Believe In Yourself & The Rest Will Follow…

 

Each month we face challenges, some more than others and at this moment for me it’s a very challenging time as I’m faced with a lot of first anniversaries’. The first time I left hospital, my first weekend at home and my first outing that wasn’t accompanied by an occupational health therapist are to name but a few.

November highlights all these for me, it was also was the last real conversation I had with my Bampy..Christmas is only around the corner, and I’m very aware this year is going to be the first year where everything is different. Although I still have hard days and always will, I compare myself to who I was this time last year and I look at how far I’ve come. I am stronger than I was thanks to finally receiving the help I needed.

Survivors

I’ve come across many survivors who have been without help for years not understanding what’s been happening to them. I know in the six months that I faced on my own with no help life was so much harder and I lost a lot in the process.

I created this blog to help others, not just families’ or individuals’ suffering from TBI, ABI or strokes, but for people to actually understand more about the effects on everyday life and how debilitating it can be. If one person can read this and it can help them in some way, I know all the hardship, tears and heartache I’ve felt has been worth it.

Did you know in 100,000 people, 300 of them will suffer a brain injury of some sort? Yet we are not prepared enough with the knowledge of how to deal with the impact it can have on an individual and their families’.

You often find that when you’ve suffered a brain injury you are left on your own to find out about “this new life.” There isn’t a help book to tell you how to adjust into your new normal, which is very hard on the individual and their family members. Everything you once were or what  you used to be able to do is so much harder than before. This is the exact reason why I want to try and help and find a way to change that big step from hospital to home and help make it an easier transition for survivors.

With a brain injury the smallest day-to-day activity that I used to take for granted, like getting out of bed, has become a massive achievement for me, even being able to get dressed and leave the house, especially if my fatigue is bad it’s huge .

These tiny little normal everyday life events have changed for us as TBI and ABI survivors, these are the things that become daily goals. Managing a full day in hospital is a huge step for me, the team that support me, understand that if I can’t cope with my surroundings or my fatigue I’m no use to anyone. If I’m able to cope with a full day this is where I can give myself a high five because that’s an achievement.

So if you manage a day where you’ve been able to get dressed without getting frustrated, not had a panic attack because you can’t handle the fact your transport to hospital is late you’ve achieved something that is important and difficult to us now.

Unless you have been through this, it is difficult for you to truly understand, my family are still trying to adjust to me and I think that’s why I have found comfort in having my new friends from Ash Day hospital or Headway, this has been a massive help to me. I honestly felt like people made me feel as if I was making this up, which is why I find it difficult and emotional when I see or read my medical notes, I’m confronted with what actually happen. I’m not a hypochondriac, I may have studied drama but I honestly wouldn’t wish this on my worst enemy.

Judgement

I’ve been questioned a lot in the writing of my blogs, whether it’s myself that write these words or some even say “I’ve copied and pasted” from other sites, this I find hurtful to say the least. I think that when you write about your feelings and the situations that I’ve been confronted with over this past year or so I’m going to have a lot to talk about. Even when I was in my hospital bed learning how to talk was I questioned if my “stammer” was put on. Well… if that was the case someone please give me an Oscar! I’ve differently missed my calling in life if that was the truth. I do apologise to my readers, as I know these blogs do end up to be rather lengthy but once I start relaying my feelings I can’t stop when it’s so close to my heart.

Every day in hospital, I had three main visitors that were there throughout my time. These were my rock. I never meant to take them for granted, I think naturally you do assume that they will help you with anything  with no questions asked. I know if it was my loved ones i’d bend over backwards to make them feel better. I never meant to expect from them or assume that i was asking too much, i was just a girl unaware of how poorly i was, wanting to be who i once was.

My Bampy, my amazing Bampy, the thought of him fills my heart with such warmth. As soon as I landed from Ireland into the Heath he was  there, whether it was to stroke my forehead to sleep like I was that little girl again or to hold my hand.  He would often tell my mum stories about how people have woken up from comas being able to talk French; he would ask if that would be me. Or whether I’d all of a sudden be able to have a voice like Maria Carey. I wish he was here to see that I might not be able to speak French or have that amazing voice but apparently I’m able to write rather well to make others question my ability. I know he would be proud and he would never question it!! He would give me his famous look with a twinkle in his eye and a cheeky smile.

Understanding

I only recently found out the full extent to my injury, I knew the basics, I knew the reasons why I was in the position I’m in but I didn’t fully understand. To my knowledge at the time I had a bleed on my brain with a lot of bruising due to swelling. When I was told this, I want to say I just accepted it but I think that’s a different story I accepted the situation of what had happened. Only until I attended this new therapy at hospital was I to really understand that I had actually sustained a number of bleeds and that when I made jokes to my family “oh how I nearly died” that it actually sunk in just how lucky I am to be here.

