Addisons Disease and me.

Chances are if you’re reading this, you already know who I am. I’m a 23 year old law student at Staffordshire university. You’d know that I’m opinionated, stubborn, hard working and determined. On the other hand I can be, overwhelming, emotional, stressed and a down right pain in the ass. Everyone has those traits but hey, I own my faults as well as my strengths.

For as long as I can remember I have suffered with poor health starting with being diagnosed with Meningitis at the age of 6 months old. If that wasn’t scary enough for my family, it was the worst form of meningitis you could get, it was the killer that is meningococcal septicaemia. For about 5 days it was touch and go on whether I would pull through and survive such a deadly infection but I did or I wouldn’t be here typing this. From the age of 6 months old I fought to be here. I was the only child that went into hospital seriously ill and managed to gain weight being connected to a drip. I guess my body wasn’t prepared to give up. At the time, my family believed the only real complication to come out of it was that I suffered hearing loss in my ears to which still hasn’t fully recovered. Oh how wrong they were. As it turned out, my immune system took a massive hit that would show itself later on in my life. I would love to say this was the closest I had come to having a body shut down but it wasn’t.

At the age of six, I remember becoming very run down, high fever, sore throats and extremely tired. I was coming home from school and sleeping until dinner, eating very little then going back to sleep until school the following day. After a few days my mum took me to the doctors because it wasn’t normal and I was told that I had glandular fever and had to take some time off school. For me, this was hard because as a child I loved being at school with my friends. After three weeks, I was finally allowed back at school but only for half days because I was still very tired and run down. This continued for about two weeks before I was allowed to return on a normal basis.

Throughout my following years at primary school, I would always catch the flu which would result in streaming eyes and nose preventing me from being able to see and breathe properly meaning I would have more time off school and not be able to attend as much as possible. Like most people with a poor immune system, I would catch everything. I’ve had way too many water infections, chest infections and kidney infections in my life to know the signs before they become a problem. Because of this, I have quite a close connection with my doctors.

During my teenage years, I was in and out of hospital with water and kidney infections yet they couldn’t work out why they were always recurring. I’ve had way too many scans on my kidneys that always came back the same… there wasn’t a problem despite the symptoms saying otherwise. I have had suspected appendicitis three times. After the third time of being told I had it, despite my appendix being fine was the time the doctors and surgeons finally decided to remove it, and this was at 20 years old.

From the age of about 13, I would suffer with really bad mood swings, irritability, horrendous pains in my kidneys and I would lash out because I couldn’t control the pain so everybody had to know about it. One minute I could be nice as pie and the next I would be down right awful to be around. Everybody knew it and yet I couldn’t control my pain or my emotions because I was being told everything was in my head and I honestly felt like I was going crazy. I knew the pain was real but everything the doctors had tried, just wasn’t working so they had no choice but to say that it couldn’t be real.

At around 17, one morning, I hadn’t eaten properly and got up to make myself something to eat and I blacked out and collapsed. This was the first time of what would be many that I lost control and dropped to the floor. I hit my head which caused me to have a fit. At this point I was rushed to hospital where I had undergone a MRI scan to see what caused it and again they couldn’t figure it out. Two years of tests and scans and EEGs later, I was discharged from the epilepsy clinic and was given the all clear. Still with no real answer on why I had fitted which was really hard on me emotionally because again I felt like I was just going crazy.

One night in 2013, when I was 19, I had been at my mums celebrating my sisters birthday with family so of course there was a little bit of drinking involved, and before you start to assume, I wasn’t drunk as I knew I still had a 45 minute walk to get home. When it had come time for me and my dad to leave, I stood up and got a feeling I have had so many times before. My head had become dizzy and I started to feel unsteady on my feet. We waited about ten minutes before we set off so I could feel better. Unfortunately this wasn’t the case. Me and my dad had got probably two minutes from my mums house when I looked at him and said that I didn’t feel right. Now, my dad thought I was being my usual drama queen self and told me that I would have to ring my mum and tell her I was coming back because he wasn’t going to do it. Before I had a chance to reach for my phone, I blacked out and collapsed for the first time that night. When I came round, my dad asked if I was okay and I told him that I just needed to sit down and regain myself before we continued, so we crossed the road to sit on a little wall and before I had a chance to take a seat, I collapsed again. I came back round shortly after and that was when my dad had decided that it was probably best I go back to my mums, so again we crossed the road and again I collapsed. This time wasn’t like the last. I didn’t come round straight away and I had hit my head pretty badly on the concrete that my dad rang an ambulance for me and then called my mum. I don’t remember much from this night, but what I can remember is still pretty scary.

I remember coming round and speaking to somebody on the phone. I was that out of it, I couldn’t tell you if they were male or female, I couldn’t tell you if it was my mum or the ambulance staff. My dad told me after the whole thing happened that it was the staff at 999, but I don’t remember. I don’t remember what was said or how much time had passed. I just knew I didn’t feel right. By the time the first responder had arrived I was a little more with it but not much. He asked me the usual questions such as, did I have any pain? Did I know where I was? Among others but I don’t really remember them. He took my blood pressure whilst I was sitting down on the pavement because I was told not to move and it had returned to within a normal range. This was the point he decided I didn’t need a trip to the hospital so he phones ahead and cancelled the ambulance. By this point my mum had arrived, so I had both my parents and this paramedic looking at me confused. I felt like a right idiot because I didn’t know what had caused the recent bouts of blackouts. The paramedic wanted to test my blood pressure standing up just to be on the safe side. So with the machine connected to me, I stood up. That moment, my blood pressure dropped probably about as quick as I did and luckily I had people around me to catch me. Again I had blacked out, only this time the machine had shown that my blood pressure was low and that I wasn’t well. This was the point that the first responder phones for an urgent ambulance stating it was a code red… that is the equivalent to someone having a heart attack.

