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ABI week 2016. Chris and Annie. All change.

 

This is a guest post from Chris, a caregiver for his wife of 39 years, Annie. Annie had a Subarachnoid Haemorrhage in 2014. This is his story about finding a new normal after such a devastating event. Thanks to Chris for sharing this with us to help raise awareness.

 

Gone are the days when a visit to my local Pharmacy saw me walk away with a small white bag with Annie and my medication in. When I visit the Pharmacy now it’s generally a large box or two filled not only with Annie’s medication but also various types of much needed equipment and items that have become an every day item.

When I walk through our apartment I am faced with changes to our lifestyle, home and routine. The hall is now a car park or I should say Wheelchair Park, complete with large charger and other accessories. The changes to the bedroom are obvious, Annie’s bed (you hear it before you see it) My single bed. One thing I have always said to Annie is no matter what we will never have single beds, now here we are forced to apart although side by side. Then there is the other equipment, hoist, Annie’s armchair and shower chair. Annie’s armchair lives in our bedroom at night and transfers to the sitting room by day. The bathroom is full of bottles of lotions and potions for beauty, bathing showering, cleansing, moisturising and other things that chivalry prevents me from disclosing. like any other bathroom I hear you say not this one. Then there are the bags, yellow, orange and black and lastly white ones. Then there is the sitting room with one real change and that’s Annie’s pride of place. I remember as a child my fathers chair it had his smell and it had his hand marks on the arms and it sat at the side of the fireplace, when he was home no one dared to sit in it. Annie’s chair as I said moves from bedroom to sitting room and has pride of place, a focal point in the sitting room. Then there is the spare room/second bedroom the bedroom tax room. It’s a store room for the nurses and the carers, it also houses Annie and my wardrobes. Finally the kitchen, the kitchen that we would have shared, the kitchen where Annie would have spent so much time. Its funny it seems that with all the change throughout our little home it’s the kitchen that reduces me to a blubbering wreck, so simple but so poignant. It’s not that the kitchen is where I cradled Annie when she had her SAH but where we would chat, sing, laugh and share life. The kitchen is now my domain, yes I cooked more than in the past, but the kitchen was like out meeting place.

Then there is Annie. These changes are huge and don’t become easy to swallow even two years following her SAH. Annie is quadriplegic and every aspect of her life is supported, however, since her Stoma and Suprapubic Catheter the personal care issues are less stressful for her. Annie tolerates me having to feed her and meal times are quiet. Any distractions can cause Annie to loose concentration and swallowing becomes an issue.

Annie and I have been married for 39 years this year and the things that people in a loving partnership take for granted are lost. So what do I miss? I miss Annie holding my hand, I miss Annie’s cuddles, I miss our closeness and love. There are also things that people don’t understand because again it’s taken for granted that these issues remain constant in our marriage. Conversation and yes arguments are lost in the recesses of Annie’s brain. Annie has lost her ability to initiate, therefore she is unable to start a conversation or an argument in fact Annie can not initiate anything from talking to moving. I miss my friend, lover and Boss.
No one likes change especially a retired Social Worker. Sometimes change is important, lets say “for the better”. As a Social Worker I promoted change, made people change or face at times pretty harsh outcomes. I feel bitter about the forced change that we have witnessed. I resent its power and its ability to mess with Annie’s life and turn my world upside down. Now I must face it and use it to benefit us and not eat us away “Our New Normal” is the tool to make the changes more appealing and give us the encouragement to fight the inevitable changes and use them to our advantage and not get us down.

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ABI week 2016. Heather, a caregivers story

Life is a journey, not a destination – Ralph Waldo Emerson

Today I bring you a brain injury story from a caregivers perspective. Heather cares for her husband who had a motorcycle accident in 2007. Heather talks about how family and relationships can change and fracture but that there is a way to find your new normal as a family unit. I’d like to thank Heather for sharing this on the blog, it’s much appreciated.

In 2006, the morning of 7th June I received a telephone call from the Police to tell me my husband had been taken to the hospital after having a motorbike accident. The female officer appeared sympathetic but fairly positive that my husband had received only ‘minor’ injuries including a broken collarbone. He had been assessed by primary care in accident and emergency and could come home. I arranged child care for my 33 month old daughter and went to the hospital to collect him. The doctors said he was ‘lucky’.

