A reason to be upset or an amazing opportunity?

After 3 days of Parasitic Pain plaguing my body I finally started to feel a bit better yesterday. This sense of cautious elation was quickly obliterated when my phone rang.

It was a doctor from St Bartholomew’s Hospital in London.

He stated that I needed to come in to be admitted. It will happen on Monday. That gives me 5 days before I feel like a lab rat.

Due to the very rare and complex nature of PAS not an awful lot is known about it. This was exacerbated by my severe weightloss leading to the events of the summer. There is also limited knowledge and literature on refeeding syndrome which was only discovered after World War 2 when Jews from concentration camps were released and began dying when they started eating again.

Although the main crippling symptoms of refeeding syndrome have thankfully seized, my bloods are still unstable which could be indicative of a malabsorption problem. The combination of this has left any poor healthcare professional that crosses my path scratching their head. I knew my Professor wanted to carry out some more investigations but I put that to the back of my mind and carried on pottering around and attending my local hospital and doctors appointments.

My best friend

Now it is time to face it. What is “it”? Well, I am unsure as to what “it” is. The doctor on the phone was lovely and kind and reassuring but he could not tell me what tests they were planning to carry out or how long I would be staying for. I know my Professor wants biopsies from various parts of my digestive system as he stated this from my last visit with him, but other than that I am in the dark. The doctor on the phone just stated that I should “bring at least a few days worth of clothes and medication and we will go from there” and “Monday you can eat and drink because it will just be a settling in day”. “settling in day”???? I’m not moving house! I understand that results of some tests will determine the need for further tests which cannot be predicted but the thought terrifies me. I don’t want to go through the pain, anxiety and loss of control that hospital brings. Especially so far away. that is without all of the worry as to what they may or may not find!

Of course Grace the unicorn will be with me. And she asked me to see this in a different light………

Time to smile


I am under the lead endocrine Professor who is also the clinical advisor for ADSHG who set the UK National guidelines regarding Addison’s Disease. I am going onto a tiny specialist unit where people with rare complex endocrine disorders come from all over Europe. This bed alone will be costing a gulp inducing amount per night, and not only am I going in on the first day to “settle in” and be prepped on a loose plan for my stay, but I am receiving all of this world class treatment for FREE!! This is thanks to the amazing NHS. There is no way I could receive this level of care without the NHS and in all honesty I would not be here.

So I am seeing this as an amazing opportunity and I feel extremely lucky and privileged to be in the position that I am. It doesn’t stop the butterflies and tears everytime I think about next week as I don’t think hospital tests get any easier nor do you “get used to it”. You just learn how to keep Agro Anxiety hidden from view. I am not strong or brave as I did not choose to be born with PAS. I am terrified. I want to run away and hide. But life is like a game of poker and I have my poker face on. I am merely playing the cards I was dealt. I may not have the best hand but I will put on my best poker face. Anyway, this is the perfect chance to practise my CBT………. I’m not going into hospital………I’m going to oranges! Now that doesn’t sound so scary!

So between now and Monday me and Grace will focus on having as much fun as Ppain and Ffatuge allow me to before we face the oranges!

My dog Chip . . . .I’m going to play it as cool as her

2 thoughts on “A reason to be upset or an amazing opportunity?

  1. Gemma Andrea

    If you ever want someone to talk to while you’re in hospital (or otherwise) I’d be happy to chat. I was only ever in for a few days before I was diagnosed with Addison’s, but it was enough to start making me think I was going crazy. I hope what they want to do takes less time than they think. I’ll be thinking of you xxx

    Liked by 1 person

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