My Adrenal Crisis and the truth about how I feel.
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/prednisone tablets” 3-4 times a day. Without this medication my blood pressure would drop dangerously low resulting in a coma and death.
So how do I know how much physical or emotional stress my body is under each day 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 if I were to visit the dentist, fly on a plane or catch a virus- I would double my meds for three days. I’d also have to double up under extreme emotional stress such as a court case or the death of a loved one.
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. My body could not take the pressure and I went into a crisis at home.
What happens in a Crisis?
Well the symptoms 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 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.
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. 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 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 monitoring the stress levels on my body.
The Emergency Injection
Addison’s disease/ 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 9 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 need. I was not able to renew my script. I used my last injection this week. I no longer have another injection. I am told by Doctors I need to carry one at all times, the NHS cannot provide this. This is a nationwide issue and there are Adrenally Insufficient adults and children out without emergency medication.
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
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 the right amount during an adrenal crisis.
The 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 provide this until 1-2 hours after absorption. This means I cant physically stand in the mornings. (I can sit and type or read) I cannot do the things “normal people” do in the 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 blog. 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 £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.
Instead of give up I devised a plan. I decided to Blog about my health, along with the things I’m 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 intend to raise the money before my 37th birthday, before my daughter turns 12. She turns 7 next week.
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.
I have never felt happier since starting my Blog. It is my “happy place” and helps me feel relaxed and less stressed. Daysinbed 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 and blog about our Family dog Yoda.
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- now it is time to share.
If you would like to contribute, Share or Retweet my Gofundme URL, It would be much appreciated. http://www.gofundme.com/Angelamilnespump Even the smallest donation can help improve my quality of life.
You can read more about my Adrenal Experiences in the Adrenal Diaries.
Angela Milnes xx
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