If someone had stopped me at the door and told me that for the next year I would experience the worst year to that point in my life I wouldn’t have believed them – after all it was only a broken collarbone. It wasn’t, of course, I am writing for a Traumatic Brain Injury blog so it can’t be!

I’ll cut a very long and often traumatic story short to tell you where we are today in our journey. My husband experienced a traumatic brain injury, broke his collarbone, broke every single one of his ribs (some multiple), fractured his hip bone, chipped his pelvic bone, fractured two vertebrae, lacerated his side and damaged a kidney (which is now dying). Only the collarbone and laceration were picked up in A&E despite his motorbike helmet being cracked in two. The trauma clinic were thankfully more efficient. My husband’s TBI was diagnosed after his Post Traumatic Stress Disorder (PTSD) had eased; unveiling some behaviour that could not be readily contributed to regular PTSD. It was though, some nine months after his accident. He had received TBI through acceleration-deceleration associated trauma; the force of hitting the van that pulled across his path and caused him to be thrown into the air and career up the tarmac caused his brain to be shaken around forcefully in his head.

Despite all of this we are lucky he survived; he jumped a fraction of a second from his motorbike before impact, we are lucky he was an experienced rider. It is funny how we measure luck; it is usually against the experience of (what has to be conversely) bad luck. What would have been lucky that day was to have left the house 5 minutes later.

It is nearly 10 years since the accident. What a journey! We have a very good neurological unit in Edinburgh and he was under their care for some time – even still if he needs it. The neuro-rehab unit also considers not only the individual but their families too, although it’s limited. This is important because from a carer and mother (of our child) point of view it is not all about how the accident impacted upon my husband. It took a long time for me to appreciate my needs; if you can imagine it was my daughter, my husband, sometimes the cat then me! We all needed to adjust, get to know the husband, friend, lover, partner and father again. We have some lovely friends who have endured us ebbing in and out of their lives, my husband avoids social gatherings at all costs now. Most of those that matter to us understand and some exceptional family members such as my nephew and my dear late Mother. We did employ the services of a childminder for longer than most but it helped with constancy of care; my daughter is amazing at 12 she is empathic, usually understanding (pre-teen style) and has a wicked sense of humour that commands sarcasm to its full (which sometimes escapes her father’s grasp). We as a family have come to understand that we sometimes cannot be that family on the telly or next to us on holiday; especially on short breaks – it’s just me and my daughter as going away for a few days upsets my husband’s routine too much. But that’s okay as we all get a bit of a break to recharge our batteries and we can plan longer breaks together.

Well…. I can plan the longer breaks; it’s one area that my husband finds the most frustrating thing about having a TBI is the impaired organisation and planning, others are rigidity in thinking and implications of decisions – the higher functioning of the brain. Although, there has been an improvement in ten years it is still pretty affected.

This is how we measure luck though – my husband, who has been my ‘other half’ since we were teenagers is still here, he has developed a grounded approach to life and often keeps me grounded too with his alternative viewpoint when I am being all task-focused. He got the opportunity to develop a beautiful relationship with my mother several months before she died – understanding her in ways I didn’t. He has developed a creativity envied by so many in his wood-turning where that attention to detail of his really pays off and he creates the most beautiful wooden work at Tooth Fairy Pots (link blow). My husband also has the challenge of living with three demanding women (I’m including the cat again) and copes better than some men I have known – including those without a TBI.

I have learned to live with the house being untidy, needing tradesmen to do things my hubby once did and listening to myself when I need some ‘me’ time and when we all need ‘we’ time. I haven’t lost sight of everyone’s needs, including my own and this year although I work pretty full-time I also managed to become self-employed to do a bit more of what I enjoy doing. Life is full on but if your foundations are strong then you can build. It has taken ten years, but I guess, we as a family, are just lucky like that.

You can find the amazing woodwork that Heathers husband does by going to Tooth Fairy Pots

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Action for Brain Injury week. 9th-15th May 2016

“Awareness is like the sun. When it shines on things, they are transformed.”

― Thich Nhat Hanh

Today heralds the start of Action for Brain Injury week (ABI week) in the UK. I’m aiming to post a blog a day for the whole week to commemorate it.

