The route after brain injury and / or Cognitive FX is not a straight line up. It is a process with highs and lows. When you experience more symptoms it is often difficult to stay positive, it can be very discouraging. At least for me it can be. That is not (only) my fault, my personality or my psychological state. This is also due to the type of symptoms and their effect. It is also because of how the brain works. You can read more about this in this blog!
In the last few weeks I have been very busy practicing and training again. I do all the exercises for my eyes again and together with my mom we do a lot of cognitive training. I am very happy with the latter, every time mom plans everything out for our 'session' and we make it as challenging as possible. Exercising is still not going the way I would like it to due to my hamstring injury. I very careful and slowly try to build up exercise to prevent me from doing too much and not being able to do anything again. After I told you in the previous blog that I had done the interval training three times in that week, I couldn't walk again after that. Oops! So I take it step by step now.
When I suffer more from my symptoms a number of things happen. First of all the complaints themselves; headache (all day, or as good as the whole day), little energy (or just terribly tired), less overview, blurred vision, more tension in the muscles of my back, neck and jaws, less concentration and more sensitive to stimuli (not comparable with the sensitivity before my USA trip but it is still there). Then I think: "Have I done too much? If so, what then? What can I do best? Rest? Continue? Do I have any appointments? Do I have to cancel something? How can this be happening again?" When the pain and fatigue is high, it becomes more difficult to put things into perspective. So if I am not careful I quickly end up in: "You see, the headache will just stay the rest of your life. Why do I always want to do so much? Well I didn't do that much. Actually, I can do so little. Maybe I can never do more than this." Then I know that if I want the symptoms to decrease, there are a number of things that don't help, such as (social) situations with a lot of incentives, situations where you don't know people well and a lot of the "gosh what do you do for work?" questions (if I don't feel well I will only feel more excluded from the world), activities where I have to concentrate, double tasks and computers. So I am going to avoid these things. That usually means that I am alone at home a lot of this time.
The link between brain injury and depressive thoughts
Let's face it, they are not the most positive thoughts described above. And that is actually not strange at all. The symptoms that come up for most of us with a brain injury have a huge overlap with the symptoms associated with depression. When I look at the list of symptoms at the Dutch Depression Association, I see 11 out of the 15 psychological and cognitive symptoms that have an overlap with brain injury symptoms: feelings of guilt, lack of confidence, (failure) fear, despair, powerlessness, quick anger or irritated, indecisiveness, lack of ability to solve problems, much worrying, concentration problems, forgetfulness, slowness, difficulty in thinking, restlessness. With physical symptoms this is less, but still 3 out of 8: fatigue, no energy, headache, pain in the back, joints or muscles, dizziness. Add to this that the whole situation can make you feel left out of the world at moments, make you gloomy and lonely and voilà you have the ingredients for depressive thoughts.
The step to negative thoughts is not very large and it is therefore not surprising that many people with brain injuries sooner or later have to deal with depression or feelings of depression. A major scientific study from 2009 already showed that 42% of people with brain injuries 'meet' the number of symptoms for major depression. The most important symptoms? Fatigue (46%), frustration (41%), and poor concentration (38%). Symptoms that also belong to brain injury. Later research shows that 20-40% of people who suffer brain injury in the first year experience depression, but that ultimately 50% of people with brain injury have to deal with it at some point.
This maybe isn't the most hopeful message, but it is reality. Can we now just all give up and request a group discount on anti-depressants? Certainly not for me. I think there are a number of things you can do to prevent you from ending up in a negative spiral. For me important tools are:
guidance from a psychologist or creative therapist.
walking in the outdoors.
sports. Only if that's possible of course. Before CFX I went to pilates but other sports didn't work. Then I walked a lot and now that I have my hamstring injury I go back to that again.
create a gratitude list in the evening. Write 2 or 3 things in a notebook every evening that you are grateful for. I have done this very consistently at times and when I am less comfortable I always fall back on it. No matter how small, it works for me.
in periods with many symptoms after a few days of rest, consciously seek contact with others and I will be try to be among people. Being alone for too long has an adverse effect on my mental health.
I think the most important thing is to realize that it is quite normal to sometimes not feel great mentally. Know that you are certainly not the only one and that it is not strange. It is quite a lot to all take in. It is important that you do something about it because the further you are pulled into the negative spiral, the harder it is to get out. So look for help when needed.
How do I get my motivation back
Everyone has their own way of finding motivation (for exercises, for retrying, for hope, for acceptance, you name it). What works for me may not work for someone else. There are a number of things that keep coming back in studies that help many people. Think of movement (preferably in nature), meditation, talking about it. In the periods that I have more symptoms I try to give priority to the things that I know help me. The list above helps me if it gets tough mentally and there is an overlap with what I do if I don't feel well in terms of symptoms. That makes sense because the two are in line with each other.
When my symptoms are more severe than 'normal' I try to go outside every day, for example by walking along the Maas for half an hour, taking good care of myself through tasty and healthy food and I try not to be too strict on myself. What works very well for me is literally saying to myself: I report sick today. Not with an employer but with myself. That gives me the peace and quiet to take a day full of rest and especially 'permission' to feel very bad for a moment. It can also help me to do (part of) the exercises, so that you still have the idea that you have done something on such a bad day to hopefully feel better in the long term.
One last addition
Something else is also playing a role. If you have a brain injury, this may mean that you suffer from 'adynamia' problems (also called initiation problems). These are a kind of start-up problems of the brain that can also get in the way of your motivation. I also have to deal with this myself and besides being extremely awkward, it is also difficult to explain to others. In the next blog I will try!