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Living uninhibited thanks to brain injury, my realisation

Michelle #jumbledbrain — Tue, 02 Jun 2020 16:05:02 +0000

When we moved into this house many years ago, I wanted it to be sophisticated and stylish, so we used pops of colour rather than allowing our use of colour to be garish. And it hasn’t changed much, mostly because redecorating can be too difficult with a curious cat about the place. We worry about opening the windows upstairs because he always looks like he’s so over excited that he’ll accidently throw himself out and go “splat” on the patio below, so filling the place with wet walls and paint fumes isn’t something we would do lightly. But instead I have recently given the garden shed a makeover. I didn’t even discuss with James what I was going to do to it. I told him the colours I was using, but seeing as he says he can’t envisage things, I did’t wait for his approval.

Feeling that my choice was right

I don’t know why, but I was confident in my choice, and whilst I knew it was unusual, I thought it was inspired. Sheds are often boring, and the inside of ours is definitely that. But I decided that as I see the outside of the shed everyday from my living room sofa, I wanted to make it more fun. Long story short, it’s got so many stars on it, it looks like the world smallest night club!

This isn’t going to be to everyone’s taste, and I admit it’s over the top even for me. However, it got me thinking about how it really didn’t matter if other people liked it or not (apart from James seeing as he lives here too.)

Years of worrying if others opinions would change based on my taste.

As a teenager I remember being so confused about how everyone could give each other a hard time about something simple like what music bands they liked. I worried about being the butt of the abuse so much, I rarely named any that I actually liked. It was the 90’s so brit pop was ruled by Oasis and Blur, and somehow a cultural developed that you had to be in either one camp or the other. Personally I liked both but was slightly more drawn to Oasis, and so if asked that’s the camp I was in. That meant if a Blur track came on I couldn’t be caught tapping to the beat or humming along otherwise I’d be caught out as migrating to the other side.

This made me feel like a fraud and that I should have definite ideas on what was my taste. But in honesty I didn’t follow music just because a particular band or artist had created it, it was just if that individual track resonated with me. Between this, and worrying about being caught out for liking the wrong stuff I rarely bought CD’s. (Yes kids this was before we could just download a track. We either bought a “single” for what felt like a lot for what you got, or you went the whole hog and bought the album.)

How I’ve become uninhibited thanks to brain injury.

One day someone close to me commented on that fact that I love to wear clothes with fun prints on them: like flamingos or pineapples. They said how I’m actually quite childish. Initially I took offense to this. It sounded like that where calling me immature and putting my down. But later I realised that actually what they meant was that I was fun and uninhibited like a child. Whereas before my brain injury I was a woman in her 30’s who had confidence and knew her own mind, I was still concerned with image. I needed to come across as professional, and I didn’t think flamingos necessarily fit the bill (no pun intended.)

As I’ve slowly regained some confidence following my brain injury, I’ve come to realise that I don’t have to worry if others don’t agree with my taste. Yes I might be a bit eccentric, but so was Einstein. Thinking back to when I was a teenager I desperately wanted to be one of those rare few who didn’t care what people said about their choices. Being different and just comfortable with who they were was actually much more attractive than the rest of us sheep who where just followers. Perhaps that’s what a life changing event does to people. Silly things like worrying if another person would like my crazy shed becomes trivial when you’ve gone through so much. I have touched on this a little before in Complacent but not carefree after brain injury which I wrote around 3 years ago. Then I was generally struggling more than I am now, so I put my almost slap-dash attitude down to necessity because I needed to pace myself better. However I now see that it’s do to with my perspective on life and finding enjoyment where you can too.

The teenage me would be proud of me.

Finally I have become the person the teenage me really admired and wanted to be. No, I’m still not sporty, have the figure of a super model or am running an amazing business empire. But I am finally being open about who I truly am, and not wasting energy trying to react to things in a particular way so the cool crowd will approve of me. Thanks brain injury, who knows if I could have done it without you.

Other articles you may like:

Are you uninhibited after your brain injury, and do you want to be?

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Guest post: Rich Parry-Jones, brain injury survivors husband & carer.

Michelle #jumbledbrain — Mon, 26 Feb 2018 10:05:15 +0000

I have talked before in Support carers about how important family of brain injury survivors are. Their attitude and approach can make a huge difference. So for the first time I have invited a husband & carer to give his valuable input. I introduce to you Rich Parry-Jones:

Always look for the positives, however small they may be.

It’s 1 year and 1 day since my wife Pauline collapsed, suffering a subarachnoid haemorrhage. This year has been by far the toughest of my life but throughout there has been enough positives, for me to know that she/we will get through this.