Hospital

At Ash day hospital, this new therapy I’ve started is called “Understanding Brain Injury.” it’s based over 12 weeks, showing how each part of your brain works. Understanding your injury individually and the difficulties’ one can face, but also being able to speak openly to others and how they manage their fatigue or memory problems can help you as well. Everyone’s injuries are not the same but you may find you have similar defects, whether it’s from a TBI or ABI. Each part of your brain either your: – frontal lobe, parietal lobe, temporal lobe, occipital lobe and cerebellum they have an effect on your body. For example I lost my speech as I had a bleed on my “temporal lobe” which controls your speech and language. I’ve noticed as time goes on I’m relearning words that I knew before, I still suffer with what we call “brain fog” when I can picture a word in my head but I physically struggle to get the words out, but forgetting this time last year I couldn’t even say one sentence. This is all because my brain is learning a new route, it’s basically taken a detour.

You notice along your journey that we all suffer differently, but it becomes clear that each person may have similar experiences. I’ve found that a lot of us experience a loss in taste buds, so I can no longer taste any food, lately this has been challenging for me. Not only have I lost my taste and smell but also due to the damage I no longer feel the urge that I am hungry, so my brain signals are damaged to tell me to eat. I tried the new costa Christmas hot orange chocolate last week, I said to my mum “there isn’t any orange in this at all?” she replied after tasting “yes there is.” After a while I’ve forgotten that I can’t taste so when that showed me “no you actually can’t” it confirms you haven’t made it up, it does upset me that I even have to question why am I doubting myself. Imagine never being able to taste your food? I don’t feel any enjoyment out of eating and this month so far has been the hardest of all. It’s beginning to take a toll on my body and my healing, but also it doesn’t help my fatigue. I’m trying my hardest to find some inner strength to find away around this and hopefully in time i will.

It’s the little things that helps

The majority of people I’ve spoken to who have suffered with brain injuries have struggled with understanding what’s available to them to make life that little bit easier. I can’t drive due to my injury and until I’m seizure free that won’t change. It’s a massive strain on my independence; I need help getting places, as I can’t do anything alone anymore. I also need to take into consideration of my legs and my fatigue.  For those that can and are able to get out but still are not allowed to drive you can apply for (if living in Wales) a concessionary travel pass which allows you to access all Welsh bus travel, you just need your doctor to help fill in a form. You can also obtain a Disabled Railcard, which if you have a blue badge or your higher rate PIP you can apply for, this is eligible for you and your career. Everyone who has suffered an injury and needs assistance can apply for PIP. You can also apply for CEA, which I was told about recently, if you have a higher rate PIP for you and your career you could enjoy a cinema date. All these little things can help you feel more like your old self to help give you back some of the confidence you lost. It’s just unfortunate that we are not told about any extra help we all have to find out ourselves. These little things that used to make you smile or something that reminds you of who you were is still out there.

Accepting and Adjusting

I say throughout my blogs it’s about accepting and adjusting, it’s what I’m told in hospital. It takes time. Brain injures take time. You can’t wave a magic wand. Trust me I tried, I really tried to do everything I used to with some exceptions.

Sometimes I feel like today’s the day I’ve accepted where nothing else can knock me down ‘the world is my oyster.’ Then others days I’m reminded very much that if it wasn’t for my mum helping me with my medication, making sure I’ve actually eaten, if I’m able to leave my house, helping with daily tasks that I used to have complete control over, I don’t actually know how I’d manage if it wasn’t for her.

It really is time, not one day is the same as another. You feel like you can push yourself a little harder but it can only set you back for another couple of days. There is no happy medium, its little and often and to listen to how your body is. I know i don’t always follow this rule and regularly get told off by my therapists’ as my peaks and troughs are one extreme to the other, but i’m still learning as well. I’m trying and that’s the main thing, it’s not always easy to stay positive but i have to remember that those 4 steps forward and 5 back isn’t the starting line i was originally on.

 

MY Best Friend

I know I’m biased when it comes to talking about my mother , but seeing as she’s not only my mother but also my best friend. The strength and termination she has is unbelievable. I’ve always had a very special relationship with her, no different to any mother and daughter relationships. Only girls will understand what that bond is like. I’m one of four and I am the only girl, apparently I’ve been told it’s harder raising girls than it is boys. Not too sure what she means by that?!

Throughout these last 14 months; my whole time has never truly been about how hard my life is. I’ve also always worried about how hard it has been on my mum and what she has had to deal with. Granted, I know I haven’t been easy, she has had full force of my mood swings, my tears and my heartache over this rain cloud. But deep down I’ve had to watch her watch her little girl fall apart with no magic tape to fix the damage, look after her family and watch her best friend her dad- my Bampy, struggle with his stroke.

