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

 

Please keep sharing to raise more awareness for Brain injury survivors, thank you.

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