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?

The post Guest post: Advocating for Your Health Post Brain Injury: A Mini-Guide appeared first on Jumbledbrain.

7 ways to support brain injury survivors with chronic migraines

Michelle #jumbledbrain — Mon, 20 Feb 2023 18:55:54 +0000

Today we have a guest post which is written for those who are looking for ideas on how they can show their support to someone who is living with a brain injury.

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

Millions of people live with chronic health conditions that affect their physical and mental well-being, including migraines after a traumatic brain injury. You may wonder what you can do to show your support and ease the daily burden of your loved one who faces an ongoing health
challenge. I wanted to outline some suggestions for ways you can help.

Show Your Compassion

Chronic migraines caused by a brain injury come with numerous daily challenges and may lead to a broad range of overwhelming emotions. Living with a persistent health condition can cause someone to feel anxious, depressed, and insecure. Showing compassion means
listening attentively as your loved one voices fears and frustrations and describes the experience of living with an illness. The Mighty notes that offering encouragement without minimizing the other persons experience shows you understand.

Learn About the Condition

Learning as much as possible about your loved one’s affliction with migraines can go a long way toward offering meaningful support. My Health Finder suggested reading about the illness or attending and helping prepare for medical appointments will give you insight into the challenges your loved one faces and reveal how you can be most helpful.

Offer to Prepare Meals

Nutrition is critical to managing a chronic illness. However, as Nutritionist Resources notes, many sick people sacrifice healthy meals because they lack the energy necessary to prepare them. You can help by handling the weekly grocery shopping or preparing healthy recipes that your loved one can freeze or heat up at mealtime.

Care for Pets

Pets provide many benefits, including stress relief, companionship, affection, and a sense of purpose. The University of York details how much relationships with animals can support our mental health in this enlightening article. However, it can be challenging to care for a pet when chronic illness leads to low energy. You can help by offering to feed, walk, bathe, or play with your loved one’s pet. In addition to ensuring the pet’s well-being, you will enjoy the benefits of the human-animal bond.

Schedule a Stress-Free Outing

Life for someone with chronic migraines caused by traumatic brain injury can be unpredictable, and your loved one may face challenges scheduling social engagements or maintaining connections with others due to low energy levels. Consider planning a fun activity during the day when your loved one’s energy reserves are at their peak. For example, you can provide weekly transportation to and from a luxurious brunch or afternoon matinee. These activities do not require much effort but, as Psychology Today points out, they can significantly reduce feelings of loneliness for someone with health challenges. Nevertheless, your loved one may still feel the need to decline these outings sometimes if they are having a particularly difficult day. This is to be expected and is by no means meant as a slight against you. Don’t let this put you off continuing to include them in activities. Just check that these are the sorts of things they want to do or if they are other idea they would like to plan in from time to time.

Help With Household Tasks

Chronic pain and discomfort can make it challenging to concentrate or manage household maintenance. Still, you can alleviate your loved one’s workload by creating efficient systems that require minimal energy. For example, you can set up automated payments for all billing
accounts to avoid late fees and automatic refills for vital prescription medications. You can also help create a weekly schedule of tasks considering the sick person’s energy levels and routine.

Help Design a Home Office

You can offer to help design a comfortable and stress-free home office that incorporates ergonomic furniture, promoting healthy body movements and physical comfort. For example, a chair with adequate lumbar support and an adjustable height eliminates muscle strain and ensures that your loved one’s arms do not strain to reach the desktop. The ultimate goal is to eliminate poor posture, which, as All Health Matters points out, can negatively impact physical health and reduce overall stamina.

You should also ensure sufficient light to eliminate eye strain throughout the home. Ideally, natural light coming in from windows in areas including the home office can benefit from the mood-inducing benefits of well-lit spaces. Reduce fluorescent lighting as this can aggravate light sensitivity and induce further migraines. Also incorporate houseplants, which can help purify the air, and be sure to have a home that is free of clutter and is clean – Redfin reminds us that this is all a big assist when it comes to removing stress inducers.

After receiving a brain injury and chronic migraine diagnosis, your loved one may feel frightened and confused.
Unfortunately, you cannot change the circumstances, but there are countless ways to show
support and offer assistance.

