, so why am I any different? I guess the ego has a habit of holding ourselves to a different standard to that of which we have for others. Rationally, I realise that how well a person can hear holds on bearing on everything else about who that person is, thus it’s irrelevant to everyone else. But my ego and I need to get comfortable with our new reality. It’s been less than 2 months since I started using the hearing aids, and I’m slowly getting there. I haven’t told all my friends about them yet, for some crazy reason writing it here first feels like the step I need to do. Once I’ve put it out there to the world I don’t have to talk about it anymore. Either people will read it so everyone has the opportunity to learn about it at the same time, or they’ll notice them and bring it up. This way I don’t have to keep talking about it. That’s something about me that I have some to recognise, it takes me a lot of time to get to the point where I feel able to have open conversations about things which I’m feeling awkward about. Like when my car accident and subsequent brain injury happened: it was many many months before I told people what had happened and what I was going through.

I’m telling you this because I think it’s important to explain to people how it’s not always easy to accept what might appear to them to be a simple solution to the problem. It’s not that we feel the need to carry on like we’re some kind of martyr, it’s that we need to be psychologically and emotionally ready to acknowledge what that means for us. I’m not saying we’re overly egotistically, but human nature is such that we need time to feel ready to welcome the change.

Other articles you may like:

Were there times that you found it hard to accept the support that was available following your brain injury?

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Why you’re wrong if you brand a brain injury survivor as toxic

Michelle #jumbledbrain — Thu, 20 May 2021 16:15:29 +0000

Social media is full of ideas and there are a lot of people who try to remind others to look after themselves. That is an important message as we can’t pour from an empty cup, i.e. if we have used up all our energy and not replenished it we have nothing else to give. I think we all can appreciate this sentiment. But what I get more concerned about is when I see people throw around words which have become the latest trend to use that encourage people to brand others as something rather than try to understand them. The word I’m particularly concerned about is toxic.

How easy it is for the brain injury survivor to be unfairly labelled as toxic.

I know one former friend stopped talking to me because she “needed to surround herself with uplifting people who reflect her kind of energy.” This happened within the first year of my recovery process. If you have been following me for a while you will know that I was also grieving the death of my mum and trying to help my dad cope as he declined with Alzheimer’s. I fully admit that I wasn’t much fun at that point in my life and I probably didn’t offer much support with what she was facing at the time as my plate was already over flowing with trauma. Maybe I talked too much about how I felt my life had fallen apart and burdened her too much with it all. This wasn’t someone I saw a lot of so it’s not like she had to hear it every week, and I guess we just weren’t as close as I thought. Honestly I’m fine with us going on our different paths, that’s just life. But what I don’t relish, is the realisation that what she was actually doing was branding me as a form of toxic.

What is a “toxic” person and why a survivor shouldn’t wear this label.

It appears that there are a few different behaviours which are being called toxic. I want to run through them and explain how a survivor may well behave like this at times but why it’s just ignorant to brand them as toxic.

THE CONVERSATIONAL NARCISSIST – Someone who talks about themselves a lot, rarely asks the other person any questions, appearing that they are more interested in themselves and what is going on their life at that time.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – When you have gone through a major trauma your body and brain go into “fight or flight mode”. You might find that you’re more jumpy than you were before as your system is on constant alert for danger. But also you’re brain is trying to analyse what you have been through, unpicking all the little details in hope that it an find a way it put it right again and keep you safe from it happening again. This is a behaviour I have no doubt that I displayed a lot with my former friend without realising it. I can tell you that this doesn’t mean that I didn’t care about her, just that I thought as we were friends she would be willing to help me through all the thoughts and emotions I was being bombarded with at the time.

THE EMOTIONAL VAMPIRE – Someone who will find a negative angle in most situations. They are often sad and pessimistic which can take the wind out of the other persons sails.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Whilst we are still processing the trauma we have been through our brain will continue to look for signs of “danger” in any given situation. It is looking to avoid any more drama, disappointment or heartache as well as physical danger. This is another behaviour I know I was guilty of with my former friend. She had just become an Arbonne consultant which she was doing whilst continuing with her very successful career in another area. I listened to the sales pitch she gave me about why I should sign up as a consultant which the lady who’d signed my friend up chipping in on too. I was worried about investing in something that was designed to make others rich and explained how I thought this was a pyramid scheme. Actually, it’s a multi-level marketing (MLM) business. The only difference between a MLM and a pyramid scheme is an MLM has an actually product to sell. However, they both rely on each new level recruiting new consultants. The higher levels take a percentage of the sales from every consultant they have recruited, so the higher up you are the more money you make. But those at the bottom of the pile often just invest money buying the products and may never make money. So yes, I did rain on her party and she probably didn’t like to way I did it in front of this other lady. But when you are still in “fight or flight mode” from your brain injury it can only be expected that like a cornered animal you will either look for a way out, or will bare your teeth.