The idea of ABI week is to spread awareness with a big focused effort. A lot of the brain injury organisations and charities will be doing something this week, whether it’s looking at one particular aspect of brain injury in depth, getting in local press or just making their presence a little louder on social networks.

I’m not a charity or an organisation so my little contribution will be to push myself by writing or sharing something daily. I will be posting some of my own work but I am also extremely excited to have contributions from care givers of people with brain injuries. People who are strong and brave in their own right and will give the perspective from the other side of brain injury. I’m completely grateful to them for letting me share their stories with you all.

I’ll also be taking you on a little journey into the dark side of my injury and sharing with you some extremely personal and private extracts from my notebooks that I have been writing in since the early days of my accident. I hope they will show you what a brain injury feels like or as close to without actually having one yourself.

I hope you enjoy the week and stay with me through it. I normally only post once a month so please forgive my extra presence on your social media, I do try not to spam but this year I wanted to mark ABI week properly. As usual please comment and most importantly share what you read, it’s the best way of spreading awareness and knowledge.

With all that in mind and this little intro done, tomorrow’s post will be a story from Heather, a care givers perspective.

Thank you for reading and I hope you have an interesting week.

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Unmade like a bed

Whilst thinking about this months post and what to write about I found myself in the midst of a bit of a deep funk (not like Bootsy Collins, the other kind). I was questioning myself and how I approach relationships (or my lack of them). Then out of nowhere articles kept popping up about loneliness and people in my support group began talking about it so it was making itself the very obvious candidate for a blog.

I’ve touched on the subject of loneliness a few times in other blogs but it was something I only ever really glossed over, I think that’s because admitting you’re lonely is hard. It’s another of those things like jealousy that we don’t talk about. There’s no place in this ultra connected society with lots to do for being lonely and if you are, well then there must be something wrong with you. What I’ve found is that we seem to be more lonely now than ever, there are reasons for this such as online connection replacing personal interaction, don’t get me wrong social networks can be a lifeline for me to be around others when I don’t have any energy; they help us connect with people from all around the world and that’s a wonderful thing BUT it’s very easy for it to become a crutch and replace physical connection. I fully admit I often kid myself that I don’t need people around me because I have the Internet. Trust me, being around other people is good for you.

So far, so logical right? Well this is where it gets complicated. Brain injury survivors and their caregivers (and other chronies too I’m sure) are stuck between the devil and the deep blue sea (no idea what that really means, but I like the sound of it). Firstly there’s the distinction between solitude and loneliness. Solitude is good, I choose solitude, it’s a recharging place, a place to be at peace and gather and fill up with good juju. Loneliness is its flip side, the naughty cousin, the place of sighs and sadness and frustration. Brain injury for me is an awkward dance between the two, as a brain injured earthling I need solitude often to help me heal. I can’t cope very well without it and this is how my problem started, it is at times an avoidant behaviour something that keeps me safe because ‘out there’ is mean and nasty. I use solitude like a shield to push away anything that might make me uncomfortable, I’m often telling myself ‘no I can’t do that thing today with that person because it will make me tired and I need my solitude to balance’ sometimes this is true and sometimes it’s the fear talking.

I’ve been quite happy to let the fear disguise itself as meaningful recovery because it’s suited me, it’s stopped me doing anything that ruins my equilibrium. As I have so often discovered throughout my healing, sometimes the equilibrium NEEDS ruining. I need it to be pushed so I can grow. So as you can see I’ve painted myself into a very lonely corner. I fully admit to you here and now I am terribly lonely and terribly frightened to do anything about it. I know I need to shake it up and that’s what I’m shakily walking towards over the coming months. But I’m not ashamed to confess the sadness that overwhelms me as I realise how isolated I am, how the tears fall easily and how unlovable it makes me feel (this I know isn’t a fact, I am lovable but it can FEEL that way after being alone for so long).  I know this a problem of my own making but it is also a feature of brain injury, it is not something that I can just ‘do’ sorry positivity junkies but brain injury life doesn’t always work that way. My brain and therefore my ‘self’ has changed, I became a very different person and finding my way back is rocky and tentative.

