Most concussion websites I found talked about the major symptoms and difficulties but there were many subtler changes and differences I experienced which were not discussed and which I found equally challenging. I may be unique in these but I suspect not. So this page is devoted to the things which caught me out which I didn’t expect, or which had ramifications which I didn’t foresee. Hopefully my mishaps will help you avoid some yourself.

 

Dodgy memory and sense of time

My short-term memory was impaired by my concussion to the point where I would forget what I was doing the instant I turned away from it and thus burned food and boiled over milk regularly. I would also write notes to myself then not notice them until it was too late.

There are various practical ways around this. Using a timer can be really handy for everyday tasks – something easy to use and loud enough to hear in the hope that when it goes off, you’ll remember or be able to deduce what it’s going off for. Post-it notes are good for sticking in places you really can’t miss (bathroom mirrors, kettles, loo seat lids….).

My memory was affected in subtler ways too. I could still remember what had happened in my life in terms of daily events (though in the first few weeks this took some effort), but everything felt longer ago: something that happened in the morning felt like it happened a few days ago, something that happened yesterday felt like it happened last week. It wasn’t debilitating in itself but it was disorientating and my sense of the passage of time went all to hell. As for my long-term memory, it was unaffected in a practical sense. However, although I could access my long-term memories fine, they felt like they weren’t really mine. Again, quite strange!

Now my memory is much better. However, I still have some trouble with memory retrieval in that sometimes I can’t spontaneously recall things which have occurred since my accident. For example, I often find myself asking someone about something and then when they start telling me, I’ll realise that I’d asked them before and actually remember the answer. So the memories are there but I sometimes need a prompt to access them.

Now my memory’s a bit better, when I forget something I should have remembered I’m not always sure if it’s due to the brain injury or if I would have forgotten anyway. Regardless, I always shamelessly blame not remembering on the brain injury. After all, there aren’t many advantages to damaging your brain, so while you have a ‘get out of jail free’ card for being forgetful and absent-minded, why not use it at every opportunity? 😉

On a happier note – and this is relevant if you’re a musician or dancer or have to learn physical sequences of movement for any other purposes – I found that even when my conscious mental memory was rubbish, my body memory was okay. I don’t know if it was completely unaffected but I found I could still play taiko (Japanese drum) pieces which I knew well even when though were hazy in my mind (I did make more mistakes than usual, but I think this was due to my brain being glitchy in general, rather than due to memory issues). To my surprise, I also discovered that I could learn new fiddle pieces by ear: as soon as I had got my body familiar with the physical sequence, I could play it repeatedly, even when I could barely remember it enough to sing it. There are probably other ways you can make use of this body memory to compensate for mental memory problems in other aspects of life – if you think of some, let me know.

 

Glitches

Even when I wasn’t having memory failures, I experienced intermittent brain glitches, when I would do something random and weird for no reason, such as the time I was playing a taiko duet with a friend. We were playing an improvised taiko piece within a very simple structure with which I was very familiar (so no big memory demands), yet I missed out a whole section and didn’t even notice until my friend pointed it out afterwards. It didn’t feel like a memory issue as much as a sudden glitch or discontinuity in my mind. I would also put things in strange places (although, due to dodgy memory, I can’t recall any entertaining examples of this). I don’t know what you can do about this but it’s good to be aware of it if it’s happening. It’s one of the reasons I haven’t done any music gigs yet – I cannot rely on my brain not to (metaphorically or literally) skip a beat.

 

Poor judgement and decision-making

This one can be subtle. I was aware that, for a while, it was hard to think things through and make decisions as my thinking felt clunky. This was very noticeable so I made allowances for it. What has caught me out several times has been quick decisions which I made on the fly, such as the time I overtook a lorry going uphill on the A66 when the overtaking lane was running out. Given that I was driving a hairdryer of a van at the time, I only just made it. I then had to pull over in the next lay-by because I was so disturbed by how stupid I was, which obviously negated the point of overtaking in the first place.