Within four months she had her whole world turned upside down and around again.

30th November marks the date we started our prays for our hero, there will never come a time when it gets easier to mend a broken heart. All I can ever do is say thank you for being my rock, for helping me get through what has been the toughest battle so far and I’m sorry for causing you heartache along the way.

I thank you for taking my fears away when I was scared with no voice, for teaching me to be strong, for loving me and the new me and most importantly never giving up on me when I wasn’t strong enough to fight.

I want my mum to understand that i’m forever grateful for all you’ve done for me. For being my carer and always coming back after I’ve had my lows. You are an inspiration to me and i love you with all my heart. Thank you 

Brain injury awareness

All i ask, is to take a little time in helping understand brain injury awareness. my shell is the same but don’t judge me on how i look, i’m fighting on the inside. Not all disabilities are visible.

Please share

lots of love 

xxx

 

 

Thats why they called it the present

To quote Bill Keane “Yesterday’s the past, Tomorrows the future, but today is a gift. That’s why it’s called the present.”

This year I’ve learnt most of all is to be thankful. Thankful for the family I have, for the friends that stand by me and thankful for being given this opportunity to help others.

I’m learning that looking back into my past will never take me forward.

We all have moments where we look back with fond memories and we talk about them with such ease and love, but we also forget there’s a reason why they haven’t made our future. This next chapter of my life is seeing a new change, some may say a new start. I’ve had to close some doors, which I didn’t want too, but I’m learning that as one door closes another opens. It may take time to understand which door will open for me but allowing yourself to take that chance and experience something new is the beauty of moving forward.

 

New Chapter

As this new chapter begins; I have to take a deep breath, take one step forward and start to think about what my future holds. I’ve never been good with change, I like my own comforts, but when you’re dealing with a brain injury everything you know and love or who you once were is never the same again. Imagine trying to catch water with your bare hands, as it slips through your fingers you’re soon left with nothing, everything I knew changed, completely out of my control. I’ve been confronted face on with the reality that I will never return to who I once was and the life I once had. I honestly believed that I had been through the tough times and now on my path to this new beginning I’m still faced with huge challenges.

I understood that I would have to accept this “new me” but this month has seen me say goodbye to the last essence of Zalehka, the girl I used to know. Silly really, I knew that I had to adjust and accept certain changes especially with my health, I am adjusting, learning how to adapt my new routine. Leaving my home finally, which I had built over the last 8years was one chapter or in my eyes one box, another was having my divorce papers through; unfortunately the same week of my anniversary of the accident. I tried to pretend and push it to one side as if it wasn’t happening but I soon realised that it wasn’t just me saying goodbye to that old life. So within the same week as moving out was the same week I signed the papers. This girl I built my life around and the one I was so desperate to try and be again no longer exists. I think I only have a few strings left to her, and with that in mind I’m very aware those strings are losing their strength.

 

Present

Looking back constantly I realise I’m missing out on how beautiful the present day is. We will never know what’s around the corner and never know what fate may have in store but what we do know is that every day is a blessing and we should tackle each day as if it the last and live it to the full, never have regrets. Every moment is a lesson to be learnt and we should be so grateful for what we have not what we don’t have.

Yes I’m still struggling, battling through this on my own and facing people’s judgements are not easy but honestly I do believe that one day everything will make sense to me. I’ll find someone that will put up with my “new me”, ” but I’ve realised that until I know who I am how can I expect someone else too. I’ll be able to drive again when I’m seizure free and I’ll be able to work one day and trust me when those milestones are met then wow watch out because the old Zalehka, the shell that still looks the same will come back a better version. I’ve battled the odds and I’m proud of that.

 

Strength

I’m proud that I’m still battling through; I get told about the strength that I must have. It’s funny because I think its called survival mode. There isn’t an option to fail, as if that were the case I wouldn’t be talking or walking. There are just times where you question just how much more can you take? There’s not a day where I am not in pain, imagine having a migraine every day? How do you think you would cope? What kind of a life would I have if I sat at home all day feeling sorry for myself? Granted I do have days where I can’t move because of the pain or  my fatigue is so bad i can barely function but that’s ok I’m allowed that, but don’t judge me because you’ve seen a nice photo on Instagram or because I may have attended a party with my walking stick to help me walk. You haven’t seen the build up to that night. The whole week not being able to do my rehab because I’ve saved every little bit of energy to get me through one night or one meal to try and feel normal again. It’s amazing by doing those little things people can make a judgement and assume that I’ve magically removed all the scar tissue and the permeant damaged caused. I think what people need to really understand most of all is brain injuries DO NOT magically disappears. There is no cure. There’s therapy to help you with certain areas that can be supported by therapy or medication, but it’s not a broken bone that fixes after a 6-week stint. It’s a life time adjustment and all anyone needs is support and understanding. It takes just 5 minutes if that to look it up, I’m sure everyone spends far more time on social media, and that’s ok it’s just the classic saying until you walk in someone else’s shoes you can’t judge or presume something different.

