For the past 2 years I've been living with chronic pain, brain fog and fatigue. Although fatigue doesn't really begin to describe it; it’s more like having an elephant sitting on you making it hard to move your body and having your brain be complete mush.
To begin with I didn't have any idea of how to deal with it; I spent my days collapsed on the couch unable to do anything. After searching for the right GP and doing tonnes of research I almost have a complete support team including my family, my GP, an acupuncturist; exercise physio,and a team of pelvic pain specialists. With the support of this team I have begun to slowly learn how to manage my symptoms so that I can live a life that is simple, sustainable and meaningful.
Living with chronic pain can be debilitating and disheartening, but with the right support it is possible to find a way to be positive and live a fulfilling life. I have trialed multiple medications, some have worked for a while before stopping and others haven’t, but I've found the real help has come not from medications but from my own actions and the support I receive from my team. Pacing activity is the one most important thing I have learnt to do. By learning to listen to my body and recognising when to stop and rest I have managed to bring my pain down to a bearable level and increase my ability to live my life. One of the key things I did to help me listen to my body was to find a way to recognise that my symptoms were affecting me but they weren't me.
I did this by creating characters for each of my main symptoms so that when they struck I could say that they were just visiting and would go away soon. Foggy Frog causes all of my brain fog and feelings of fatigue and exhaustion and the Pain Gang, consisting of Gnawing Gnats, Burning Bats, Stabbing Spiders, and Needling Numbats, bring on the different types of pain I experience and that many of us with chronic pain face on a constant daily basis. The second thing that has helped me immensely has been daily yoga and meditation.
These activities help me to focus my attention away from my pain and decrease my stress levels. I started with only 2-3 minutes of yoga daily but have now built up to doing a 12min yoga session every day. I meditate at least once a day and usually more often as part of my rest in between activities. It is important when pacing to realise that both physical and mental activities use energy. I definitely notice that both types of activity can affect my pain and brain fog levels. My daily life generally rotates around my rests. I tend to do my yoga after breakfast and do an hour of work in the morning (my mental activity) then I have a rest.
Because both of these are high level activities for me at the moment, meaning they wear me out and increase pain levels quickly, I usually follow this with lower level activities like brushing my teeth and then reading. On days I know I have high level activities like appointments with my doctor or a visit from a friend, I tend to rest more and do less other activities. My current lifestyle revolves around pacing myself and listening to my body. Foggy Frog and the Pain Gang are my constant companions and I need to find a way to live with them. I am currently experimenting with a very casual return to work (1-2 hours a day, 3-4 days a week), but I am keeping my mind open to options of what I could do if a return to work is not possible without increasing my symptoms again. I am currently using my blog as a way to raise awareness and understanding for chronic illnesses that have invisible symptoms, like chronic pain, and to let others follow me on my chronic life journey, and there is a potential to increase this advocacy role.
I believe that having a chronic condition that gives you constant pain and brain fog doesn't mean you can’t have a fulfilling life if you have the right support team around you.