“Yes, I know you..”, or do I? Brain injury makes a mishmash of my memory again.

My brain injury makes me question a lot about myself. But I know who my friends are and I will do everything I can for them... and they do for me too.

Recently I went to the wedding of an old school friend, who I had only recently got back in touch with. As we had moved in different circles for years, I expected to know only another school friend and her husband. But actually it was more complicated than that. I wasn’t sure if my brain injury was playing it’s old tricks on me again.

Should I remember you?

It was easy to see who was the mother of the bride, due to the strong family resemblance with my old school friend. When I went to speak to the mother of the bride, as she is partially sighted she had to ask for my name. Immediately a flash of recognition came across her face, as she was able to place who I was. She was charming, and warm, just like her daughter. But I didn’t like to say that I couldn’t remember ever meeting her before. The bride later told me that her mum said I hadn’t changed a bit. (Seeing as about 15 years has passed, that’s very nice of her to say so.) But I’m not sure if she just had seen photos of me, or if we had met all those years ago.

Since then I have had moments when I can picture the mother of the bride at school. But this could be just confabulations that my brain is putting together. My memory is so woolly, that I’m always trying to fill the gaps with “memories” that have come back to me. So I can’t be sure which are real. Read more about what confabulations are in Confabulation is not lying. False memories due to brain injury.

What it's like struggling to remember if you know someone after brain injury

Meeting so many people, it’s hard to retain details.

I know most people would say it can be tough to remember names of people you have only just met. But on top of that I was trying to remember what I had already said to who. Several times just as I asked a question, I would suddenly realise that they already answered that. I hope they didn’t think I wasn’t listening. I was, it’s just there was so much going on that my brain kept filing things in the wrong place.

The couple of people who knew me well from years ago, said they wouldn’t have spotted I was different. So I can’t expect all the other guests to know if I say something daft, it’s just a brain fart.

Even when the grooms sister told me she had suffered a stroke a few years ago, I didn’t mention my traumatic brain injury. As it still affects her mobility, and probably many more things, I didn’t want her to think I was suggesting I know everything. I realise this is stupid, and it’s highly unlikely she would have taken it that way. But I was nervous and was keen to ensure I didn’t cause offence. As I explained in Suddenly my filter has abandoned me after brain injury, I can put my foot in it too often. Because I struggle to recognise what is and isn’t tactless, my way of dealing with it as just to not say it. Better to be safe than sorry.

Trying to get on with it when you're not sure who you know thanks to brain injury

But I made it work.

As James and I are due to be going on holiday in just a few days, he couldn’t take the time off work to attend the wedding. But as I was so delighted that she had invited me, even though me hadn’t been in contact for years, I went on my own. It was a 2.5 hour drive to the wedding, and I decided to go down that morning and drive back on the same day. That’s a tall order for anyone. I planned on at least waiting for the cutting of the cake and the first dance, before slinking off.

By then I was already zoning out, and the loud music pretty much finished me off. So I said my goodbyes and slid out to my car that doesn’t have a working stereo. I must be the only person I know who would put up with a stereo that doesn’t work. But actually I find driving takes so much attention, I can’t listen to anything at the same time anyway.

Once home I pretty much collapsed. But I’m really glad I went. Although my brain injury did it’s best to make a fool of me, I think I got away with it.

Do you ever struggle to recognise if you know someone or not following your brain injury? Do you style it out, like I did, or just be honest and tell them?

 

Do I know that person or not? My memory is a mishmash thanks to my brain injury, so I can't remember properly.
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Where does the time go? A day flies by after brain injury

Since my brain injury, I find time passes me by

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.

How after my brain injury, time is gone in a flash

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.

How time seems to be running away from me after my brain injury

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?

I would say I'm busy most days and yet I don't get much done. Since my brain injury time just flies past me. Or am I just really slow?
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Accepting the bumbling idiot suddenly created by brain injury

I think I'm a bit of a bumbling idiot after my brain injury

I’m not sure how, but my brain had been like a building library of interesting facts and information. Of course I didn’t know everything. But there was always a strong chance I might have something useful to add to the subject. However following my brain injury I’m more like a bumbling idiot. I confuse details and remember things incorrectly. Once it’s pointed out, I can back track and see where my error came from. But by then the damage has already been done and I’ve shown myself up, again.