I am a fighter and I’m a hard worker. I would do anything I can to make something happen. Which is why I kick myself daily as I’ve had no control over certain situations. All I ask or all anyone I know who is suffering asks is just be thankful and happy for an individual actually trying to have some normality to his or her life. A smile goes a long way.

 

Big Brother of mine

This month I got to be a proud sister. I got to watch my first friend, my best friend, my forever friend, my big brother marry his soul mate. With tears in my eyes, front row seat; I watch him say his vows and the smile on his face has shown me that true love really does exist. It sounds odd saying this but over the years I’ve watched my brother grow and become this unbelievable kind, caring, strong man. I’m so proud to be his sister.

Growing up my brother and I were inseparable, there’s only 14 months between us and we were more like twins than the age gap we had. He being the protective older brother, watched out for me and me being the bossy little sister would make sure every time I did something he did it too; even down to asking my Bampy for biscuits I made sure I got one for him too.( my Bampy used to love telling me this story!) I choose the friends we played with on holidays and being the weaker of the two, I knew I could get my own way or win a fight by pulling on his ears. He hated me watching Grease the musical so much so he would put his fingers in his ears, and I hated how he and my older cousins would gang up on me being the youngest. I cannot describe just how proud of him I am, the achievements he has gained are amazing. He’s an unbelievably talented golfer playing off +3. Winning Champions of Champions 2016, and also winning for the third year running Glamorganshire Golf Club champion. He’s a perfectionist when it comes to his job and he does it with precision, making I and everyone else watch him in awe at the skill he is dedicated too. I don’t tell him enough just how lucky I am to have him in my life. His wedding was a massive milestone for me, I wanted to show him just how thankful I was for everything he’s ever done for me.

Our Bampy was our everything, he was like our god. The way we loved him and how much respect we had for him I can’t even put into words. He’s the only man in the 10 grandchildren he had that loved us unconditionally from the day we were born to the final goodbye, when we all held his hands. This was the first family event where he wasn’t going to be with us celebrating. I know in his own way he was with us, but I wanted to give my big brother something that was meaningful to him from me.

I made my brother solid sliver cufflinks with our Bampy’s finger prints on with the words engraved “so proud” not just because I am “so proud” of him but because seeing how my Bampy kept every newspaper he’s been in just sums up just the achievements he has gained and how much our Bampy loved us. That way he will always be with my brother in any special occasion he has.

His wedding was such a magical day, it amazing how time can change everything. Although this month has challenged me in many other ways I’m still very aware of my injury but this day got to see a new side of me. I managed to make the whole day without sleeping so made sure I didn’t miss a moment of their day. I definitely paid the price for it the following couple of days but it was so worth it just being able to be part of it makes me feels so lucky.

When I think back to this time last year when I was in Rookwood hospital, its actually funny that the same date he got married he was by my beside. I look at the achievements I have gained, I can’t help but smile, I got to spend the day with my brother and new wife, best friends from school and my whole family some, who flew over from Australia what more could a girl ask for.

 

Brainy friends

I mention before how amazing Headway has been for me adjusting to life with my TBI. Not only helping myself but helping family members and carers with the adjustments that other individuals face. Alongside my Headway group sessions, a friend and a member of our group “Jan spike the trike” set up another group called “Brainy friends.” She felt that along with our sessions there was room to add an additional group, where we meet monthly at different locations and socialise with our TBI friends.

Jan and her husband Mark, go out of their way to think of different places each month involving everyone that is a part of headway groups and creating a happy environment for us. It’s a great chance to socialise away from headway, enjoy each other’s company and no doubt listen to Marks’ quiz to challenge us or be in for a chance to win a prize. Have to say I’ve never actually won it’s clearly a fix… all jokes aside, because of this and how thoughtful they are in helping others. Jan is now up for an award in December put forward via Headway the “Alex Richardson Achiever of the year” for her outstanding contribution that she has made towards Headway and Fellow TBI survivors.

We are all routing for Jan to win and because we are all so proud of what she has achieved, myself and 9 other members from Headway are all making the bus trip up to London to “The Dorchester Hotel” on the 16th December. We will all be on our best behaviour with our flags in tow, to show her just how thankful we are for all her efforts not just for ourselves but other members of our group. We really appreciate everything you do and we wouldn’t have you and “Spike” any other way. Good Luck and can’t wait for December!!