Other articles you may like:

Brain injury survivors, what things would you like people to do to demonstrate their support?

The post 7 ways to support brain injury survivors with chronic migraines appeared first on Jumbledbrain.

Terms that might accidently offend those with a brain injury

Michelle #jumbledbrain — Mon, 11 Jul 2022 10:47:03 +0000

Living in the 21st century means we are all slowly becoming more aware of we are all different and that should be celebrated. Along with that, we are more regularly being reminded not to just assume things about others and to be aware that we can accidently offend people if we do. For example, I live with my partner. That term says nothing about the gender of the person I share a home with, therefore if that was the only information you had you wouldn’t be able to tell what my sexuality is. Many of you who have been reading my blogs for a while will know that his name is James and so with that you can deduce that I’m heterosexual, which I am, or you could still think I could be bisexual.

But there are things that we use to describe our experience of brain injury and other chronic illnesses which resonate with us, but they might not have such a positive effect on the next person. I’m not suggesting we start tip toeing around each other and create a atmosphere where everyone becomes scared to say anything for fear of upsetting someone else. Rather I want to help us recognise that there may be times when one of these terms, expressed with good intensions, might get a response that was different than hoped for. If we understand why someone’s feelings are contrary to our own we can still display our compassion by going back and offering and alternative to acknowledge their feelings.

After meeting some people who said a few terms made them uncomfortable that I personally had never realised before could problematic, I asked the brain injury and chronic illness community to fill me in on others that can feel jarring to them. In addition, I asked for alternative words that we can use too.

Terms which can be annoying and other options you can use.

SURVIVOR – Those of us who have lived through an event which was life threatening may choose to refer to ourselves as a survivor (I certainly do.) However, dealing with the struggles of a brain injury do not stop there. Adjusting to how that has changed their life and left them with continuing challenges can be totally overwhelming. A person can feel like that are drowning and barely surviving. Therefore to call them a survivor can feel like their current struggles are being just brushed under the carpet.

Alternative – “[enter persons name] lives with a brain injury.” This phrase doesn’t add any positive assumptions to it and is more “matter of fact”. It allows space for the person to decide if they want express any emotions abut their personal circumstance.

SPECIAL NEEDS – Whilst this is a term that is in most places considered politically correct, it can feel awkward for some. Often the word “special” comes with assumptions such as VIP which in this circumstance it doesn’t mean. For some people it can feel like that are saying they want to be treated like they are a celebrity or something, when in fact they want to be treated like everyone else just with certain alterations which help them which their challenges.

Alternative – Requires high support or medically challenged. This makes it clear that it is highlighting it’s a medical issue to be aware of, rather than someone who wants to be treated like a Princess.

DISABLED – The mere fact that the prefix “dis” is used to mean opposite of, not, remove or reverse can immediately feel negative. It can leave people feeling like they are less than an able-bodied person. There is still stigma attached to it which society is only just started the try to remove. I have said before how I personally struggle with identifying as disabled, although I am starting to embrace it a little more now.

Alternative – Differently abled or challenged. These terms tend to promote more open mindedness about that can be rather than immediately just conjuring up images for a person in a wheelchair. Plus it acknowledges that the person CAN still do the task, just that they might do it in a different way than the next person.

SUPERHERO/HERO – These labels are offered with affection, but some people don’t connect with them. They can feel cartoonish in some cases, making us think of characters who have superhuman powers and strength. that can leave a sense that the ongoing struggles of the person is being diminished.

Alternative – “[enter persons] lives with a brain injury. You can go on to compliment them for how hard they have worked at their recovery if you want, but still leave space to recognise their struggles are not over and sometimes they don’t feel strong.

PATIENT – This term is only correct when the person is a client of a medical practise. Some people are fine using it outside of this setting, but for others in can be too clinical and dehumanizing.

Alternative – By phrasing it with the persons name first; “[enter name] lives with a brain injury, you are giving them their identity as a person first.

STROKE OR BRAIN INJURY VICTIM – Unfortunately, particularly for those who have had a stroke, this phrase has historically been used quite a lot. People don’t want to be victimised so this term can be offensive.

Alternative – “[enter persons name] had a stroke.

