There is always a bit of sunshine behind every crappy situation
(Photography by Samantha Rose)
I haven’t updated this section of my blog for quite some time but thought now would be as good a time as any to do so as there has been a recent update for me health-wise.
In October last year I was diagnosed with secondary adrenal insufficiency which they (doctors) suspect is steroid induced.
Adrenal insufficiency is where the body does not produce any or enough of the ‘fight or flight’ hormone that helps you cope with stress. There are many different causes for this and it can either be primary or secondary.
It is a huge topic to explain and I can’t even begin to do it as I am not a medical person but if you wanted to read up on it, here is a link to Pituitary.asn.au which gives some excellent information on the condition.
Like so many other people that have to take them; I hate steroids and I hate the fact that I need them for my connective tissue disease and totally hate the fact that even on 5mgs I carry extra fluid that while some people claim not to notice; I may as well have bags of water strapped to my body for how it feels to me.
Each time I try to reduce my preds to 4mgs, I develop a whole new host of symptoms that in the past have had me wondering if I was losing my mind as well as well as my zest for life.
Symptoms that I actually had many years ago when I lived in the UK while taking long-term steroids for asthma, but I never told my GP. Would it have made a difference – who knows but I definitely should have sought medical advice at the time.
My blood sugar was always unstable and I would have hypo attacks while out walking or doing anything energetic and had to carry a snack in my handbag when I went out anywhere.
I have clear memories of being with my friend Erica one time on a country walk and my blood sugar going so low that I was cold, clammy and confused.
It was only down to the fact that we found a pub in the middle of nowhere and ordered some food plus some chocolate to tide me over till it was served, that I was able to make the walk back home.
Other symptoms included (and still do) extreme tiredness, inability to react normally or cope with stress or confrontation, sound, light and smell sensitive – the list goes on and the list was ignored up until recently.
I recall about four years ago when I wasn’t even on the steroids, being at our local gym with my arms and legs so heavy and weighted and my chest hurting, I could not exercise and just lay down on the bench press looking like a decorative human ornament wrapped in lycra.
So how long I have had this condition is a mystery but one thing is certain, it got progressively worse until my consultant decided to do an ACTH stim test to see how my adrenal glands were performing.
It is hoped that this will be reversible but how long that will take is a good question. Personally I swing between being hopeful that my adrenals will like Sleeping Beauty; ‘wake up’ one day with the life saving ‘cortisol kiss’.
But then at other times I have my doubts as I have had these symptoms in the UK which could be when the problems started and the damage was caused long ago by previous steroid doses.
So what now?
I have changed from prednisone 5mg to Hydrocortisone and divide my 20mg dose four times a day. This regime takes some getting used to and is often messed up if I am busy at work or at home if I fall asleep and forget.
Like a finely tuned set of scales, I have no room for negotiation with my adrenals and steroid dosage and my body has no hesitation in letting me know this.
If I am so much as 30 mins late for my tablet, I am punished with dizziness, an ache in my chest, nasty ache in my kidney area, bad headache, confusion, slurred and slow speech and a feeling as though someone has stuffed my mouth out with cotton wool and dried it out and yanked my tongue out and fed it to my dogs.
Every day has to be planned around my steroid dosage and each dose gives you a certain amount of ability to deal with stress and energy expenditure – a bit like ‘The Spoon Theory’ except for adrenal glands, I call it the ‘Steroid allowance’ and if you go into debt with the Steroid allowance, you get charged double – with interest because you really cannot function without steroids.
Before I do exercise I have to stress dose and I learned this rule pretty early on in the diagnosis when I started Pilates and found myself unable to raise my arms and legs after just 20 mins of exercising.
But that is OK, I have a wonderful instructor who has become very good reading my body language and knows when I feel as though I have died and gone to hell in a basket, she lets me lie on the mat while everyone else does marvellous things with their legs and I just feel like someone has tied my own legs in a knot.
Anything that makes my ‘flight or fight’ hormones kick in, requires cortisol so I tend to avoid confrontation or stress and even excitement can see me feeling quite unwell afterwards so my days out lure coursing with my dog tend to need an extra dose of steroids.
Sometimes even the thought of going shopping to a crowded and busy place or doing something that involves strenuous activity has to go in the ‘too hard basket’ as I feel somewhat overwhelmed at tackling such things – although this is better on the hydrocortisone I must add.
I have actually found it quite fascinating how exhausted I can get just by lying on the sofa and how a day off can be spent fast asleep whilst dreaming about being ‘normal’ and then waking up and feeling tired from all that effort of dreaming (makes sense to me anyway).
Work can be a challenge, I am very good at prioritising in my job and it is one of my strengths but sometimes a pile of work on my desk can see me covering my face with my hands while wondering what to do and how to do it. Luckily I have a brilliant employer that has gone way above and beyond to help me and providing I take my steroids religiously, it isn’t too much of an issue.
The hardest thing for me is knowing when to stress dose and this is usually in situations of diarrhoea/vomiting, surgery, accident or injury etc. Because basically you just have to know your body better than anyone else, you have to listen to it and do as it asks because not doing so can have severe consequences.
Friends or enemies?
This is where you find out what friendship is all about. Having Sjogrens syndrome is one thing and if you have followed my blog on that, you will know that I have had my fair share of comments such as ‘hypochondriac’ or being accused of making up, fabricating or over playing the pain.
But having another diagnosis added to the mix just sends the same intolerably uneducated people into a frenzy of similar, stupid and judgmental comments to fuel their fire of idiocy.
Comments like ‘Why are you taking another pill?’ or ‘What are you stressed about now?’ Or my personal favourites ‘Is there anything you don’t have wrong with you?’ or ‘When are you going to get better?’
People tend to have a short tolerance with those of us that are sick and because they are healthy themselves, quite often their empathy quota is somewhat in short supply when you don’t ‘get better’ within a few months.
And that my friends, is when you find out who your REAL friends are, who is important in your life and who is not worth being around because of their ignorant and toxic attitude.
The benefits of support groups
Having discovered the Adrenal Insufficiency Support Group on Facebook, I have found it a huge help to speak to others that have the same symptoms which not only validate what I feel but also make me feel less alone.
Because Adrenal Insufficiency like any illness, is a lonely one. The group is like a safe place where we can discuss our issues and offer words of support or advice and whilst this does not ever take the place of seeing a specialist or consulting your doctor, never underestimate how important this kind of support is.
With a recent blood cortisol test done this week, I now await my appointment with the endocrinologist in April and I shall will keep my fingers crossed that my adrenals have started to ‘wake up’ and in turn, give me a normal life and one that does not require steroids in which to live it.
And if the damage is permanent then I guess like a house full of lodgers, my adrenal insufficiency will have to learn to get along with my good old friend Sjogrens syndrome while I try to get on with my life and not let them interfere with it too much.
Samantha Rose (C) Copyright March 2015