Some of the photos above are from “Brainy Friends” day out and Pedal power with Headway in Pontcanna. If any one would be interested in coming along to the headway session please please phone Headway it the best decision i ever made. (029 20577707)

 

lots of love

xx

 

Reflections

I’ve been overwhelmed with the response I’ve received from my first post, the encouragement and support has been out of this world. Just to know that already I have helped others in some small way is making all of this worthwhile. My reason in creating this blog all along was to raise more awareness about brain injuries and the effect they have on everyday life, mostly because the experience I’ve had on my road to recovery isn’t one that I would want any other TBI survivors to have. It’s challenging enough going through a life changing experience so the more support you can have the easier your recovery can be.

 

Emotions

I’ve woken up today with a reminder on time-hop, one year ago it was the first couple of days I was awake after the accident, for some reason today feels more emotional than Monday (19th September) , maybe because I will never know exactly what happened that day. I have memories of today, and I think I feel more emotional again knowing that my husband was the only one going through this on his own with no support at that time until my mum arrived. It’s frustrating knowing that my injury changed me as a person and that reflected in the breakdown of my marriage. It’s emotional knowing that I’ll never be able to talk or share what little memories I have about my time in Ireland, I never thought I’d actually say this but I was in such a bubble and it took me so long to understand what happened to me that I don’t think I really appreciated what my Husband, my Mum and my friends did for me while I was there. It’s amazing how I’ve been so consumed in trying to find me or understand what’s been happening to my head, that I now know I didn’t have a chance with anything else.  I know today I’m a completely different person to who I was 4 months ago let alone a year, I’ll only get better and stronger with time. I just wish the help I’m receiving now could have been what I was discharged with and then hopefully I could have been in an even better place again and maybe I wouldn’t have lost a lot in the process.

This is my main aim of this blog; I don’t want anyone to be discharged from hospital with the lack of emotional and mental support around him or her as I feel I did. I was lucky I had family and friends around me, but after spending the amount of time I did in hospital, myself and friends from the ward would joke about a get out plan- there’s nothing like the comfort of your own bed or even a peaceful nights sleep which i’m still missing.

I was in a fantastic hospital called Rookwood and honestly they helped with all my rehabilitation I needed, but I went from having 2-4 hours of rehab a day – 5 days a week to come home to this ‘new me’ and have nothing. Awful as it sounds when you’re in hospital everyone makes an effort to come and see you but when you get home people believe that you’re better because you’re no longer in a hospital bed, and everyone still works and have busy lives. I could no longer drive, I was on my own in comparison to 24 hour a day care in hospital and scared about my new environment, going home isn’t meant to be a scary environment. When you’re standing in your own skin and you don’t recognise who this girl is it’s the worst feeling in the world, especially trying to explain that to others that don’t and can’t understand what you’re going through.

It’s been an emotional couple of weeks in the lead up to the “one year” mark. Fellow ABI or TBI survivors will completely understand what an achievement it is to reach that point, or every anniversary for that matter. It’s very easy for an outsider looking in to tell me to “pull myself together” – “be more positive” or even “it’s done now move on.” if it was that simple to do these things, don’t you think I would have done them already?

It’s very frustrating when people make these remarks to you, this is not a life I would have chosen. That is the difference, I think people assume I enjoy staying at home or make my life revolve around my new timetable. I would love nothing more than to get in my car and pop to the shop,  go to work, or even go to the the gym but I can barely open a bottle of water, so imagine little old me trying to work out! Don’t get me wrong I was so impressed with myself in physio two weeks ago that I actually got to use the treadmill, it was only for 5 minutes at a speed of 2.5 but that’s a huge improvement for me, so high fives all round for Zally.

 

UNDERSTANDING

I have to manage myself to understand and be aware that my battery life is half the amount of your battery life. The mental and physical fatigue I feel is nothing compared to normal fatigue. I still find it amazing how in rehab; after a half an hour session they manage to pin point that particular part of my brain that’s struggling and I’m exhausted. I never go through a day without a sleep to reboot my battery, sleep is the best way to repair your brain or in my case my little pea brain. Don’t get me wrong in my first year I was still trying to keep up with my usual 100 miles an hour Zalehka that I used to know, the difference is I push myself too far and it can take me up to two weeks to get over one event. I’ve learnt this the hard way. I think we are all the same especially girls and get major ‘fear of missing out’ but I had to realise quickly that I was causing myself more harm in the long run by having these major peaks and troughs.