I know it’s forgivable, but I still berate myself for it.

The problem is, unless I quote my “fact” to someone, who in turn points out my error, I can go on believing it for a long time. And in a way that can be more dangerous, so I have to show myself to be a bumbling fool to make sure I’m set straight. But all the while, my confidence is chipped away at. I mean, when you can’t even trust your own brain, what can you be confident about?

These can be simple things, that on one hand might not seem like a big deal. Just yesterday I claimed the M20 motorway runs into West London. It was just because my partner James and I drove past a road sign warning of delays on that road. But James tactfully corrected me, saying how to runs from Dover, on the South coast, to the M25 (the ring road around the outside of London). Hardly anything to worry about. But when this type of thing happens everyday, you can’t help but question yourself.

My brain injury caused me to be Bumbling, which in turn grates away my confidence

Everyday life can be impaired as a result.

It affects my ability the plan things well. I had been required to attend a meeting about my dad’s care on Friday just gone. This is in Somerset, and is almost a 200 mile drive for me so I now try to tie in other things at the same time. I arranged to see an old school friend that I had recently got back in touch with. I planned to attend the meeting, spend some time with dad, and then see my friend. Thinking ahead about the journey back, I had decided I would drive home in the evening to let the rush hour traffic get out of the way. Sounds like a pretty descent plan, doesn’t it?

However, the meeting got postponed, so there was no need for me to make the trip on that specific day. Nevertheless, I thought it would be good to see dad, and I wanted to catch up with my friend. So there was no harm in going still, was there?

But what this bumbling idiot hadn’t realised was that the Monday following that weekend would be a bank holiday! I knew there’s a bank holiday in the UK towards the end of May, but my stupid brain had decided that would be on the following Friday. The significance of this is the amount of traffic that always makes it’s way to the South West for extended weekends. So even though I started my journey late morning, I got caught in huge delays. The journey usually takes me 2.5 hours, but that time it was 4 hours.

I would make a terrible events organiser.

Don’t get me wrong, it was great to see my dad and my friend. But it made for a long day, which I’m still trying to recover from.  If I had made it another day, I probably would have made it easier on myself.

I am functioning pretty well after my brain injury, but little things like this all build up. So I’m having to recognise that I can’t always be sure of myself. In Order of events disorientated. Another brain injury aftermath, I talk more about how I have to admit defeat sometimes. Perhaps that will stop me from ever being arrogant, which is a good thing. But I miss my uninjured brain. This feels like when someone who was very good  at their job leaves, and their replacement is struggling to settle in. However, even though this brain hasn’t passed it’s probation, I can’t fire it.

For more information on why confusion happens and what you can do about it, visit Temporary Confusion or Decreased Alertness – Topic Overview.

Feeling like I'm a bumbling idiot following my brain injury

Do you ever feel like a bumbling idiot following your brain injury? Or are you better are forgiving yourself?

 

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You’re an expert on brain injury? Well I’m the expert on mine.

A brain injury expert may not always listen as well as they should

Having a brain injury is distressing enough. But feeling like you have to prove it’s existence to a so called expert, is soul destroying. Too many of us have felt we aren’t being listened too. When you have gone through all that effort of trying to describe the indescribable,  you are stunned that you’re being brushed under the carpet. In Brain injury patient alert, what do you expect? I outlined one example of this happening to me. At that stage I thought it was just me, but now, sadly, I know it’s not.

It’s their job to judge, but if they didn’t know you before, how can they be accurate?

The brain is such a complex subject, and still relatively little is understood about it. So I realise that it’s difficult to be certain of what the problem is. But I think there is too much reliance on brain scans. I, like so many others, had scans which didn’t show the damage. That might have lead to one so-called expert, having a biased view.

