TBI – Survivors, Caregivers, Family, and Friends

Posts tagged ‘Ireland’

SPEAK OUT! Guest Blogger * Lauren

                                 SPEAK OUT! Guest Blogger *Lauren*

Girl Blogger cartoon_picture_of_girl_writing

 

It’s been 18 months since I acquired my TBI and I want to give you an overview of those 18 months in this post. It’s of course impossible to include everything (that would take up a book!), but I hope that there’s something in what I write that resonates with you or comforts you or helps you understand what you or your loved one may be going through.

My journey started in October 2012 when I woke up in hospital. I had no idea why I was there or even where I was. It turns out I’d been in a medical coma for 4 days, which would explain my confusion about what day it was! I’d had a subdural bleed whilst I was playing roller derby. It happened very suddenly and I was rushed off to hospital. I’d had a craniotomy and I spent 9 days in hospital in total, which I believe is pretty quick for TBI admission. I just wanted to get home. I was bored in hospital and was utterly convinced everything was fine.

I got home and carried on as usual. I went for nights out. I travelled to see my family in England. (I had just moved to Belfast, Northern Ireland, at this point.) I figured all I’d need would be a few good nights sleep and I’d be OK again. This stage, which I now recognise as denial, lasted for about 8 months. I was in reality quite sick. I looked dreadful, but there was no way anyone could tell me that. I just didn’t believe it.

It was about 8 months post-op that things started to feel “not right.” I started feeling incredibly tired all the time. I was starting to get scared and anxious and avoiding people. I stopped leaving the house. Luckily, I have an excellent GP who I went to see, and he referred me to the Community Brain Injury Team, something that I didn’t even know existed. I was never told about this on discharge from hospital. Through the Brain Injury team, I got access to a neuropsychologist and an occupational therapist, as well as a physiotherapist, who would be a great help later in my journey. This set the scene for what was to become the hardest 10 months of my life so far. I became very low and depressed, very anxious and spent many days crying and wanting to not exist anymore. I had a stage where I didn’t get out of bed for a month. I couldn’t; I was scared of “out there.” Everything felt so overwhelming and hopeless I thought I would never get better. I got very bad health anxiety where I was convinced every sniffle and ache was cancer or some incurable disease. I was incredibly lost and alone. This didn’t just affect me; it affected my partner too, who lost his independent and busy girlfriend.

The thing with TBI is that it’s a traumatic event. You lose who you are; you completely disappear overnight. What I was experiencing was a grieving process. I was grieving the loss of my hopes, my health, and my beliefs about the world. That is a huge blow and takes a long time to process. I cannot adequately describe the rollercoaster that I have been through, but if you have experienced a TBI, you will know exactly what I’m talking about.

Where am I now 18 months later? Well, my energy is still not 100%, but it’s better than it was. I can stay up past 4 pm now! I am able to leave the house without my heart pounding and without my bursting into tears. I’m starting to think about reinventing my life again. I still get a little anxious at times. I still cry (not every day anymore), but the difference is now I can see that it’s OK to feel sad. It’s OK to cry. It’s OK to get angry, to be mad at the world sometimes because this is all part of the process and to truly heal you need to GO THROUGH these feelings. They hurt like heck and they can make your day a bit less fun, but if you don’t go to those dark places, when you feel them they will be suppressed and pop up another time. What else did I do to help myself? I read. A lot – books about trauma, grief, mindfulness, gratitude and neuroscience. I wanted to understand my enemy. I started to meditate daily; it gave me a place to calm the mind and just let those thoughts and feelings drift on by. I leant on my partner and family. I forced myself to face those fears about the scary outside. I now hope to study again. I want to learn to be a Counsellor or Psychologist and help others through trauma and grief.