THRIVER – Another term which is supposed to compliment the person for how they appear to be coping well with their condition. But it’s another one that can overlook the strain that the person is going through.

Alternative – “[enter persons name] lives with a brain injury.” I know I’m repeating the same thing over again, but it’s important not to assume anything about what day-to-day life feels like for a person.

SUFFERER – This immediately sounds negative and implies that the person wants your sympathy. Empathy is good, but we don’t need sympathy. The latter passes judgement and only offers understanding from your perspective. It makes it sound like you’re suggesting the persons position is awful.

Alternative – “[enter name] lives with a brain injury… I think you’re getting the idea now.

NEW NORMAL – Many use this to describe their status that they have had to adjust to. However, not everyone likes it because of the word “normal”. It implies that everything is fine and things will be going smoothly from now on.

Alternative – Day-to-day status means what a person might experience on a regular basis but it doesn’t say anything about how usual or unusual this might be.

DISORDER – Whilst this word is used in medical terms such as PTSD, it can make the person feels like they have done something wrong. One person described it to me as; “Disorder for me implies that I’m doing things deliberately out of the norm. I am just doing things the best that I can given my condition and learned reactions from similar situations.”

Alternative – To reduce the sense that the the person is wilfully misbehaving, as the word “disorder” does, the word “response” comes across as less emotionally charged and purely factual.

RESILIENT – This word is used to reflect the fact that the person has to put in extra effort each day to be able to put up with the challenges their condition presents them. But it’s not a battle they want to be in, and what is their alternative? Therefore not everyone wants this characterisation because they really don’t feel like they are doing much more that surviving.

Alternative – Recognise that facing their challenges isn’t a choice for them and accept that they are just doing what they have to do to get by.

BRAVE – In the blog post, I’m not strong or brave, I didn’t choose this brain injury , I outlined why I don’t like being called brave. Again this word can make it sound like there is a choice when you are living with a brain injury. To be brave often means choosing to tackle something that the next person would be afraid to. However, we are just playing the hand we were dealt.

Alternative – Just empathise by letting them explain what their experience is like, if they want to.

WHEELCHAIR BOUND – This is an ableist term which implies the person should be pitied. As one person put it to me, “this wheelchair is what gives me my freedom”, which is a totally different perspective.

Alternative – Wheelchair user.

JOURNEY – Many of us, myself included, have used this word when referring to our lives since our brain injury in our pursuit of recovery. But for those who have a degenerative or terminal condition it can be distressing as it suggesting you are aiming for a destination, and for them that can only be death.

Alternative – It can be more sensitive to refer to it as navigating their condition.

“BUT LOOK HOW FAR YOU HAVE COME” – Whilst this is uttered as a pat on the back it can make the person feel like they should be “content” with their current position. This can sound like you are saying they shouldn’t complain and just be thankful of the progress they have made.

Alternative – It fine to highlight the persons progress, but talk to them about how they feel about it and what they see as coming next for them. They might feel that they can expect things to continue to improve with the right support, or they might not. Don’t assume anything.

I hope this helps us better understand each others points of view. Again I want to be clear that people don’t need to be so concerned that they dodge talking to someone who has and brain injury to avoid saying the wrong thing. If they notice something didn’t land right with them just ask them why and hopefully these alternatives will help you say the same thing in a way that feels more appropriate to them.

Other articles you may like:

Are there are terms that you would prefer people didn't use around you and others with a brain injury?

The post Terms that might accidently offend those with a brain injury appeared first on Jumbledbrain.

How the pandemic affected brain injury survivors

Michelle #jumbledbrain — Mon, 10 Jan 2022 17:26:12 +0000

This article was oringally posted on the Brain Injury Touch points website, and there you can see a video of me reading it out >> watch video

The coronavirus pandemic has affected us all and, in many cases, the changes to our lifestyles have taken a while to get used to. Yes, we were pretty good at being “stay at home heroes” when we were first asked to (especially since it was all pretty scary and it was the best way to stay safe) but as the lockdown in the UK is easing, we are having to adjust all over again. Being able to get out and escape the cabin fever is a welcome change, but with fears of a second outbreak, it’s still an apprehensive atmosphere.

