The only thing I can compare adrenal insufficiency to, is feeling as though you’re run on batteries. You mustn’t let the battery run out completely or you’ll be very ill. You also mustn’t use too many because more than you need will also make you feel unwell and lead to all sorts of long-term damage. Basically you eventually learn how many batteries you need – this can take years – when you find the magic amount then you have to take into account that everyday has different challenges and different requirements of energy, so now you have to second guess how much extra will be needed and when. Should you wait until the batteries are starting to fail to add more or should you somehow try to work out if you should have more beforehand?
This is adrenal insufficiency in the 21st century! Dosage and literature still based on fifty year old information. Having to break up steroid pills into halves and quarters as although these pills are keeping us alive it is only a tiny physiological dose that is needed – unless we get ill and heading for crisis when we have 100mg shot – having to split our daily dosing into three or four times a day to keep on an even keel.
It is astounding how many Doctor’s have never heard of adrenal insufficiency. They will most probably go a whole career without one single patient who has this condition. The endocrinologist’s that we see who are familiar with AI also vary enormously with the amount of knowledge they have to manage this condition. Again, even an endocrinologist can go a whole career without ever having an adrenally insufficient patient.
This is the main reason that rare endocrine illness can take years to diagnose. It’s complicated stuff, which leaves the patient pretty messed up by the time it’s diagnosed. When you do finally get a diagnosis you are so relieved to know exactly what the hell is wrong with you. You at last can stop thinking you’ve gone completely mad. All very much short lived when you’re sent away with a bottle of either hydrocortisone or prednisolone and told ‘try this much, once or twice or three times a day’. There is no set dose. There is not a Doctor anywhere on this earth who knows exactly how much you need to maintain any sort of a normal existence – ie. getting out of bed and having a shower. The devastating disappointment when you realise this is going to take a long time to figure out, and boy it does.
After four years of living with this hell I finally found my normal daily amount needed and what times I should be taking it. It took two years of keeping a diary. Writing down everything tried. Amounts, times etc and listing results. Eventually a pattern formed and I fine tuned it so I’m not on a permanent rollercoaster of too much or too little daily. As fantastic as this is, there is still the changing goalposts everyday. An illness, a shock, simply doing too much can all lead to needing extra. It is a crazy way to live and it’s also a dangerous way to live. The simplest of things can send you spiraling into an emergency situation so fast.
Despite living with such a stupid fucked illness, I try to pretend everything is ok. I’d like to say I try to forget about it but that’s made impossible by the fact the second we wake we must swallow some steroid. A few hours later – and it’s best to stick to the same times – an alarm goes to remind me another dose is due and then nearing bedtime another one also. Hard to forget about it when you have to set a bloody alarm to stop you forgetting.
How long would someone with AI live without their steroid pills? Maybe two days if lucky. I dread to think how much you’d suffer before death got you. Just missing one dose you feel so ill. The pains in your side, stomach and back. The dodgy stomach and throwing up. The cracking headache and utter weakness where your muscles can’t function properly. The shallow breathing as your cardiovascular system can’t work properly. Basically cortisol controls everything in your body. It’s not called the life sustaining hormone for nothing!
Today I made my Christmas cake. Used to be easy but now it’s not. Combining AI with the Cushing’s Syndrome damage which stops me being able to stand for long, makes cooking difficult. The clock is ticking and I will reach a cut-off time where I just can’t stand any longer. Today, for example, when I reached the ‘you have to sit down now’ time, I’d exhausted myself so the low cortisol symptoms joined in too. An hour on the sofa, a little bit extra of prednisolone taken and then the whole process starts again. It has improved compared to the last three and half years. I’ve definitely turned a corner and getting stronger and sometimes when I need to sit I haven’t also got low cortisol going on as well. I must slowly be getting stronger, but this is a strange way to live.