Today, I had a really testing day but I also learned so much. I learnt more about myself and my condition, which is strange because when it comes to Addison’s, I’m usually the smartest person in the room. So I thought I’d share my day with you guys. I apologise now for the awfully long post, but on the bright side, you don’t have to read this.
At half 9 this morning, I had to attend the outpaitents department at my local hospital to have a short synacthen test done. Now I know many of you don’t know what one of those is, so let me explain it. They take your base blood and then inject you with this awful liquid that was imported from Italy, because there is a national shortage of it here, the same as my emergency injection kit, but i’ll get into that later. Then they wait half hour and an hour after injecting you with the syrum so they can see how your adrenal glands react. I had to have this done because after I gave birth to my little lady, some idiot doctor took me off them, when my blood pressure sky rocketed due to an infection. I then had to fight just to be seen by an specialist in Endocrinology just to get my tablets back because my gp was saying that my diagnosis wasn’t there so I didn’t need them. For the last 14 months, I have gotten sicker and because I haven’t had my steroids, I’ve had to taken extra care and a lot of extra naps, just to get me through the day. Hopefully after having this test today, ill be back on normal steroids again!
I was really grateful that the Endocrinologist nurse that was going to be doing the test was Jennii, because I already knew her and she remembered me. With a name like Ferrari, i’m a little harder to forget. I met her back in March 2013, when she was the nurse who gave me a day curve. . Again, this is another blood test, only this time, they are testing your blood to check if you’re on the right amount of steroids. I had the day curve on the Friday, which I slept through because I was actually quite sick and then on the Monday, I was in hospital with suspected appendicitis. For someone who cannot stand needles, I absolutely hate these tests. Yet, she remembered how much I couldn’t stand them and tried her hardest to keep the cannula open because she only wanted to give me one needle today. With a lot of hard work and pumping, we managed to keep the cannula in all day! We got talking about how I had been since she had last seen me and that she was surprised to read that I had given birth and even more surprised when she found out it was at the same hospital I attended today. And I mentioned everything from mental health to my blog and my novel and she was the one who gave me the idea for this post.
I have had so many people ask me about my condition and it wasn’t until today that I could really explain it. I mean sure, we can discuss the medical terms of what it is. I don’t produce the hormones that I need in order to fuction. I have no immune system and my body attacks itself. The adrenal glands are little glands that sit on top of your kidneys, they release hormones at different points of your day and get you through it. Before you wake up in the morning, your body would have already released cortisol into your system and that’s why you have the energy to get out of bed in the morning. Mine don’t work to an acceptable level which is why I was on steroids right up until Luna was a week old. Instead of fight or flight, I have fail. My body goes into a crisis when under extreme stress and then it shuts down. I have two hours to inject myself and in extreme cases get to the hospital because I could go into a coma. How do you explain to a healthy person what it’s like to be sick? How do you explain what it’s like to have an autoimmune disease? How can I explain to everyone else the daily struggles that my life became at the age of 19? Well today, Jennii told me the answer and its the ‘Spoon Theory’ by Christine Miserandino, I would strongly suggest checking out the actual article, The Spoon Theory as I really will only give you a cliffnotes version.
She explains that Lupus, another autoimmune disease, is like starting the day with 12 spoons. Healthy people, don’t have to worry about their spoons, because they have a seemingly endless supply most days but for those that are sick, they have these spoons. You can never drop or forget about the spoons, the same way we couldn’t forget about our condition. You lose spoons for each activity you do throughout the day, because your body isn’t physically capeable of everything, you have to act accordingly. You can’t do as and what you please. You cant write a list of things to do for that day and expect to get everything done because your body can’t handle it. Before even starting the day, you have to get up and take medication. You have to take them, knowing they are what are keeping you with your spoons. You lose spoons before you’ve left your bed if you didn’t sleep well and even more so if you’re sick. The rest of day, you are limited and everything you do will cost you. Things people take for granted like doing the chores, can take me hours because I have to rest or my body pays the price with more spoons. I can take spoons from tomorrow but that would already put me on a deficit. Unlike healthy people, everything I do, I have to account for. I have to account for all the walking and exercise, for the lack of meals and lack of sleep. I have to account for physically stress that I put on my body as well as emotional and mental stress and most of the time, I use up all my spoons. So just hold on, because even though my life is limited and the pain can keep me in bed for days at a time, I still choose to socialise and even that costs me.
Now like I said, it was my understanding of her article that made me realise that if I explained my condition in this way, it might make a little more sense. Maybe people might understand why, especially at times when my body is attempting to battle an infection, that I’m a bit more reserved. Because I have less spoons to start the day and most of the time, its not enough.
After learning about the spoon method, I had to attend a therapy session and talk about how I was feeling. I had to talk about things that had gotten to me in the last month (I was quite poorly the last time I was supposed to have a session and then she went on holiday so it took longer than expected) and I just broke down in tears whilst she sat there and wrote goodness knows what down on her little notebook. She asked me how I was feeling and how I was coping. She asked about Luna and my eating. She just asked all these questions and I literally just cried because I was so exhausted from holding everything in that I just rambled. At the end of the session she had decided that I’m having a referral to a dietician so we can get me on supplements to make up for my lack of eating… So not only am I taking steroids, I’m going on supplements? Maybe I should hit up the gym and get massive… then again, maybe not. She also sat there and told me that my biggest problems and greatest drawbacks were confidence, self belief and self doubt. I have too much self doubt and not enough self belief or confidence. She said that I don’t see my self worth, I think that little of myself that I destroy everything good because I hit self destruct. I see myself as the problem for all the crap that I have had to deal with, and I carry it around to the point that it suffocates me. I think that little of myself, that I question why anyone would stick around, why anyone would care. And I need to change that. I need to believe in myself the way others do. I need to learn to love myself the way the most important people in my life love me. I need to believe that I deserve to be happy because right now, I am the only person standing in my way.
I hope you are okay. I hope that you haven’t been too exhausted and that you’re smiling. Because believe me, the world needs to see your smile. Until the next time, Ferrari.❤️