THE FIBBER – Someone who regularly embellishes, exaggerates or just claims things that just aren’t true. This is seen as being wrapped up in their own self importance, attention seeking and dishonest.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Often brain injury survivors can confabulate, which is where the brain can try to fill in the gaps in our memory with things that didn’t happen or aren’t accurate. (You can read more about these in Confabulation is not lying. False memories due to brain injury.) We genuinely believe these confabulations, so whilst our brains are lying to us, we are not being dishonest when we relay them to other people. We think they are real and the truth. Yes this might be a little wearing for others to try to unpick what is accurate, but we don’t mean to cause any harm.

THE CONTROL FREAK – They have lots of rules to follow for different situations, such as the environment you meet in (lighting, background noise etc.) Plus when they disagree with you about something they won’t stop trying to convince you that they are right.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Many of the rules a brain injury survivor is trying to impose on a situation, are actually their coping mechanisms. They may suffer with noise and light sensitivity and these rules help them to manage their fatigue and avoid additional pain. I have been that party pooper who has begged someone to turn the music down which wasn’t even loud. There can be just a particular vibration or pitch that just overloads the injured brain of a survivor. Think about it, if a wheelchair used said they could only meet somewhere with that’s wheelchair accessible you wouldn’t think they were being controlling, just asking you to make choices which means they can safely join in.

If we disagree with you and won’t let it go, that could be us struggling with our slow processing. Sometimes with the damaged pathways it can take us long to take something in and analyse it properly. That might mean we keep pushing back because it doesn’t sound right to us. We might eventually agree with you once the brain has mulled on it for a while, or we might still not agree with you. A brain injury doesn’t mean we’re stupid or that you know better than us. It could be just that on that occasion you’re wrong and we’re trying to do you a favour. We might have lost the filter that would kick in and tell us to accept that you’re never going to agree and so change the subject. Yes that can make the situation uncomfortable, but in most cases in time we can regain this skill so don’t write us off.

THE DRAMA MAGNET – They are always complaining that something is wrong. Offering advice doesn’t help, and the moment one crisis has been resolved, another comes along.

WHY THIS DOESN’T MAKE A BRAIN INJURY SURVIVOR “TOXIC” – Again this comes back to the trauma a brain injury survivor has been through. Many of the things they are conveying are because their life has been turned upside down. Often it has cost them their career as well as their health, and unfortunately a loss of income effects virtually everything. When in this situation it’s difficult to look ahead and plan so you’re stuck in this moment, scared of what is coming next. Just like it’s not helpful to tell someone with a chronic illness to “just try going vegan”, without understanding their condition, unprofessional advice might not be supportive. We’re not always looking for you to resolve it for us. Talking about our worries can help us process the emotions and we might privately find a way later which is in part thanks to you offering a non-judgemental ear.

Please be careful when using these terms to brand someone as a bad person.

You might not be able to cope with the behaviour that a brain injury survivor has started to display as a result of their injury, and of course your mental health is just as important. If that’s the case I agree that you need to back away until you are in a position to deal with them in a healthy way, or that they have recovered a little more. But please don’t throw around terms like toxic as it’s unhelpful to brand people like this. A brain injury is a disability, but with the right support we still have a lot to offer and shouldn’t be discriminated against.

As a brain injury survivor have you ever been branded as toxic? What do you wish people understood about why you do the things that you do?

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Guest post: “Mind full of jumbles” – Brain injury survivor, Robin

Michelle #jumbledbrain — Mon, 08 Mar 2021 15:46:44 +0000

Robin Luftig was a successful author before her brain tumour, and even since it’s removal she has continued to write. In Robin’s upcoming book, “Ten Days to Live: Healing from a Broken Brain, Broken Bones, and a Broken Heart,” she shares the dark days after April 1, 2011 when an ER doctor said, “I’m sorry, Mrs. Luftig, but you have a tumor on your brain about the size of my fist. Do you want a priest? Could I call the hospital Chaplain for you?”

Find Robin’s website and blog at www.robinluftig.com.

If you’ve been following me for any time at all, you’ll know I’ve had a bit of a comeback from a pretty devastating surgery–brain surgery. Hard to believe, but my surgery was in April 2011. That means I’ve been dealing with a mind full of jumbles for almost ten years.

It’s thrilling to speak to groups of women when I have the jumbles. While it does bring its obvious challenges when I forget a name or lose my train of thought, I am always encouraged by the grace that others give me.

Trying to write after brain surgery brings challenges as well. Like most writers, I deal with the distractions of social media and rabbit holes. But add to it the task of trying to stay razor-focused on the task at hand when your mind is doing summersaults.

Jumbles Give Me Reason to Smile

When I write, I enjoy the seclusion of my own office. There, I can best control my jumbles. There, find the structure I need to do what I need to do.

And isn’t that what it’s like for each of us … finding a way to do what we need to do?

Each of us has a struggle … a type of mind jumble. Maybe yours in a past that keeps you from reaching for the future. Your mind is filled with all the reasons you can’t succeed. Or maybe your mind is filled with comparisons. Why you think others are more qualified than yourself.

Stop the Jumbles

Stop what you’re doing and take your Jumbles captive. Focus on what’s at hand. Figure out what is your driving force. Seek the face of Jesus in your task. What does he say about achieving your goals? He has lots to say:

But seek first his kingdom and his righteousness, and all these things will be given to you as well. Matthew 6:33

Take a deep breath and relax. God is bigger than the Jumbles. If there’s a burden in your heart, dealing with a mind full of Jumbles will not stop what God’s burned into your heart.

What say you?

What do you wonder about? Are you happy … or are you doing what you never thought you’d do? Do you see consistencies … or are you all over the place? Drop me a line. I’d love to chat.

Struggling to find good in your life? Check out my award-winning book, God’s Best During Your Worst, or check out any of my other books on my Book page.

Other articles you may like:

How do you deal with the "jumbles"? Do you find people are patient with you?

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TBI and PTSD isn’t limited to just war vets, it can happen to anyone

Michelle #jumbledbrain — Fri, 09 Oct 2020 12:02:22 +0000

There has always been media coverage about how service men and women in the armed forces can sustain visible and invisible injuries which can be life changing. And of course it’s absolutely right that the public are made aware of the sacrifices these people make on the behalves of the citizens of their country. They deserve respect and more importantly, support and understanding when they return home. In fact, PTSD only really started to get recognised as a thing from back in the day that it was referred to as “shell shock” when war vets returned home with changed behaviour following serving in a campaign. So for that I thank them as well, because at least that started us talking about it.

But actually you don’t have to be working in a danger zone to sustain a traumatic brain injury (TBI) or suffer Post traumatic stress disorder (PTSD). Normal civilians just going about their daily business can be casualties to both of these serious and complex conditions, often whilst doing the most mundane activities.

Road traffic accidents and sporting collisions also result in a high number of TBI’s

I’m sure that by now many of you know that I sustained a diffuse axonal brain injury (where lots of connections across a vast area are ripped) in a car accident due to the rotation forces of the impact. You might also know that I don’t remember that day at all, so you could be forgiven for thinking that my lack of memory saved me from developing PTSD. If only that’s how it works….

Being a passenger in a car terrifying

Something in my brain was constantly looking for danger, but with a dramatically reduced processing speed, I was seeing it late. As I wasn’t in control of the car, or sure if the person driving me had seen the hazard, I would panic, making an involuntary yelp. I’m sure this was distracting for the driver and not at all helpful, but I couldn’t help it. But at least this was understandable and a reasonable response.

Then the irrational fears set in

Just days after my release from hospital my mum died in a tragic accident at home. The shock was overwhelming and I found I was struggling to function. I think this, coupled with the car accident which had happened only a few weeks before, triggered my fear of anyone important to me dieing. Everytime my phone rang I began to panic, certain that it was going to be some catastrophic news. My biggest fear was that my partner, James, was going to die. I insisted that every day, if I was still asleep when he was leaving for work he had to wake me up to say goodbye. It was like it was a forgone conclusion that he was going to die in some horrible accident, but I just didn’t know which day it would be. I didn’t want it to be that I didn’t say goodbye when it happened.