It was causing me anxiety and I’m not ashamed to say it but even pushing me further into depression because I didn’t want to miss out on special events and being with my friends. I had to turn down a very close friend’s hen party purely for the fact I don’t have the strength to stand on my own two feet for any amount of time. I had been to a wedding a couple of weeks prior to this event, I’m lucky I have the friends I do, but they had to force me to go to bed half way through the big day because they could see my mood changing, my speech getting worse and I was snapping at my closet and dearest friends because I didn’t want to admit I was very fatigued. Waking up a couple of hours later and realising I had missed out on their first dance and seeing my friends now on the somewhat tipsy train made me angry, more so at myself for putting myself in that situation. It upset me that my injury had shown me full on that I can’t be the girl I was, this was my wake up call. I also realised it wasn’t fair on my friends that they are not my carers, so why was I getting upset that they were enjoying themselves and I on the other hand was suffering because I was pushing myself too hard. I had to be honest with myself, honesty, well it can be brutal I could no longer keep up. This wedding had come at a time where my own little world was closing in on me. In my last blog I mentioned how I’m my own worst enemy when it comes to self-destructing, I think in my life prior to the accident I was very much a bury my head in the sand kind of girl and I had a wake up call that I could no longer pretend this wasn’t happening to me. I had literally hit rock bottom. I’m not ashamed to say this because people don’t talk about it enough; depression is a hidden illness and is a killer. People don’t want to talk about the truth; people are too scared to actually ask how you are because people don’t want an honest answer. I was at my lowest and if it was easy to not feel that pain then I would have taken that option, but the two people that saved me are the two people that are still and always have been by my side.

The Fight

I suffer with PDST, can you blame me? I’ve always been curious as to what happened. I would ask repeatedly to my husband how did it happen? What was I like? It’s very hard understanding that something so simple as going to walk down a flight a stairs can change you. My husband didn’t see the accident, he just found me and I can’t even begin to imagine what he went through, what my family went through. Hearing that my little brother broke his heart by just simply reading my last blog makes me realise this isn’t just my life it’s effected, it’s my whole family as well and it’s taken me a year to understand this and to try and accept it, that’s the scariest part.

I have never once said why me? Why is this happening? What did I do so wrong for all of this, because I do believe that your life is written out for you and whatever is meant to be will be? I just don’t know what the answer is yet . I’ve mentioned a few times that ‘I never asked for this.’ I worked hard, I loved my job, I had everything I ever could have wished for; my dream car, my house, my dog, my husband, my family, my extended family, my friends, and yet that day for some reason I was going to be taught a lesson.

I had a guardian angel watch over me when I had my accident. But the question that I do still keep asking is; why did it take so long for me to get the help I needed? Why were my family members expected to pick up the pieces when they weren’t fully aware of what happens to an individual after a traumatic brain injury? Until you spend a day with me will you fully see how I struggle with day to day tasks, and how for example today is a bad day for me. Today is a day where I don’t want to leave my house because I’m so fatigued my legs are like dead weights.

But this will be my soul aim in trying to help others, so that they don’t have to experience that first year in adjusting and accepting as badly as I did.

The only reason I came to terms with this in the last 8 weeks was purely for the fact that if I didn’t face reality I wouldn’t have made that first year milestone. I know there have been many times for fellow TBI survivors’, where the give up feels easier than the battle to keep fighting. It is a constant battle and it isn’t easy, but somewhere within you strength is the only positive that will keep you striving for your goals. Those goals are what you need to keep working towards, because the view at the top is the best view you will ever have. I know I’m still climbing those stairs and this week I’ve had a knock back but I’m going to get back up and still keep fighting as i can’t wait to see my view from the top! As for now it’s one day one step at a time.

XXX

 

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This is the new me..

This has taken a lot of courage to write this, but I’ve decided the journey that I have been through this year and the road that I have been forced to follow has taught my family and I some lessons along the way that I need to share.

There is not a lot of knowledge out there surrounding brain injuries, and the effect on your day to day life, nor is there the right support unless you go looking for it, as I had to do.

If I can spread more awareness of brain injuries and use the experiences that I’ve been faced with to try and help others, especially people going through the same challenges as myself then it will help to make this a worthwhile journey.

I count myself lucky that I’ve been given this second chance in life. It’s a miracle with the injury I faced that I’m sat here writing this to you, but I have to say just because I look exactly the same as I did pre fall doesn’t mean I am the same person.

My body doesn’t match my head. I stare in the mirror and the same person staring back isn’t the girl I used to know.

 

The beginning

A year ago today, September 19th, my life as I knew it changed forever. I was in Dublin, Ireland on what was meant to be a romantic weekend away; instead, I was in ICU fighting for my life, unaware of my accident and the trauma that had occurred I had sustained a fractured skull and a bleed on the brain.