I don’t remember much about what happened next so most of the information I’m about to give comes from my family and doctors that have helped me fill in the blanks. Once I dropped to the floor, my body started to shut down, I had become extremely cold and my blood pressure and heart rate weren’t rising so I was told to sit in the first responders car until an ambulance came. I do remember that the lovely gentlemen didn’t leave my side and stayed with me even at the hospital until his shift finished. By the time I got to the hospital, I wasn’t with it at all. I was taken to resuscitation room because my heart rate was really low and that way I was able to be brought back if the worst happened. My body temperature had dropped again, to the point I was taken to a warmer side room and connected to a heart monitor. Every 5-10 minutes took my blood pressure and heart rate. My heart was beating less than 50 times a minute and because of it my mum had to keep resetting the alarm that would go off. I can’t remember this because the whole time, I was semi comatose. I didn’t have control of my body and I wasn’t even conscious.

I know both my parents had taken it in turns to be by my side, but despite them telling me that I woke up and was talking. I can’t remember it and don’t know what happened. Some point during the night, according to my mum it was between 3-6 in the morning I was moved onto a ward still connected to this monitor. Again I don’t remember. The next thing I remember properly is waking up in a ward with people around me and being told that a trainee specialist in endocrinology thought I had Addison’s disease and was that confident, she was prepared to pay the money to have a synacthen test done which would confirm her diagnosis. For those of you who don’t know, I’ll enlighten you. It’s four needles in the space of an hour and a half. They take your baseline blood, then they inject you with this magnesium stuff that you feel going throughout your entire body. It’s the weirdest and worst sensations I’ve ever felt to this day. Then they come and take your blood three more times at half hour intervals. This is to see if your body reacts with the chemicals and boosts your cortisol levels. Two hours later, they came back and she was right. I have Addisons Disease. It was finally the answer I have been looking for. It was responsible and still is responsible for my irritability, my pains, my blackouts and everything else. What I had gone through is what is known as an Addisonian Crisis, and they can kill people if not treated within a few hours as the body starts to shut down and all your organs can’t function.

At the age of 19, I was told that I would have to rely on tablets every day of my life. That during times of infection, stress and difficulty, I would have to double my tablets in order for my body to cope with the differences in levels. Because of this condition, I am ill probably more than I’m healthy. I’m not in control and I still collapse even now. Only I know when it’s coming and usually drop to the floor to prevent a crisis before my body brings me down. I have lost friends because I can’t always stick to my plans and because my emotions aren’t as easy to control as yours are. My body doesn’t react the same way yours does and because of it, I generally lose my head quicker than most. There are many times where I have had to inject myself in order to stay alive and it’s the scariest thing I could do. I hate needles and to stab myself really is my greatest challenge.

Now I told you guys I was stubborn, and with this condition it’s a blessing and a curse. I don’t admit when I’m at my weakest, I pretend to be okay even though I know I’m not. I have refused to take my tablets before and because of it I have gotten seriously ill. I have pretended that I’m okay and not doubled my steroids when I should which has resulted in irritability and mood swings coming back. I wish I could say that I was smart enough to know better but I’m too stubborn to admit that my body does in fact need help. And now recently, my mental health has taken a beating. I have tried to be strong for so long but I can’t sometimes and that’s okay. I have been diagnosed with severe depression and severe anxiety which is related to the addisons. Yet I haven’t let this hold me back and I refuse too. I am who I am. And who I am is a fighter.

Addisons Disease is an auto immune disease that affects one in every 100,000 people in the uk. My disease is that rare, I have had doctors google my illness in front of me. It’s where the adrenal glands that sit on top of your kidneys don’t function properly and by the time you have your first crisis, your adrenal cortex (which is the outer shell of the adrenal gland) is about 70% destroyed. Your adrenal glands are responsible for your hormones and they are extremely important in your everyday life. They help you fight infections, keep your body running smoothly and give you a boost when you’re stressed or emotionally drained. For those with Addisons, we don’t. We rely on a tablet to regulate everything because our bodies can’t. I mean I probably have more lounge clothes than normal clothes because there are days I physically can’t leave my bed. My life has changed so much that I can no longer travel on public transport without getting poorly so I’ve been advised to avoid it as much as I can. I can’t enjoy things that are high in potassium because it makes me seriously ill. I can’t do much that requires adrenaline without pumping myself with steroids and even then it’s not a guarantee it will work. If I have any sort of medical procedure I have to inform them and be put on a drip because I’m considered high risk. I have the same risk level as those suffering from a heart attack to the point I have to be red flagged under every medical staff that I see.

I haven’t written this post for sympathy or to make myself feel better. I wrote it because I want people aware that despite how rare my condition is, it is real and it does exist. It can affect anyone and you shouldn’t judge someone or call them lazy because sometimes despite how much they want to, their body just doesn’t respond. I wrote this because I am a fighter and I refuse to let my condition define who I am. I refuse to stand back and allow uneducated people to tell me that I’m putting my condition on and it’s not as serious as I make out. I am doing this because if just one person is able to educate themselves on something so rare but potentially deadly, that I could have saved a life.

 

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openupwithme

25. Mum. PTSD, EUPD, Depression, Anxiety, Post Natal Depression, Bulimic. Find me on Twitter @OpenUpWithMe; Instagram @OpenUpWithMe; Facebook @OpenUpWithMeBlog🖤

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