This stage of being constantly on edge was exhausting. Any sound that I wasn’t expecting, like a person walking into the room, would make me jump up so violently it was almost painful. All day everyday, I would be shaking with anxiety.

My brain used another unexpected tragedy as proof that this fear was rational

In the next summer my cat went missing for a few days. In previous summers he would wander off for a few days, so initially that didn’t set off the alarms. After 3 or 4 days James said he was going to look in the trees behind our garden just in case he was out there but refusing to come in. Moments later I saw him hurrying back towards the house with a distressed look on his face. “He’s dead!” he said. For a moment I though it must have been my brain overreacting again and that I’d miss heard him. Then he repeated it and I’m sure the colour must have drained from my face. The poor little thing was literally just the other side of our fence. He had no injuries, so he probably had a heart attack. The uncontrollable shakes, which had calmed down only recently, came back with vengeance. My nightmares were coming true, and that was all my brain needed to cement my worries of loved ones suddenly passing away .

I think I must have driven James potty, by always saying how everyday he might die, although he was very patient and understanding with me. As you can imagine, this also lead to me assuming every bit of news I got about anything would be disastrous. If anyone stated saying something and paused, I would jump in, asking “What,what?!” as I needed them to get to the point super fast so I could stop panicking about what awful news they might be about to impart. I can’t remember how long this behaviour went on for or when I learned to stop worrying about things that hadn’t happened, but it was a long time.

I’m telling you this not because I want your sympathy, but because I want people to realise that both TBI and PTSD can happen to anyone. It doesn’t have to even be something that extraordinary which causes it. Neither my car accident, or the passing of my mum and cat are that uncommon, although devastating. These irrational fears are all consuming, and whilst it might appear overly dramatic to the next person, they are very real for the sufferer. So please, if someone appears to worry and panic about things which you deem unnecessary, please show them patience and kindness. You can say “Calm down dear”, until you’re blue in the face, but all you’re going to do it might it worse. Compassion will get you much further.

Other articles you may like:

How has having a brain injury and PTSD affected you?

Do you have tips for coping would you like to share with others?

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Brain injury survivors guide through anxiety : Book review

Michelle #jumbledbrain — Wed, 12 Aug 2020 15:41:19 +0000

It’s always a pleasure to be able to celebrate how far a fellow brain injury survivor has come since their injury. That’s why when writer Tanya Peterson, who is a fellow survivor asked me to review her book, I was delighted to. She has authored both novels and self-help books before, and is credentialed as a National Certified Counselor so I knew her latest offering, “The mindful path through anxiety: An 8-week plan to quiet your mind & gain calm” was going to be full of useful information.

How this book helped me make sense of my experience of anxiety

I started having panic attacks after my car accident about things that I really didn’t need to be panicking about. The craziest one was when there was a mix up with my car insurance and they overcharged me thinking that I had entered some wrong details when I was taking out the policy. (It’s a long story as to why this happened and it’s not interesting or pertinent so I’ll just move on. ) I think at worst it meant I was going to be charged an extra £100, which isn’t a small sum of money, but it also wasn’t go to leave me broke. I’d been stressing about it by myself over several hours, so when my partner James got home I unleashed my feelings of injustice. It was a full on rant about how terrible it was and how I didn’t know know to resolve it. James was calm, and told me to just call them tomorrow and explain, he was confident that they would understand and reverse the charges. In my state of high anxiety, this level headed approach felt like he wasn’t understanding how I was being victimised in my eyes, and I got even more distressed. Suddenly I was in the grips of a full on panic attack, and I couldn’t breathe. I started to get dizzy and laid down, sure that I was going to suffocate and die. Thankfully I did survive this episode, but it was the first time I recognised that I suffered from anxiety.

However, for a long time I went on believing that I wasn’t an anxious person before my accident. My friends and family always described me as sensible and level-headed, but that was because that’s what I allowed them to see. Believing it their narrative, I discounted that fact that I was silently worrying about things all the time. This I thought was just because I was open to all outcomes of my actions and inactions, which meant analysing both the good and bad possibilities.