A friend who fell off a ladder and got a bleed on the brain and had to have holes drilled in his skull to drain it (which now form impressive indentations in his head), said that he has had similar experiences, such as running a red light at a quiet junction when he was aware there was a police car next but one behind him. That was a more expensive mistake than mine, but you get the idea.

I’m not sure what you can do about this but trying to be aware of it might make you more likely to catch yourself before you do something odd. I also took it into account when making plans. For example, when driving, for a while I avoided motorways and major roads when possible as I felt I was less prone to weird judgements when driving on smaller roads with less traffic to negotiate.

 

Detachment

For almost two years after my concussion I felt detached from things: nothing really felt real and I had a sense of being separated from things, as if I was behind an invisible screen. My emotions felt dampened (except for despair and frustration, frustratingly) to the extent that I felt I was just going through the motions and not fully connected to the world or to myself.

Although I was aware of it, because it was so pervasive it was difficult to take account of it when making decisions. Since I didn’t care so much about things, or since some things just seemed less important, it was tempting to ditch certain commitments, relationships or activities because I didn’t feel emotionally invested in them. I would say this risk is even less obvious than the risk of making stupid decisions while doing things, as described above. The consequences, however, can still be significant.

So it’s worth keeping in mind that, even if you feel less attached to some things/people now, once your sense of connection to yourself and the world comes back, you might regret decisions made during this time. If in doubt, don’t chuck it out. Just wait if you can.

I think this might relate to the quality of one’s memory too. Even now my short term memory is nearly back to normal, the past (immediate or long-term) feels more distant than it used to. This is liberating in a way but it can also make your actions feel less important and accountable, and make you more reckless in response.

This is not to say you shouldn’t make decisions at all until you’re fully recovered. Having a head injury can change you, and change the way those around you react to you, and this can be very revealing. You might well find that certain activities or relationships are genuinely no longer healthy or valuable for you. But just be mindful that you’re in a different state of mind now, and that state may not persist forever.

Although my sense of detachment gradually lessened over time, it was only in the third year post-injury (and triggered by treatment I received) that I started to feel fully myself again. It was – and still is – a deeply joyous process. Not only do I feel more present and alive but feelings and memories spontaneously well up in a way that feels profoundly nourishing, as if I am being re-constituted and restored. So remember that you have this to look forward to, even if it takes a while.

 

Disorientation and loss of sense of self

I have felt disorientated ever since my concussion. Not in a literal sense: I know who I am and where I am and what’s happened and my comprehension has not been disrupted. However, the texture of reality feels different. Even as I recover my abilities, being me feels different. This might sound trivial but for me the effects are profound and this is the probably the thing that has taken the most getting used to.

I often, especially upon waking, feel slightly bewildered. Again, I’m not literally confused but it’s as if, although everything looks and sounds the same, it has all been subtly altered. Jill Bolte Taylor, a Harvard neuroscientist who wrote a book about having a massive stroke, talks about being a stranger to herself. The effects of my concussion have been far less dramatic but nonetheless I have felt unfamiliar to myself in a basic way, as if I am a new person. This has lessened as I’ve recovered but hasn’t yet fully gone away, though now I’ve come to quite enjoy the sensation. Even the positive changes of recovery can be disorientating because the nature and capacity of your mind keeps changing.

For me it’s been really important to just accept that I feel disorientated and that I might for some time. Once I accept that, then it’s not so bad and actually quite interesting. Not many people get a chance to go through a profound change like this so, in the words of Primal Scream who I happen to have on my CD player just now, ‘don’t fight it, feel it’.

Headway, the UK brain injury charity, did a survey which found 74% of brain injury sufferers said they felt like ‘a new person’ after their injury. So it’s normal. Not sure if that helps or not.

As I read somewhere in the early days, it’s doubly difficult having a brain injury. With any injury that changes your capacity in some way, you not only have to physically deal with the limitations of the injury but also mentally adjust to your new situation. However, with a brain injury, you’ve injured the very organ which you need to use to learn and adjust.

