This morning I woke up at 3am and I was in the very first stages of low cortisol. I am heading towards an adrenal crisis but have not arrived at that point thank goodness. I had a banging headache, my muscles were weak and I was struggling to lift my arms. I had a stabbing pain in my adrenal area, felt sick and nauseous and pretty much knew I was heading towards ADRENAL CRISIS.
If I catch this at the early stages and use my adrenal pump to bolus extra medication and double up my steroid dose, then I can usually ride out the wave and recover within 24 hours. Luckily I woke up in time and was able to deal with it. I caught how I was feeling on camera. I made a small video so I could share my early signs. I was a little slow to think and couldn’t get my words out how I usually do but thought it would be a great way to raise awareness, to share how I feel in these first stages of low cortisol.
I couldn’t lift my upper arms which for me is a tell tale sign and I was too weak to go back up stairs in the night. I didn’t want to disturb my hubby. I do that often enough in the night and wanted him to get a good rest. So I took extra medication, made sure I am on a double dose of hydrocortisone which is being infused via my pump and am now laying on the sofa dictating into the computer with Casper my side kick next to me.
Casper is such a faithful dog. He knows when I am unwell and always stays with me. I wasn’t sure what made me start feeling unwell last night. I fell asleep early. I could not do the blog work I planned to do and just felt exhausted and weak. Now I think I know what’s causing my issues. I feel like I have a sore throat coming on. Something simple like a sore throat or infection can really screw up my cortisol requirements.
If I were just on tablets, and not the adrenal pump, I would potentially be struggling right now to the point I may need to go to hospital. That’s what happened before I got the pump. I could not deal with my medical requirements urgently enough with a tablet that takes over an hour to enter the blood stream. My health would have gotten much more worse and my recovery time much longer. So as I wait for the meds to take effect, I will lay on the sofa and try to get some rest.
I am so glad I no longer get to the point of crisis where I need an emergency injection and hospital treatment. I am glad I got the adrenal pump. I saved hard to get this treatment. It took 3 years and I had small donations from 24 people for which I am grateful. However we have spent thousands of pounds to get to this point. The good news is now my health is stable and I am managing, the only cost is the medication which is around £20 per month and then the pump sets which are my big expense and costs around £120 a month. If I could get the NHS to fund this it would reduce the burden on my family.
We paid the thousands to go private, to get a pump and get my health under control, but it’s now the NHS turn to take over the costs. I am saving hundreds of thousands being on the pump. For starters, the steroid tablets I was on via the NHS before the pump were almost £80 per month. The hospital and ambulance admissions, blood tests, A and E costs and hospital stays can add up to thousands each visit. Before the pump I had 22 admissions. After I have had no admissions for ADRENAL INSUFFICIENCY. If the NHS just paid around £1500 a year TO HELP FUND MY medication and sets it could really help me and the family out.
I was declined on two occasions and will reapply in a few months and maybe just hopefully this time they will say yes. After all I am being proactive and saving thousands by preventing life threatening adrenal crisis, whilst the NHS were just putting a sticking plaster on me and sending me home until the next episode. Treatment for people with Adrenal Insufficiency needs to improve. Too many life’s are poor quality and too many kids with this condition and adults are suffering when there is a treatment which works and it works very well. I hope eventually enough research will be done that this pump becomes a mainstream treatment for all with my condition. That is my dream.
Angela x
Why are you being denied by the NHS when you have a clearly diagnosed case? That is perplexing and a little frustrating to even read about. Glad you had Casper to help you…..
It’s a challnege. Not everyone can get the treatment they need in todays world. 🙂
Isn’t that the truth? I saw this up close and personal when my wife was ill with her cancer. We had to jump through hoops as well…..
It’s never easy and yes you do have to jump through hoops continuously and wait and wait and wait and sadly it is getting worse.
Having a long term condition I know just how much you sometimes have to fight for treatment. Hopefully you will get better help this time 🙂
It is a fight and I will keep battling for the support I need.