That was until I read this book……

Tanya doesn’t give you instructions, she explains things in a compassionate way

It was in the section where she details the different forms for anxiety that I realised my silent constant worrying was the first form of my anxiousness. What that meant was that I finally accepted that anxiety has been a part of my whole life, not just since my brain injury. However my accident had exacerbated it. Anxiety was always there, but it didn’t rule my life, I had coping methods although I hadn’t recognised that was what was happening. This light bulb moment was key for me because it proved what Tanya says about mindfulness is true:

“Mindfulness is within you. It’s a state of being, a mind-set, that helps you flow through life unencumbered by anxiety. Mindfulness involves skills that you develop and hone, such as observation, acceptance, awareness, and openness to what is. When you have these skills, you won’t be stuck in fear and worry, hypervigilant for problems and things that might go wrong.”

What I also enjoy about this book, is even in the paperback version there is a helpful use of colour. The headings are a soft purple and pages with important details are green. This all contrasts with the black print, and is helpful for those of us who struggle with attention and concentration. It stops my eyes from getting bored of just staring at text and highlights go places for a moment of reflection.

When mindfulness isn’t just meditation

Lots of us have heard of Mindfulness Meditation and it’s a very useful practice. But not everyone feels it’s right for them. If your one of those people, please don’t discount this book as not for you. Tanya explains how this way of being doesn’t mean you have to sit in silence. It’s a though process that goes on all the time, no matter what you are doing. I know that sounds like a lot of work, but honesty it isn’t. And Tanya has broken this down into 8 weeks worth of work to help you build this into the fabric of your life. It just simple tasks just help you take on board each new chapter and weave it into your way of being.

Even if you’re a sceptic of mindfulness, I urge you to give this book a try. I’m not saying that because I’ve been paid to, in fact all I got was a paper copy of the book so I could review it. So I’ve got nothing to gain by me writing this, but you have.

Other articles you may like:

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The importance of focus when living with a brain injury

Michelle #jumbledbrain — Mon, 17 Dec 2018 14:04:16 +0000

I know, you don’t have to tell me… It’s a real challenge for most people to resist distractions, let alone when a brain injury has truncated your concentration span. But it’s still worth reminding ourselves that we need to continuously work on developing good habits, because if we focus on the wrong things, it can have a detrimental impact of our health.

The "professional" troll.

As human beings, we will naturally gravitate to some people and not to others. We are individuals and I personally value the different ways people can have an affect on our personal journeys. Often we learn something through our experiences with people without them having that intention, or us particularly realising it.

Recently I had an encounter with a “Certified Clinical Trauma Professional” who has a PhD and is a Business coach AND a TBI coach at the same time. (Not sure why you would choose to coach businesses and brain injury survivors. Unless you believe brain injury survivors can run their own business of course…. but I’m not sure this person’s mindset allows for that possibility as I will explain.) However, I have no interest in defaming this individual. As I have already said, individuals are drawn to different people, so I’m sure she has added value to others lives and I hope she continues to do so. So for the purposes of this I will refer to her as Ester, which is not her real name.

"Thanks for branding me."

I wrote before in You’re an expert on brain injury? Well I’m the expert on mine. how some people who have “qualifications” just don’t get it. Reading about it in a text book is not the same as walking in a brain injury survivors shoes. But the bit that I found the most upsetting, was that this person had ASSUMED that everything I’m doing must be wrong because it don’t have a PhD. And without looking at any actual EVIDENCE she resorted to threats, that unless I stop, she’ll make me.

Well, sadly, I think that small minded attitude is the sort of thing many brain injury survivors have come up against. But don’t worry, I am not going to let Ester win. She’s no longer in my group, and she can carry on doing what’s she’s doing, and I will continue to serve you all in exactly the same way I always have. With authentic honesty.

Ester, you're extremely detrimental to my health - FACT.

This encounter went on for days, messages back and forth. I was trying to offer her the opportunity to really see what I do, but she was just getting more angry and aggressive. By the time I reminded myself “You can lead a horse to water, but you can’t make it drink,” the stress got to me. This behaviour was nothing short of bullying. For several days I was writhing around in pain where my guts were doing their best to abandon ship. I had to take some time out from everything to give my brain and body the chance to recover from her onslaught.