The first Neuropsychologist I saw, having read reports about my “normal” scan results, said my struggles were psychological. And I’m sure that after going through a life threatening experience, some of them were. But that doesn’t mean I didn’t also have physical damage to my brain. There was something about that which made me feel he was suggesting that I was mad or just making it up. My lawyers had booked my appointment with him so they could build a case for my compensation. He was supposed to be on my side! If he was questioning my condition, how would everyone else see me?

The cognitive tests he did with me didn’t show up much either. But that was compared to national average statistics, not Michelle on a good day statistics. So at best I was pigeon holed as a bit crazy, at worst, a liar.

If you want to know more about these types of tests  A Guide to Neuropsychological Testing from Brainline.org does a pretty good job of outlining them.

When a brain injury expert doesn't acknowledge what you are going through, it can be soul destroying

We know there isn’t a magic wand someone can wave, but some validation would be nice.

Any “expert” can only begin to imagine what it is like to suffer a brain injury. My world was turned upside down. The worst part was that I couldn’t trust myself anymore. Things I thought I knew , were wrong. It felt like that moment in the film, “The Matrix”, when Keanu Reeves’ character finds out that they live in a simulated reality, and nothing is real. But this is my life, not a movie that 2 hours later you just carry on as normal!

I know they have to detach themselves from it to be impartial, and remain sane. Otherwise it would be too draining getting to close too each case. But we are people, not just humans. At the time I thought my case might have been because, being a legal case, they wanted to be sure I wasn’t overstating my injuries just for the money. But I have heard of too many survivors being dismissed.

The questions in the consultation feel like the Krypton Factor.

Even when they are approaching you with an open mind, half the time you don’t know what they are talking about. For anyone who isn’t medically trained the terminology is baffling, but when you have a brain injury it’s virtually impossible to understand. So when answering their questions you’re never quite sure if you gave them the details they needed, as it’s difficult to see what they are driving at. Therefore they still might not understand the gravity of your situation.

A brain injury expert may not always see everything

As with all professions, there are some who are good, and those who are not so good. Luckily I went on to see a really helpful Neuropsychologist via the good old NHS. Her tests did prove I had some cognitive issues, and she was very supportive. So just because one expert downplays your condition, don’t give up. Get a second opinion. Sometimes the challenge is finding the right person to understand you.

What is your experience? What would you think a brain injury expert to do differently?

My blog on living with brain injury : Sometimes the experts can dismiss us. Then who do we turn to for help?
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Starting a blog following a brain injury is difficult, but it is achievable.

How I started my blog after a brain injury

Most of you will know that my motivation for starting this blog, was to raise awareness of brain injury. Based on my own dismal understanding of it before my car accident, I figured it’s likely that the majority of people are the same. As I explained in Trying to understand what’s wrong , blogging was the only way I could think of being able to get my message out there. I knew that with time and effort, it is possible to find an audience. The problem was I had no experience. I understood how to use keywords to search for what I want on the internet. But I didn’t have a clue how to set up a website.

I even had to take short cuts in my research.

Even though I was planning on doing this with no support, I decided I was definitely going to do it. My brain injury made me have rigid thinking, so once I set my mind on it, there was no going back. My starting point was to find what other bloggers recommended.

There are so many options out there, and I didn’t have the concentration to delve into it. What I did learn quite quickly was that if you go for a free site, only do it as a hobby. The reason is that as you aren’t paying for the domain name, the host can sell the name to someone else at any point. If it is just a short term thing you want to do, that’s fine. But knew I didn’t want to one day type in my web address and find another persons site open up in it’s place. For more details on Free vs Paid, Should I choose a Free or a self-hosted blogging platform? does a great job at outlining it for you.

Next it seemed the WordPress program was the most widely used for blogging. It you want to see a list of all the options, with their pro’s and con’s How to Choose the Best Blogging Platform in 2017 (Compared) does a great job at doing this. Again as I didn’t have the ability to complete my research from scratch, I decided I would go with the people vote. And the most recommended host site was Bluehost. As I knew nothing about how to do this, I needed a platform that would make it as easy and idiot proof as possible. But this isn’t an advert for Bluehost. Yes I paid good money so I could have a better chance of starting on the right foot.

If I can write a blog following my brain injury, so can you

A brain injury can make learning new things more challenging.