TBI recovery is not a straight road. It goes backwards and forwards and up and down. You need heaps of patience and to learn to be kind to yourself. You have to know there will be slip-ups and stumbles, but remember the most important thing I tell myself nearly every day:

THIS IS NORMAL AND IT WILL PASS.Vandal, Lauren Blogger Photo IMG_20131024_132051

BIO:

Lauren is 37 and lives in Northern Ireland. She is currently finding her way back to the big wide world and writes about her TBI journey at Braingirl and Next Doors Cat.

 

Thank you, Lauren.

Disclaimer:
Any views and opinions of the Guest Blogger are purely his/her own.

 

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Survivors SPEAK OUT! – Lauren

SPEAK OUT! – Lauren

by

Donna O’Donnell Figurski

Lauren - about 4 days post TBI surgery

Lauren – about 4 days post TBI surgery

1. What is your name? (last name optional)

Lauren

2. Where do you live? (city and/or state and/or country) Email address? (optional)

Belfast, Northern Ireland

3. When did you have your TBI? At what age?

September 2012. I was 35

4. How did your TBI occur?

Playing roller derby

5. When did you (or someone) first realize you had a problem?

It was very sudden, I felt something wasn’t right in my head, then my vision went and I collapsed.

6. What kind of emergency treatment, if any, did you have? (e.g., surgery, tracheotomy, G-peg)

Ambulance to Accident and Emergency.
A CT scan, then a craniotomy

7. Were you in a coma? If so, how long?

4 days. It was medically induced because I kept wanting to wake up!

8. Did you do rehab? What kind of rehab (i.e., In-patient and/or Out-patient; Occupational, Physical, Speech, and/or Other)? How long were you in rehab?

No rehab to speak of, Out-patient appointments with Neuro every few months. I’m now discharged.

9. What problems or disabilities, if any, resulted from your TBI? (e.g., balance, perception, personality, etc.)

Initially I had palsy of the left eye. Most of my problems have been psychological. I also had fatigue for a long time. (It’s still here but not as strong.)

10. How has your life changed? Is it better? Is it worse?

How do you put this into words? My life has changed in many ways, I was very independent. Now I rely on my partner a lot, mainly due to anxiety and depression.

There are things that are better – the ability to let small things slide is easy. I have an appreciation of life. I know what I DONT want anymore. My BS detector is much improved.

The bad – feeling scared for no reason. Crying a lot

11. What do you miss the most from your pre-TBI life?

My independence

12. What do you enjoy most in your post-TBI life?

The slower pace; the ability to filter stressful people

13. What do you like least about your TBI?

Anxiety anxiety anxiety

14. Has anything helped you to accept your TBI?

Time, patience, writing, lots of reading and meeting other survivors

15. Has your injury affected your home life and relationships and, if so, how?

It has made us a lot closer. It’s not an easy ride. It can get rough, but we’ve learnt to communicate in a much more meaningful and honest way.

16. Has your social life been altered or changed and, if so, how?

Yes, I’ve become more isolated. My social circle reduced a lot post-injury. That hurt at first, but I’ve accepted it now. More contact with others would be nice though.

17. Who is your main caregiver? Do you understand what it takes to be a caregiver?

My partner, he’s great. He’s put up with so much. I have an idea of what he’s been through, but I’ll never truly understand how it feels. It is difficult and tiring.

18. What are your future plans? What do you expect/hope to be doing 10 years from now?

I hope to study again. I want to complete a Psychology or counselling course so I can help others. I want to be out in the world again, and most of all I hope to have my joy back.

19. What advice would you offer to other TBI survivors?

It’s hard but it will pass
What you feel is normal
Be kind to yourself, and you will also need plenty of patience!

20. Do you have any other comments that you would like to add?

Good luck to all TBI/ABI survivors. Remember you are never alone.

Lauren celebrating her birthday about 16 months post-TBI

Lauren celebrating her birthday about 16 months post-TBI

 

Thank you, Lauren, for taking part in this interview. I hope that your experience will offer some hope, comfort, and inspiration to my readers.

 

If you would like to be a part of this project, please go to TBI Survivor Interview Questionnaire for a copy of the questions and the release form.

(Photos compliments of Lauren.)

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