I know Mr Braingirl is the rock with the lighthouse to which I anchor and I’m very grateful he is here but he has his own life and I want my own life too. Aside from him and online friends I don’t really see much of anyone on a day to day basis. I crave belonging, I want to feel like part of a group, I miss having people to talk to and feeling connected enough to people to be vulnerable with them and laugh with them. Everything has to be so carefully done, I have to ration my energy but also ensure that the people I choose to spend time with are not energy drains. Authentic, realistic, good and upbeat, I can’t tolerate people who are excessively pessimistic not because I think I’m better than them but my energy just can’t absorb that kind of vibe anymore.  This is another new step for me and one I’m sure will do the inevitable brain injury shuffle, that special backwards/forwards dance that serves to drive you crazy. I hope to continue to have healing solitude but to also begin to mix with others again.

I always think of this quote by Thay whenever anything new has to be assimilated into my life, try it, it’s a great way to be.

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Stuck with thoughts of the buttercups

 

Today was going to be a video day. I was going to talk to you about a different topic but being on enforced bed rest means I’m typing from under the duvet of inpenatrable safety and writing about something else.

I want to talk to you about how selfish I am.

Yes, selfish.

Before my brain injury, I was prone to a bit of navel gazing and lived a lot of time in my head. Overthinking, problem solving, fortune telling and micro managing all from the confines of my noggin was a regular occurrence. I wasn’t one for being emotionally free and open (there’s a whole story of myself about this but that’s for another day).

Post brain injury I have taken that tendency to internalise and turned it into an art form. I am the gold medal winner in the rumination Olympics.  Brain injury has MADE me an introvert, I’d be interested to hear from others who have also experienced this. I used to be fairly socialble and outgoing, I liked being around people and I was usually pretty adept at holding a conversation. Now, I’m quiet, alone and conversation has become a very confusing and tiring team sport.

Intially in those dog days soon after my injury my brain had gotten the message deep down in its primeval level that life was pretty dangerous, so in response to the threat of being alive my brain turned inwards. It blanketed itself in a layer of self absorption to protect itself. Well done brain! It was doing the best thing it could think of to keep the host (me) safe. I had no time for anything except survival. This is why my anxiety became very sensitive and why I got health anxiety and agoraphobia and depression and fatigue. Keep very still Braingirl and nothing will happen. To all intents and purposes this was the absolute best course of action so soon after such a trauma BUT the problem starts when that switch doesn’t dial back down again and stays at 11.

Us brain injury survivors become experts at rumination, shoe gazing, cerebation, contemplation, introspection whatever you want to call it. We are constantly thinking, churning and looking for danger. This does not make for a great social life. I feel like I can’t fully listen when people talk (factor in sensory overwhelm and it’s difficult),my radio is constantly tuned to ME fm. It’s never been more apparent than recently when I’ve needed to be on the ball due to a family tragedy and all my brain can do is shout about how terrible this is for it and how I need to hibernate. Instead of turning me into superbraingirl ready to leap small buildings, it said ‘hey, sod this, let’s get REALLY tired’. Believe me, I’ve done what I can to be of help but I just can’t do stress anymore, my brain does not like it. It’s not something I have any control over, it’s something I’d love to change but I can’t so here we are. Mr braingirl gets it, he knows I’m trying my best but I just feel so selfish and useless, even though it’s not my fault it can still trigger that part of me that wants to do, to be there but can’t.

I’d like to believe as resilience builds, this will lessen. It’s not as bad as it used to be but it’s still a hindrance in my daily life (no day off remember). It doesn’t respect conventions and norms and the polite way to behave, it just does its thing. Quite refreshing in one way to just be the metaphorical equivalent of sitting on someone’s sofa in your pants with your feet on the table, no f***s given. But hard when I want to be human and kind and helpful.

There are times that selfish is good of course, I needed a bit of it in my life. Saying no is a good skill in taking care of yourself, I just wish I could choose when to use it.

At least now my inner absorption is of a slightly more pleasant nature these days, I still have times of thinking everything is screwed and a big swirling vortex is coming to consume us all but I also get days and days of sitting and thinking about how my buttercups are growing or how to kidnap a lamb and keep it without the farmer noticing or whether Groovy Bruce the bunny knows what love is. I think there’ll always be a part of me that sits and broods, it’s in my nature, I’d just like to engage a little more with people. I miss people. The nice ones who are smiley and kind and remind me of summer.