While others complained about isolation, brain injury survivors faced more severe consequences of lockdown

For the brain injury survivor community this has been a particularly difficult period, and still is. On the one hand, where everyone else was having to acclimatise to the isolation it caused, we were already familiar with that. Unfortunately, invariably our social network seems to evaporate once we are home and out of the “danger zone”. Once people think we must be OK having been discharged from the hospital, they start checking in on us less and less, drifting away as they refocus on their own busy lives. However, more importantly, what the lockdown meant was vital rehabilitation services had to be paused. This included everything from appointments for physio therapy to support at home which was considered “non-essential”. Whilst we may be able to survive without the support workers assisting with tasks that might be considered simple to the rest of the world, it put many in a desperate situation where the confusion from cognitive difficulties ruled their days.

One of the most difficult changes lockdown caused, was the pause in support groups being able to meet up. These groups represent a lifeline for many brain injury survivors because they finally can feel understood and less alone. Whilst many groups have attempted to continue with virtual meetings, this is less than ideal. Video conference calls can bring on fatigue, something most survivors battle with already. I was brought up being told “Stop staring at the TV, you’ll end up with square eyes,” and whilst that isn’t exactly factual, the sentiment is still true. Too much screen time is bad for us for a number of reasons. Educational psychologist, Christine Fonseca, MS wrote in an article for Psychology Today: “While researchers are only just learning of the true impact of screen time on cognitive and emotional processes, the early findings are not great. As little as two hours a day of screen time has been demonstrated to negatively impact the brain, with reductions in grey matter and changes to white matter. Most researchers acknowledge the dopaminergic impact of screen time—screen time use leads to the release of dopamine similar to the way drugs like cocaine impact the brain. This has led to alarm regarding the long-term impact of increased screen time use (including time on phones, tablets, video games, and TV). These changes in the brain can result in reduced attention, memory difficulties and changes in our ability to think, read, and write at a deep level.” Whilst it’s commendable that facilitators are putting in the effort to try to continue holding these meetings so their members don’t feel forgotten about, it isn’t an equal substitution

Is social anxiety going to increase?

I for one have gladly been wearing a mask when I go out, but am surprised by how few others seem to. Nevertheless, I need to remember to hold my judgement because a number of these people may have legitimate reasons that prevent them from being able to. One brain injury survivor pointed out to me the other day that the mask can cause dizziness for them when the air gets too hot. There are many different reasons why someone might not be in a position to wear a mask, but I do hope those who are able to, do. Having gone through and just about conquered the social anxiety that my brain injury caused, this pandemic is triggering it again a bit. Whilst before I just felt awkward and out of place because I constantly told myself my behaviour made me look weird, I’m now hypervigilant about the spread of this virus. And yes, you might not have any symptoms, but that doesn’t mean you’re not a carrier for it. I don’t think I could live with the guilt of passing on this awful virus to someone for it to then take their life. No, instead I’m still self-isolating as much as possible so I don’t have to worry about it. However, I do wonder if I will ever be fully comfortable with being sociable again.

The ups and down of working of home that shielding from COVID-19 has highlighted.

The thing I find myself thinking about the most since this pandemic is the question “what will the future look like?” For the last few years, we have been watching our high streets change as society’s habits have changed. But this situation has accelerated that and forced many businesses to adapt. Most people are working from home now, but if that alters the workplace for the long-term, surely that will make it harder for people to build relationships? When I left my job because of my brain injury it highlighted how many of my friends were work colleagues and how much of our interactions where based on what we had in common: work. Plus, even when there were times that I wasn’t relishing my work, the people made it worthwhile and so I enjoyed going in each day. As someone who works from home permanently, I do miss my work relationships and I have struggled to make new friends as I’m not meeting new people. Alright, I meet people in passing, but the work environment throws people together, forcing them to see each other regularly and learn more about one another. This has always been a strong motivator for people who have been out of work for health reasons to return to work. The independence, status and purpose it offers are still important and remain true however, which is good. Maybe for some who want to make a return to work, the new flexibility this creates will suit them better.

As with every situation in life there are downsides as well as opportunities. Whilst none of us would wish for this pandemic to have happened or so many lives to have been lost, I still hope that it will enable us to learn and build a better future for everyone.