As mad as it may seem, even when we were giving Pauline CPR I thought, “thank god this has happened here” …. we were at friends house who is a nurse. Things could have been so much different, had we not have been .

Having had Pauline rushed to the local hospital, then on to a specialist Neuro ward after discovering a bleed to the brain, we eventually got to speak to a consultant.

He explained all of the odds and Pauline against these had come through so far. I knew she was strong and I knew she was a fighter, so I knew she’d come through this.

My thoughts then turned to our family, making sure they were all alright, trying to reassure them that everything would be OK. I think some people worried that I was too calm but I picked my moments, whilst alone to shed a tear or hold my head in my hands.

After 7 agonising hours that Pauline was in surgery, I bumped into her anaesthetist and he said “she’s OK”, the best two words I’ve ever heard. I knew from then on that if she could come through this, together we could get through anything. My thoughts then turned back to our 11 year old daughter, family, Pauline’s friends. All been so concerned. Then there was our business. There wasn’t time to feel sorry for myself, question …why us ? None of this would help, so I just thought what do I need to do next ?

Pauline was getting stronger by the day and apart from a very deep chest infection was recovering better than any of us could have hoped. I was travelling between our home in Shropshire and The Walton Centre in Liverpool. Not once did I think of it as being chore, as it’s what you do for someone you love.

After 2 weeks we finally got her home. This was way ahead of the time you would expect for someone suffering from her brain injury. The following weeks were probably the toughest. Pauline has a huge amount of friends and although the majority meant well, it was very hard keeping them away. I’d started back at work, and keeping an eye on our business (a hairdressing salon). Plus, as well as the day to day family stuff and we always had visitors. There was no down time, no time for us to be alone.

After the initial two week onslaught of constant visitors, it was as if someone had flipped a switch. Only family and a few close friends kept in touch with Pauline and she was left very lonely. People you’d expect to be there for her weren’t and people you wouldn’t expect were. It was definitely an eye opener.

I knew as she got stronger and more confident this would ease, such as once she was able to get out in the car etc. However one of the major issues with a brain trauma is anxiety and Pauline was suffering terribly. I’d try to find time to get her out of the house but it was hard with all of the other commitments. Things were strained but I knew what we’d already been through and this couldn’t be as bad as that .

I knew the stronger she got, the easier things would become. They have over time become easier. Pauline has got stronger and although there is still a long way to go regarding her recovery we’re along way from the times where she would be crying uncontrollably and I wouldn’t be able to say or do anything right . I knew she didn’t want to feel this way and she’d do anything to feel normal again. I always had it in my head however hard things were, that this is the same person I married, who I love so much and things will be better . Maybe not the same, maybe better. But when we’ve got each other, we can get through anything and that’s all that matters .

I think you’ll agree that Rich is a wonderful husband & carer to Pauline. Together they are a team, and draw strength from each other. If you’re ever in Ellesmere, Shropshire please book an appointment at their salon JS Hair. They have a passionate, and dedicated team. Pauline herself previously worked along side Trevor Sorbie MBE, 4 times winner of British Hairdresser of the year. Check them out on their Facebook page.

Other articles you may like:

What is the most important thing about the life partner/wife or husband & carer in your life? Is there something you would like them to know?

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5 things to remember when meeting a brain injury survivor

Michelle #jumbledbrain — Mon, 31 Jul 2017 11:45:31 +0000

If you asked the 5 year old me what I was going to be when I grew up, I definitely wouldn’t have described my current situation. Granted, blogging didn’t exist back then, but that’s not the only reason. I always saw myself working with people. The first career I named was an air hostess. (I know we say cabin crew these days, but we didn’t back then.) And my reason was really cute. It wasn’t because I wanted a glamorous lifestyle. I specifically said “I want to be an air hostess because they are always really nice to old people.” Isn’t that the cutest reason you have ever heard? And I wasn’t trying to score brownie points, that’s just what I thought was right. So fast forward nearly thirty years, and where am I now? Sat on my own in front of a computer at home, getting on with my life post brain injury.

But I’m not complaining, I just never thought it would happen.

My parents had their own business, so when I was growing up they were able to be at home more than others parents. I thought that was great, and liked the flexibility it allowed. But as I didn’t think I could ever be self employed, it was a lifestyle I couldn’t aim for.

So the positive in times post brain injury, is it’s opened up a door that I would have been too frightened to try before. And whilst I miss actually seeing people, I think my inner 5 year old would approve. Because I believe I’m being helpful and nice to lots of people, old and young.

I just wish society would accept that going out to work, isn’t the only way you can make a contribution. When I meet new people you always have to go through “what do you do?” The vacant and pitiful looks I get when I explain my current situation says it all. One guy asked “What, and people actually read your blog?” He was surprised that anyone would waste their precious time reading about what happens in a survivor’s life.

