Hi, my name is Beth many of you know me as “Beth’s Chronic Diaries.”

This past year has been the hardest of my life. I’ve spent most of it fighting for my life in hospital. After 4 long months of being admitted, doctors found a brain tumour , a microadenoma on my pituitary gland.

This tumour has taken control of my hormones and caused unbearable symptoms; constant agonising headaches, dangerously low cortisol, vision loss, galactorrhea, severe mood and personality changes, and more.

On top of this, I live with multiple complex chronic conditions including:

• POTS (Postural Orthostatic Tachycardia Syndrome)

• Hypoglycemia

• Scoliosis

• Seizures and dystonia

• Complex GI issues and incontinence

• Salivary gland cysts

• severe Airborne allergies

• A severe skin condition suspected to be caused by MCAS (Mast Cell Activation Syndrome) and some other underlying conditions

• Suspected EDS (Ehlers-Danlos Syndrome) and PCOS and more.

Earlier this year, I had to have a surgical PEG-J feeding tube placed after my health declined rapidly over the past year, I was relying on feeding tubes to support my nutrition and meds But a few weeks later after it was placed , I was rushed into emergency surgery after life-threatening complications, the tube had been dislodged, leaking feed and medication into my abdomen. I had a bad experience having my pegj placed and unfortunately my post op care was not managed at all and symptoms were dismissed as just “gas” until it was too late and I was in septic shock and my organs were shutting down. A massive internal fluid mass build up crushed my organs and lungs, causing my body to shut down. I nearly died that day and I was sedated for several days after, spent days in the icu fighting for my life. I then endured months of complications ,infections, sepsis, wound issues, allergic reactions, paralysis, spasms, and many more scary symptoms in hospital.

Sadly, instead of being supported in recovery, I was repeatedly dismissed and gaslit by healthcare professionals. I was eventually discharged with no feeding tube, no stable way to receive nutrition or medication, and no clear plan! even though doctors acknowledged I couldn’t safely eat or take meds orally. They decided to say after all these years of battling these conditions I should just try to eat and endure the pain and seek physiological help. This infuriated me and my partner and mother so much as I have fought so hard over the last 6 years to get to this point where we were finally in the position to say enough is enough what more do you need to see to tell that my body is attacking itself and I can’t go on like this. I was deeply upset as they made me feel like this was all in my head and if I just ignored the pain I would be fine.

For the past year I have tried every diet change, every medication, eating orally , nutritional shakes and nothing worked that’s why the tubes were first placed and when my body kept rejecting them and they caused complications that’s why the pegj was mentioned. And we were told by my gastro that If any complications did occur after the procedure we would look into alternatives like a surgical JEJ , or others but this wasn’t the case and instead I was gaslit and dismissed and made to look like a fool. They even used my social media against me saying I quote “ patient is dependant on hospital based management and we have concerns about social media activity reinforcing her health narrative ” I have never been so angry because I avoid the hospital at all costs I do eveything I can to stay out of there because of what they have done to me. And if one doctor took a look at my media you would be able to tell how much I use it to show exactly how miserable and limited my life is because of my illnesses. I raise awareness of the seriousness of allergies and show people exactly what my life is like. How much pain I go through with each flare up and every symptom I face. I couldn’t believe they would stoop that low.

I’ve tried my best to eat on my own, but I often vomit for hours or end up in severe pain. I am now living of a nutrition drink a day that I usually vomit shortly after. Being on TPN for a couple months I managed to gain some weight back that I desperately needed and now I am loosing all the progress I made. Progress I made in physio, my weight, my energy everything.

I have missed out on 6 years of my life. I can’t work. I can’t walk anymore. I can’t look after my little brother alone. I live in fear of going into anaphylaxis from a random smell. I can’t enjoy dates with my partner. Every day is a struggle, and sometimes, I wonder if I’ll survive the week.

I was meant to be seen urgently by an NHS endocrinologist for my tumour weeks ago. The appointment was cancelled and pushed back again. They now say I may not be seen until September or October. But I can’t wait that long. My other doctors have had to pause treatments for my other conditions because I am too unstable until this tumour is addressed.

That’s why I’m asking for your help.

I need to go private to be seen as soon as possible, by a specialist who understands pituitary tumours and the complexities of my case.

its not okay enough is enough I shouldn’t know what it’s like for my own flesh to burn open every day in open wounds risking sepsis day after day and other scary infections and symptom. I shouldn’t have to live with chronic pain every day with no answers and not knowing when I’ll next end up lying in a hospital bed not knowing if I’ll wake up the next day.

I am fundraising to cover:

• Private consultations

• Specialist treatments

• Travel expenses

• Ongoing follow-up care

I just want my life back. I want to:

• Eat a meal without vomiting or being in pain

• Take care of my skin without constant allergic reactions

• Look in the mirror and not fear the next flareup

• Walk again

• Go on dates

• Take care of my family

• Walk down the aisle one day

• Complete my bucket list

• And most importantly, stop living in fear of dying.

If you can help by donating or sharing my story, I’d be endlessly grateful. Every share could help me find the specialist that finally gives me a chance to heal. Every donation no matter big or small could help us achieve a goal. I know I am going to need a lot more than this initial goal if I want to find the right doctors to oversee my care but it’s not just appointments I need it’s testing that I have been refused. It’s blood tests and procedures that could help me get my life back and most importantly answers.

Thank you for reading. Thank you for caring. And thank you for helping me fight for my life.

— Betty

a.k.a. Beth’s Chronic Diaries