Meet Dunstan. Advocate, Sickle Cell Warrior, Scientist, Blogger and Foodie.

For me Sickle cell anaemia is like a beast kept in a cage within me (like Naruto if you’re into anime!). When it is locked up and sealed away I’m just like everyone else. No pain, no fears, living life. But should the shackles come loose, the cage broken then the beast is set free to take over. I begin to feel the changes take place, the sickle cells circulating all over the body until they reside over one or multiple areas. Maybe in my knee or my back or my arms, it could be anywhere. Then the fight begins, the fight for my health, to return the beast back to its cage. There’s an interchange between consciousness and unconsciousness. My breathing is accelerated, body sensitive to temperature and pain pulsating throughout my body.

“Pain is temporary. It may last a minute, or an hour, or a day, or even a year, but eventually it will subside and something else will take its place. If I quit, however, it lasts forever” – Lance Armstrong

So how do I manage such pain? Well first and foremost prevention is better than cure, I do everything I can to ensure I don’t have a crisis. Drink plenty of fluids, maintain a balanced diet and try to do moderate exercise. Unfortunately there’s a bit of an inevitability that I will get a crisis whether its days, weeks or months before the next one, one will come. Just before a crisis starts I like to get myself ready by getting the medication I need, a hot water bottle and loads of bottles of water in order to make sure I am as comfortable as possible. Sometimes there is no warning but now I sort of feel it coming say about 3 mins before the pain kicks in. I try my absolute best to manage my crises at home and usually I’m bed bound for a while so preparation helps if I’m by myself. Mostly for me I get a crisis at night so I don’t sleep at all. So to distract myself I start binge watching a lot of shows because with the pain I’m in it feels almost impossible to sleep. Once morning hits I decide whether it’s painful enough for me to go to hospital or stay at home. After all these years I know the difference between a crisis that I can manage and a crisis I need to go to hospital for. That kind of judgement comes with experience and age but the most important is doing what is going to get you feeling better sooner.

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Post by @DD_Dunstan @sicklekan_