I am a medical mystery. All my life I have lived with a chronic disease called Lymphedema Distichiasis.
It took many years for my parents to get a proper diagnosis, and my younger brother has the same condition. It is congenital. Oddly, our sister does not have the disease, nor has she ever exhibited symptoms. We were born with it. My illness manifests in the eyes. I regularly remove ingrowing eyelashes that grow on the wrong part of the eyelid and scratch the cornea. I use a selection of daily eye drops and ointments to soothe the pain of old scars, inflammation, blepharitis, and severe Dry Eye Syndrome. It is horrible. Living with undiagnosed illness causes a lot of mental and emotional stress, and when I was younger, this was not a consideration. I was expected to live a normal life, because I wasn’t really ill, never mind the fact that most of the time I couldn’t see clearly. The medical profession had no idea of the complexities of my congenital disease, and it is only in recent years that doctors have listened to my feelings and emotions regarding the situation. There is still a long way to go, and there will never be a cure for this. It hurts, in more ways than the physical.
Last week I took myself to hospital on doctor’s advice when I woke up with severe chest pain one morning. I thought it was stress. The doctors thought differently. They were concerned about my rapid heartbeat and the results they saw from my blood tests. They sent me for a CT scan. They discovered a nodule in my lung cavity. It looks benign and I don’t have any underlying health symptoms that would be connected to it. My congenital condition is completely separate, according to the doctors. They have requested advice from external agencies because they don’t want to interfere medically if that could potentially make me ill. I am left wondering what to do now. They wanted to admit me to hospital last week but decided I was safer at home due to the risk of contracting Covid-19. I was not specifically told to rest, and there is no medication because there is nothing to treat. All I have is a bit of mild pain and the sensation of a bubble in my chest when I breathe in. I don’t know how long it has been there, or if it has changed in size recently, causing the pain I experienced.
I have decided that this is a message from my body that I need to accept. No one knows what’s wrong with me. It would take a long time to explain almost twenty years of being with a man who professes to love me but has no idea how to care for me. There are personal issues, a broken family, unrecognised trauma from many years ago, and probably a lot more stuff that I have yet to uncover in my quest for optimum health. I have decided to take a holistic approach to health. It won’t take medicine, or a surgical procedure, or even a prolonged period of rest to make me better. I need to change my diet, my exercise plan, my daily lifestyle habits. I need to stop giving all of myself to people that give nothing or very little in return. I need to practice self-care. And that is what I’m going to do. Who is with me on this exciting journey towards good health and acceptance of what we cannot influence?
Are you Team Jack or Team Danny? Sign up now and receive your FREE copy of It’s Complicated from #TheRedcliffeNovels series set in Cornwall, England.