Adrenal Insufficiency and steroid reduction

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One Step at a Time – can really take you places

(Photograph by Samantha Rose)

It has been quite a while since I started to reduce my steroids in an attempt to ‘wake my adrenals up’ (my doctors words not mine) and so much has happened since I my last blog update about it.

Firstly I am now down to 3mgs of prednisolone which is a dose I never thought that I would get down to but it has been far from easy.

One of the things that happens when weaning off years of steroids aside from going through withdrawal (and something that nobody warns you about), is that the very disease/illness that you took them for in the first place will often flare up again.

I have had another Synacthen test which has shown quite a bit of recovery but still an inadequate result but hey, any recovery is recovery that I was told would not happen right?

I am also having regular morning blood cortisol tests and my last one which was taken 2 weeks ago; has shown adrenal function within normal ranges! Obviously I am thrilled about this but my specialist has told me that a normal morning cortisol is normal on my 3mgs of steroids and if I didn’t take them or had a particular stressful day before the blood test, it would be different.

So it has been decided that I stay on 3mgs for the sake of my auto immune disease and also because the Synacthen test still shows an inadequate response and that is the one that counts as in how my adrenals work under stress.

On the whole I am doing very well on 3mgs providing there is no stress at work, or I don’t engage in strenuous exercise or I don’t get sick.  The other week I had a high temperature and I felt dreadful and had to triple my dose for three days.

Sometimes at work if I am really busy then I have to stress dose because my 3mgs of preds is simply not enough.  This I will add is on the advice of my doctor.  With adrenal insufficiency I get very specific symptoms such as the feeling that inside my head has gone ‘dead’ – a bit like how your leg feels when you lie on it for too long, all heavy and you don’t want to put weight on it.  My muscles kind of feel like they are burning, like someone is pressing on them (press hard on your own shoulder muscles till it burns and that is the feeling that I get in various parts of my body).

I get a bad headache and it is normally over one eye and painkillers will not relieve it.  I suffer nausea as well, dizziness and the usual brain fog and that is when I have to take 4mgs of hydrocortisone otherwise it gets progressively worse and I am unable to drive home.  Still, it is positive that I recognize it even though it is frustrating that I can’t just stop the 3mgs like a normal person without adrenal insufficiency.

Sadly my joints are now hurting like a bitch and I am getting some pretty nasty AI symptoms back again so this has effectively been a ‘trade off’ because each morning I wake up so stiff in my joints plus pain in my hip joint that it takes about 2 hours to ‘warm up’ and get more mobile. Some days I ponder on my choices and from where I am looking, there are not that many to choose from.

The first choice is weaning off the steroids which is what I am trying to do because if I thought having Sjogrens is bad, I have discovered that adrenal insufficiency really is the work of the devil.  It has been like going to hell in a basket with Cliff Richard on replay and I cannot even begin to tell you how shit you can feel and only someone that has been there will understand.

The second choice is to remain on 3mgs for the time being and stress dose when needed which is what my doctor would like me to do.  This dose is not fabulous for a good quality of life in terms of joint pain, as well as the adrenal symptoms if I am having a bad day.  My specialist has increased my immune suppressants which have made a significant difference to my AI symptoms so I guess this is the choice I have made.

I still dream of stopping the steroids one day because some days I feel ‘normal’ but have been cruelly reminded that I am not when I have overslept and woken up late for my tablets and then I pay the price by feeling awful for the rest of the day like my body has gone into steroid-debt and punishes me heavily for it.

When things go well with my health and I feel OK, it is all too tempting to imagine if I could manage with the medication and I do have to remind myself that it is because of the medication that I get the good days and not in spite of it.

So that is my update and I think it is quite a good one.  A year ago I was in a pretty bad place with a refusal to accept this and advised it would probably be permanent and I have proved that diagnosis wrong and at the same time learned to accept ‘my lot’ so to speak.

I don’t know if my adrenals will get completely better as I find it quite hard to believe that 5mgs of preds shut my adrenal glands down in the first place – that is not what the asthma doctors tell you now is it!