I suspect that the real reason Ester started this is because she spent years and thousands of dollars on her studies, only to find that someone like me is making a bigger impact than her. Well Ester, don’t be jealous of me. I would rather swap my brain injury for the time, effort and money you have had to invest. But I didn’t have a choice like you. I’m putting understanding to use, just like you are. Unfortunately there are so many people affected by brain injury everyday, that there still isn’t enough people trying to support them. Let’s not tear each other down, let’s just serve our people.

That’s my cautionary tale about the importance of focus when living with a brain injury. I found myself focusing on the wrong thing and I paid the price. We all have negative experiences happen in our lives, just learn from them, don’t focus on them.

Other articles you may like:

Do you find others negative behaviour takes up too much of your energy? What do you find it more helpful to focus on?

The post The importance of focus when living with a brain injury appeared first on Jumbledbrain.

Guest post: Debra Meyerson on life after a stroke induced brain injury

Michelle #jumbledbrain — Tue, 08 May 2018 13:12:17 +0000

Todays guest post is by stroke survivor Debra Meyerson. She could have let the brain injury destroy her. But she chose to fight and help other stroke survivors. She has a blog, Identity Theft: Rediscovering ourselves after stroke where she features stories from other survivors as well as details her own journey. Her ambition is to publish a book based on both hers and their experiences.

On September 4, 2010, I was enjoying Labor Day Weekend in Lake Tahoe. On September 5th I was speechless and paralyzed on my right side following a severe left brain stroke.

Before my stroke I was a tenured professor in the graduate schools of Education and Business at Stanford University. I taught, researched, and wrote about identity, gender, diversity, and social change. I also skied, ran and biked. I knew who I was.

My stroke took almost all of that away from me. I felt like a different person. While I won my struggle to survive, much of my identity—as a Stanford professor, a speaker and writer, an athlete, a mother and a wife—was gone. My mind was working, but I was trapped inside a broken body unable to do what I used to do. And maybe even worse, I couldn’t tell anyone what I was experiencing.

Initially, given my disabilities, I completely lost my independence. I lost control of my life. I needed help with everything. That was SO frustrating. Fortunately, over the past 7 years, I’ve regained enough to be independent for all the basics. But I still lost my career as I knew it. I still can’t speak easily in groups. I can’t do the sports I used to love. I know I won’t regain all of the capabilities I lost. I get frustrated and angry a lot. But I still work hard to recover as much as I can.

After my stroke, I found books that helped me understand the physical recovery process, but much less to help me understand my equally difficult emotional journey. So I am writing Identity Theft: Rediscovering Ourselves After Stroke with the help of my co-author, Sally Collins. Because of aphasia, I am not able to write the book myself. It will certainly include my personal story of rediscovery, but will also draw on the experience of 30 other stroke survivors I’ve talked to, as well as stories from families and caregivers of stroke survivors.

Writing the book is helping me deal with my loss. Not to get over it. I’ll never get over what I lost. But to get past it. I’m trying to rebuild my life around what I can do today. Looking forward, not back. Trying to build a new and different life, but hopefully one just as meaningful as the one I had before my stroke.

I’m very much still on my journey. Recovery from a severe stroke takes years, decades or a lifetime. Often complete physical recovery never happens. I don’t think it will for me. Does that mean I can’t recover? I don’t think so. I’ve come to think that “stroke recovery” isn’t just about regaining capabilities. It’s about successfully building a full and meaningful life, whatever ongoing disabilities one may have.

Am I the same person I was before my stroke? No. But is there a lot about me – about my identity – that remains. I think so. I’m no longer a tenured professor, which I thought was central to my identity. But writing Identity Theft has helped me find new ways to create and share knowledge, which was always at the core of what I love doing. I hope to have my book out next year (spring, 2019) and I hope it will help other survivors on their journeys to rebuild lives of joy and meaning.

Other articles you may like:

Has your stroke or brain injury stolen your identity? How are you rebuilding your life?

The post Guest post: Debra Meyerson on life after a stroke induced brain injury appeared first on Jumbledbrain.