I have no memory of the accident; I feel I’ve made a picture story in my head from what others have told me. What I do remember, is having breakfast with my husband and not feeling 100% so made my way to the toilet and towards some stairs that couldn’t have been more than 100yards, if that, from our table.

The next moment I’m waking up 3 days later in HDU in what can only be described as an out-of-body experience, having nurses and doctors surrounding my bed. At this moment I was unaware of my accident, I was unaware of the accident for many weeks. I just knew my loved ones surrounded me and it was only until I was handed a white board, to be told I couldn’t talk. I can still hear the words of my mum crying, “I can’t understand what you’re saying.”

Imagine being 27/28 years old and trying to relearn everything you would have as 1+ year old. I couldn’t even remember how to spell my name or what street I lived in. I had to learn to talk, walk, read, write, you name it I had to re learn it.

I can honestly say looking back to where I was a year ago, to where I am today WOW and I mean wow it’s an amazing achievement and every day is a massive milestone for me. However, just because those massive steps have been taken and I’m no longer an inpatient, I am still an outpatient who still has several hours a week of intense rehab to get me to where I was before pre fall.

 

I get judged every day for how I look, you can see from the before and after photos I look no different. I didn’t fall and break my nose, my leg or have scars you can physically see, I’ve caused damage to my frontal lobe and temporal lobe, a part of me that you will never see.

I’m not saying that’s a bad thing that you can’t see my injury, all I am saying it’s difficult for people to comprehend just how debilitating a brain injury can be. I’ve been told i’ll never come off medication.  It takes two years for your brain to recover from the brain damage that was caused by the accident. Basically my brain no longer uses the m4, I now use every A road to get me to my main goal and that causes huge physical fatigue it’s exhausting. Every day I have to get up and I tackle the day because it’s only myself fighting this fight and I will get there, it just takes time, they say time is the healer in all aspects.

Grief

I’m still grieving the girl who I was for the last 27 years and trying my hardest to accept the new girl who is one year old today. Only those close to me will see my daily struggles and I’m so thankful for those who stand by me and help me through the bad times, they also give me the best encouragement to keep striving towards my goals.

I honestly believe everyone has a different outlook on life, and if you know me you know I will do anything I can to achieve or get to where I want to be. There is a difference when you’re telling someone who is fighting daily with coming to terms with an injury that has taken over his or her life to be positive.

I have lost my confidence and parts of my personality have completely changed, but it’s all about learning how to adapt. People’s judgements have been the worst; I’ve been in countless number of coffee shops, restaurants’ or even cinemas where I’ve been mimicked by how I now talk (I have a stammer). Judged because I use a walking stick (and I have to say I have the best pimped out walking stick going.) Or even parking in a disabled spot and having people hurl abuse through the window at me ‘She shouldn’t be here – she doesn’t look disabled.’ Having a hidden disability can be very frustrating. Why? I ask myself this every day, because on the outside I paint this picture of a girl who used to be here, I dress well and make an effort with makeup so to everyone else “I look amazing.” The words I dread to hear, purely because the outside doesn’t match this inside, if I could walk around with a plaster cast on my head do you think you would judge me differently? This is soul destroying. We are now living in a society where it seems acceptable for people to make remarks and judge others before understanding the complete story. Granted we’ve all laughed at someone walking out of a toilet with tissue paper stuck to the bottom of their shoes, but when this comes to people’s health and wellbeing – this isn’t acceptable.

 

When I was discharged from hospital in the space of three months, I was mourning someone I once was, the life I lived, my marriage breaking down and the loss of my Bampy. My Bampy- anyone who does know me, knows that he was the main man in my life. Two weeks after I was discharged from hospital, he had a stroke affecting the same side of his brain as my injury. In my own little world, I thought me and him would battle through this together. I joked with him at having speech therapy together and even brought us a puppy. I blamed myself massively for his stroke. Law of attraction – you put it out there, it will come back to you, when I had my injury he said “it should have been him.” I haven’t come to terms with him not being here, I’m still waiting for him to come home. In my own way everything had a box. My injury, my Bampy and my marriage. I think it’s fair to say that coping with one of those life altering events would be difficult for anyone, I had to deal with all of it, all at once. It’s been the toughest battle I will ever face.

 

Acceptance

Acceptance is one of the hardest parts of my recovery. If someone could have told me leaving hospital and the transition into what would be my ‘new normal’ would be harder than the actual hospitalization and the rehab I had in those months I am not sure I would have believed them.

I’d like to think I could have coped better over the year; I was so desperate to try to be who I once was, having my hair done, and buying endless amounts of mac lipsticks. Trying to keep up with my social groups I was ignoring the big elephant in the room, the one trying to tell me you’re not you, you need to address this and understand what the changes have been.