I also don’t know if adrenals can have good days and bad days in terms of steroid production or if the damage to my adrenal glands has been halted by the immune suppressants that I take or if they can get worse again.

But for now I am happy and grateful for the recovery that I have made and if I can give one tip for anyone going through similar, I would say not to give up hope even if it takes years to get there.

Because the journey that is adrenal insufficiency is a long and painful one that needs to be taken slowly and while you may not notice it straight away, time and patience usually pays off in one way or another – either by acceptance of your disease or improvement in your overall condition and whichever one happens, you are a winner.

Samantha Rose (C) Copyright July 2016

 

 

The funny side of adrenal insufficiency

Always look on the bright side of life (or your adrenals)

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Araluen Botanical Gardens Photograph by Sam Rose

‘What?’ I hear you say, ‘You mean to tell me that there is a funny side to this horrible disease?’  Well let me tell you now, if I don’t see my own funny side; I shall be driven to curling up in a ball and chatting to my own adrenal glands to beg them for mercy – whoever ‘Mercy’ may be.

This blog is to try and find some humour out of what is happening to me and who knows, if it helps you find some humour for yourself then it won’t have been in vain.  All of the following stories are true and have been said to me but descriptions have been changed to protect the innocent and in some cases – daft.

Are you drunk Samantha?

I am not a big drinker, don’t get me wrong I used to be a party girl but now one glass of wine and I am tipsy so one glass is where I tend to stop.

However, when I get low on cortisol one of the most noticeable symptoms is slow speech and an inability to ‘problem solve’ or string a coherent sentence together.  The lower my cortisol gets, the more confused I get and the slower my speech gets.

‘Oh my god, you sound drunk, have you been drinking?’ someone asked me the other week.

Was there any point in saying no that I had not been drinking?  Probably not but I tried anyway and stumbled and fumbled around in my own mind to sort out the words I would need to in order to form that sentence.

The trouble is with low cortisol, you can’t find the right words when you need them so you have to improvise without sounding more confused than you already do.  It’s a bit like Scrabble really, only it’s ‘Scrabble inside your head’ and you rarely win the game.

‘Are you? are you drunk?’ the person repeated.

‘No I am not’ I replied, at least that is what I think I said but it may well have come out as ‘No drunk not, I am’ or some equal pile of mixed up words.  But never mind, the right words were probably there, just in the wrong order so who’s arguing? Not me that’s for sure.

Phoning the health direct line for medical advice

Now that is a laugh a minute let me tell you.  I had to call them the other week as I was very unwell after my synacthen test and could barely get off the sofa.  I do need to emphasize that it was not a 000 call to go to ED but I did need sound medical advice and quickly.  I had started off with the number to call a doctor out who then referred me to the health direct number.

I was put through to a very nice nurse who took all of my details down and decided what to do from there.

I gave her the run down and what happened and told her that I felt weak, shaky, dizzy, tummy cramps and had not pulled myself together since my synacthen test the other day and did I need to take extra steroids as I wasn’t quite sure what to do (Endo didn’t want me just stress dosing for anything which is fair enough).

‘Do you have a droopy face?’ the nurse asked on the other end (she was following protocol and going through the check list so I am in no way berating her for it as she was very nice).

I pondered for a moment, did I have a droopy face?  I don’t know, some days I wake up looking like a well bred boxer but wasn’t sure about droopy.  Grabbing my jowls and trying to tug them down, I tried to work out if I was droopy – I wasn’t.

‘No I haven’t got a droopy face’ I replied, ‘I have adrenal insufficiency and all I need to know is do I stress dose?’

‘Do you have chest pain?’ the nurse asked.

‘No, I don’t have chest pain’ I replied patiently – with my slow speech that probably made her want to ask me about my (non) droopy face again.

‘Have you been drinking?’ the nurse asked.

Resisting the urge to tell her that I had quaffed a cup of Yorkshire Tea in the morning but secretly pretended that it was brandy, I sighed ‘No, I have not been drinking’.