So here’s my tips to consider when you meet someone post brain injury:

“Don’t you want to go back to what you were doing before?” – I hate this question so much, and yet everyone asks it. If the answer is “No I really hated it”, that is sad in itself. But the majority of the time most of us would go back, but we can’t. So all this question serves to do, is make the survivor feel like they have to justify themselves.
“Isn’t there tablets you could take to help with that?” – Oh I never thought of that? Maybe I should ask the doctor. Give me a break! I didn’t study Neurology myself, so having to explain to an idiot that it doesn’t always work like that is such a chore.
“But you’re alright now aren’t you.” – Yes I’m brilliant. Apart from the debilitating fatigue, and confusion caused by brain fog. Oh and then there’s the migraines where I want to rip my own head off, but otherwise I’m first class!
“But you just have to keep pushing and you’ll get there.” – Oh is that right? Wait we need to see the head of Neurology and give them this break through. There’s hundreds of thousands of people post brain injury who need to know this! I know this is supposed to be supportive, but believe me, it’s not.
When I say “I’m fine”, sometimes it means I don’t want to talk about it. I think we all know the description of “being fine” often means anything but. However, it gets tiring talking about it constantly, so it doesn’t automatically mean you should probe harder. Let me come to you, just make it clear you are there when I’m ready.

The moral of this story:

Yes suffering a brain injury is terrible, and I wouldn’t wish it on anyone. But don’t judge the effects or how the person chooses the deal with their life. It doesn’t have to be the end of the world. As one door closes, another opens, but you don’t have to walk through it if you don’t want to. We all have the right to make decisions about how we live our lives. And whilst others might make other choices, there is no right or wrong as long as we aren’t hurting others.

What positive examples from your life post brain injury could you give? How can we give hope to those who this has only recently happened too?

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Beating my shyness to be sociable again after brain injury

Michelle #jumbledbrain — Mon, 17 Jul 2017 12:46:32 +0000

As a child I was painfully shy. But as a met good friends I knew I didn’t want it to hold me back for the rest of my life. They showed me that good people can appreciate you, despite your flaws. You just have to let them experience who you are. You need to try to be sociable. So although this brain injury has shuffled my deck of cards, I’m trying again.

I built a career on being sociable.

I was never going to be outgoing enough to be a holiday rep for a 18-30 club experience, but I wasn’t bad with people. Having learned the ropes with the toughest audience, the general public, during my 10 years in retail. I went from serving customers and squeaking the total price, to confidently traffic stopping people for a makeover and selling them products they hadn’t ever tried before.

From there I moved into positions where business development was a big part of the role. Engaging with decision makers in businesses, even when they said they didn’t have the time to talk. By not being aggressive, instead sociable and approachable, I was able to win them over. They bought into me.

How my brain injury robbed me of that.

I didn’t know who I was anymore when my brain injury happened. I knew my name and history, but I didn’t recognise my personality. As I regained some insight, I was able to see how odd my behaviour was at times, but couldn’t stop it.

Suddenly there was so much about me I didn’t like. Not being able to trust myself to be “normal”, made me retract from the world. It became lonely, and I found I was assuming the world thought the worst of me.

But my friends proved me wrong and I’m trying again.

I started getting in touch with those old school friends who I hadn’t seen in years. They had already seen me, warts and all, growing up so I didn’t feel I had anything to hide. And again they showed me the same life lessen they taught me all those years ago. They didn’t care about my faults, they were more interested in who I am.

So I’ve put myself back in training. (No I haven’t enrolled on a course, I just have to impress the harshest examiner, me.) Random acts of kindness, win people over the fastest, and often stay with them for a lifetime. Whilst I’m not giving away money to change peoples lives, I am offering my compliments.

I was in a queue (or as my American friends would say, a line) in a coffee shop. The lady ahead of me had incredible nails. Expertly painted bright colours with glitter over the top. These days I don’t do anything with my nails, but I admired how lovingly they were done. Then it occurred to me that as these nails made a statement, she must be proud of them.

So just as her coffee was being served I said, “By the way, I love your nails.” She was a little surprised, but replied with “Oh thanks, they need redoing really, but I do them myself and I just haven’t had time.” As us Brits struggle to take compliments, and feel the need to be very modest about everything, this was a positive response. I’m sure she would have gone away feeling pleased that someone had admired her handy work. (See what I did there?!)

This is just the start.

I know we didn’t get into a deep and meaningful conversation. But I would like to think by me trying to be sociable, I gave her something to smile about. My aim is to prove to myself that strangers don’t notice or care about my brain injury. They care about the impact this person makes on them in that moment in time. So I want to try to make it a positive one wherever I can.