 

Clumsiness

When I’m at all tired, I become clumsy and have broken countless ceramic objects (mainly cups) by brushing them accidentally with my hand and knocking them off shelves, and I also tend to walk into the edges of doorways in the evenings. Apparently this can be explained by cognitive fatigue, rather than any intrinsic proprioceptive or spatial awareness failings, but it’s still really annoying, so something to watch out for, especially when you’re tired.

 

Sensitivity to knocks and jolts (and drills!)

I was going to ask my rehabilitation medicine consultant about this at my next appointment but that has never materialised so I have no official info on this. However, from the experiences of myself and two other concussion sufferers I know, you can be highly sensitive to any knocks or jolts to the head years after your initial injury and even once you’ve otherwise recovered.

For example, about 20 months after my concussion, I was on a train with my sister and nephew, stood up to hug them goodbye when they got off the train before me, then sat down. Unfortunately – despite my nephew having been talking about it just minutes earlier – I had forgotten I was on a folding seat, so I sat down hard on the floor and jolted my head. I then had instant nausea, a headache all day, and took weeks to shake it off. Also, over two years after my concussion, I had to have a filling and the vibration from the drilling gave me a headache for days. One more reason to avoid the dentist….

One therapist I see, who deals with concussion a lot, thinks there’s both a physical and an emotional component to this in that, if you hurt your head even slightly, it’s hard not to start worrying about the effects. So if you do have a knock or jolt, try to stay relaxed. Breathe slowly. And slow down and give your brain the best chance it can to bounce (not literally) back.

 

Other injuries

I’ve read on some concussion websites that if you sustain other injuries at the time of getting your concussion, this may slow down your concussion recovery. I damaged my inner ear when I fell but didn’t find out for three months and it took nine months to see a specialist who gave me exercises to help. I do wonder if that has been a factor in my painstakingly slow concussion recovery. In any case, if you definitely/may have another injury, it’s important to get it checked out and treated as soon as possible, so your brain doesn’t have extra things to deal with while trying to recover itself.

 

Variations and cycles (including the menstrual cycle)

You’ll probably find that how you feel and how much you can do varies day by day or week by week, even if you’re improving overall. If I’m tired or under the weather in any way, then my head is worse. Stress instantly makes it worse. I’m told this is all common. What’s also common for women is that your menstrual cycle will probably have a noticeable effect – for me it’s worst a few days before my period and the first day of it. Hormonal changes due to menopause or perimenopause can also have an effect. Apparently this is well known but not well understood.

I haven’t done this, but it might be worth keeping a symptom diary to see if you can identify patterns in your symptoms, as this would help you plan around them. My daily cycles are much more obvious: I am often more groggy first thing in the morning and more nausea-prone and tired in the evening, so I try not to have things I have to do at those times. If I do need, or want, to have a more lively evening, then I try to make sure I can take it easy the next day, in case I feel a bit worse.

I’ve personally found hunger makes my head feel worse, in terms of mental functioning and nausea. If you find this too, keep healthy snacks handy and eat smaller meals more frequently throughout the day. I never go anywhere without almonds and dark chocolate (at least 70%, as this is not only delicious but actually good for you).

 

Friends, family and social situations

This is a hard one but be aware that some of your friends and family might not get it. Not really. They might say they do, and they might try to understand, but some of them just won’t be able to, especially if you have no accompanying bodily injuries and if you’re still able to interact with people fairly normally. Because you appear okay it’s just not real to them. They don’t see the effort you’re making to function or appreciate the toll it takes on you to do so. Even people how have had a concussion themselves don’t always get it, if they recovered much more quickly. The two worst days I’ve had since my concussion, where I was pushed to my absolute limits and felt genuinely traumatised, were at the hands of two of my friends. Both thought they understood my situation and thought they were either asking things of me that were fine or were deliberately pushing me because they thought it was in my best interests.

