I have wanted to support the chronic medical conditions community for some time and highlight the accomplishments and challenges that come with managing chronic conditions and the lifestyle that usually comes with a new normal. Usually this is the side that is forgotten about when a medical condition becomes present. It is too common that we are asked how we are in regards to the medical condition, but rarely asked how we are managing with the new changes.
Quite suddenly the whole world has had to deal with a major threat to their health security and dramatic changes to their lifestyle for an unknowable time period. This is exactly what happens when faced with a sudden injury or illness. Initially, it doesn’t matter if it is a short or long term condition.
When we get the flu for a fortnight it disrupts our lifestyle, work and activity and we have to bunker down and rest. It feels like we have just lost the fortnight in productivity but we know we will resume normal life afterward. When we start to realise that our condition may be for the longer term, we then start to plan around it. If we break a leg we know that it will take a few weeks to repair and then some rehab work, but we also know that life will probably go back to the previous normal eventually. But when we have a condition that we don’t know how long we could have it for or if it is likely to be permanent, it can be really hard to adjust to the reality of the information, let alone make adjustments to your lifestyle. We end up in shock and mentally paralysed by not knowing what to do next. Sometimes we don’t even have information available to help us with what to do to manage. We have doctors that can tell us about the symptoms we are experiencing, some medication and treatments that might help, and a plan for when to see them again. We have to figure it out mostly by ourselves the physical, mental and emotional effects of what we are experiencing in relation to how we live our lifestyles.
Since I was a teenager I have been living with chronic pain, and a few years ago it became so bad that it completely disrupted my life and caused me to stop everything. My body was hurting and couldn’t take anymore – it was time to stop, investigate and heal. This journey over the past few years has been a crash course in learning how to deal with medical uncertainty and isolation.
I realised the strangest thing when the COVID-19 restrictions started to increase around the world and affect us. It was that my lifestyle was not going to change at all with the restrictions because I had already been living a very similar life. I posted this thought on Facebook which had some mixed reactions. Some people thought it was funny, others thought it was an introvert’s dream life, and a few people who knew about my life in more detail were asking for advice on how to cope and manage. When I posted it, it was just a tidbit about my life, until I started thinking about it more later in relation to the responses and then I felt so sad that a lot of people don’t realise that there are people in the world living with chronic conditions with these lifestyle restrictions and limitations every day.
As someone who has had to deal with limitations, isolation and medical uncertainty for many years, I have so many experiences that I have learnt from and so much knowledge on how to cope in these situations, especially when they become long term and permanent. I don’t want to be another person giving out unsolicited advice, however I do want to share my experiences and guide people to find their own way to manage and cope in these circumstances. I have had to be wildly creative and innovative because of my limitations. Some of these suggestions took years to work out and refine. Some things we just don’t realize how much we value it until it is threatened and we need to prioritize it more than before. Just like with any suggestion, take inspiration from it and make it your own.
Initially I wanted to start this blog for the chronic condition community, and as timing would have it, a lot of these experiences and skills will also apply to people affected by the current COVID-19 pandemic.
If you have found this blog because you are now adjusting to life with a medical condition, I hope you know that even though it may be difficult, you are not alone. I have already weathered the storm that you are now entering. I went through it mostly alone and unguided, and I had to find my own lighthouses.
If you are trying to adjust to any changes due to COVID-19, know that everyone is going through it together and that collective power has strong magic in it. Many of the suggestions on this blog might help you too.
We have to find our own things that bring us to a stable place and I hope by sharing my stories that you can be inspired to find your own stability in the storm.
It feels like the right time to start sharing my light now we are all starting to feel the dark.
Take heart, I’ll keep the light on.