‘Please, can you just advise me what to do and if I need to stress dose as I feel very weak and shaky and I can’t really go far from the sofa, that is all I need to know’ I said to her.

‘Do you have left sided weakness?’ the nurse persisted as she went through the check list.

‘No, I am weak all over’ I said fretfully.

‘Do you have any pains in your head?’ she asked.

Now I had pains in many places but thought it best not to go there.

Anyway, the questions continued and I answered as best as I could and once the nurse had finished she entered the information on the computer for a few seconds while I patiently waited.

‘Right, the results say that you should consult your doctor within 12 hours’ she said firmly, ‘Can you make an appointment tomorrow morning?’

‘It is Sunday tomorrow, my GP is closed’ I sighed.  Sweet mother of god I was going to cry, except that I didn’t have the energy and I don’t produce tears as I have Sjogrens syndrome.

‘There might be an emergency doctor open near you now’ the nurse suggested.

‘I can’t drive, it’s 10pm at night and I seriously can’t get off the sofa, can you check with someone if I need to stress dose?’ I pleaded.

‘I am sorry I can’t answer that but the computer said you need to see a doctor within 12 hours so you could try the surgeries near you tomorrow, I can give you a list if you like’ the nurse suggested in a hopeful voice.

Having visions of the UK comedy program ‘Little Britain’, I could imagine her saying ‘Computer says no’.  I stopped myself from laughing and just replied that yes I would go to the doctor tomorrow and then secretly wondered if it would be safer to take a steroid now or just become all religious and pray that my adrenal glands would behave and hold out for my morning dose.

Anyway, I could not leave the sofa and that was where I remained until my husband got home and I was able to go to bed to ponder on if I had a droopy face or not and whether I should make a suggestion to Health Direct to include adrenal insufficiency on their check list.

Girls’ stuff – please skip this bit if you are an easily embarrassed male

Sometimes, just sometimes with adrenal insufficiency we ladies get issues ‘down there’ and require cream to make it better.

I walked into the chemist a couple of weeks ago to ask for some special cream and the chemist lady did not speak very good English.

‘Do you have this cream?’ I asked her and then said the name of the product.

The lady looked confused and then nodded firmly and led me to one section and after a few seconds of hunting around and running her finger alongside each shelf, she grabbed a box and triumphantly held it up.

‘Here you are, this should help’ she nodded and showed me a packet of mosquito repellent wipes.

Not knowing whether to laugh or cry, or call Health Direct for the suggested assault on my ‘lady-garden’, I spluttered ‘Are you serious?  that isn’t it, this is the cream I need’ and I repeated the name again.

‘This will fix it’ she repeated and tried to hand me the 90% DEET repellent wipes.

By now I was horrified and had even began to doubt myself and stared again at the wipes and wondered if there was some miracle ingredient in the wipes that could help ‘down below’.

‘I don’t get mosquito bites down there thank you, don’t worry, I shall try somewhere else’ I muttered. Thanking her for her help, I left her standing there clutching the wipes wondering where it had all gone wrong.

My ‘lady-garden’ had a lucky escape, I mean those bastards would have taken the skin off – can you imagine that, I mean CAN YOU IMAGINE!!!!!

I left with no cream and then ventured into the next pharmacy with high hopes that someone would be able to help me without trying to burn my vagina off with DEET.

The next pharmacy

‘Hello, can I help you?’ the assistant asked.

‘Yes, do you have this cream?’ I whispered to her discreetly, using my finest Queens English accent.

Set the scene – the chemist was busy, like packed busy – full of people type of busy and the word of the day was not discretion.  An old lady that was asking for everything to be repeated to her, suddenly found her hearing when she heard the word ‘thrush’.

‘Oh if it is for thrush and all that kind of stuff, then it is over there!’ she said loudly and then demonstrated to the aisle that virtually screamed ‘female embarrassment’ in a loud voice.

I found what I wanted and sloped off to the checkout and spotting some Glucogel lollies in a bag by the check out, I threw some into my basket with the cream and waited my turn to pay.