There were lots of terms I didn’t understand, it was like learning a new language.  But I had time on my side, so just kept plugging away. Initially i just used images I found on Google and added text to them. But even if your blog isn’t generating money, you can be sued if you aren’t licensed to use that image. However it turns out there are some sites that have images you can use for free. I like Pixabay because it also is happy for you to alter the images.

As I write to support other brain injury survivors, I had to try to reach my audience. Facebook groups have been the best approach for me so far. Mostly because as they are support groups, their members want to talk about living post brain injury. But I know there’s many others out there. I’m still trying to work out how to reach those who favour other social media platforms.

Other than Facebook, I was a complete beginner when it comes to social media platforms. I had never sent a tweet, or even understood why people followed complete strangers. But that’s where my blog has taught me something new. There’s lots of amazing people out there, it’s amazing what you can learn from them.  I have been lucky enough to receive a warm welcome from some wonderful people. I didn’t know them before, but they still offer me so much, through useful suggestions, and their open hearts.

Starting a blog after brain injury
Just be prepared for others might not see the value of your blog, and occasionally express it.
If starting a blog something you really want to do, you can make it happen.

Whether you want to write it for your own therapy, or you want to make an impact, there are options out there for you. Yes it’s confusing, so be patient with yourself, and be prepared for the fact that you are always learning. Unlike a book for is no ending with a blog, only how long your commitment lasts.

Have you been thinking of starting a blog, or have you already had one? Is there anything you wish you had known before you started?

My blog on living with brain injury: I started a blog and had to teach myself even with a brain injury. So if you have always wanted to do it, have a go.
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Master the act of ditching the hurtful but inconsequential things. Battle of brain injury survivor.

So I have a brain injury, that doesn't give you the right to throw hurtful comments at me.

As humans we are so diverse and that’s what makes the world so interesting. Imagine how boring the world would be if we were all the same. Whilst we will have some things in common with another person, we still have different strengths and views. But that can lead to us to making some hurtful actions or remarks when we disagree. It doesn’t have to be like that, and often the person doesn’t mean any offence. In my previous post Dodge behaviour related misunderstandings provoked by brain injury. Tips from a survivor , I talked about how others might take offence from our behaviour. So today I thought how it feels when the boot is on the other foot.

We all can say something unkind at times, and usually people just brush it off. But my brain injury makes me more sensitive and less resilient.

Don’t get me wrong, I realise how easy it is to put your foot in it. Recently I was trying to pay a friend a compliment when it backfired. She’d posted on her social media about how she was about to start in a new role she had been promoted to. Knowing her well, and the journey she had been on, I knew what an achievement this was, more than most.  There was a time that she seriously considered resigning because she was going through a tough patch. To recognise her determination and tenaciousness, I wrote that she  was a true “British Bulldog” for how she turned her situation around.

I thought I was showing her my support, but it was misread as an insult. My friend and many who read my comment, thought I was calling her a “dog”. It’s not a term I would ever use, so it didn’t enter my head that it could be seen as hurtful. Once we talked about it and I explained I took it for granted “Bulldog determination” was a well known saying. Therefore I assumed the good intention would be understood.  I was genuinely mortified that they took it the wrong way.

We smoothed it over and moved on, but I’m still reeling from it really. I’ve run over it so many times. I’m angry at myself for making a stupid assumption. And I hate the idea of people I don’t know but she does, thinking I was taking a swipe at her when I meant the opposite.

I need to stop thinking about hurtful comments. I need to focus on dealing with this brain injury.

Sometimes the faceless world of the internet makes hurtful comments stick faster.

As a blogger I am a fan of the wonderful resources and opportunities the internet gives us. But, as with everything, it does have some less admirable elements too. I don’t expect everyone to agree with me if they have kindly taken the time to read my articles. However I’m still surprised now some people react.

I’ve had some people take aim at me for grammar errors. Believe me, I do try to make things easy to read, it’s not that I don’t care. There are times some people pass judgement before reading the article. And that’s their right to do so. When you open up your thoughts in this way, not everyone wants to hear them. (I feel the same way about reality celebrities, although I hope that’s not the way people see me.) But if you don’t want to know what I’m saying, just leave it there. I’m not forcing anyone to read, them. It’s fine to have a different point of view that you want to raise. But don’t just take me down because me need someone to aim at.