Other articles you may like:

How has the pandemic affected your life as you cope with a brain injury?

The post How the pandemic affected brain injury survivors appeared first on Jumbledbrain.

Why following instructions with a brain injury can be challenging

Michelle #jumbledbrain — Mon, 15 Nov 2021 02:27:26 +0000

Having the discipline to follow instructions properly in order to obtain the expected result is a skill we learn as children. We get plenty of practise of it at school where we pick up on the rules and what is expected of us, plus how to apply ourselves to be able to succeed academically. I was a very well behaved pupil who was usually a top student in my classes, therefore it would be fair to say that I had mastered the ability to follow instructions. However, since my brain injury it’s a different story.

Since running a website and a fairly consistent presence on social media I have looked for ways to reduce my workload whilst continuing to make my work easy to find. You might be surprised to know that other than posting the odd goofy photo of nights out with my friends to Facebook, I really didn’t use social media before starting my blog. Honestly, I didn’t even understand the point of Twitter, so it was a steep learning curve. Anyway, these days I schedule a lot of my posts well ahead of time so my followers still get the content no matter what I’m up to that day. Especially when you’re battling a brain injury which can throw its toys out of the pram at any moment this is a very helpful way of doing it. For Twitter I use a couple of spreadsheets which have hundreds of articles I’ve come across post one automatically every 3-4 hours. These were templates that I found online somewhere and fortunately was able to implement. However, recently they stopped working and I couldn’t work out why. Even the people who posted the templates originally seemed to have taken down the pages with them on, so it might have been a change in the way Twitter was working. (I know this isn’t very interesting but bear with me, I’m getting there.)

I found a clever chap who said he could write a Twitter bot for me that could run my spreadsheets for me. (Yes bots are allowed on Twitter for the purpose of scheduling posts, it’s direct messages that they frown on more but even there they are beginning to relax a bit.) His fee for this service was very reasonable so I asked him to go ahead..

My first mistake.

I didn’t ask him anything about how this process would be set up and just assumed that I needed to give him a few access codes and he could do everything else. That was pretty naïve of me as he needed me to complete actions. I’m not a coder, and whilst I am pretty au fait with computers and the common terms I’m not confident when it’s a screen I haven’t used before. He gave me instructions which he had put succinctly so each step was just a sentence. They were well thought out and even though English wasn’t his native language they were clear.

Having to look for each item meant I kept getting lost.

Clicking away in different menus to find what I was looking for was testing my limited attention span. My brain injury massively truncated my ability to stayed focused but I have worked have to rebuild it. However this was testing me in a much more challenging way. Even when I found what I was looking for I wouldn’t be sure why I needed it and have to go read everything again. It’s not that the steps were difficult, it’s retaining the information each time I went to do something that I was struggling with. Essentially I would miss steps out and be confused why it wasn’t working. As we were is very different time zones it wasn’t easy communicating via the message service on the platform I had found him on. This job which should have been very easy for him took a couple of days to sort out. He wasn’t working non-stop on it, just when we were able to message each other, but I’m sure he was getting frustrated with me. He was very polite but I could sense how irritated he was becoming. But he stuck with me and thankfully the Twitter bot works.

Please work with a brain injury survivor one step at a time.

When a person has put the instructions is the simplest and clearest format that they can it’s difficult for them to understand why you’re not able to follow them correctly or how else they can explain it. For me I think I would have done better if he had given me one step at a time. Not telling me the next one until I had completed the last would have forced me to focus on that action. His numbered list of instructions I’m sure works perfectly well for most people, and had I been using a more familiar format I think it would have been fine for me too. But on this occasion I made it look like a bus driver being asked to launch a space rocket. I didn’t confess to him that I have this problem due to a brain injury until right at the end. If I’d explained it at the start it might have saved us both time and stress so the moral of this story is communication again. This isn’t the first time I’ve reframed from telling someone about my disability and therefore they haven’t had the opportunity to adjust how they interact with me to accommodate my deficiencies. I still feel weird about telling complete strangers about it but it’s something I must try to change the avoid situations like this.

Other articles you may like:

Since your brain injury do you find it harder to follow instructions? Are there any tips help you?

