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.
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.
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.
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.
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.
lots of love