My Adrenal Crisis and the truth about how I feel.
I recently had an adrenal crisis. Here is my experience.
Well I wasn’t planning on writing a post today. In fact I have been avoiding writing any posts simply because of the way my week turned out. I had my first adrenal Crisis in six months.
Many of you wont have heard of Adrenal Insufficiency (aka Addison’s Disease) but I was diagnosed with the illness in August 2013.
In a healthy body the adrenal glands produce the “stress hormone” Cortisol. When the Adrenal Glands fail and stop working, they no longer produce Cortisol and you are then labelled “adrenally Insufficient”.
The only way to provide the body with cortisol is by taking regular steroid “hydrocortisone mecication” usualyl in the form of tablets and around 3-4 times a day. Without this medication my blood pressure would drop dangerously low resulting in a coma and death.
How Do I Know I Am Cortisol Is Low?
So how do I know how much physical or emotional stress my body is under each day? How do I know my cortisol is low and and how do I know what dose to take?
The answer is not simple. In fact, I do not know! The doctors do not know! This is because every day is different.
I am not a robot. I don’t do the exact same thing each day, although I do spend a lot of time resting and sitting in bed.
I also don’t know how much emotional stress I will have to face each day.
What I do know is I am given a set amount of steroids to take and am told to “Double up” if my body is under extra physical and emotional stress. For example I would need to increase my medication if I were to:
In all three cases I would double my meds for three days. Heck I have to do this every time I have a period or I’ll end up in hospital heading towards an adrenal crisis.
I’d also have to double up under extreme emotional stress such as a court case or the death of a loved one.
- Emotional Stress
- Court Case
So why did I have an adrenal crisis this week after six months of prevention?
This time it was emotional stress. I wont say who, what or why but I’ve been placed under extreme emotional stress over the past three weeks and the final blow came on Sunday during a meeting where I had to defend and stand up for myself. Did it cause an adrenal crisis? Yes!
My body could not take the pressure and I went into an Adrenal crisis at home and was quickly taken to the hospital.
What Happens In An Adrenal Crisis?
Well the symptoms of extremely low cortisol can differ for different people but for me they are always the same.
I have sudden sharp pains in my chest and bowels. I had to run to the bathroom with sudden diaoreah. The pain is unbearable, if not worse than labour contractions.
I cry and moan and I want to vomit. John grabs my sick bucket due to the extreme nausea. I throw up.
Then my blood pressure begins to drop. I cannot think straight, I cannot stand, my muscles are weak, my body is wobbly, my head is dizzy and I start to slide in and out of consciousness.
Now that I know my own adrenal crisis symptoms, (and my husband knows them) we are able to recognise “this is the real thing” and get my emergency injection.
John grabs my kit, snap the glass vile, drawers 100mg of Hydrocortisone into a syringe, attaches a huge needle and injects me in my leg.
Does this hurt! Hell yes. Does my husband enjoy jabbing a huge needle into me? No! The injection site is traumatised and it hurts for hours, but not as much as the stabbing pains and the dull ache of my adrenal glands under my chest.
How Am I Supported During As I Head Into Adrenal Crisis
Once I’ve been injected with meds, my husband calls an ambulance. They come and take me to the local A and E. My BP is low, however the injection has an immediate effect and begins to raise my cortisol levels.
I lay in the Hospital bed recovering from my incident. My BP is still very low but slowing increases. I need to have my bloods checked. I need to have my heart monitored. I am cannulated and given fluids along with paracetamol for the adrenal pain.
The Doctors send me upstairs (after hours of waiting). I lay in the assessment unit unable to sleep due to the steroid meds. Steroids make you feel wired and it’s always best to give a huge dose around 100-200mg when I am in A and E as it prevents the final blow which would if left untreated end up in death.
My BP is checked through the night. I am given more fluids. The next day, I am seen by a team. They want to know what caused my crisis. As soon as my BP is back in range, I am told to go home, double my steroids for three days and then drop back down to normal.
I am left feeling weak and exhausted. My sleep pattern is out of wack. I am still wired. I cannot walk. My muscles are sore.
After a few days my body returns to my regular, sore, painful and tired state and I continue the process of monitoring my stress and cortisol levels on my body.
The Emergency Injection For Adrenal Crisis
Addison’s disease or sedondary Adrenal Insufficiency is a rare illness. Unlike Diabetes or other endocrine disorders the hormone level cannot be measured in an instant. There is no pin prick test, therefore the chances of a crisis is increased.
Having an emergency Injection can be life saving. I have learnt after having 12 crisis since 2013, that the sooner I am given an injection the sooner I get better.
If I am injected at the scene, I return to normal within 48 hours. If I have to wait until I arrive in hospital, my stay in hospital in longer.
In November 2014, all pharmaceutical companies in the UK ran out of the emergency steroid medication that I needed.
I was not able to renew my script. I used my last injection this week. I no longer have another injection. I was told by Doctors I needed to carry one at all times, the NHS could not provide this. There was a nationwide issue and there were Adrenally Insufficient adults and children out without emergency medication.