The post Why following instructions with a brain injury can be challenging appeared first on Jumbledbrain.

Wego award win: Plan to promote progress for brain injury survivors.

Michelle #jumbledbrain — Tue, 19 Oct 2021 11:29:45 +0000

First of all, thanks to everyone who showed their support of me in 10th Wego health awards. You nominated and endorsed me for a whole host of categories. I’m humbled and touched by this, and it lead to me winning the “Best in show: Twitter award”. These awards aren’t just a popularity contest. In each category the 3 nominees with the highest endorsement numbers automatically become finalists, and 3 finalists are chosen by Wego’s judging panellists. I think this strikes the balance between listening to what the patient community are saying, and recognising work of those who are quieting and tirelessly working away but don’t have a large following to give them a shout out.

What this award is for…

Essentially this is about what a nominee shares on Twitter. To be a finalist the nominee needs to share useful content that others in the patient community would find handy, and do so regularly and constantly. In addition, this needs to be not just about sharing your own content but other’s too. Everyday I post other’s blog posts that I think will benefit my followers. I do try to find articles on brain injury, but also I share blogs from other chronic illness sufferers, particularly since brain injury survivors often have similar symptoms so lots of people find these posts useful.

Who are Wego and why do they matter?

Wego have formed a network of over 100k patient leaders from across the globe who together represent pretty much every health condition. Together that gives a voice to patients which tells the medical and pharmaceutical industries what patients really want them to know. Yes these industries have to make money to be able to pay the wages of their staff and buy valuable equipment/premises to be able to carry out their work, but the patient still needs to be the focus of everything they do. Too many of us have experienced times when we have felt dismissed or that the information we need isn’t readily available. Pointing this out as an individual should be heard, but lets be honest, it often isn’t. We can be disregarded as a drama queen or just an unfortunate one off case. However, when we are brought together as a community, our voice becomes much more powerful and compelling.

The most important and exciting part of winning a Wego Health award is…

As a winner I am invited to be a 2022 WEGO Health Patient Leader Advisory Board member. That gives me an opportunity to get even closer to the action and make sure your views are heard! I am looking forward to getting the details of how this actually works but I have high hopes for what this could mean as I proudly represent you, my fellow brain injury survivors. I hope this will mean I can draw attention to issues which are still not being properly addressed, such as how many of us have no coordinated recovery plan once we are sent home from hospital. Clearly change won’t happen over night, but I still want to try to promote a better future for subsequent brain injury survivors.

Other articles you may like:

Let me know what messages you want me to take to the medical and pharmaceutical industries about what they could do better to support recovery from a brain industry.

The post Wego award win: Plan to promote progress for brain injury survivors. appeared first on Jumbledbrain.

How I explain what living with a brain injury feels like

Michelle #jumbledbrain — Tue, 21 Sep 2021 15:04:55 +0000

There are so many names for a brain injury; TBI, stroke, brain damage, brain tumour, concussion, PCS… and yet actually describing what it’s like to live with THE most important organ in your body not working the way it used to, is exceptionally difficult. As most of the people we are conversing with haven’t had the bad fortune to experience a brain injury themselves, it’s hard for them to put into context what we are trying to outline. So often I hear from other survivors who feel totally misunderstood by their family and friends who unintentionally continue to diminish what they are having to deal with. Unfortunately, as a society we have been doing this for a long time. Women take the mick out of men for the “Man Flu”, by assuming that they have coped with worse symptoms than the man is suffering with. Men blame a woman’s heightened emotions on her “time of the month”, insinuating that her response doesn’t need to be taken seriously because it’s only a temporary effect due to her hormones. Many of us have worked somewhere where there has been a member of the team who calls in sick more than the average, and although the person may be well liked, there’s still an underlying sense in the team that they are just being a bit lazy and a let down. However, as no one can actually physically feel what an individual feels in a moment of time all of these examples are where people are downplaying the peoples health condition without merit to do so. This is psychological invalidation, even when a person doesn’t recognise that they are being dismissive. Often people need to see or hear it from a third party to be able to consider that it’s not just one person being “overly dramatic”, that it does actually happen to other people too. That’s why I’m going to describe just a snap shot of what living with a brain injury is really like.