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Pale blinds, drawn all day

This year so far has been a bit of a charging Rhino. I haven’t seemed to be able to catch my breath and there have been times where I’m not quite sure how I got away with not burning myself out. I’ve been busy but careful and I suppose that’s a huge difference from this time last year. I’ve got things done when I’ve needed to but always had one eye on my rest breaks and when to say no.

A quick glance at what has happened so far from December to now is quite dizzying, I’ve been published, I’ve maintained a sucessful online support group, I’ve got my Herbalism certificate, I’ve started my Psychology degree (and even handed in my first essay yesterday!), I did a talk on brain injury for the health trust, I’m in the process of taking part in another book and I’m doing a bit more gardening at the allotment. Along with all this I’m still attending all my appointments and I finally managed to cook a meal for myself and Mr Braingirl (I’ve done it a few times now). This was a huge deal as sequencing and initiation are real problems for me. I’ve also aged another year but we won’t talk about that. Phew! When I look at this list it seems busy and frantic but it’s always done in a measured, planned out, ‘slowly but surely’ way. It’s meant having to say no to some fun invites and also allow myself to have days where I sloth about in bed.

But the point of this post isn’t to say ‘look what I’ve done, now give me a badge’ it’s to round up the past few months so I can see that the times I’m bemoaning being tired and useless that I’m actually far from it.

I also want to talk about yet another facet of brain injury that I wasn’t told about and that is sensory issues. Now me being completely bull headed as usual didn’t really factor in sensory issues as a problem until about 2 years post injury when I finally started to take it seriously. Again, it was self researched and I found it to be a huge player in the fatigue lottery. At first sensory overwhelm or overload showed itself as an annoyance that the tv seemed too loud even though it was a normal volume for everyone else. Then things like plates being stacked in the kitchen or cutlery being rummaged in made my eardrums throb and there were even certain sounds that made me cry ( one time in a supermarket someone suddenly started drilling something and I nearly went through the roof). Also I was walking around everywhere even on overcast days squinting like a mole.

After a bit of questioning and reading I figured out my eyes and ears had been made super powered by the brain injury and whilst on the surface that may seem pretty cool it’s an overwhelming, scary, tiring and anxiety inducing experience. The increase in light and sound is fatiguing for the brain and hence why busy places are a real test of endurance, not only do I have to process the sensory information but I have to do it multiple times with all the conversations going on around me.

In the very early days of my injury it also affected my taste, I used to taste metal all the time and it would give me wave after wave of panic as I was convinced my brain was bleeding again and it was blood I could taste pouring down my throat. If I’d have known about the sensory changes I’d have been a little more laid back about it (I think). Luckily that’s righted itself now.

The past year and a half have been spent living in a very darkened and quiet bedroom, (the blackout blind is my friend) listening to gentle music, wearing sunglasses everywhere (even indoors like some sort of diva) sticking earplugs in at cafés and generally turning into a vampire.

Whilst on the whole I’ve not really considered how this is perceived by others because I don’t really care what people think, there have been a few times that I’ve been caught out by what people have said. Being TOLD by others I’m wearing sunglasses at a meal because I’ve not woken up yet is a bit annoying, being asked why I’ve always got earphones in is insensitive and feeling like I have to apologise for putting sunglasses on when I’m sat in a meeting indoors and the sun is MELTING MY EYEBALLS through the blinds is something I got tired of. So I wanted to find a solution and one day I had my eureka moment. Other people may say ‘well duh yeah Captain Obvious!’ but for me it was genius. I wanted to try photochromic glasses, you know the ones that change with the light. My eyesight is perfect despite the sensitivity so I wondered if they could be got non prescription. A visit to my optician later and I have my photochromic glasses!

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They are much smaller and more discreet than my sunglasses, they adjust to the light conditions and are perfect for indoors, driving and pottering around even on seemingly overcast days where without glasses I’m still suffering. Fret not, the sunglasses are not forgotten, they’re still needed on sunny days, the ones where the actual sun comes out and shines but for everything inbetween these are perfect.

I’d love it if these became more common and were recommended as a solution by OT’s or doctors. They were quite an expense so for someone on benefits such as myself I got a bit of a sweat on paying for them, but they will be worn everyday and if they help me feel less tired, less anxious and more engaged with the world they’re priceless.