50 Shades of Fatigue

fatigueThis is a topic I have discussed already and sadly is something so badly misunderstood that as result can cause a feeling of isolation.

I know I mention this in my book but someone I believed was a friend, came to visit sometime after my stroke. However, she turned up several hours later than promised. This meant I had missed my daily sleep, something that may sound meaningless to those who do not suffer fatigue but to those of us who do, know that we then struggle to function efficiently. This friend simply told me ‘I needed to sort myself out, go to the doctors and get some antidepressants as I clearly was depressed’. Then following her ‘diagnosis’, left! This sadly is not uncommon. People believe that as time goes on and especially as we begin to visually look better, we must surely be recovered!

They do not begin to comprehend what those of us who do battle fatigue juggle in order to carry out normal activities.  Sadly, fatigue is something that continues to be a difficulty many, many years after the initial brain injury. That said, we must not give in to it in such a way it takes over totally. Despite struggling to accept it, I have to incorporate a sleep into my everyday plans; if I fail to do, so I become unwell. For instance next week I am doing something I am very excited about and will be able to tell you soon, but when everyone breaks for lunch and goes off to socialise and chat over their lunch, I will be forced to sleep for that hour as well as late starts and breaks in between what we are doing. If I was to try any other way I would not be able to carry out what was planned and I would become unwell quickly, then unable to do anything at all for many days to come.

As soon as fatigue kicks in it is as though my mind becomes clouded and confused; this can happen as quickly as the flick of a light switch. When this happens carrying out everyday activities becomes impossible. We forget for instance a computer password, or bank pin number that we otherwise know easily, attempting a telephone conversation can leave you agitated, irritable and drained and the only relief from this is to accept what is happening, give in and lie down and sleep.

This can be caused by stroke and other kinds of brain injury, or it can be because of the neurodegenerative process, such as multiple sclerosis and Parkinson’s disease.

If you talk to other people also struggling with fatigue the general discussion is always the same: that they have for so long felt alone in their struggle, that they are facing the problem alone. Also, that it is as if the brain simply shuts off, this is how I personally describe it; others say it is as though a wave passes over them out of nowhere.

It has been identified that when people are asked to open up about their symptoms more than 60 percent of people with brain injury report it as one of their primary symptoms. Yet, despite this, people are not being asked if they experience this as one of their symptoms, were you asked for instance? Have you been helped with it if you experience it? I know if I was to be asked these two questions my answer to both would have to be no. Yet, it remains today a huge problem for me. Following brain injury, the doctor’s primary concern is whether the patient can feed, dress, and wash themselves – fatigue may only become apparent much further down the line as we try to go about our daily lives, this is when we are having to also take control of our future recovery, help has long since stopped.

As those of us who struggle with fatigue know it is a very different thing from being simply tired, an absolute ‘treacle brain’ before the breaks go on totally. Fatigue presents itself suddenly and when it feels like it there is not a pattern. The simplest of decisions, for example, become too much to handle. You are asked which sandwich filling would you like, which is too much to cope with. Suddenly you find that however positive you may normally be now you cannot be bothered with anything, you no longer have any enthusiasm and you lack motivation. It can also bring about mood swings along with irritability.

You may also feel disconnected from the world.

It is such a complex problem that doctors are still struggling to explain exactly why the brain damage creates this. Perhaps if certain connections are damaged, then the brain is not so efficient at transmitting information, so it gets tired more quickly.

Ekaterina Dobryakova, a research scientist at the Kessler foundation in New Jersey, has been investigating the corticostriatal circuit, which is involved in processing pleasure and motivation in the brain. Normally the signals back and forth compare the effort of an activity with the potential reward, this depends on the neurotransmitter dopamine, if this dopamine production is disrupted the mental calculation may go awry, so even the most mundane activity feels like an uphill struggle. Certain forms of brain injury do have abnormal activity in these regions and those differences appear to correlate with the levels of fatigue. Trials are ongoing but a drug known as Ritalin may help with this in boosting levels of neurotransmitter washing around the brains synapses. This however is only one small piece of the puzzle that can cause the mind to tire more easily.

In the meantime we can continue to try and manage it in our own way by sleeping when our bodies tell us we need to, also incorporating some form of exercise into our weekly routine and practicing mindfulness meditation. I mention all of these in my book. I know how they can help and I am not alone in my belief how important all three of these are.

Leave a Reply

Your email address will not be published. Required fields are marked *