I recently wrote a blog post which was a bit of a health update and talked about my diagnosis of Addison’s Disease. Much like my other health conditions, Addison’s Disease is classed as a rare disease: approximately 8,400 people in the UK have Addison’s disease. Addison’s is also known as as primary adrenal insufficiency or hypoadrenalism, affecting the adrenal glands, which sit just above the kidneys. The adrenal glands produce two hormones: cortisol and aldosterone. When people have Addison’s, their adrenal glands are damaged, resulting in not enough cortisol and aldosterone are produced.
Being diagnosed with Addison’s has come as a huge shock and I don’t think that the seriousness of the illness has sunk in. I have been ill for years, but this scary ill, as I probably said in a previous post. The early symptoms of Addison’s a lack of energy, muscle weakness and loss of appetite, all things that I experienced anyway and were my normal. It will be interesting to see if the medication that I’m now on will make a difference.
With treatment, symptoms of Addison’s disease can largely be controlled. It is treated with medication to replace the missing hormones: I will be on medication for the rest of my life. However, people with Addison’s disease must be constantly aware of the risk of a sudden worsening of symptoms, called an adrenal crisis. This can happen when the levels of cortisol in your body fall significantly. It was really unfortunate that I experienced my first adrenal crisis on the same day as diagnosis. I have a lot of gaps in my memory with regards to my first adrenal crisis, which is probably for the best in some ways.
I am really lucky to have a medical team who are on the ball, I have received a phone call every day from someone in the endo team to check in with me and make sure that I’m coping okay. My friends have also been fantastic, I really cannot thank you enough. It means the world to me when people make the effort to read up about conditions that I’m diagnosed with to try and get a better understanding of what I’m going through. In fact, I’ve cried a few times from sheer gratitude.
But this brings me on to something that I just need to vent and put out there. I am not inspirational. None of this is a choice and I can’t wallow my symptoms away. I’m fairly open and honest about life, health and everything else but there are some things that I don’t share. I don’t always share the worst bits because it’s not appropriate, I’m not well enough and I want to keep a bit of dignity. I might joke about things, but that doesn’t mean that I’m okay or coping well with what it going on.
I find it so hard when people tell me that I’m inspirational because honestly, what choice do I have? I’m not writing to inspire anyone, or to be inspiring myself. I write because otherwise all these thoughts would be stuck in my brain and I would drive myself insane. I write because it gives me the freedom that physically, my body doesn’t give me. People often assume that people who are ill or disable are wondrous people, to be held with such high accolade. This is where I’m going to disappoint: I am just like you. I have good days and I have bad days. I watch shit TV, I can be grouchy and I can be off the wall happy. I can also be bloody boring at times but again, that’s the stuff that I don’t share because no one, I repeat, no one, cares if I plucked my eyebrows or tried a different shampoo.
Life can be really difficult. I have had to overcome things that other people my age perhaps would not have faced. But that doesn’t make me ashamed of my body and it’s wonkiness. Frustrated maybe, but not ashamed. Because this is my body and only am I allowed to pass judgment on it. I’ve had over 25 years living in my body and I’d like many more years. At times, I hate it. At times, I love it. Other times, I tolerate it as my home. It doesn’t always do what I would like it to do and that can make things challenging and it can lead me to question whether or not I can keep up the endless fight. My normal is not the same as your normal. Your normal is not the same as anyone else’s normal. I’m not inspiring for being normal.