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Brain Injury Recovery Question: “How is your recovery going?”

Brain Injury Recovery

“How is your recovery going?”

I was asked this by a friend a few days ago. It was then I realised my recovery had stopped and the problems I still have are my way of life.

I’m surprised it’s taken me this long to realise, it’s been almost 4 years now and the last time I was asked this question was just after my injury.

I knew before this realisation that my chronic fatigue was the best it would be as I was told by a doctor “If it doesn’t go away after 2 years you’ll have it for the rest of your life”, I’d like to say that I’ve come to terms with that… But I haven’t.

When I answered this question I mentioned that I didn’t receive professional help until 6 months after my injury and that when I left hospital no one told me I would need to do things to help my brain. At the time I didn’t see this as a problem, even when I received help… I thought maybe that was the amount of time you’re supposed to wait? I was just happy that I finally got help. Now I feel like this was a huge mistake and perhaps why my recovery has taken longer or why the problems have become my way of life… If I had been seen sooner would I have less problems? (I don’t even want to go into the fact that the first hospital didn’t tell me I had a fractured skull and jaw!)

So, to make this blog post sadder… What problems do I have?

Chronic fatigue:

‘In the general population, fatigue is a common complaint with some studies citing an incidence of 10 percent. But for people with traumatic brain injury, it is one of the most common problems post-injury. Fatigue affects not only people with moderate to severe TBI, but also those with mild TBI. And we still need more research to better understand this issue.’ (brainline.org)

I’ve learnt over the years how to manage it (kind of) however that doesn’t stop it taking over my life. Mixed with the fact there is no pattern to it and as much as I try I can’t control it perfectly is why it’s at the top of the list. Some days I can do loads and not be tired, then some days I can do one little thing and be completely shattered. I have to plan my day around it, so if I know I’m doing something later I’ll make sure I have time to nap… If there’s no time to nap I can’t do that thing. It may have improved since my accident, but I still nap and I have to have nine or more hours sleep. It’s exhausting both emotionally and physically living my life like this.

It comes out of nowhere, I just get an overwhelming feeling of ‘I need to go to sleep. Now‘. My body feels like its made out of rocks, it’s such an effort to move and the more I do the worse it gets. I stutter my words, I feel really dazed and lightheaded, lights are brighter, headaches last for longer as well as all of this I also get emotionally fatigued, which means if I do something stressful or upsetting like having a deep conversation, have an argument or crying I feel drained and need to nap.

Noise sensitivity—Being oversensitive to noise:

I can’t concentrate on things if there’s too much noise. If someone is talking to me and the TV or radio is on I’ll have to turn it off. I find it impossible to have a conversation if it’s more than one person talking, I get frustrated and overwhelmed. Little noises in the backgrounds can make me feel like this too, the clinking of keys, a beeping phone, rustling of carrier bags… Things like that and it’s even worse when I’m fatigued.

Memory problems

Headaches

Itchy and painful scar

Getting confused over the simplest of tasks

Taking too much information in at once:

If someone tries to tell me something I need to remember and I don’t have anywhere to write it down I will forget. Also, when I need to copy a number (like a phone number) I’ll need to look at it a few times as I’m copying it.

Mood swings

I think this mainly happens when I choose to ignore that I’m fatigued.

Mixing left and right up

Walking into a room and forgetting why

I know this happens other people without a brain injury but it happens a lot more with me.

All the emotional thoughts…

I can’t manage the mental change I’ve recognised in myself. Even now I can spend days at a time thinking about nothing but my injury. I get angry with myself. I’m constantly battling with who I am now and don’t understand why I’m not who I used to be. I don’t understand why I can’t move past this, yes it was a life changing thing that happened to me but it’s not me (although sometimes I feel like it is) I am constantly going back and forth between these thoughts. I just want to get over it, that is all I want… Why isn’t it that easy? Shouldn’t it be that easy?

I’m not really sure how to end this post. As my recovery has stopped so soon, maybe an abrupt would suit this post, and honestly that was harder to write about than I thought it would be. How is your recovery going? I’d love to know how you guys are controlling and living with your problems.

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