I make sure this will never happen again by having a few back up packs at home and I take one with me wherever I go.
Adrenal Insufficiency is a killer. I see articles in the news and hear about deaths every few months. It really is a scary thing. Research show that people with AI have a shorter life expectancy rate.
The Cortisol Pump Also Known As The Adrenal Pump
- My thoughts before I got the adrenal pump in 2016
I want to raise the funds to get an “adrenal pump”. This is a small machine, similar to a diabetic pump which slowly releases cortisol into the body at a set rate. it also has an emergency option to release bolus medication when you require a boost of cortisol.
The Adrenal Pump would be great because Cortisol would be released in my sleep to ensure I have the energy and strength to get up on a morning.
Tablets do not metabolise until 1-2 hours after absorption. This means I cant physically stand in the mornings. (I can sit and type or read) but I cannot do the things “normal people” do in the morning. I feel dizzy and sick and my blood pressure drops low every morning.
My body spends the day recovering from the fatigue I have in the morning and this has a knock on effect during the day causing me to feel chronically fatigued. This is why I need to use a wheelchair.
If I stay in bed and don’t walk around I can manage my health. If I stand and walk, I get dizzy, nauseous and sick. It is better to not stand up.
However in a real world, I have to stand. I have to do things as a parent, I cannot sit in bed permanently. This would be misery. My health would not be cured with a pump, however my morning fatigue and knock on tiredness would significantly improve and I might be able to do much more ‘normal things”.
I am blessed I can sit and write and use my brains. I can write this blog from bed or the sofa. This is my world. This keeps me sane and happy. I have developed friendships with people around the world and am so so happy about this.
To get the Adrenal Pump, I need to be patient. I have to wait for the UK government to approve the meds which may take 5-10 years or I could travel to the USA and get everything sorted over there. This would be expensive. Flights, hotels, specialist fees, blood tests, the Adrenal pump, lines, needles, 1-2 years supply of meds. I worked out I’d need around £9,000 to get started and cover the first two years of treatment.
I tried creating a GO fund me account. It failed! No one was interested. Well that’s not true, I received 2 small donations which I am truly grateful for but this was not enough to get us to the airport.
I would have loved to give her a Mad hatter’s tea party and create all the little cakes and biscuits, baked and made decorations but I cannot. I don’t have the energy. I booked a party at a local play area and the party will be catered for by them! It costs a bit, but I got a good deal in return for blogging about the party location.
So, until I earn the money I need to improve my life and that of my child and husband, I will continue to have many days in bed. I will continue to blog about my Family, our experiences and our life- I’ll even continue after getting the pump- I have fallen in love with blogging.
Getting The Adrenal Pump
- Update 3 years later – I got the cortisol pump!
Instead of giving up I devised a plan. I decided to blog about my health, along with the things I was passionate about. I figured if I could build a successful blog, I may be able to save the money myself.
I made my “5 year Plan” I intended to raise the money before my 37th birthday, before my daughter turned 12.
I got the pump when Sylvia was 8 years old. It cost around 6 thousand pounds to do everything including get set up and pay for one years worth of medication. I saved part of the money myself and we took out a huge loan. We sacrificed so much to get what we needed.
Half the challenge was money but another part of the challenge was finding a doctor who prescribes the adrenal pump. That was a huge challenge and delayed accessing the treatment.
The Adrenal pump is a very rare treatment and there are only a handful of people in the UK and around the world that are currently treated with the Adrenal Pump. In fact many endocrinologists don’t have the knowledge yet or experience to feel comfortable to proceed with the cortisol pump.
Whilst trials are slowly taking place in different places, it is going to be many years until this treatment is available to patients of Adrenal Insufficiency who might benefit from adrenal pump therapy.
Here is an informative video on how I use the adrenal pump. You may find it super useful!
Blogging about Adrenal Insufficiency
I have never felt happier since starting my Blog. It is my “happy place” and helps me feel relaxed and less stressed.
The Inspiration Edit is a place that I can share my difficulties and hope to inspire others. I can also record the adventures of my family and write funny and hilarious lists, share brilliant DIY tips, share crafts, fun food ideas and blog about our Family dogs Yoda and Casper.
I did not expect to write this post. I can’t believe how long it is but I have gotten my feelings out and written them down. I will keep sharing my life in the hope it inspires and helps those around me.
Now it is time to share.
Update: Since writing this post I have managed to get a cortisol pump also known as an adrenal pump and it is really helping. I am still unwell every day but the morning fatigue and blood pressure issues I once had every morning have improved.
My fatigue improved to a certain point, however I still suffer from chronic fatigue daily.
I have managed to avoid hospital and adrenal crisis for two years by using an Adrenal pump and when I get low in cortisol I can quickly bolus extra medication and treat it quickly.
That is the true miracle, being able to stay home more with my daughter even if I am still sick.