Thinking can be like walking through treacle.

If you’ve ever sat an exam and afterwards wondered how you answered any of it because now you’re so shattered you can’t remember even the simple answers, you’re on the right track to what most days can feel like for a brain injury survivor. Women who have had “baby brain” or “menopause brain fog” should be able to relate to this. Men, the only other comparable example I can think of for you is trying to work with the worst hangover ever, the type where even putting in your password in your work computer feels like the trying to spell “cataclysmic” in Russian. Whilst these examples are scenarios which will pass and clarity will return, for us clarity is but an occasional visitor. The most frustrating part is that we know the answer is in there and when we work really hard we can find it, but it’s exceptionally draining.

Having a memory which has more in common with Swiss cheese.

A persons memory is always changing as your brain holds on to the things that you use more often, and throws away the memories that you never look to anymore as we don’t have an infinite capacity for them. So we have all experienced a time when someone brings up a scenario from the past that is as clear as if it was just yesterday for them, but we can’t remember it all. Take that feeling and that is what it feels like when you’re told you have told the same story 3 times in the last hour because you don’t remember that you’ve already told it today.

And yes everyone has done that thing where you walk into a room and ask yourself “what did I come here for?” because you’ve forgotten what you were doing, but believe me that it just the tip of the iceberg of what dealing with a damaged memory is like. In Clearly lost, the snag of brain injury I described what it was like to get lost in my own town. I just couldn’t remember how to navigate between different locations and it took me ages to achieve what I’d gone into town for. It was like when you visit somewhere for the first time but the map isn’t clear and the GPS on your phone isn’t working. You know you must be sort of in the right area but can’t figure out where you’re going wrong.

Planning any social activity means blocking out the whole week.

Fatigue is debilitating and it isn’t just about whether you had a good nights sleep or not. Because an injured brain is having to work so much harder to do even the simple things, social events drain us much faster than other people. Trying to follow the conversation/s, dealing with a different location, bright lights, background noise, it all adds up and we struggle to filter it out the way other people do. I recounted a disastrous experience I had at a restaurant because of these things in Light and noise sensitivity after brain injury and how that put me in an awful mood. I then was good for nothing for days later because I was so exhausted all the time. Believe me, I was ashamed at my behaviour at the time, but there wasn’t anything I could do about it. So if we seem moody and antisocial, please don’t take it personally.

There are some things that can be extremely difficult to do due to extreme weakness.

Unless you’re ambidextrous, most of us have a dominant side, with the other not being as strong or coordinated. But when I say I have weakness in my left side following my brain injury I’m talking about something much more severe than that. A few times I have tried to indicate what this can translate to and affect my everyday life, but I recommend Held back by weakness from brain injury where I explains how I couldn’t even open my front door! Imagine that, being a prisoner in your own home just because the nerve damage it you stops your muscles from being able to transfer enough force. Or how about not being able to ride a bike because one leg is not able to peddle and you become unbalanced. That’s what we mean by weakness, not unfit coach potato weakness.

Emotions can be sudden and more intense than we are able to handle.

In Unstable emotional lability after brain injury can be tense I outlined how our responses to situations can be disproportionate, and nearly 7 years after my accident I still have these moments. These days I am able to recognise that the situation doesn’t warrant the scale of emotions that I’m experiencing, but it’s still a challenge to calm myself down. Recently I was totally livid about something so miniscule that I knew I had to go walk it off. But it was 1 o’clock in the morning, so rather than wonder off in the dark, I did hundreds on circles in my tiny garden with the security light behaving like my spot light. (Sorry to my neighbours if I woke you up and confused you.) It still took about an hour for the episode to pass. All the while I was telling my concerned partner how I understood I was being ridiculous (I was so embarrassed about how stupid the thing was that I wouldn’t even admit to him what had upset me so much) and yet I was still fuming.

I could go on all day seeing as a brain injury can impact EVERYTHING, but I thought I should keep this succinct enough for non brain injury survivors to be able to take it in. The important point is that although we might not always be able to describe what we are going through, we need your compassion, not judgement. Believe me, we WANT to feel better, think faster, be able to control our emotions, but sometimes we just can’t. We know that can be difficult for others to deal with and we appreciate your support and understanding. Bear with us, our good moments do still visit and it’s worth the wait.