I even had a troll for a while.

They say you haven’t made it until you have a troll. This person would send me messages telling me how awful I am, and that no one cares or will help me. They didn’t even explain what I had done to upset them. Each hurtful message was sent more than once to try to ensure I saw them.

I so wanted to retaliate, but I read the best way to deal with them is ignore them. That way like a petulant child they will get bored and look for a new target.  My site has filters on it which do a good job of stopping spam and nasty comments making it into my site. I can check them like you can look at your junk email folder, but unless I OK them, they don’t get published. That meant they didn’t get any attention from me or my other readers.

Luckily, it worked and they gave up. But I was left feeling like I’d been on an unfair trial, not knowing the charges or being able to defend myself. But I hate the idea that they got away with it. Typical bully behaviour, being a coward they don’t have to face their victim or any consequences. Worse they are free to subject someone else to their mindless acts. (If you want to learn more about Trolls and how to deal with them, I found How to Deal with Trolls on Social Media useful.)

Hurtful comments can get to you. But we must brush ourselves down and move on. If we can fight a brain injury, we can take a thoughtless slight.

Putting it to one side doesn’t mean I don’t care, just that I won’t focus on it anymore.

We all have our right to have an express our opinions. I have to toughen up. If I was to take all differences of opinion to heart, it wouldn’t end well for me. When you have a brain injury you have a big enough battle on your hands as it is. So I need to get better at just letting things go.

Do you find you can brush off hurtful comments? Are you better or worse at this since your brain injury?

My blog on living with brain injury: I dwell on silly things that I allow to hurt me. But I just have to let them go.
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Dodge behaviour related misunderstandings provoked by brain injury. Tips from a survivor.

Changed behaviours after brain injury can be testing for relationships

As I write about my experience of brain injury a lot, you might be surprised when I say sometimes I can’t explain how I feel. There are times this invisible heavy cloak descends on me. I’m trying to get on with a “normal” life whilst the cloak drags me down and wears me out. But the casual observer knows nothing of the cloak, just that my behaviour is different. Weirdly I have no motivation to even try to communicate. It’s just too much of an effort. I imagine when this happens I have more in common with an overworked Donkey, than a woman in the prime of her life.

As I appear grumpy, others think I’m annoyed at them.

We’ve all experienced that person who makes you feel like you can’t do anything right. You feel like you should be apologising for everything. Or making special efforts to win them over. Well, the cloak turns me into that person. It’s not intentional. I’m not really criticising everything, but I’m not showing any enthusiasm either. My brain injury just turns off the communication switch for a while. I still have emotions, I just can’t express them.

Brain injury can change your behaviour, but others may struggle to understand why

As this behaviour doesn’t give them anything to work with, I understand how it makes them insecure. Particularly since females are known for going quiet when they are angry. My partner, James, will ask if he has upset me with a tone similar to a child who thinks they have disappointed their parent. Even when I tell him to ignore my behaviour he seems unsettled. Perhaps he thinks that is just an excuse so I don’t have to explain what’s wrong?

If you have been reading my blog for a while, you will know by now James is my rock. And yes I am guilty of sometimes being a battleaxe just because his socks aren’t in the laundry basket. But when my brain injury cloak is on me, my behaviour is nothing to do with anything he has or hasn’t done. So the thought that I am unintentionally chipping away at his confidence is awful. I don’t want to make him question himself when he is completely innocent. In fact I don’t know where I would be without him.

My tips on dealing with this situation.

My not an expert or a counsellor, all I can tell you is how I’m dealing with this. It has taken me time to get to this point. So if highlighting this helps smooth another persons relationship, it’s worth it.

