The System Is Failing Us All

Couldn’t be more frustrated.

The system is failing us all.

High pressures everywhere and I just want to let my guard down and be taken care of but I have to constantly exhaustively advocate for myself with conditions they don’t understand.

Checking in at hosp as an emergency this morning after a burn incident (don’t ask!) on my way to The Christie’s for a Short Synacthen Test (for my Addison’s disease)…. The test prep and burn sent my body into a shock it couldn’t effectively respond to. Without natural cortisol, I cannot respond and without my emergency needle which should always be with me but on this exception it wasn’t- it becomes a 1 hour time slot to flood my body with the synthetic version in a resus unit under supervision.

Sadly, I kept being given treatments which are unecessary and then red tape was restricting those few who did take the time and have the inclination to listen; they couldn’t provide the necessary care, but couldn’t act accordingly either and I kept repeating my medical needs in the hope someone would hear me.

She who thinks I’m a ‘bitch’ because I gently tried to explain that the doctor has prescribed extremely high doses of medications I need to stay alive, but a dose which is too high such as this will have expensive and detrimental consequences tomorrow….

To try to keep explaining that after having hundreds of mg of the stress hormone ‘Cortisol’ flooded through your veins for 12 + hours is really difficult because I’m emotional and lacking mental clarity….. I tried to explain through tearful eyes and she told me to shut up and take my meds as she has other patients to see, so I either take the overdose or nothing.

Let me be clear;

The overdose of this stress hormone will add up to the other doses and have a horrific, heavy effect on my mood for days to come.

In addition to the dark cloud it takes me hostage in, it also causes damage to my connective tissues.

Damage which means I’ll dislocate so much more for the next few days and therefore damage my joints for weeks to come- unless it’s my spine in which case, it’s forever.

With EDS, I cannot take this risk. I must find a balance.

The nurse who now refuses to treat me believed that I should either take ‘all’ and damage my connective tissues in addition to breaking the adrenal protocol and leading to a longer admission time and multiple MCAS reactions- one risk of which is anaphylaxis.


‘Nothing’…. I’m here because I had an adrenal crisis. It becomes life threatening very fast and resus took great care of me today to stabilise this, but, since then I should have had my levels checked regularly to ensure I’m stabilised .

No bloods or checks have been taken.

I should have lesser doses to wean my body down until discharge tomorrow.

This hasn’t happened.

But the nurse? She doesn’t care, because ‘she knows already’ and ‘doesn’t want to anger the doctor by querying his prescription’…. so she instead gets angry with me loudly and humiliates me loudly on a ward.

I’m so tired of advocating.

I am so so tired of explaining.

Education is the only answer.

I can hear the docs discussing it outside loudly misunderstanding and making assumptions which are incorrect…. and I wish they’d take a moment to talk to me so that we can clear it up- save them time, money and trouble…. and save my body and sanity.

I don’t know how much sense this makes. I’m fatigued and medicated.

I just needed to share my frustrations so I don’t sit crying in a corner bed on the ward like the annoying ‘anxious’ patient it’s all too convenient to tarnish me as.

– Addisons Disease & Adrenal Crisis protocol.

-Continued, clear communication & hand overs… (probably less stress & patient pressures required for this one. Please don’t ever mistake me as an NHS basher. I adore the service and the people in it…. but I despise the pressures they’re under and the consequences this has on patient care… and I despise policies which risk lives).

I look around my ward at the majority elderly patients and I wonder who would listen to them if they needed to stand their ground as I have?

Who would dismiss them as ‘deluded’ and ‘old’ .

Who would keep them safe or know otherwise.

I’m weary as hell but I’m determined to be the change I wish to see on any and every level within my power.

They had an incidental finding in my blood and have concerns about my liver. To be fair, it’s an organ which isn’t had much attention so it’s probably it’s turn.

Tomorrow, I’ll have a scan and know more.

If you’ve made it this far through my rant/ offload, then thank you.

And thanks also to Gwen, Family & D today for your help

I’m just done in today. I’ve had enough.


#EhlersDanlos #AddisonsDisease #AdrenalCrisis #EducationHealsIgnorance




Leave a Reply

%d bloggers like this: