Following my brain subarachnoid haemorrhage (SAH) in 2011 I started a programme of specialist rehabilitation in early 2012. Rehab had various different elements, physiotherapy, education about my brain injury and occupational therapy (OT) among them. It was this last one I struggled with the most. The work we did around me cooking without constantly inflicting burns and scalds on myself seemed quite straight forward if not always successful, but the bulk of the work on managing fatigue was not.
Fatigue is very common after a brain injury and in all the assessments the rehab team had done before I started rehab they had noticed that my results were markedly worse the more fatigued I was. Fatigue is not just a case of being 'tired', for me it is a process of my brain grinding to a halt until I just can't think. I also discovered quickly that ignoring fatigue for too long made my body rebel. Several times I collapsed with no warning because my body could simply no longer keep me upright.
My first OT tried to educate me about fatigue management and the idea of the 'human battery'. Intellectually I understood the idea of not pushing through the fatigue fog, resting and conserving energy but in reality I had been pushing myself too hard for too long. The SAH may have meant I crashed to a total halt for several weeks but I was recovering and already getting back into my previous bad habits.
What did I do to relax I was asked. I read books, wrote blogs and watched films I replied. Well that is not totally relaxing is it was the reply. What do you do when you do nothing? I replied I did not understand the question. I was told to rest for 10 minutes a couple of times a day and do nothing. I hated the idea, could I at least listen to music I asked. I downloaded some classical music for meditation and managed to sort of rest. But then I decided to do my physio exercises while I was laid there and was swiftly told that most certainly did not count as a rest.
OT was a struggle for several months. I was assigned a new OT, one with children and we just seemed to click. She understood that with small people around it is just not possible to rest whenever and however you want/need too. I also began to realise that it was the idea of saying I couldn't do things that I really struggled with. To me 'can't' sounded weak. Realising that 1 word was charged with such negative associations was a real turning point for me. Together we hit upon the idea of positively prioritising, I started looking at what I wanted to do and working out ways of making sure I had the energy to do those things. I stopped trying to walk miles the way I used too partly because it was making my chronic pain unmanageable and partly because I finally accepted if I took the bus, even for small journeys, I would have more energy when I got to my destination.
We returned to the idea of me actually resting during the day not just to recover but also to build up energy for the next task. I was still not totally on board with the idea, laying down for 10 minutes just meant 10 minutes fretting about what I 'should' be doing next. But then my counsellor gave me a copy of Mindfulness: A Practical Guide To Finding Peace In A Frantic World. It was an 8 week course of mindfulness with guided meditations on the accompanying CD. I'd tried meditation before but trying to empty my mind seemed to just make it run at an even more frantic pace. Still I started reading the book and a lot of it actually made sense to me.
Mindfulness seemed to just be about truly being aware of the moment, paying attention to your breathing and just being. It didn't sound that hard so I gave it a go. The first time I tried it I was hooked. I didn't have to try and empty my mind of everything I just paid attention. My mind wandered but that is what minds do and I was encouraged not to berate myself for somehow failing but instead to congratulate myself for noticing my mind had wandered off. As my signature on the Insight Timer app says, I'm taking it 1 inhalation and 1 exhalation at a time. Within that first week I noticed several changes, the 10 or 15 minute sessions once or twice a day were helping me feel more rested but they also alerted me to how emotionally fatigued I was.
Through watching where my thoughts went I saw that I spent a lot of time fretting about what might happen in any given situation and how I would deal with it. I was rehearsing arguments in my head which for the most part never actually happened. A prime example of this was my use of priority seats on buses and trams. I have a disabled travel pass because, well, I am disabled. I can't walk any distance without being in some pain. I get tired, my balance gets worse and I fall over. All very straight forward yes? No. I was entitled to use those seats and yet I always felt uncomfortable. I was aware I didn't 'look disabled' and occasionally I had heard tuts and muttering from other commuters but that was relatively rare. Yet every time I travelled I was hyper aware of where I was sat and what others might be thinking. It was exhausting and depressing. Once I realised what I was doing it became a lot easier to catch where my thoughts were going and then let them go. Now I don't consider what anyone else on the bus or tram is or is not thinking because I have no idea what is going on in their brain only in mine.
Another mindfulness meditation is called the body scan. This involves concentrating and experiencing each part of the body in turn. This was very difficult to begin with. I was aware there was a large disconnection between my mind and body before my brain exploded and that little incident had only made the gulf wider. I had tried to ignore pain and every other sensation from my body for so long that it had taken a catastrophe to make me stop and listen. Now listening to my body was even tougher. Laying there for the first time concentrating on both arms or both legs made me very aware for the first time at the difference in sensation between my 'normal' left side and my 'weakened' right. I realised I could be depressed by the realisation that there was a marked difference or I could just accept it because I couldn't change it.
I worked on the latter, I meditated and I became more aware of the negative thoughts I had about my post NCF body. I was putting on weight after so long being relatively inactive. Mindfulness wasn't an instant 'cure' it took months and self acceptance will probably always form a part of my meditation practice but recognising and challenging constant negative thoughts made a huge difference. Over time I have become not just better at managing my physical fatigue (although no ones perfect so there is always room for improvement) but I am also far less emotionally fatigued. It is easier for me to say I am disabled, I am heavier than I would like to be but these facts do not make me stupid, lazy, deserving of insults or anything else I used to do beat myself up with.
A few months ago I attended a mindfulness taster day run by Mindfulness in Sheffield and everyone there seemed to have a physical or emotional difference that meditation was helping them to live with. Accepting suffering always seemed like a pessimistic thing to do, like giving in and giving up. In reality accepting suffering does seem to make it easier to live with. Acceptance isn't wallowing or an excuse for self pity, acceptance is about self respect and self care. I learnt the hard way that ignoring the messages your body and brain are trying to communicate can end badly.
