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.