Wow, I’m so glad you have the pump although it’s shameful that you had to pay out of pocket for it yourself! Does your dog help to wake you or clue you in at the beginning of the adrenal crisis?
My dog just keeps me company and seems more alert when I am low and unwell. He stays with me and does not go away so it helps me to know.
I am sorry to hear you had such a rough night and a close call to the getting to the hospital. You are very brave to share your experience but I don’t need to tell you that…
It’s great that you understand enough about your disease that you know what to do in certain situations. It must be so difficult and you’re a strong woman to get through this!
It took years to get my head around but I am learning to del with it now.
I hope you manage to get the help you need from the NHS in the long term, it is a shame they cannot see how an outlay in the first place can help in the long term.
I think I just really need to prove it somehow.
I really hope you can get some treatment. It sounds like you could really use it. I’m glad you at least have Casper.
Yes Casper is wonderful!
I really do not know where the NHS is spending all their budget on! I heard recently that they need another £350m to survive. I have never heard of Adrenal crisis before but you should have been given treatment from the NHS instead of paying thousands. It is really awesome that you are so open and hope you soon will be able to get some NHS treatment!
I should have gotten the treatment but they won’t provide it yet! Eventually I hope they will.
I’ve never heard of this type of illness before so I will have to research it. It’s scary to have a condition that could potentially do major harm. It’s sad when companies wont approve what is obviously a life saving treatment. As a Certified Nurse Aide, unfortunately I see Insurance do this frequently. Keep the faith! Everything will work out. Thank you for sharing your story!
Yes It will work out int he end. I just have to keep on fighting!
Dogs are awesome. They’re heroic. I don’t hear stories of heroic cats, but dogs they’re really a human’s best friend.
They are awesome! I agree.
Continue to be a brave woman. Its somehow frustrating reading this but I still hope you get it. Just be patient and persevere more. I will you good luck and a big hug for you.
I will keep fighting and one day get there. It is frustrating!
I am glad you woke up in time to be able to treat yourself at home. The pump must make a huge difference for you.
It does make a big difference.
Oh goodness. I hope you can get treatment soon. So scary! Glad you have the pump!
I hope so!
I think I mentioned to you before that I have a friend who has Addisons among other things but actually witnessing how it can hold on your body and even slur your words is heartbreaking to watch. I could see how much pain you were in but hopefully your video can articulate to others who may not understand how hard it is to have a disorder like this x
Thanks Ana. It’s just how it is and may help newly diagnosed to understand their symptoms too.
I am sorry to hear about your condition.But,it is nice to see how strong you are and how you face the challenges!It is nice to hear about Casper who is behind you as a friendly dog…
Thanks. It is great to have Casper.
Thank you for continuing to share your story. I am glad you have the pump right now, but hopefully they will approve the care for you soon.
Your welcome. I am so glad I have the pump too.
All I can say is “You go girl.” . Don’t give up keep fighting for what you need not for what you want. Glad you woke up in time. Prayers go out to everyone in this situation. I hope the NHS does what is right for everyone. Thanks for sharing your story.
I sure hope so eventually. I am seeing my specialist in December specifically to discuss this.
That is so sad how difficult it was to get the pump. And I hate hearing stories of denial for what seems to be not so difficult procedures for medical things. Just makes me sad to hear.
It is frustrating but I will keep trying for it!
That’s really brave of you and I’m glad you have your pump, hoping you get accepted sooner by the NHS. It’s great that you have Casper accompany you, really is a cute loving dog.
He is a loving Dog and helps when I am alone at night.
I just can’t believe you get no help to the cost of this, the savings to the NHS are huge without your hospital admissions.
It is a huge saving. They are just stingy…the people who make the decisions.
I really hope NHS steps up and offers you the aid for your treatment. Healthcare is such a costly thing that any assistance is definitely needed and appreciated.