Where does the time go? A day flies by after brain injury

Michelle #jumbledbrain — Thu, 01 Jun 2017 11:34:04 +0000

Most days I have something I need to do that day; laundry, mowing the lawn, cleaning, writing my blog. And yet whenever anyone asks me about my day, I can’t ever say I did much. Not because I sat around all day, just because everything must take me so long. Either that or I’m living in some kind of brain injury created time warp.

Has my concept of time changed?

Whether I’m getting distracted more than I realise, or I’m just really slow, I’m not sure. Recently I have been getting up earlier to make a start on writing, and yet I don’t seem to finish any earlier. At least I only have me to answer to, what if I was being paid to meet deadlines? It all just adds to my anxiety about how I will ever rise to life’s challenges. This is something I talked more about in Terrified I’ll fail after brain injury.

I’m not sure if this is happening just because I don’t have the same time constraints you do when you’re at work (or bringing up a family). Perhaps just because I have time to pause and think, I am. Or is it because my processing speed is holding me back? Either way, it feels like life is passing me by some days.

Life is short enough as it is.

The modern world is all about doing everything at speed. I noticed how that makes people behave differently when I moved from South West England, to Greater London. It’s not that people are better or worse, just that here they are cramming in so much, they’re more stressed. So I don’t want to be like that either.

But we get one chance at this life. I know many of us might feel we have had another chance as we survived a brain injury. But perhaps that’s even more reason to cherish what time we have. Don’t worry, I’m not going to be all morbid on you. Some people who lead busy lives would love to be in my position. Or at least they think that until they get there. So many people find retirement boring.

Perhaps it’s fatigue slowing me down.

Before you say it, I know we have to pace ourselves. And I’ve said before in Exhausted energy levels. Brain injury can leave you high & dry, how I can be guilty of pushing myself too hard. So maybe this is just my new speed? I’m not saying I was ever the hare, but now the tortoise is lapping me.

As I’m writing this, I’m conscious of how often I sit “contemplating” what I’m writing. I might be kind to myself and say I’m taking the time to think about what I’m writing. But actually that’s only a small part of it. I’m also considering how my eyes are so tired, I can feel the dark circles under them! How my arms feel so heavy I’m thankful that this typing position means I can keep them low. How it feels like there is cotton wool stuffed inside my forehead. So is this where my time goes? Am I just constantly scanning myself and evaluating how this stupid brain injury has left me? That sounds full of self pity and being self centred, neither of which are admirable traits.

I keep taking on more.

Most of you will know that as well as maintaining this blog, I have also started a Pinterest group board. My aim is to make valuable blogs about brain injury more accessible. So I have been trying to track down other bloggers and invite them to pin their work there as well. Plus I keep looking for other interesting pieces for survivors. It doesn’t sound much, but it all takes time. Please do have a look at it Brain injury group board, there are loads of great articles and info-graphs on there. Please repin any blogs to your own boards, as it will help that person rank higher and their work be shown more often on Pinterest. Hopefully then it’s more likely others who would benefit from reading it will come across it. If you haven’t done so already please follow my group board.

The solution?

So what am I going to do about it? Probably nothing if I’m honest. But I’m going to try to follow these tips I found: wikiHow to Stop Wasting Time. I say try because I’m being realistic with myself. I don’t think I’m going to just suddenly become this model time efficient person. But I could make some improvements, and regain some me time. I want to enjoy life, not just sleep walk through it.

Since your brain injury do you find time passes you by? Have you got any hacks which work for you?

The post Where does the time go? A day flies by after brain injury appeared first on Jumbledbrain.

Organise yourself tool. Idea for busy brain injury survivors.

Michelle #jumbledbrain — Wed, 29 Mar 2017 14:13:51 +0000

Those of us who struggle with memory issues can find everyday life difficult to organise. I’ve written before how things that I would have easily accomplished previously, have become a challenge now. Whether it’s because I confuse dates, or do things in the wrong order it always ends with added stress I don’t need. Stress when you have a brain injury can end in disaster.

Help was offered.

Many of you will know I post my articles on Twitter, Facebook and other social media platforms. One day I got a direct message from Serg, the Founder of an app called Q-card. He explained he had been following me for a while as he too is a brain injury survivor and enjoyed my articles and how I attempt to help others. He had been in computer programming and web development since University. So he put his skills to use in developing an app to help people stay organised. He had tried diaries and appointment devices before, but found they didn’t help him the way he needed. So by having a better understanding of what it is like to suddenly be cognitively impaired he developed Q-card.

