To help raise awareness around hydrocortisone emergency injection kits, we ask you to #ShareYourKit. At the ADSHG we like to feature members of our amazing community, as they show us how they store and carry their kit, to help encourage us to keep our kits with us at all times and normalise this potentially scary situation.

Here Bexi, who has recently been married shares how she managed her Addison's on her wedding day and how she stores her emergency injection kit.

Meet Bexi

I’m a full-time contaminated land consultant. I work from home 3 or 4 days a week and go into the office once or twice a week. Occasionally I go on-site to supervise engineering works. We also adopted a Romanian street dog in 2020, so she gets lots of walks and cuddles every day!

What were you experiencing before your diagnosis?

So, so tired all the time! I was sleeping 11-12 hrs a day, and when I wasn’t, I couldn’t manage the things I used to be able to. I’m a keen walker and scout leader and it really showed how ill I was when I was struggling to keep up with my scouts on a relatively short day walk. I also went on a walking holiday to Switzerland with my friends about 2 months before my diagnosis, and I had to turn around halfway through a mountain summit. It was so demoralising. A couple of weeks before I was diagnosed, I went off my food and fainted getting up off the sofa to answer the door. That was when I knew it was really bad.

The Wedding

How did you manage planning and preparing for your wedding day with having Addison’s?

It was tough, because I was undiagnosed until about 3 months before the wedding itself. I just didn’t want to plan a wedding, and had attended a couple of friends’ weddings in the year before and left halfway through because I just couldn’t hack it.

Most things were organised in the couple of months before the wedding (including the notice!), but my other half was very supportive throughout. We were determined to cut back on a lot of the nonsense that comes with weddings, and mostly just wanted a faff-free day of partying!

How did you manage your wedding day with having Addison’s?

I just doubled my dose of hydrocortisone, without question. I knew it was going to be a stressful and tiring day, and my endocrinologist had assured me that short-term up-dosing doesn’t have serious side effects. Everyone who was there for the set-up also knew I had Addison’s, and I’d previously taught them how to inject me in an emergency, so I was in good hands. I also tried to limit my alcohol intake, because I know that always makes me feel worse. I even took one extra pill the next day because I was just so tired. Better safe than sorry!

What advice would you give to someone with Addison’s or adrenal insufficiency to help manage their wedding day and preparations?

Don’t stress about the small things. It’s not worth a crisis to get the exact flowers you want, or the exact bridal party entrance order. It’ll be a fun, beautiful day anyway. If you plan everything, there are more things to go wrong! There are caterers, florists, and friends and family there for a reason; let them make decisions and take some responsibility.

How did you carry your tablets and kit on your wedding day? #ShareYourKit

I had my tablets and kit in my handbag. My best friend set an alarm on her phone and scurried up to me a couple of times on the day, pill box and water in hand, as if she was prepared to force it down my throat if necessary!

If having Addison’s has given you something worthwhile, what would it be?

The ability to listen to my own body and take it seriously. I’d been ignoring my symptoms for so long, which ultimately led to my crisis which sent me to A&E. I’m now more aware of what I need, be it sleep, food, salt, water, and I’m more prepared to listen to those cues as I’ve been in hospital long enough for this year!

What is your greatest wish for the Addison’s community?

That we can get an autoinjector! There’s something scary (for us and for people around us) about that little vial of powder and those very medical-looking needles. Everyone has seen and knows how to use the EpiPens for people with severe allergies, and it would give me and my family and friends the confidence to just use it!

Advocate for yourself! I’d been to the GP a few times in the weeks before my A&E admission and had been sent away, being told there was nothing wrong with me. I trusted the professionals too much and should have trusted my gut. There was definitely something wrong with me!

How do you spend your free time?

I’m a scout leader! Sometimes that feels like it’s a full-time job on its own, with all the camps, expeditions, climbing days and walking days we do. We do get the chance to get out for ourselves to the Dales or Moors or the Coast on occasion, and we try to get up to Scotland at least once or twice a year for a walking holiday. We’re also lucky enough to have a large garden with a few veg beds that requires lots of upkeep, and I make my own dresses when getting outdoors isn’t an option!

My favourite quick treat is going to a coffee shop in town and sitting with a coffee and a book for an hour or so.

Addison's Admin

How do you remember to take your tablets? I’ve got a smartwatch with alarms set! I bought a cheap £30 watch off Amazon when I was first diagnosed, mostly because I was on a very high oral dose of hydrocortisone coming out of the hospital and I wanted to keep an eye on that. 

How do you carry your injection kit? #ShareYourKit I originally had it in a Tupperware pot immediately after my diagnosis, but I wanted something which was a bit more obvious! My brother is Fell Rescue in Upper Wharfedale and he said that if they spotted my bracelet, they’d be looking for something medical, but maybe a Tupperware wasn’t very obvious. I ordered a customised tin off Etsy, with a big red cross and “EMERGENCY STEROID KIT” in big letters. They did a really good job designing it with minimal instruction from me!

What type of medical alert identification do you have? I have a stainless steel bracelet for everyday use. It’s the only piece of “jewellery” I wear every day. I also have a silicone bracelet for scout camps or outdoor activities. I’m thinking of buying myself a dressier bracelet so I can wear it at events.

Author: Bexi Full-time contaminated land consultant and newlywed Follow Bexi on her Instagram @BexiDS

Learn more about emergency injection kits

Thank you Bexi for sharing your kit with us! So join us, if you’d like to #ShareYourKit, please get in touch. Or share online now! Use the hashtag #ShareYourKit and tag us in your social media posts to raise awareness! 

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