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

Walk with me to the bridge (and by your side I’ll be)

Any pet owner that has had to have their animal euthanized can testify as to how difficult that decision was to make, but to stay by their beloved pets side while this is being done can prove to be too much for many people.

Some owners choose to leave their animal with the vet and some owners choose to stay with their pets when the time has come for them to be put to sleep.  There is no right or wrong decision, everyone has their own way of dealing with their own emotions and what one person can cope with, another can’t.

My first cat Bruno was diagnosed with pancreatic cancer while undergoing surgery to see why he was vomiting.  There was no option but to have him put to sleep and as I was a veterinary nurse at the time, I got to see him on the operating table to say goodbye before the vet sent him on his way to Rainbow Bridge.

I could not face staying with him as it was done, I don’t know why but I just couldn’t and that is something I never quite forgave myself for.  I know that he was asleep and knew nothing about it and yes, I know that I did the right thing – and the kindest thing, but it still to this day haunts me that I wasn’t there until the end.

For months afterwards I was haunted with images and nightmares that my precious Bruno was not really dead even though the rational side of my brain knew he was.

My second cat Juniper was diagnosed with cancer of the bile duct just less than two years after we lost Bruno, she was also undergoing an exploratory operation to see why she was vomiting and once again we were cruelly hit with the cancer diagnosis.

‘Would you like to stay with her while I do it?’ The vet asked me.

There was no question about it, of course I had to stay with her.

Juniper was lying on a knitted multi colored blanket, still fast asleep from her anesthetic and her IV drip taped onto her leg.  I took in her soft and gentle face, pink nose leathers and stunning tortoiseshell markings, I felt the cool pink pads of her paws with the feathering in between the pads and memorized every inch of her while inside my heart was breaking at the thought of what I was going to witness.

Would she know I was there, would she know if I wasn’t?  Half of me wanted to run out of the surgery so that I couldn’t see the vet purposely ending my cats life.  But the other half was still hanging on to the pain of walking away from Bruno nearly two years before.

Why did I want to run away – self preservation for me? Why did I want to stay – to put right about how bad I felt for leaving Bruno or was it because it was the right thing for Juniper?  Who knows, possibly all of those reasons I guess.

I kissed her and hugged her as the vet injected into her IV drip and within a few minutes I could feel her tiny heart slow down until it stopped and that my friends, was my first ever time of what I term ‘walking my pet to the bridge’.

I recall crying so hard that I could barely breathe but I also remember feeling an immense sense of relief because it meant that cancer could no longer rob my tiny little cat of her health and cause her any more pain and suffering.

That was my first experience, the second was with my elderly whippet Rema who was in renal failure and although she looked healthy, she really wasn’t and on the day she went ‘to the Bridge’, she turned down a beef sausage and that was totally unheard of.  She looked into my eyes and silently screamed ‘I have had enough’.

I held her in my arms as the vet put her to sleep and once again I took in her scent, her fur, her grey muzzle and cloudy opaque eyes and then broke my heart as her larger than life character left her body at the same time that her heart stopped beating, leaving nothing more than a frail grizzled and skinny whippet lying on the table.

Was that really my dog?  She looked so tiny, I was sure she had been bigger than that or was that just her character?

Did Rema care that I was there?  I like to think she did.  She didn’t fight it, she relaxed in my arms and gazed up at me – and you can bet your sweet life she knew I was there and I like to think that she knew I had walked her to ‘the Bridge’.

Once again my heart was broken, the pain inside was tangible – why the hell was I putting myself through this again with Rema when it hurt so much with Juniper?  Now that begged a question.

I did it because I felt I had to, I did it because I regretted not doing it with Bruno, I did it because it was the final journey and I did it because I knew if I collapsed alone at home my pets would probably rather sit and die with me than escape to look for food elsewhere for their survival.

Now I am not judging anyone that feels unable to be with their pet on their final journey, it is a totally personal decision that only you as a pet owner can make.

I am purely describing it as someone that has not been there and also as someone that has been there.

For any pet owner, it is a painful and emotional thing to go through. Whatever you decide to do, I can guarantee that it will either hurt like hell to walk away and leave your pet with the vet, or it will hurt like hell to hold them as they die in your arms.

The right to say goodbye is denied to so many pet owners when their animal suffers a traumatic death and for me personally, if my pet has to go to Rainbow Bridge, then I will walk by their side to the gates.

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My precious little cat Juniper

The End

Samantha Rose (C) Copyright September 2015

A day in the life of an adrenally insufficient person

Since my adrenal insufficiency diagnosis was added to my existing connective tissue disease, my whole life has been turned upside down.

This new diagnosis I will add, has been far more difficult to manage than I could have ever imagined and if I thought my auto immune disease was hard enough, then I was very much mistaken.

Suggestions from well intended people that I have adrenal fatigue and how supplements will cure me because it cured their Aunty/Uncle/Mother etc, are in abundance as are accusations of ‘Are you pregnant?’ when people see the look of pain on my face when I smell food at certain times of the day.

So with all this in mind I thought I should write a day in my life and the symptoms that I get and how I get through it.  I will warn you though, this is a full on whinge alert because we all need to do that occasionally I am sure.

5am – let’s start the day!

I don’t need an alarm to wake me up because my friend ‘dizzy’ does it for me.  I wake up dizzy, like really dizzy and very nauseous and my heart racing and trust me it is not pleasant.

