My brain injury fatigue makes me talk like a robot
Headway Action for Brain Injury Week 2019
This week is brain injury association Headway’s Action for Brain Injury Week. This year its campaign Brain Drain: Wake up to fatigue! is raising awareness of fatigue, which is the one of the most common effects of brain injury. Fatigue has had a huge impact on my life and I don’t say that lightly. I want to share with you how it affected me yesterday. Just one day of my life with post-concussion syndrome.
Read on and I’ll also share with you how it also affects some of my brain injury warrior friends too and resources that will help you manage your fatigue.
- Find out more about Headway’s Brain Drain campaign
- Read about how I dealt with the first anniversary of my brain injury
Usually when I’m dealing with fatigue and all the other symptoms that come with my brain injury, the last thing I want to do is put my mobile phone in front of my face and start recording. But I know so many other brain injury warriors dealing with it, and how difficult it can be for others to understand. Sometimes words just aren’t enough.
I put on my brave girl pants and recorded this yesterday. Yip, you’ll see and hear me in full-on robot voice!
I used to think I knew what fatigue was
I remember times in the past when I worked in a busy and stressful job that I would be really tired. I worked full-time, I was in the gym several times a week, I had a busy social life. Somehow I managed to juggle it all. But there were times when I’d need to nap in my car at lunch time a lot. I’d work late, come home, have tea and fall asleep on the sofa.
I thought that was fatigue. And for me, at that time of my life, I felt shattered a lot and needed a lot of sleep. But I still managed to carry on with my life.
Fatigue with a brain injury is like nothing I’ve ever known
When you have a brain injury, you’re not dealing with a healthy brain with a full energy battery. You’re not going to feel tired, need a nap and then wake up and feel ok to carry on with your day.
In my experience, and for many other warriors I know, fatigue will hit you like a truck with little to no warning and you could be bedded for days, only able to function basically. By that I mean you wake, you eat if you can and you sleep. Because anything other than that requires a huge amount of energy that you just don’t have. It will probably come along with a lot of other symptoms too.
Brain injury fatigue makes me talk like a robot
Yesterday I was at my local Headway Dundee and Angus, which meets every 2nd Wednesday afternoon in the Steeple Church, Dundee.
I had a chat with some of the other group members when I went in and there was a lady from Citizens Advice Bureau there to do a talk. I don’t know how long she was talking for but I really struggled to concentrate and focus on what she was saying. With my brain injury it’s difficult for my brain to process information so I yawned my way through and by the end my body was showing the effects of fatigue.
I also have hyperacusis which is sensitivity to noise, which is like the opposite of being deaf. My brain finds it difficult to filter out noises when there are a few conversations going on around me so once the fatigue hit I couldn’t take part in conversation.
One of the kind volunteers recognised I was having a power down and asked if I wanted to go into the kitchen as it’s quiet in there and I could sleep. I’m so grateful that the group know me well enough by now to recognise the signals when I can’t think to do anything about it. I know what the signs are and I know what to do but in that situation I forget my coping strategies and I don’t have the thought to get myself out of that situation.
By then my body had slowed down, I was dragging both feet trying to walk with my sticks into the kitchen and the few words that came out of my mouth were slow.
I listened to a meditation app to help rest my brain and then slept.
I went home and got some sleep on the sofa while JP made tea. I knew I needed food in my body but trying to eat was taking it out of me. It sounds bizarre not having the energy to finish eating my tea but that’s my reality at times. If it needs too much chewing sometimes it’s just not going to happen.
Trying to chat to JP my speech was really slow and I remembered about Headway’s Brain Drain campaign. I thought of all the times where I’m dealing with fatigue and other symptoms that I keep to myself. Being honest I’m embarrassed by my speech. I feel like I talk like a robot when by brain is fatigued. I think it makes me sound stupid. I know I’m not stupid but with little emotion in my voice and not being able to find the words I want to use, I feel stupid.
I decided to keep it real and share how fatigue affected me for one day because I know so many others have a similar experience. Unless you live with it yourself, or you witness it, in can be so difficult for others to truly understand. I know lots of people that have difficulty gaining understanding from friends, family and employers. Some days I’m affected a lot worse than this and spend days recovering. Today, I’m grateful I’ve been able to pace myself to eat, sleep and share this blog.
How others are affected by brain injury fatigue
Over on Instagram, I asked other warriors to share their experiences with brain injury fatigue so that we can help raise awareness for Headway’s Action for Brain Injury Week 2019. Here are some of the responses:
“I can’t find words, I walk like I’m intoxicated, massive headache, can’t think straight”
“My legs lately have been shocking, can’t walk more than a few metres”
“I have about one good hour in a day. Then everything is an Everest sized task”
“Speech, word finding difficulties, concentration, photophobia, memory difficulties”
“Numbness and tingling down my left side and much slower cognitive processing/focus”.
How to cope with your brain injury fatigue
If you’re struggling with your fatigue there are strategies that you can use to help deal with it:
- Read this on Headway’s website to find out more about fatigue after brain injury
- Download this PDF booklet from Headway: Managing fatigue after brain injury
You should also seek advice from your GP. I was referred to an occupational therapist who helped me identify where my energy was going and how to pace myself.
Over to you, warriors!
Do you get fatigue with your brain injury too? How do you deal with brain injury fatigue? Pop into the comments and let me know. I’d love to hear from you!
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✨ Keep sparkling one day at a time! ✨
Much love and healing vibes,
AJ x
