Fatigue. Wicked exhaustion backlash after brain injury.

Michelle #jumbledbrain — Wed, 25 Jan 2017 16:32:30 +0000

Like many other brain injury survivors I struggle with fatigue most days. I can’t remember the last time I felt refreshed and raring to go. Not even after I’ve had a decent sleep. Whilst people are sympathetic when you tell them you suffer with fatigue, how can you help them understand what it really feels like? I briefly mentioned it in Don’t guess what I need, one of my early posts about how people don’t know how to approach survivors. But now I’m going to do my best to put more flesh on the bones of the subject.

Why fatigue happens after a brain injury

The brain has lots of super highways where messages and commands surge through to another area of the brain for every task. These are neurons, and we are constantly building new ones. Babies are the champions at this as they experience new things, and learn more about how their own body works. The older we get, like most other things about us, this process gets slower.

When you have a brain injury some of these super highways can become damaged. So you still might know how to go about something, but some of the actions that used to be second nature become more difficult. You brain has to make decisions and send instructions to different regions for even the simplest task.

Imagine this…

You always take the motorway to work, and you avoid rush hour. The route is pretty direct and you are able to travel at the speed limit for your entire journey. It’s quick and efficient. Means you don’t have to leave earlier, and you have more energy left for other things when you arrive.

Sounds great! But one day an earthquake happens and the motorway is destroyed. But you love your job, and being resourceful, you know you can get there using an alternative route. (Go you! Determination is a great thing!) But no sat nav is working, so you’re back to following road signs. (Are you feeling stressed yet?)

All the other drivers who would use the motorway are in the same boat, so turn to the same roads. It’s congested and slow going. Everyone is following the diversion signs, with only some using less known routes. This is going to take much longer than usual. But you have called ahead to work, so at least they know you’re going to be late and it’s not your fault. (Take a deep breath, and remain calm. Road rage won’t get you there any faster.)

The diversion is confusing and you take a few wrong turns. (Don’t worry you’re not alone. Everyone is, it’s no reflection on you. Grit those teeth and plough on! You can do this!) Everything feels so unfamiliar so you need your wits about you. When you used the motorway you could almost do it using autopilot, but today you need to really put your back into it.

After battling against the odds, you finally arrive. (You might be seriously late, but at least your Boss will appreciate the effort, right?) The office is in chaos as lots of staff have suffered a similar start to their day, and everything is backed up. So when you see your Boss to report for duty, instead of the warm welcome you were expecting, you are shown a massive pile of work on your desk.

And that’s when you realise no amount of coffee is going to get you through today.

The journey alone has left you frazzled, and you wish you hadn’t bothered. Even as you start to try to tackle the first task which is mundane and something you would usually fly through, you find it hard to concentrate and make mistakes. You make so many mistakes you would usually be fired for being so rubbish. But because the whole place is in such disarray they have to keep you. You’re better than nothing. You haven’t achieved much, but you’re knackered and considering resigning.

Welcome to my world. This is what journeys for those important little messages are like. The little guy might be just going to tell my hand holding the mug of tea to be more steady. But because he is taking so long someone else has to step in. So another little guy is going to the eyes to tell them to watch the mug to help make sure it’s steady. But he was about to be used to deal with overall balance. Quick find a replacement! OK got one, but we need extra correction now due to the delay. It’s a two man job! Um where does he think he’s going? Too late, spilt it anyway and wasted all that extra energy.

This is just one example of how easily fatigue happens.

Absolutely everything can become a battle. I can still do things, but the energy needed just in the processing of the task and really take it out of me. I hope that makes it a little easier to understand why I’m not just tired.

How much do you struggle with fatigue? Do you feel people understand what it's like for you?

The post Fatigue. Wicked exhaustion backlash after brain injury. appeared first on Jumbledbrain.

When a brain injury makes your senses misbehave

Michelle #jumbledbrain — Wed, 23 Nov 2016 22:51:02 +0000

As some insight to myself after my brain injury returned, I started to notice that some of my senses seemed different. Once you have got over the elation of being alive, and returning home, many start to feel the changes.

With a brain injury it takes time to see your senses are different.

First I had to accept my sense of balance was off kilter. I was clumsy, and would fall over easily. Muscle weakness on my left side did nothing to help this. Through specific exercises I have been able to improve my strength, but my balance still isn’t good. So I have to be careful. When going up and down the stairs I make sure I hold on to the hand rail to steady myself. Sounds obvious, but I used to just run up the stairs. I didn’t give a second thought to grabbing the rail for safety.

Next I realised my sense of touch was affected. I couldn’t identify things that touched my left side. Instead my leg had altered sensation, and would report pain. My left leg would be in agony as cold or unexpected items touched it. A sharp, painful, stabbing sensation would hit me. But this may have been nerve damage rather than my brain injury as such. But even if I stoked the cat with my left hand I could only sense pressure, not the texture of his fur. That was so disappointing for me.

Smells started to affect me, and I would suddenly be hit by really offensive odours. But as I didn’t as ways shout “something stinks“, I didn’t know I was the only one smelling them. So it did take time to realise that: at best I was over sensitive, at worst I was imagining it.

My sense of taste was affected for while too. I had always had a pretty plain palate, but suddenly I wanted spicy food. Otherwise things didn’t seem to have any flavour. The idea of forcing myself to eat tasteless food was uninviting, particularly as my appetite was already diminished. My partner James would buy lots of different things to try to encourage me to eat more. (Now though, as my taste has returned I eat far too much. I’m such a little piggy!)

Realising my sight was affected by my brain injury was the most difficult and upsetting. I would see double, which when you can’t balance well spells disaster. Effectively I couldn’t do anything. My coordination was rubbish, but when you can’t be sure where the thing you are looking at is, it’s virtually impossible.

People are the real challenge when you are struggling with your senses.

When I could walk well enough to ditch my crutch I was proud of myself. But I still limped badly, and was very slow. However losing the crutch symbolised progress for me, so I was pleased to be rid of it. What I hadn’t appreciated is, a crutch is something visual, and told strangers not to expect too much of me. So when I started going out without it, the fast paced, impatient modern world virtually knocked me over.

The world is always being told to be assertive. That seems to have evolved into a mildly aggressive population, who just walk at you, not round you. I feel like I’m a pin trying to cheat a bowling ball. The conundrum is people need to stop rushing me, but I don’t want to be labelled as disabled.

So perhaps that means I still have some way to go to accept my current position. Or perhaps that is fighting spirit. It depends on your perspective, but prefer the latter. I still like to believe I will continue to better myself. My brain injury makes me hampered, but I am still able.

How has your brain injury affected your senses? Do you feel the difference in your senses holds you back?

The post When a brain injury makes your senses misbehave appeared first on Jumbledbrain.

fighting spirit Archives - Jumbledbrain