It’s easy to say, well just put your foot down and refuse to be pushed. However, at the time, you might not have the presence of mind or the wherewithal to resist firmly enough, due to your under-functioning brain. I certainly didn’t. Even if you’re able to think fairly clearly in a calm situation, you might not always be able to think as clearly under pressure, so that’s something you really need to take into account when undertaking social activities. (For some of you, there will be work situations you have to navigate. I’ve been self-employed, and thus mostly unemployed, since my concussion so I haven’t had to deal with that as much and have been able to take things more at my own pace, although my financial situation is pretty dire as a result. A brain injury identity card – see below – might be useful for work situations .)

For myself – and others I’ve spoken to – social situations, even with people you’re very comfortable with, can be the most tiring for your brain. I think socialising – processing language and body gestures – must just use a lot of brain resources. In fact, I think the most difficult thing about my concussion recovery in a practical sense is dealing with other people.

This can feel very isolating and I have found that I have become more solitary since the concussion. I get tired of trying to explain to people why I can’t do certain things or that I might need to suddenly stop whatever we are doing and leave the situation, and I get upset observing their confusion/frustration/sadness when that happens. It’s also just easier on my brain to avoid the social stimulation itself. Solitude is more restful. It helps that I’ve always enjoyed my own company, although my own company hasn’t been quite as scintillating since my concussion. I’m absolutely not recommending that you shun company but you might find you need to be more discerning and selective in  who you spend time with (insofar as you have choice in this). As much as possible, seek out friends and family who do understand your situation or at least who accept it, and who will support you to respect your limits and thus support your recovery, given the importance of not overdoing it.

You’ll also probably hear multitudes of platitudes: “of course, you’ll recover”, “oh, you’ll be fine”, “I have faith in you”, etc. I find it hard not to get annoyed by these, as it often comes across as being dismissive of the seriousness of my situation. If you find this too then try to remind yourself that people are just trying to be positive and it’s definitely better than them constantly telling you you’re doomed.

I don’t mean to sound negative, however. Many people will understand, or understand enough – and the ones who do might surprise you. Even people who don’t really get it can still be very supportive in different ways. I have encountered a lot of kindness during my recovery. I think people often just aren’t sure how to react or how to be around people with invisible injuries. I tend to be quite frank about my injury and limitations so that people don’t feel they have to pussyfoot around the issue. I’m not so good about being frank when people push me too far, when I know they didn’t mean me any harm, and I need to be a bit more courageous about this as people can’t adapt if they don’t know they need to.

I also think it is important, emotionally and neurologically, to keep in touch with folk. Social interaction can be vital in bringing us out of ourselves, especially when we’re not feeling well, and it is important to keep stimulating our brain in that way, if we can. Especially after these awful years of intermittent lockdowns, feeling connected and in touch with people is ever more important.

Headway has good information on the effects of brain injury on relationships, including this page for friends and family (and there are good leaflets which you can download and print at the bottom of the webpage). There is also an excellent page on this American concussion clinic website listing practical ways you can help someone with traumatic brain injury or concussion.

You can apply to Headway for a brain injury identity card. At the start of my recovery I would have thought this was overkill, but I recently applied for one as I think it could be very useful in certain social situations, to make your injury seem more real or ‘official’ to people. I’ve written more about it on the practical tips page.

If you can find other people with a similar situation to you, then talk to them as well. I’ve met a couple of people who have post-concussion syndrome and it was clearly cathartic for us to be able to share our experiences with each other. I felt much less alone and also more optimistic through hearing about some of the ways they’d found to cope, and ways in which they had improved. As such, I’ve started adding online articles and blogs by other people with brain injuries to the main page of this website. Let me know if you find more.

If it’s really getting you down, you could try a new game I’ve just invented – Brain Injury Bingo. You read this article on 10 things not to say to someone with a brain injury and you cross off every one you’ve experienced.  If you’re playing this with brain-injured acquaintances, then the winner is the one who crosses off the most. I’ve got at least five. I was going to suggest awarding yourself extra points for hearing them multiple times but I’ve lost count of the times I’ve heard number one.

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That’s all I can think of for now. Feel free to email me if you want to share any experiences or tips, and I’ll be happy to add them to this website: alison at concussionrecovery.uk