Steroids – my friend, my enemy and my lifeline

BBMy dog Brutus is remarkably patient when I talk to him about steroids!

Sometimes, just sometimes I use my blog to sound off so forgive me but today is one of those days.  We all need to let off steam some days and today is my day to do it.

For those of you that have read my previous blogs will know that I take low dose steroids for an auto immune disease, they help with my joint pain, they help with inflammation and they to a point, enable me to hold down a job and live my life to a fairly good standard.

I take 5mgs of prednisolone and that 5mgs has become far harder to wean off than I could ever have imagined or believed and it has become the most important drug in my medicine box.

I used to take high doses of steroids many years ago for asthma which would see me suffer terribly from the side effects and I am well accustomed to the weaning process so when I say it is harder now than it was then, I am not joking.

I am torn between a state of needing the steroids because I know that they work and hating the steroids because I have suffered extensively from their unpleasant side effects.

From experience I know that getting below 5mgs will see me cold, unwell, weak, weight loss, confused, falling asleep at inappropriate moments such as on the toilet, at work or even while talking to someone.

At 4mgs I get stomach cramps, anxiety, nervous, sound/smell reactive as in everything is too loud and smells overpowering.  As for 3mgs – well let’s not go there because I believe it is just a pipe dream.

Once I get below 5mgs; it does not take long for a relapse for the original illness that I take them for to occur and then my adrenal glands proceed to have a party with my immune system and I am not invited.

I can almost envisage my adrenals chatting to my joints and saying ‘Let’s make her joints hurt like a bitch today and tomorrow we can make her mouth dry and flare up the rash on her face’, while my joints happily agree and I pay the price in the most harshest of ways – my own body attacks me from all angles.

Each morning I wake up and my bottle of prednisolone 5mgs are waiting for me by my bed silently taunting me to take them, which of course I do at 7am every morning.

‘How hard can it be to come off these, after all I am only on 5mgs and you can’t be reliant on that dose surely?’ I have said to myself on several occasions which has led to futile attempts to wean off and then run back to the steroid bottle with my tail between my legs apologizing to myself for being so cruel to my own body.

‘I shall never do that again, come to Samantha you beauty’ I would say to the bottle of tablets on my bedside cabinet in a grateful voice and then wash a 5mg tablet down with a cup of Yorkshire tea.

Once back on my 5mg dose, all is well in my world except for intense feelings of shame and ‘steroid guilt’ that I have fallen off the wagon and am back on my full dose.  I feel almost dirty for giving in, a bit like cheating on a diet with a large block of Dairy Milk.

‘I hate this drug, how can I possibly need them this badly?’ I ask myself and then make a vow to try and wean off again in a few weeks time.

Because my friends willpower is in abundance when you are getting the benefits of your steroid dose but you don’t realise just how much they do for your medical condition until you try to wean off them – and so the cycle continues.

It really is a ‘love-hate-loathing-need’ kind of relationship that I have with this drug and a very unhealthy one that is often made worse by other people and their total inability to keep their enormous, nasty and somewhat toxic mouths shut.

‘It’s a shame you are on steroids, you would have quite a nice face’ or ‘The steroids have made you so fat, will you EVER lose the weight?’

Or my personal favourite ‘I would never go on steroids, not after seeing what they have done to you’.

What on earth gives people the right to even say that?  Think it by all means, say it to their friends if they must but to say it to my face kind of makes them look like they have escaped from the ‘house of anus’.

But hey that issue lies with them and not me but as I say ‘house of anus’ and all that.

Synacthen test and those damned adrenal glands

Of course when you take prolonged steroids, there is a chance at some point your adrenal function will need to be checked and mine needed to be checked when I became very unwell when I started to reduce my dose.   This was done in the form of a Synacthen Test.

Short Synacthen Test

I have recently had my second Synacthen Test done to see if I am producing enough cortisol and in less than a 12 month period since my last test, my cortisol results have reduced considerably which kind of makes sense when I think of how unwell I have been feeling lately.

It appears that as well as having an auto immune disease, I now have fairly severe adrenal insufficiency for which I have been told is unlikely to get better as there is a possibility that my immune system has been attacking my adrenal glands.

So now I not only take steroids to keep my auto immune disease under control, I now have to take them because I am not making enough cortisol for on my own and have to supplement them with oral steroids.

Why do I hate steroids?

‘If they help you then why do you hate them so much?’ I have been asked a few times, well I shall tell you.

I hate them because my tolerance line between sanity, self control and boundaries has been blurred when it comes to steroids and now a dose of 10mgs can make me hate the world and everything in it – yes I am THAT sensitive to them.

I hate them because although I need just 5mgs for my disease, it is a dose that is not without the long term risks associated with steroids.

I hate them because if I have an asthma attack, the doctors will automatically reach for the steroids and give me a huge dose with zero regard to what the drug does to me in high doses.  This is usually rationalized by medical staff advising me that ‘you have to be on huge doses for years and years before you get side effects’.  Which of course anyone that has taken prolonged steroids will know this is utter rubbish.

I hate them because on high doses I am aggressive, unreasonable, twitchy, constantly hungry, I ache, I hurt, I can’t sleep and not only do I scare my husband with my 0-60 on the temper scale, but I also scare myself because quite simply it is like having a hostile and abusive lodger within my body and head when I am on this drug and I cannot evict them.

I hate them because they have forced me to be aware of my own endocrine system which is something I have never had to before.  Now the thought of diarrhoea or vomiting can leave me quivering in my boots and catching the flu is not up for discussion as that will involve stress dosing when in fact a normal healthy body copes with stress all by itself without the need to take extra steroids to compensate – except my body is not normal and it certainly isn’t healthy.

I hate them because due to my adrenal insufficiency,  I walk a very fine line between just being able to function to being completely exhausted, fragile and hormonally incompetent in the cortisone department.

And finally I hate them because for the sake of survival, to not take them is simply no longer an option.

Steroids – you totally have to be on them to ‘get them’.

Links

Addisons Disease and Adrenal Insufficiency

Samantha Rose (C) Copyright August 2015

Adrenal Insufficiency – Out of Balance and Wrong

IMG_1957

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.

http://pituitary.asn.au/Kids/ConditionsIntroduction/AdrenalInsufficiency.aspx

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.

What next?

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