The assistant lifted up the box of cream and studied it briefly, I was almost tempted to ask her if she had tried it before but thought better of it.  Besides, I was starting to feel hypoglycemic and was staring at my back of Glucogel like a starving person because if I didn’t get some in my belly soon I would start sweating like Tony Abbott in a parliamentary debate.

And that brings me to my next issue – blood sugar.

Why don’t you have a banana……

I swear to god if anyone else suggests me eating a banana I am going to go into banana rage and smack them round the face with it and place the skin on their head like a yellow octopus.

Like many people with this disease, I suffer from blood sugar issues and without feeling any hunger or without any warning, I can go hypoglycemic very quickly.  I have to carry glucose tablets in my car and frequently have to eat a few before doing certain activities.

‘Why don’t you have a banana?’ someone asked me one day, ‘It’s far better for you’.

My answer to that is that Glucogel lollies shove my sugar levels up far quicker than a banana.

Besides, bananas tend to go brown and mouldy in the car and can’t be kept in the glove compartment for emergencies and if I am going to go hypo then you can keep your bananas, I want Glucogel and lots of them.

You do know that salt is bad for you right….

No, really?  I never knew that.

‘Oh my god, don’t you put a lot of salt on your food’ people have said to me.

Salt to me is like Danny and Sandy from the movie ‘Grease’ – we just ‘go’ together and at certain times of the day, salt is my best friend.

I have been in cafes where I have poured salt on my food and have had shocked looks from people which makes me want to pour even more salt and make a salt mountain on my food and stick a flag in the top of it saying that I have climbed it and survived to tell the tale.

So when you ask me if I know that salt is bad for me, please forgive me if I turn the entire salt dispenser up in the air and pour it directly in my mouth just to prove a point, although I may just vomit afterwards to spite myself.

Nose like a beagle dog

I am convinced that I have the scenting abilities of a beagle as my sense of smell is so hypersensitive.  I am quite surprised that HM Customs haven’t contacted me to sniff bags at Perth airport, no really they should consider me as I would be very good and would not be averse to wearing a dog harness to do it.

This smell sensitivity can pose a problem with certain types of food as I clutch my nose and try not to gag because someone at work is heating up their lunch.  It is very hard to smile and talk to people when you are holding your breath and trying to convince yourself that their food is not toxic and that chicken and broccoli is a nice healthy lunch and not the poison that your snout thinks it is.

I have been known to hold my breath for a considerable time to get away from people eating their food so that I don’t have to smell it while inwardly wishing that I could catch a bad cold so that my nose would block up and I wouldn’t find their curry/broccoli/lasagna quite so offensive.

We have gone to war, no really we have, I am sure of it

Whilst other people ignore the sound of a plane flying over the house or enjoy the loud sounds of a war movie, my body in fact thinks it is going to war and my adrenal glands yell out ‘we are all going to die – right now!’

‘Can you turn the TV down?’ I plead with my husband who has the volume turned down to the point he can barely hear it.  But I can hear it and those guns and bombs are gonna kill us, my adrenals say so and they don’t lie – do they?

We had a fire drill at work the other week and my head knew it wasn’t real but once again my adrenals decided to be naughty and misbehave and convince my body that we had gone to war with the Martians, which of course took me a couple of days to recover from it.

This is a huge worry for me as my body thinks it is constantly under attack and I am wondering if I should dress up as a soldier when I go out so that I am prepared for battle.

Can you imagine that happening in a shop, a fire alarm goes off and everyone is calm as you like and I am wearing army greens while yelling ‘Save yourselves and your families!’  It’s not funny really, well I guess it could be if I ended up hiding under the ‘feminine hygiene’ section of the pharmacy taking shelter next to ‘those special creams for ladies’.

You have joined the Nana club

I have turned down or cancelled so many plans because I have used up all my spoons (The Spoon Theory) and not just used up my spoons, but probably taken some out of the cupboard in a desperate bid to make it until the end of the day.