Serg offered me free access to it in hope it might support my recovery. I have no doubt that as I have vowed to share anything I find that helps me with my readers, he was hoping I would write about Q-card. But he never specifically asked me to, and I haven’t been paid.

How Q-card helps me organise my medication.

I take a number of pills. Most of which I organise myself into a organised pill box and just take them first thing in the morning. I like this because I can quickly see if I have taken today’s. As it holds a month, I know when to order my repeat prescription. However I need to take multiple iron tablets through the day as well. This is harder to organise because they shouldn’t be taken with other tablets or tea. Iron is difficult to absorb, and it if attaches itself to other drugs, it can stop them from being absorbed properly too. Also as tea is a diuretic it should be not consumed close to when you are having your iron tablets as it can decrease its absorption rate further.

I have started to use Q-card to remind me about my iron tablets. I use the “Quick reminder” tab to schedule a time later in the day reminding me to take them. This can be set to alert me every day so I don’t have to keep wondering if I have remembered to take them.

Q-card handles my appointments.

In Frustratingly dreadful with dates, thanks brain injury I explained how I can turn up to appointments days early, or miss them altogether. It is because just putting it in my diary isn’t good enough. I get confused about today’s date, so then trying to think ahead is tough. But now when I set an appointment in the “Appointments” tab I can set a reminder a few days before too. That helps me plan ahead. This is particularly helpful seeing as I have to travel 3 hours for my dads appointments and sometimes stay over. So it gives my time to consider things like, has the car got enough petrol or is there something I need to bring for him? When it comes to my Doctors appointments,it can be as simple as a reminder when I need to leave the house to avoid being late.

Everyday tasks can have simple steps recorded.

People who haven’t suffered a brain injury don’t always understand why we find “simple” activities a struggle. Today is the first time a managed to add salt to the dishwasher unsupervised! Previously I had tried to put it in where the rinse aid should go. James spent ages trying to undo my mess.

But this time I created a “Guided Task” on Q-card to remind me what I was doing. I included details like where in the salt intake is in the dishwasher. Knowing how long it takes to complete a cycle, so I scheduled it for when it would finish the load it had. I would able to pack those items away and start with an empty machine. You do have to give every step a expected time taken, the minimum being 5 mins. It doesn’t take me 5 mins to unscrew the intake or the other steps. But it’s not a big deal that it thinks in total it takes me 20 mins. I have added it to my favourites so it’s I can find it again when I next need it.

Tasks can be shared with caregivers.

As James works so hard and is as busy as Mother Nature, I don’t use this with him. But I understand you can share your schedules with another person who uses Q-card. As you can either ask it to repeat the reminder/step of the task/appointment or confirm you have completed it. They can rest easy knowing you have completed those activities. I imagine that helps reduce the burden on them. They don’t have to keep trying to think of what they need to remind you of. Or you can set tasks and reminders for each other. Now that’s what I call delegation!

How to get it.

Currently it is available for iPhone users, but an Android version is on the way. It is priced at $5.99 (US dollars) as a one off lifetime purchase. Yes that means you can use it forever without it costing you another dime. If you go to their website www.qcard.ca you can get a 14 day free trial which for those who would have to pay can try it out first. Some of you lucky people in America and Canada can get it free through your healthcare provider:

Serg tells me “Insurance companies (automobile and workers compensation) cover the cost of a lifetime version. Some health plans also cover the cost under rehabilitative or assistive devices. Very true in Canada, but also applies in the USA… currently things are a little uncertain in the US when it comes to Obamacare – waiting to see what happens. But usually, as long as it is recommended by an Occupational Therapist or Healthcare Professional, it usually gets covered by insurance.”

If you want more information visit www.qcard.ca

Disclosure of Material Connection: I received the product mentioned above for free in the hope that I would mention it on my blog. Regardless, I only recommend products or services I use personally and believe will be good for my readers. I am disclosing this in accordance with the Federal Trade Commission’s 16 CFR, Part 255: “Guides Concerning the Use of Endorsements and Testimonials in Advertising.”

Are there tools that help to organise you? Would you be happy to pay $5.99 for a service like this?

The post Organise yourself tool. Idea for busy brain injury survivors. appeared first on Jumbledbrain.