I’ve lost my taste buds, my sense of smell, my emotions, my lack of understanding, the ability to process a daily task, i struggle with attention, my memory, my fatigue and one big part of my speech and language control. I have zero filter, I swear more now than I ever did, my mood swings are horrific, I hate noise, I’m so sensitive I can’t block out other people’s conversations or listening to high pitch sound (like babies crying). The worst part is I don’t even know I’m doing any of these things; I’m only faced with reality when it’s pointed out to me. I understand that I can’t taste food; I eat purely because I have too, I’ve been days without food because I’ve forgotten about it I have zero interest in it. My main hobby pre fall was baking I loved it! I had a garage full of cake bits, I used to prefer shopping for cake bits rather than clothes. Now I couldn’t think of anything worse I have zero interest in it. Why? Is it because it’s part of my interest in food who knows I just know that it’s a different me.

I worry that I will never feel that “love” feeling again I know that I loved my family members’ and that I was in love with my husband but how can I feel love again, will I ever understand what feelings are what? I don’t have that excitement ‘feeling’, if someone told me they were flying me to New York tomorrow I wouldn’t be phased by it, it makes me sound ungrateful but I just don’t have the ability to ‘feel’ that happy feeling I once did. I would worry more about my lack of sleep.

I don’t cope well with pressure; I can’t take too much information in and process it. I know my rehab now is helping me come to terms with everything that has happened. I am scared that I will look back in a year’s time and feel that my brain injury was my soul focus, and my soul focus was to try to get better. I couldn’t give anything else a chance when I was fighting for me, and now I’ve lost a lot from my life in the process.

 

Headway

Headway saved me.

It gave me a new lease of life, when I rang them in March crying because I didn’t know what was happening to me they introduced me to two social groups. The first on a Tuesday morning called pedal power, adapted bikes for all disabilities to help with your physical rehab and also a good laugh with friends’, the second, Thursday afternoons in Chapter for a social coffee group. The first time I went was a Thursday (and this happens every time either in hospital, doctors meetings or even while at this group I cry) I feel I’m accepted, they understand how I feel. I don’t have to explain myself, why it’s so hard to walk one day or how one day my speech is better than the other, or the simple fact I’m so scared of stairs can you blame me? They completely get it because they are going through the exact same as I am. I’ve made some real life time friends at headway and it’s all thanks to them and my “brainy friends” that I’m here and it has helped me as a person.

 

Rehab.

My TBI rehab only started properly in May where I’m at hospital for 3 days a week working on my physio, speech, occupational therapy and neuropsychiatry. Other than meeting people in headway I went for 6 months without any help trying to figure out “the new me” that’s a long time transitioning into normality. This explains a lot why I couldn’t communicate or express how I was feeling. Normally when you leave hospital you are under “the brain injury community team” which help you at home but due to moving hospital and different referrals I wasn’t on this list, but now I am in the best place possible for me now. Even though it has taken a long time, the only way I will get better is by continuing with the help I’m getting now. Even if there are times when my mum is dragging me there.

 

I’m so lucky I get a lot of help from Benny Matthew at  “Cardiff Bay Chiropractics”. Compared to who I was when I was discharged to now, I know there’s a massive difference. They manage to make me stand without falling over, I couldn’t even turn over in bed without feeling dizzy. They help me reduce my daily headaches and relieve a lot of pain I suffer with due to the accident, honestly their support is unbelievable. I’m forever grateful to them!!

 

Wellbeing

There have been times where I wanted to give it all up. Where I just couldn’t understand when I felt I couldn’t get any lower and all of a sudden I hit rock bottom again. I was out of control, in a spiral and I am the worst for self-destruct. I just didn’t think I could be strong anymore; the only way I saw out was to no longer feel any more pain. I had to realise that I wasn’t on my own, yes I find rehab at hospital hard work and draining but it’s because of that help Im able to now understand what is happening to my brain.

I have the best family around me, I have the best friends supporting me and just because my life is now built around medication, hospital and rehab it doesn’t mean that my life has to stop. I will one day be back driving. I will one day be back at work and I will one day manage my fatigue and mood swings. But right now I’ve come so far in the small amount of time just wait until next year I will be a better version of myself and be loved for who I am not what I was.

I will do all I can to help others suffering from a severe traumatic brain injury and help them realise that it’s all about time and there’s no magic wand to fix it, it’s about adjusting and accepting. I know I still have a long way until I fully accept what I’ve been through. Along with the other situations I’ve been faced with in my recovery period and hopefully when I reach that point, I will give myself a pat on the back. As for now it’s one step and one day at a time.

XXX