  • Acknowledge that it happens. Just because I don’t mean to make James question himself, it doesn’t mean it’s OK. I didn’t recognise it before as I didn’t have the ability to. But now I do, just ignoring it won’t solve anything.
  • Talk about it when you can. Even if it’s days later, I find a moment that it good for both of us to run through what happened. James is very understanding, which makes it easier. But even if the person in your life struggles to put themselves in your shoes, it’s important they see you making the effort. Most people will find it touching and sincere, which will help them see your bond isn’t broken.
  • Have a signal. Now I have described this as the heavy cloak feeling in this way, that’s all I need to say in the future. Then he will know that I can’t go into detail during that moment, but he doesn’t need to worry. But you can make a single where you don’t even have to say anything. It could be a long squeeze of their hand, a kiss on the tip of their nose (as long as they don’t have a cold at the time) or just a simple knowing nod.

Different behaviour from brain injury can cause problems

I sometimes am guilty of thinking that as he knows I have a brain injury, he should have got used to my behaviour by now. But that’s absolving myself of responsibility for how my actions effect him, which isn’t fair. Yes it’s true that I can’t help my bad days, but he isn’t to blame for them either. So he shouldn’t feel like he has to tiptoe around his home in hope I won’t use him as a punching bag. (Just to be clear, I’m not violent I just mean verbally.) I’ve said it before in Support carers, but it’s important we don’t forget they are in this boat too, even though none of us planned this.

How has your behaviour changed since your brain injury? Does my “heavy cloak” feeling sound familiar to you?

My blog on living with brain injury: My tips to other survivors about how to deal with those moments when you can't explain your behaviour.
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Exhausted energy levels. Brain injury can leave you high & dry.

When the brain injury leaves you exhausted

When I know I have something particular happening the next day I plan ahead. I make sure I get plenty of sleep that night, and have everything organised. This always used to work for me before. It meant I would be ready with my “A game” and be on top form. Naturally I still needed a good cup of tea to help me on my way. But soon I’d be on my marks, primed for the off. However my brain injury turned all that on it’s head, leaving me exhausted.

Fatigue isn’t something you can just snap out of.

I was going to the National Pet Show. If you follow me on Twitter you might have seen some pictures I was tweeting of Dexter, my Bengal. They said they were going to display visitors pet photos, so I wanted my little hero up there. But they did nothing of the sort, I was duped into advertising for them. However it demonstrated my excitement. I had been the previous year to the event in Birmingham, and had an amazing time. This year I was going to London, as it’s more local for me. And I imagined everything is always better in the capital, so this would be a show stopper.

But from the moment I woke up I was exhausted, both mentally and physically. I don’t have an explanation for why, only that my brain injury has a mind of it’s own. My partner James spotted it immediately and kept suggesting maybe we shouldn’t go. But I had been looking forward to this for ages. The brain injury wasn’t going to beat me this time.

How a brain injury can leave you exhausted

Travelling when you’re exhausted is a nightmare.

We drove to a tube station where at the weekend there is free parking near by. Even on this leg of the journey I was struggling to keep my eyes open. I couldn’t hold a conversation as that took brain power I just didn’t have. James was chauffeur, but still noticed I was spent. But I ploughed on and we began the tube journey the to Excel centre.

As the London underground is quieter at the weekend than it is during the week I was coping. But I felt like I was existing instead of living. It went down hill when we changed at Canning Town to get the Docklands Light Railway or DLR. (The DLR is still part of the underground, except it’s overground without being “The Overground line”. Confused?)

These trains are one long beast. The carriages are joined by sections which can twist and turn with the track, whilst allowing it to be wall free between the carriages. This part of the journey was the busiest, as the Excel centre always gets good attendance when it holds events.

So as we tried to find a space, we found ourselves standing in one these connecting sections. But I didn’t notice I had one foot in the carriage, and one on the twisting floor. I stood, hanging on to a hanging strap for standing passengers. Next to me was some guy who smelt like he hadn’t had a wash for a week. As he too was hanging on a strap, but was taller than me, my nose was almost in one of the offending armpits. The odour was over powering that even when the train started moving, I still couldn’t sense my legs were moving in different directions.  I was thrown all over the place. I survived, but if I hadn’t been so exhausted I don’t think I would have made this error. Thankfully, no one was hurt.

Adrenaline is like making a pact with the devil.