How do you describe what living with a brain injury is like?

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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.

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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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When raising awareness becomes TBI victim blaming

Michelle #jumbledbrain — Tue, 27 Apr 2021 14:48:32 +0000

There is still a lot of misunderstanding about traumatic brain injury and the long term effects. One area which is starting to be better appreciated is concussions in sports. In a number of sports it has become protocol to take a player off the field the moment a concussion is suspected to minimise the damage and maximise recovery. This is an important culture charge and I hope that improvements in attitudes and treatments continues in this vain. Thankfully, I have yet to see people blame a sports person for a TBI they sustained whilst competing in a sport. It seems to be accepted, and rightly so, that these injuries are an unfortunate accident that the sporting authorities need to do everything within their power to try to prevent. When a TBI does happen to a player they must get the support they need and everyone else needs to analyse if there is anything that can be done differently to minimise the risk of it happening again.

However, the same can’t always the said for other causes of a TBI.

As someone who sustained a severe brain injury in a car accident, I always find I feel I need to clarify that the accident wasn’t my fault. Part of me assumed that this was my own hidden prejudice and/or ego that lead me to do this. But on national alcohol screening day, (I think this only happens in America, it’s certainly not a thing here in the UK) a prominent Not-for-profit put out a post on social media which validated my need to defend myself.

We already struggle with people under estimating how our invisible disability effects we, especially since we can have days when we APPEAR to be doing well. This can lead people to think that we play up to it or use it as an excuse when it suits us. The last thing we need is for them to be given another reason to withhold compassion.

I’m not going to name the Not-for-profit involved as I have no doubt that they do important work for many survivors and I do not want them to be trolled for this oversight. I already told them how their wording made it sound like TBI survivors caused their own circumstances, although I’m not sure they quite accepted that they could have worded it better.

“30% – 50% people treated for TBI who were under the influence of alcohol at the time of injury” is what they chose to post, with no other context. Firstly, if we get past the bad grammar and badly constructed sentence, they appear to be saying that a lot of us were drunk when we sustained our brain injury. They give no indication as to where they get their figures from. I’m confident that not everyone who sustains a TBI is screened for alcohol, this would only be relevant for drivers if the police are looking to see if they need to prosecute for driving under the influence. Anyone who had an accident at home, for example, wouldn’t need to be screened for alcohol. Even those who were assaulted whilst out drinking this post represents unfairly. They are the victim, but by focusing on their alcohol consumption makes it sound like they got what they deserved. Only after I challenged them for victim shaming did they clarify that they were referring to driving under the influence, but anyone who was just scrolling through their social media feed probably wouldn’t have seen this.

When you are acting as an authority on your subject you have an increased responsibility to be clear and accurate.

This organisation wants to do what they can the prevent brain injuries wherever possible, and I support that wholeheartedly. Drink driving is a very dangerous thing to do and too many lives are lost or forever changed as a result of it. Therefore, anything that we can do to convince people not to do it, the better. Particularly since it’s not just the individual who is at risk. Both passengers, other motorists and pedestrians are put in grave danger every time someone gets behind the wheel after consuming alcohol. This is why this badly worded post upsets me so much. They are many brain injury survivors who sustained their life changing injury as a result of SOMEONE ELSE’S drink driving. They are the victim, but this post could make people assume it was their fault through the perceived choice to drive whilst under the influence. We already struggle with people who underestimate haw our invisible disability effects us. They can accuse us of “playing up to it” or using it as an excuse “when it suits us”. This kind of badly thought out post can give people just another reason to condone showing us a compassionless attitude.

I want to implore anyone who is working as an authority on brain injury to double check any posts they put out like this. Double, triple check it. Ask someone else what they take from the post and what they think it is trying to say. It’s not uncommon for us to not realise that, without context, people can read our message differently from how we intended it. Make sure you are helping to raise understanding as well as awareness, and not adding to the discrimination and misunderstanding we feel everyday.

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Do you think organisations need to be careful on social media to avoid posting updates which don’t serve our brain injury community?

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