"Emotionally and physically worn down"

In February 2022 I woke up and the world was spinning around me the second I stepped out of bed. This was just the start of many horrendous and debilitating symptoms that I would gain and still to this day, I have no formal diagnosis and no real professional help. 

I am currently suffering from what I have been told informally is chronic urticaria and angioedema and hyperadrenic pots. I also believe I may have small fibre neuropathy and visual snow syndrome but the neurologist I saw said there was nothing wrong with me and again dismissed me.

I have also recently found out that I have Hypermobile Ehler Danlos Syndrome which is massively related to these syndromes. I have never had such bad care than the care I have received at both Lincoln County Hospital and my surgery. I have been told this is all in my head and that it is anxiety. I have been spoken to like I’m a liar and told off for wasting their time. I now have to wait to see a cardiologist for testing and a diagnosis and I have to wait another 9 months. I have to take four antihistamines a day (I have no allergies) and there aren’t many foods that I don’t react to. I can only wash my hair once a week as my forehead becomes covered in hives and hurts so badly. I have been told by Leicester allergy service that they won’t accept my referral until I have taken four antihistamines a day for two months and then I still have an 18 week wait. I have already taken 3 antihistamines a day since December and it’s barely helped.

Last night I lay on my bedroom floor and thought I am going to die. My skin felt like it was on fire, my throat was closing up and I was having horrendous adrenaline surges throughout the night. The only way to relieve the adrenaline slightly is to lie flat on the floor. This is my life most nights, I can’t sleep, I can’t rest or relax. It’s pure torture.

I feel like my life is over, my beautiful children have lost their happy, mum and my husband has lost his soul mate.

I am now suffering from anxiety and depression due to delayed diagnoses and any form of specialist help.

We literally wouldn’t leave a dog like this so why is it that I have been left to feel so scared and alone. I have lost all trust in the NHS and I honestly don’t know how I can carry on.