Other articles you may like:

Do you find it hard to be sociable after your brain injury? Or have you got tips on how to overcome it?

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How a brain injury can make you extra sensitive to hurtful comments

Michelle #jumbledbrain — Thu, 18 May 2017 10:54:25 +0000

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.

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 you 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.)

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

We all have the right to have and 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?

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The gamble of socialising after a brain injury

Michelle #jumbledbrain — Thu, 20 Oct 2016 11:40:57 +0000

I used to enjoy socialising with my friends, at work or an evening out. But even now, almost 2 years after my traumatic brain injury, I struggle with groups. There are so many reasons why this is difficult for me. I hate needing to turn down kind offers for events, but I have to.

Socialising in groups means too many conversations to follow

Trying to get used to having a massively shortened attention span, like me, and following what someone is saying is tough. But add in several conversations happening at the same time, and it’s too much. I find I get distracted by hearing a word or two that someone else said. Then I’m trying to workout what they might be talking about. Oh but the conversation I’m having isn’t over. Yes you’ve lost me now, what did you say?

I’m not stupid, I’m just slow

As many of my brains pathways are damaged, thinking and processing takes a lot more effort than before. It takes me time to think about what you said, let alone a reply. I get there, and other than the fact I struggle to find the words I’m looking for, my response is still the same. But when you have met up with friends, and the buzz is flying as this group are excited about socialising, you don’t want to be stuck with me. I suck the energy out of the flow as I slow it down so much. So I can’t blame people when they start up conversations with others, and I’m left like the lemon that I am.

All the concentrating wears me out

I get tired, and although adrenaline might carry me through the event, I pay for it later. The headaches and eye aches are awful. coupled with the cognitive fatigue, it can wipe me out for a week. And I mean I’m struggling to even get out of bed I’m so bad. I can’t string a thought together, not even that I should try taking some more painkillers.

This aftermath is the part that only my partner James sees. If I do decide to go to something, I know he’s thinking of both sides. Yes it’s good it have that social contact, but he knows it’s probably going to cost me more than dinner.

I can cope with a couple at a time so much better. It means there’s just one conversation for me to follow. And I don’t mind if they do most of the talking, in fact it takes the pressure off me. It’s not that I’ve gone off socialising. I just have to weigh up the pluses and minuses of each situation. That’s pretty much the same for everything when you are living with a brain injury, you have to choose your battles.

Another thing to consider when thinking about going to an event is the environment. You can read why in Light and Noise Sensitivity.

Other articles you may like:

Do you find socialising in groups works for you? Please share any good tips.

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Not alone after Brain Injury

Michelle #jumbledbrain — Thu, 29 Sep 2016 13:25:21 +0000

Until you have experienced something it can be difficult to accurately imagine what is like. And so it’s challenging to describe how it feels to suddenly have a brain injury, not least because no two brain injuries are the same. But many survivors express feeling like their world has changed. It can make you feel isolated even when you not alone.

Many, like myself, experience psychological challenges such as depression and anxiety. Partly this is because of chemical imbalances in the brain, partly because of how frustrating and frightening it can be to realise you struggle at things that you didn’t before. Along side this, apathy can be common, and so things that would have lifted your mood before, no longer have the same affect.

The result being the survivor may find that they don’t know what to say, and so choose not to socialise. This is absolutely fine as long as they are happy to be on their own, but aren’t lonely. No on should feel alone.

It can be a fine balance that friends and family of a brain injury survivor can find hard. The individual may not want a lot of fuss as they need peace and quiet, but there could be times they need a listening ear but are being stoic.

There is no easy answer to this, as it’s not “one size fits all”. All I can suggest is don’t assume that the answer today is the same as it was yesterday. Some days are harder than others, or they are dominated by different symptoms and struggles. In time, hopefully, one either finds their symptoms ease, or they develop coping strategies and adapt. In turn that could give rise to new hope and begin to the lift the heavy cloud.

What I’m trying to say is, this is probably one of the biggest life changing experiences someone can go through. Like me, they may not have lost a limb, but they need time to adjust as something profound is missing.

There are so many social groups out there of survivors who will gladly share their experiences to try to help others facing similar challenges. That can be an useful avenue for those who feel no one understands. It can help meeting people who really do to show you’re not alone. Social media such as Facebook, Instagram and Twitter have plenty to choose from. But alongside this it’s still important to have some “real world” contact, and feel like you are still a part of the world. I haven’t yet found a substitute for some human contact. Although this guy does come close…..

My companion, Dexter the Bengal

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My companion, Dexter the Bengal

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If you're a survivor, what do you prefer, virtual or real world? Carers what works for you, or you wish people realised?

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