Believe it or not I have progressed since the beginning, you will see in the next chapter exactly how much I have progressed. Without help, I wouldn't be where I am now. To anyone with a Brain injury, you need as much help as you can get, if you are not offered it, ask for it and accept whatever you are offered even if you think it might not help you, you have to try.
In the beginning and after my first appointment, I was given Headway booklets and directed to their website- these were brilliant! My family and I could read the booklets and relate to what was being said, learn some ways to cope and understand that what I was feeling was normal for a Brain injury, this was a comfort.
The Kings Brain injury clinic referred me to the local Community Brain injury team (CBIT) for support. These were fantastic; I would be able to see an Occupational Therapist (OT), Speech and Language Therapist (SALT) and the Psychologist, all the time still being under the clinic at Kings for further help/support. The OT started to see me first and she would visit me at home weekly, she would give me advice or help me with things around the house or just have a chat to me and be some company. She later got me to leave the house on my own which I hadn't done since the accident, she used lots of techniques and encouragement and gave me that bit of independence back and stopped me from being so scared. Secondly, I started to see the SALT who helped with my swallowing problems; these also visited me at home and gave me lots of tips and advice on how to help my swallowing. I then started to see the Psychologist, but I'll talk about her later in this chapter. I was supported by all 3, had frequent appointments and I knew I could call them if I had any questions or needed another quick appointment.
When I was attending the Kings Brain injury clinic in London, I was asked if I would be like to be part of a project through Bridges Self-Management- they produce booklets for patients and training for staff to help people get through what they are dealing with. Bridges were just about to start a Traumatic Brain injury project and asked if I would like to be involved, I didn't have anything to lose and I said yes. I attended focus groups, had chats on the phone, a recorded interview in person, I had a photographer come and take photos of me for the booklet, I met lots of people in a similar position to me and this was the first time I had met others with a Brain injury, I can't explain to you how calming it is to be around others with a Brain injury, we can say what we want about our problems, no one judges and we all feel comfortable.
Bridges have now produced this booklet which contains our stories, tips we have used to cope with things and get over things, also all about goal setting. I have a copy of this booklet now and I'm proud that I did it; I have also attended a lecture about this which was a condensed version of the full training for Doctors etc. This booklet is now handed out at Kings Hospital when people with a Brain injury are discharged and Brain injury rehab units, I really hope this helps people in the early stages. The process of helping with this book has really helped me and I wish that something like this would have been available to me at the beginning.
Through CBIT, I heard there was going to be a Headway event locally where they wanted to see if a permanent drop in session would be beneficial. I attended this along with many others and the press came, I was surprised with how many local people there were who had a brain injury so I thought a drop in session would be a good idea, we didn't have anything to do with Headway in our local area. A few months later, I found out that this drop in session would start going ahead weekly and would need some volunteers. I was happy that there would be a local group that I could attend with people in the same boat and I could get more support. I had been talking to my Psychologist about me not ready to return to work and it was suggested that I look into volunteering to build up my confidence, get used to new environments and new people and get out of the house and have a bit of a routine. I applied to be a volunteer and I was accepted, I have now been volunteering for Headway for nearly 4 months and I love it! I get out of it everything that I thought I would and more, being with similar people and making friends with these people is great- we are so comfortable with each other and don't mind voicing our problems or concerns. Volunteering for 4 hours on a Wednesday has made me realise that I'm definitely not ready for work as by the evening; I'm so tired I can barely string a sentence together. I would urge anyone with a Brain injury to find their local Headway group and join; you will have a great time, get advice and support plus make new friends who are also in your position.
You need to write things down and you need to talk. I have written things down since the beginning, I have to otherwise I forget stuff, I also wrote down feelings and emotions at the beginning which you will see in the next chapter. Without writing you can't keep track of how you are doing, you can't get everything out in the open and I've learnt that writing small details, even if they seem insignificant, might help to trigger a memory. If I went into town with somebody, I would write down what I wore that day, what shops we went in and what I ordered if we went to a coffee shop, then in a week's time instead of being told that you went out, you can see written down what you did and small details might trigger another memory of that day. It's hard to start doing this especially when you used to just go out and a week later remember what you had done but you don't have a choice now. I've had times where I haven't done this thinking that I would just remember, I've even had times where I'd thrown away diaries that I'd written in as I was so frustrated that I had to rely so much on what I'd written to try and remember things. I look back now and wish I had kept them things or wish that I had written certain things down. People take their memory for granted but I can't now.
You need to talk as difficult as that is, I don't talk about any of this with family and friends, it messes up my head so don't want to mess up anyone else's. How do I begin to explain why I'm not fine? No-one can even begin to understand what this is like and I feel so lonely, even if I tell them they can't fully understand so I will still be lonely. There's no point in saying anything other than 'I'm fine'. I never knew how lonely you could feel whilst being surrounded by people.
I've learnt now that talking is the best thing to do, even if people can't understand, they will try. The people closest to you are the most supportive and will do anything to try and help, talk to them and take the weight off of you, just saying it out loud makes a difference. You won't feel so lonely and people will know what you are going through and do their best to help you. Tell a Doctor/ Consultant and they might be able to refer you to somewhere that can help, just tell someone what you are feeling or you will end up like me, spending all your money on bingo!
See a Psychologist! I said earlier that I would talk about the help I received from a Psychologist; she deserves a section to herself. I started to see her over a year ago and I wouldn't be as well as I am now if it wasn't for her. The help, techniques, support and advice that she has given me have been brilliant, most of my problems are not as heightened as they used to be, she has given me so much and because of that I have been able to tackle my problems, she has helped to me to cope with things. I saw her pretty much weekly and I knew she was always there if I needed extra appointments, she let me talk and sometimes I could be there for a couple of hours but I never felt rushed or like I needed to go and she allowed me to take family members along when needed so they could air their concerns with me.
In August 2015 I had my last appointment with her, not because I didn't need to see her anymore but because she was leaving. I was gutted, she has been a constant in my life since the accident and I couldn't even think about not seeing her again, and I've told her things that I've never told anyone else. She said that I have achieved everything myself and she only provided a space where I could talk, this is not the case! If it was just providing a space, I could be a Psychologist! I have achieved things myself but I couldn't have achieved if it wasn't for her help, I wouldn't be doing the things I'm doing now if it wasn't for her, I owe everything to her. My last appointment with her was the worst day, I cried on a few days before, on the day and a couple of days after and I don't usually cry anymore, I felt sick and just couldn't imagine not seeing her again. It's been a month since I last saw her and I still miss her, I'm still sad that I won't see her again, she wasn't just a Psychologist she was a friend, but because of all she has given me I know I will be ok without her and until the new Psychologist starts. I would urge anyone with a Brain injury to see a Psychologist; it will be the best help you will ever get. They obviously won't be as good as mine though!
I've learnt that you can't get through brain injury alone; even if you only have one person by your side you will be ok. Talk about it and ask for help, you are only human and everyone needs help sometimes, don't feel weak or defeated if you do need more support. Trust me!
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