My first adrenal Crisis was the most terrifying experience of my life, it's no exaggeration to say that I thought I was going to die, please don't think i'm being a major drama queen, I wouldn't wish it on my worst enemy. Here is a little of what I remember:
The spasms start again, this time from my neck. I can feel the muscle wrench tight as the agony strikes down every muscle and every bone rattles with the freezing cold that I can feel from my inside out. Sweat pours out of me but I need more blankets, the pain is endless and I can’t do it anymore, my legs tighten and my feet cramp. My hamstrings and thighs are burning with pain. I relax. Warmth spreads around me, 30 seconds later it happens again, this time I’m so sick and crying. Water is pouring out of my ears and nose, I am wet through and the only movements I make are out of my control yet I'm awake and aware I don’t have energy left but somehow I shout for help. Don’t let me die, just get me some help.
A nurse appears from around the corner and takes my blood pressure, it’s 180/90 and rising and my temperature, it’s slightly raised 37.8 and rising, I’m crying and reassured to relax and that a doctor will be with me. Dr Mohammed turns up, he’s lovely, he’s calm, he’s reassuring …. Until he turns to the nurse ‘Nurse I need this patient canulated now, she is seriously ill and I can’t get any medication into her’ I start to panic ‘please’ , I whisper, running out of energy, “ I really need you to help me cos I really feel quite ill” His manner is gentle and calm, “ you’re a brave girl, you will be fine I will look after you, can you tell me when you started to feel like this?” For the first time I feel completely out of control. There is something going horribly wrong with my body and I can't stop it. The Doctor speaks again, very gently and suddenly a calmness surrounds the room and I feel at peace, he’s going to make it better, it’s all ok. “ I gather my strength… “it started on Thursday….” I begin, feeling that all will be ok, until “THURSDAY???? He yelps? Why are you here NOW? Why not on Thursday??” oh dear, maybe not so calm. “you should have been in here on THURSDAY!”
I try desperately hard to explain to him that I’ve always been scared of hospitals and that Doctors blame me for being a hyperchondriac and I thought I only had a cold. He calms down and begins his work, giving orders to nurses who glare at him as he is frustrated that there is only ONE nurse available in resuss and she isn’t ‘qualified to canulate’. As the doctor reassuringly puts a needle in one arm and Alan holds it still Mum holds my hand. I’ll be ok, the doctor’s said I’ll be ok. It takes 40minutes. 40minutes of Cramps and full body spasms from my head to my feet and my body pouring with sweat. My trousers and the blankets are stuck to me. It’s the third change in blankets since arriving at the hospital. I start to feel warmth. In my hands first and my head and tummy. Gradually it spreads, the adrenaline and steroids are kicking in. Things start to become clear, visually and mentally. I see the doctors face clearly for the first time. He has dark skin and a kind look, mum’s eyes are red. Alan is talking to me, telling me i'll be ok.
They wait for my blood pressure to return to normal and take me to a ward. ACDU, the Adult Clinical Decision Unit. I lay on a casualty trolley in cold wet blankets attached to a drip giving me what my body can’t produce anymore due to the complete ignorance of Doctors who refused me ONE blood test. ONE blood test, two years ago and this would never have happened. Now, aged 28 I have a zimmer frame for when I cant take the weight on my legs. At the moment I hope to at some point have the strength to sit up unaided. I think of music. Desperately thinking I’ll never play again. The one thing that kept me going and I’ve lost that. People message me and call me and I reply to messages but not phone calls. I don’t want to talk to anyone. 3 days later and with the help of Mum or Alan I can make it from my bed to the ward bathroom. I want to go home, I want my own bed. 2 people have died on the bay since I’ve been here and it makes me feel I’m extremely ungrateful. I feel even more guilty as I think that even though they were elderly they were still someone’s relatives and I need to get out of there and pull myself together.
I go home with the permission of my consultant. Two days later I awake with a sore throat, I can’t walk, I can’t even use my frame, my hands won’t take my weight. I stagger to and from the bathroom until I can’t move anymore. The sweats have started again. I’m still on the anti biotics that I came home on, I can’t understand the relapse and the lack of strength. I need to get better. I must get better. I could cope with fits but I can’t cope with this, there is no let up. Alan and mum towel me dry and change my bedding and clothes, wet through with sweat but icey cold to the touch. Hushed discussion and it’s decided to call the Doctors on call. Alan has given my steroids and it’s not made any difference. The doctors wonderful, explains to mum to dial 999 and state ‘Adrenal Crisis’. After what seems like hours the paramedics arrive and after doing their checks get me into the ambulance. They need to administer Hydro Cortisone to kick start the adrenal glands. Again, they are calm and reassuring. Again I go through the same ritual. This time I’m questioned as to WHY did I drop the dose of my steroids back to normal!? I probably look as confused as I feel as the doctor calmly explains that while I am on antibiotics and run down I should be on at least double the dose of normal steroids and if I’m doing anything stressful I need to treble the dose. This comes from a team of doctors who for years have been telling me there is nothing wrong. Better late than never? Maybe, doesn’t feel like it at the moment though. So Epilepsy may be in the past and Addisons is my future but Epilepsy (if it ever was that) was a lot easier to deal with….. People had heard of that!
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