For those who follow my blog you may be aware that I have Adrenal Insufficiency. This means that my Adrenal glands do not produce the stress hormone Cortisol and therefore I have to give myself replacement cortisol over a 24 hour period each day for the rest of my life.
It can be really difficult to know how much cortisol the body needs. The adrenals usually produce cortisol according to the circadian rhythm and therefore one would need a higher amount of cortisol in the morning to help them get up and start the day and less cortisol at night. Everyone is unique and each individual will require a different amount of cortisol for their body each hour of each day. Usually the brain will know how much cortisol is needed and will send signals accordingly to tell the body what to do.
Sadly when you have adrenal Insufficiency you are not going to know what you need every hour of the day. I had a day curve test completed to work out how much my body needed. This gives the Endocrinologist an idea of just how much medication to give me each day. The only problem is that when your spending a day in hospital having tests, your not exactly living the day how you would at home and every day is different so even with result, they are not going to be completely accurate and therefore the individual with Adrenal Insufficiency will need to constantly monitor how they feel and updose or take extra medication when they feel it is needed.
On Thursday I felt fine. In fact I decided to go to my church, a place I don’t go to as often as I would like. Whilst out I suddenly felt funny. I felt this sudden heat come over me and remember feeling really sick and awful. I thought to myself, I need to sit down and according to people in the room with me I collapsed and lost consciousness. When I woke up I was laying on the floor with people all around. I didn’t really know what had happened. A lady asked me if I had epilepsy and I said no. I was drifting in and out and wanting to go to sleep. I said I had adrenal Insufficiency and that I needed more medication.
I struggled for about 10 minutes to know what was going on properly but had the strength to reach under my clothes for my adrenal pump and press the bolus button which gave me the immediate medication I needed. I could have had an emergency injection but there was enough medication in my pump to get what I needed. I asked someone to ring my husband to pick me up and rested on the floor until he came.
John took me home. I didn’t feel the need to go to hospital. In the past I would have needed to go immediately but due to having the pump and being able to get the medication into my system fast I felt okay to go home and let John monitor the situation. John took me home and refilled my pump with the correct medication. I changed the settings to a double dose for my body to recover from the added stress and fell asleep. After around 4 hours I woke up and vomited. I gave myself another bolus and had I had not improved I would have decided to go to the hospital.
I really didn’t know what had caused my body to suddenly need more medication until I saw a leak around the needle area which goes into my stomach. I noticed the medication had leaked and showed my husband. We then knew what the issue had been. Sometimes I can become unwell due to a virus, emotional stress, fever, infection, a minor procedure or sudden shock. On this occasion however the reason I became suddenly ill was due to my giving set failing.
This is the first time in a year that this had happened. The good news is I was able to rest for two days and recover rather than be admitted into hospital. That is one of the risks of having an adrenal pump, the battery could die or the medication run out or the needle leak or cause infection. These things have all happened to me at some point during my first year on the adrenal pump and yes whilst I have to be vigilant and manage what goes on, I have only been in hospital once since going on the pump compared to about 22 times before hand and therefore despite the risks, it is so so worth it.
This is the first time I have lost consciousness due to my adrenal insufficiency in a whole year. I often feel go downhill and feel like collapsing and have to sit down and my husband then helps me work out why I feel unwell and we deal with it together. This time however I had no idea it was going to happen and it was the one time in about 6 months I was not with my husband that the incident happened.
Some people tell my husband to go get a “real” job and bring home a full time income. They don’t realise that I need someone with me the majority of the time in case I get low in cortisol and need help to work out what to do. My husband in effect is my carer, he helps me whenever I feel unwell. I think I need to create a document with instructions and get a new medic alert band so I can go places on my own every so often.
The next place I plan to go without John is BritMums in September. We will be going on the train to London together and I will get a taxi to the event. I will have to surround myself with good blog friends and have instructions what to do if for some reason I collapsed. The key is having someone around who knows what my condition is and how to deal with it. I am not going to stay home and miss everything just incase. I will live my life the best I can but I do think realistically I need to always be with someone who knows my condition and can tell medics if the need arises.
I am going to look for a new medic alert band. Some of my friends with my condition get a medic tattoo but I don’t want a tattoo. I am going to get a necklace or wrist band and write instructions on it. I did have one but it broke so my next goal is to get a new one. Then if I fall unconscious at least people can help me and know why I collapsed.
Kim Carberry says
Oh gosh. How scary. At least you got to the bottom of what the problem is quickly. It just goes to show how much the adrenal pump has changed your life. Without it like you said you would have ended up in hospital.
At least when you go to Britmums you will be around people who read about your condition! Phew!
A medic alert band sounds like a really good idea….Take care x
Thanks Kim. It was a bit stressful but a learning curve and every experience makes me more able to deal with in in future!
how scary but at least you had enough medication in the pump to come round and time to recover without hospitalisation. hope you’re feeling a bit better now? x
Thanks Steph. iT IS A LEARNING CURVE 🙂
That sounds like such a scary situation and I’m so glad that you managed to recover at home with some rest 🙂
thanks. It was a bit confusing but I got through! I have two friends that have died form Adrenal Insufficiency this week. It’s so sad. I plan to live as long as I can!
How scary! What a horrible situation and i’m glad to hear you are ok now. Keeping going girl! xx
Thanks Annalisa. 🙂
I hate this disease in so many ways, but we still have to live with it. You are coping in the best way you know how.
Rhian Westbury says
That’s such a shame that you lost consciousness but it’s so good that you were able to medicate yourself rather than be admitted into hospital x
Janet T says
Goodness how scary. It’s hard to live with a long term and limiting condition but it doesn’t help at all when people don’t understand. It’s frustrating what someone said to your husband.
Musings of a tired mummy...zzz... says
It must be so scary not knowing when you will have a situation like this 🙁 I hope your trip to Britmums goes well and I think the medic band is a great idea
Angela Wilson says
Hi. I have secondary addisons deiase. Do you use spoons method to get through your day.
Nope. I mainly just pace myself, write a list of what i need to do in order and work on it with lots of breaks and rests in between. I make a new list the next day.
Jemma @ Celery and Cupcakes says
How awful and scary. I”m glad that you managed to rest at home.
Thanks. I am too! It’s been a tough week!