I don’t like myself for it either and mentally tell myself off for falling asleep on the sofa while my friends are out living their life and I sleep away mine.

Plans can change on the very morning that they are mean to happen.  It starts off with a battle between my mind and my sofa and goes something like this:

‘Come on Samantha, let’s get going so we can drive to the park’ I say to myself.

The sofa is winking at me in all of its leathery goodness ‘Come on sweetie, just imagine yourself lying on me with that blanket on you.  You don’t need the park, you need me and you know it’. (if sofas could talk, that is what mine would say)

I find with adrenal insufficiency that my day technically ends when my steroid dose runs out and that I seem to metabolize it very quickly so when my sofa asks me to lie down, it is because it has cruelly collaborated with my adrenal glands and that is the decision they have come up with.

Sofa Vs a trip to the park – Sofa wins the battle and I become a Nana, those adrenal glands are so manipulative.

The trials and tribulations of Pilates and adrenal insufficiency

Yes, I said that the word ‘Pilates’ and adrenal insufficiency in the same sentence.

This poses a real trial for me because I start to get low on steroids at around 6.30pm which is when Pilates starts.

Don’t get me wrong, I manage to do some of it but after about 30 mins my ‘slow button’ comes on, my speech becomes slurred, I feel dizzy and the prospect of touching my toes usually ends up with me needing to lie down on the floor while the other girls show off in their Lycra and tie their legs in knots and bows and stuff while I try and make lying down on the ground fashionable.

I usually leave the studio with shaking legs and tremors, flushed cheeks, racing heart and hair like a lavatory brush but hey, I have Lycra on and anything is possible with Lycra because you can fool yourself into thinking that you are fit purely by wearing it.

Oh I had adrenal fatigue once and I recovered…

Did you, I am so pleased for you but I do not have adrenal fatigue, my adrenals are insufficient. They are not tired, they are not taking a break from all the hard work that they are meant to do and they are not lazy.

They are just slowly reducing in function and the end result is that I am not producing enough cortisol for survival and without my oral steroids I will eventually die and it won’t be a pretty sight either – a bit like Cliff Richard in his leather pants, that isn’t pretty either but let’s not go there.

There is no supplement that substitutes oral steroid tablets and whilst I am not being ungrateful at the suggestion, I have to emphasize that I do not have adrenal fatigue, my adrenals are in a very poor state and the word ‘fatigue’ doesn’t even come into play.

I only wish that I could have a word with them and ask them nicely if they could play the game and stop messing up my life quite so much – temperamental little devils that they are.

I have never heard of that symptom before….

And finally I feel that I have to address this issue and that is where some doctors/nurses claim that because they have never heard of a particular symptom before, you cannot possibly be suffering from it.

A nurse once said to me ‘I have never heard that steroids can cause mood swings, that is not what I learned at Uni’

Looking at her as though she had grown two brains (well one brain would be nice), I decided to not argue as there would really be no point but secretly I wanted to rock back and forth and fear for the future of all adrenal/cushings patients and anyone on steroids that might be in her care.

Some of the adrenal insufficiency symptoms that I suffer from (to name but a few)

  • Salt cravings
  • Vibrating in feet
  • Painful feet – feels like someone is hitting them with a hammer while doing the River Dance on them.
  • Dizziness
  • Nausea
  • Anxiety/on edge
  • Sugar cravings

Some of these symptoms do appear to be recognized by the medical profession but trying to rationalize some of them to other people is like trying to polish a turd and where does that leave us as patients?

I think what scares me most about this attitude is that if the treatment, understanding and belief of our disease begins and ends with what doctors and nurses have learned at university/medical school then I believe that our future is not only uncertain, but quite terrifying.

Anyway, that is all from me for tonight, now if you will excuse me, I am going to take my slow self and go to bed like the Nana that I am with my trusty steroid bottle that I shall place beside the bed ready to greet me (and my droopy face) in the morning.

Samantha Rose (C) Copyright Sept 2015

Adrenal Insufficiency – Out of Balance and Wrong

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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