Once inside I loaded up on coffee. And the excitement of seeing the amazing creatures got my adrenaline going. Soon I was more like me, and was pleased I’d come. Although I would say in my opinion Birmingham did it better than London. They created a better environment and atmosphere, but the birds and animals were what I came for.

But whilst adrenaline gives a welcome boost, it comes at a price. Days after the event I’m still exhausted. All it means is you have energy up front, but like a loan shark it makes you pay with interest. You pay for it many times over.

I might be exhausted, but this brain injury won't beat me

So should I have continued, or stayed at home and rest? Life is for living, and whilst I’m feeling down and out now, you have to make to most of things. Life is too short to just live in the safe, boring zone forever. Just be prepared for a prolonged visit to the safe, boring zone after the excitement is over.

To find out more about how adrenaline can affect you, read Stress has a big impact on brain injury

If you know your brain injury will leave you exhausted do you give fun things a miss?

My blog on living with brain injury: How it's tempting to push yourself when you have no energy, but the recovery time is longer than you imagine.

 

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Do I tick the disabled box or not? Brain injury is more complicated than that.

How does the disabled box help when you have a brain injury?

These days there’s a form  for everything. Some ask open questions and leave a section for you to write in an answer. Others it’s just a tick box exercise. The latter is probably more to make data entry easier, rather than to assist the person completing the form. And then it asks if you are disabled. But doesn’t clarify what counts, why it needs to know, or how being defined as such will help. I understand that because here in the UK we have the Disability Discrimination Act, it is to highlight the individual to avoid discrimination. But unless you know in what way someone is disabled, how do you assist them? I don’t think a brain injury fits into this exercise easily.

My suspicion of such forms.

OK hands up, I know I’m over reacting. But here’s why: Some of you will know my Mum was Irish. She always felt forms asking about ethnicity were discriminatory, if they asked specifically if you are Irish. Previously I wrote in Agony of cognitive tailspin after brain injury about how Mum was proud to be Irish. She was acutely aware of how the rocky historic relationship between Great Britain and sectors of the Republic of Ireland, coloured some peoples view. So she questioned why they had sections for both Irish and European. As the Republic of Ireland are in the EU, Irish citizens could just tick European.

Mum was suspicious of being badly labelled because of the activities of the IRA. Most likely she was over imaginative, but no form should intimidate you this way.  She was trying to understand why they needed to know when an individual is from that specific island. And I find myself now doing the same with the disability box.

Questioning the disabled boxes use is you have a brain injury

I’m not registered disabled, because you can’t.

Most people think the easy answer to this is, only tick “yes” if you are registered disabled.  But there is no such thing anymore. There are some Government benefits you might be entitled to, but if you don’t qualify there is no other database you can be registered on. This was a result of the Disability Discrimination Act coming into force in 1995. That was when the country started to realise that as disability doesn’t have to be physical, so dropped the register.

If students have conditions such as dyslexia, it’s important they inform the school or college. This is because in exams they will be given extra time. It’s important because the student may have the right answers, but needs extra time to be able to process the question and submit an answer. So it’s not enough to tick the disability box in this example, they need to know how to support them. Otherwise if the school provided a ramp for wheelchairs, but not extra time, the box did not prevent discrimination.

The term is very broad so I’m not sure how it helps.

If the box might not prevent me from being discriminated against, why would I want this label? I have enough pointless labels as it is, thanks very much. In Living with invisible disability caused by brain injury I was pointing out how there are times I wish the public knew they needed to cut me some slack. I meant things like don’t shove past me when you’re in a hurry, as my weak leg and poor balance might make me fall over. I don’t mean I want a neon light flashing over my head saying “Give this one a wide berth as it’s faulty.”

Does ticking the disabled box when you have a brain injury ever help?

I’m sure there a hoards of people who disagree with me and find the disability box very useful. But recently I was at an appointment with a new therapist, and I asked it the box meant things like blind, deaf etc. Having told her I had a brain injury she asked if I was registered disabled. As I’m not (at this point I didn’t know that this is defunct) she said I should leave it. However, by the end of the session, having learned more about me she decided to reverse that decision. So there are probably a huge proportion of people who don’t tick the box, when in fact they should. But if there isn’t going to be an explanation of how you qualify in a tangible way, or what the use of this information is, it’s as much use as a chocolate tea pot.

