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Where do I start with this subject? No really, I am not even joking – I am confused by the whole thing and if you have been following my blog, you are probably face-palming or shuddering at the mere thought of me re-visiting the subject of my adrenal insufficiency and who could blame you? Not me that’s for sure, hell – the subject even makes me cry like a baby.

I have spent over five years trying to wean down from 5mgs, I thought it was less but it turns out that I have been on 5mgs since the beginning of 2012 and have spent since the end of 2012 trying to wean. Now that is a long time to wean, a very long time and many people would not have stuck at it for so long, but go me for trying anyway (repeatedly trying).

Basically I am THE champion supreme at attempting to wean off steroids and although I am proud to own that title, I will have to admit that my body now hates me for all the shit I have put it through and who can blame it?

Messing with my head

Whilst I admire – if not inwardly weep, at the determination of my doctors for attempting to wean me off the preds, I do actually feel frustrated because I go from living in denial that my adrenals don’t work, to finding some level of acceptance (I believe I did a blog on that once) and getting on with life as a steroid dependent person.

Then you can bet your life that once an Endo says ‘Let’s get you off the steroids’, I suddenly become full of hope and forgetting all about acceptance and go through that awful stage of being cruel to my body by reducing the preds and being thrown straight back into the denial stage that always seems to be waiting to jump out at me when I least expect it.

This is followed by the overwhelming sense of desperation when I realise that not only have I lost the best part of 5 years by repeatedly doing this process, I also continue to grasp at fragments of hope thrown to me by Endocrinologists.

What makes it worse is that there is no end in sight because I have been told that the wean could take a couple of years – yes, I said years. Let us not forget the previous five years of multiple failed attempts and poor quality of life because of steroid withdrawal symptoms.

So what happens when I try to wean?

My level of health slowly deteriorates and I find myself in what I call a ‘steroid debt’ where the bad days outweigh the good days and I just can’t catch a break. I wake up at 5am every morning wondering if I am actually alive or not or if I have entered the world of dry retching, dizziness and weak muscles and someone has kicked the shit out of me for good measure.

Does it depend on how much you can tolerate? Is it just a case of ‘toughen up Princess’ and ride it out? Or is it a case of getting to the point where you accept that your adrenals are not going to work properly ever again and you will have to stay on the steroids?

I can go a good few months before I think ‘Stuff this, I have had enough’ and go back to the Endo and tell them as such. By this point they usually agree that despite their promises of ‘We WILL get you off them and SAI from steroid use is nearly always reversible’ to saying ‘I don’t think you are going to be able to do this’ which is what happened last month.

And so the cycle starts again. Only this time it really does end here, well it actually ended the beginning of March when I decided that wasting 5 years of my life to crap health from futile steroid weaning along with placing my body under enormous stress was no longer an option – EVER AGAIN.

Where am I at now?

I am back up to 5mgs of preds which have to have the doses spread through the day because I appear to be metabolizing them too quickly which is rather annoying and somewhat debilitating.

My life begins about 11:00pm every evening because by then I feel almost ‘normal’ compared to during the day where I sleep an awful lot and struggle with things that healthy people can do easily. At 5am I wake up feeling as though I have gone to hell with Cliff Richard singing Millennium Prayer. I then spend the rest of the day trying to get my timing right with taking my pills and not doing too much because my friends, that 5mgs allows me to coast along but not much else in terms of energy expenditure.

I have been told by a doctor that preds are meant to be taken once a day and they ‘should last’ most of the day. Well in my case I can assure you they don’t, I get maybe 3 hours out of them but even then I still get exhausted and sleep as soon as I get home from work.

I know when my cortisol is low because I have very specific symptoms, the worst one was when I woke up at 4am with a sharp pain in my groin, it wasn’t unbearable but it was enough to make me say words like ‘shit’ and ‘Bloody hell’. It was also enough to make me reach for the HC. This happened when I was on 4mgs of preds per day (last month) and I took 4mgs of HC which helped, although I had to endure that pain while waiting for the pill to work which seemed like an eternity even though it wasn’t.

So I can officially confirm that there will be NO more grasping at straws and there will be no more weaning either because I think five years of doing that is long enough, don’t you? Enough is enough.

Thanks to Des Rolph for her unwavering support and phone chats when I was at my lowest with this illness.

Samantha Rose (C) Copyright April 2018