Do you find being classed as disabled on paper assists you? I’m not sure a brain injury would ever not qualify, but have professionals ever argued this with you?

My blog on living with brain injury: Do I tick the disabled box?

 

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My brain injury doesn’t mean you fool me, admit it you’re wrong this time

A brain injury does not make a fool

You don’t have to have a brain injury to have memory problems. But when you can’t trust your memory, often you find yourself apologising for it. Maybe it’s someones name you can’t put your finger on. Or it turns out you have already told that person a million times the story you’re imparting with relish. None of which means you’re a fool, but I’m sure I’ve been mistaken for one before now.

Humans have a predisposition for making assumptions.

We learn through repetition. Take an Orange for example: You enjoy the sweet citrus favour and it’s texture as each segment gently pops as you bite it. But imagine you have never seen or heard of one before. You pick a ripe one from an orange tree. You go to take a bite. Immediately you are other-come by the bitter flavour of the peel, and the chewy, spongy texture of the pith. That experience might lead you to think it’s not good for you, let alone it tastes awful.

But as most of us have been shown by a parent or guardian how to peel the Orange first, we can sample it’s goodness without the peel taking the first punch. But does that mean we have to peel all fruit for the same reason? No of course not, but you might forgive an alien for being confused. That’s how assumptions happen, but what I’m trying to say is, it’s natural and forgivable.

Having a brai injury doesn't make you a fool

Therefore I can understand how if a person knows the other person has a memory issue, they might assume they have to take what they say with a pitch of salt. But whilst they are trying to avoid being gullible, sometimes they end up being the fool.

When someone wrongly thinks you have been blinded by science.

I was called to a meeting about some paperwork regarding my Dads care. (I might have mentioned this before actually, but I can’t remember.) After the 3 hour drive, the lady James and I had come to meet with, explained what she needed. We hadn’t met her before, but she was very competent. But it all felt so familiar. I kept trying to her that I was sure all this was completed at a prior meeting. But because neither James or the lady had been at the previous meeting, there was only my memory to rely on.

Perhaps I didn’t understand enough about the system. It was plausible that different departments needed similar information but weren’t great at sharing it amongst themselves. Therefore forcing people to complete forms over and over again. Or maybe I was having deja vu? (Those of you who have read about how rubbish I am at French, may I have a round of applause please! I’m only kidding.) My untrustworthy memory failed to stop us continuing with the hours of work.

Brain injury survivors shouldn't be mistaken for a fool

About a week later I received a letter from the lady. She said there must have been a mix up when she was tasked with completing the paperwork. It turned out it had all been completed correctly at the previous meeting. She had been sent on a wild goose chase and was apologising for wasting our time. I’m sure she was hugely frustrated by this scenario, and didn’t like to be made to look like a fool.

But it’s not nice to deliberately fool someone who doesn’t remember.

When my Dad was fighting Alzheimer’s whilst living on his own, he would try to pay people over and over again for the same thing. I know because some of them would make a point of telling me so I could take over the payments via bank transfers. That meant Dad didn’t need cash, they just needed to send their invoice to his PA, me. But it wouldn’t surprise me if some might have succumbed to the temptation to accept the extra cash before I took over.

I might have a brain injury, but that doesn't make me a fool

But I do admit I “recycle” conversation topics with Dad. My life post brain injury isn’t very exciting (as you can tell). So I run out of things to say to him. But as he rarely remembers the last update on the life of Michelle, I do an impression of those TV channels who just broadcast repeats. But as this causes no harm, and is preferable to the awkward silences, I think it is acceptable.

The moral of my story is whilst someone might not always remember, don’t mistake that for lack of intelligence.

For more about how an unreliable memory is a struggle to deal with read Order of events disorientated. Another brain injury aftermath.

Have you ever felt people use your brain injury against you? Do you find yourself doubting your own memory?

My blog on living with a brain injury: some people might take advantage, but sometimes I'm right.

 

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