I stare accusingly at my bottle of prednisolone; I say ‘accusingly’ because as some of you may know, I hate them but I love them because my body needs them and I need them for survival so dirty looks aimed at the pred bottle are the closest I can get to an act of rebellion.

Leaning over to the bedside cabinet I take my steroids and feel lightheaded while wishing that I could lie in bed until my old mate ‘dizzy’ had pissed off and left me alone.

Swallowing my precious 5mgs of prednisolone, I remain in bed and close my eyes and wait for the steroids to work, then and only then, will I be able to get out of bed because if I try too soon I will fall on the floor.

At work

When I first wake up, I cannot eat as it takes a while for the nausea to subside so a glass of water is all I can manage. That is just the way it is and instead of fighting it, I go with it as it is easier.

By the time I leave for work I am feeling so much better and count my blessings as I drive the coastal route to work where I can admire the ocean, the parrots and the stunning journey that I am lucky enough to take.

Some times I put music on and sing without a care as to who sees me in the traffic lights.  My energy levels are almost normal, I feel almost normal and it feels pretty good as well.

I arrive at work at 8.30am and only then can I manage some breakfast, trying before that time is futile so I have my cereal with a banana and a hot drink at my desk.

Mid mornings

Mid mornings see me crave salt big time, I dream about salt, nothing else matters except for salt and although I try and fight it, I find myself gravitating downstairs to the kitchen to buy a bag of chips (crisps) so I can satisfy my salt craving and it always surprises me as to how much better I feel once I have had some salt.  Salt makes the world go round, well my world anyway.

Lunchtimes stink – literally

Lunchtimes mean I need to shut my door as the various cooking smells of whatever lunch is being heated up is guaranteed to infiltrate my nostrils in a culinary assault, hit the back of my throat and cause me to gag to the point of dry retching.

I never imagined that the smell of curry or steamed vegetables for instance, could smell quite so pungent, I never realised that the smell of pot noodles or cuppa soups could be so overpowering and who would have thought that cucumber could smell so strong.  Since when did I have a nose and sniffing capability of a beagle?

So what does a person like me do when the smell of food is often the enemy and my stomach doesn’t work properly because when I do eat, I often get tummy cramps afterwards because the food appears to just ‘sit there’ and give me cramps?

I shall tell you what I do, I have cold soup because cold soup has lots of salt in it so I get what I want out of it and it is better than nothing.  I have discovered that cold beef or chicken soup serves its purpose when everything else fails.

I usually bring yogurts in to work and some fruit which is always good and failing that, I have a mug of Milo (cold of course so I don’t have to smell it).

As the day goes on…

As the day goes on, I get more tired and find that my 5mgs of prednisolone will deplete faster on some days than it will on others.  If I am busy/stressed then the running around or whatever I am doing will see me ‘crash’ by around 4pm and with the ‘crash’ comes a few symptoms that are not that noticeable by others but are by myself or those closest to me.

My speech becomes slower, concentration is harder and I suffer brain fog. I start to ache more in my joints and have to keep stretching and moving.  The need to fall asleep is pretty intense and I have to watch myself that I don’t nod off at inappropriate moments but sometimes it feels like I have been slipped a sedative as I fight the desire to sleep and wrap myself up in a blanket because I feel the cold.

At home

Once I am home, I am tired and completely drained and depleted of energy.  My two dogs  are twitching and wriggling with excitement pleading for me to either walk them or play ball with them in the garden and some days I can do neither because my body is refusing to cooperate with my need (and that of my dogs) for exercise.

I need to get showered and changed out of my work clothes but everything must be done in stages because this is exhaustion on a whole new level.  Starting with sitting on the bed, I persuade myself that a 2 minute lie down before my shower won’t hurt surely?

Ten minutes later I wake up and realise that I am still in my work clothes and now the cat is sitting on my chest using it as a pin cushion while he makes a bed on me because he thinks that I am there for the night.  My suit is covered in cat fur, I need to clean it but that can wait until the morning.

I manage to shower and change and then go to the living room where my pets are asking for their tea.  The sofa is teasing me and I so badly want to lie on it, every single thing I do is an effort and every task seems mammoth.

My evening on the edge

Another ‘gift’ that my adrenal insufficiency gives me is that I get very bad anxiety that simply cannot be rationalized, I get irritable and snappy but most of all this kind of anxiety is so strange that I cannot explain it or make sense of it but I am most definitely on the edge.

Anxiety like my mate ‘dizzy’, is a regular ‘friend’ because it seems to arrive like clockwork along with the fast heartbeat that makes its presence known at around 6.30pm every single evening when my steroid dose runs out and my cortisol production runs low.

‘Your heart is racing’ My husband said when he was hugging me on the sofa one night.

Racing?  Yes, that kind of sums it up but for want of a better description I would say that ‘working harder than normal’ probably suits it better.

Because that is exactly what it feels like, my heart feels like it is working pretty darned hard and more to the point, I am aware of it.  It’s not scary but it makes you tired and it is made worse when something makes you jump and being easily startled seems part and package of this whole adrenal issue.

It has put a whole new meaning to the word ‘jump out of my skin’ which is why I have stopped watching films like Wolf Creek and that is a crying shame as I have a thing for John Jarrett the leading actor.

Wired for sound

‘Can you turn the TV down?’ I say almost every evening to my poor long suffering husband who ends up watching one of his favourite movies with the sound down so quietly that he can barely hear it.  Except that I can hear it, I can hear every whisper from the actors to the point that they may as well shout.

As the evening goes on my sensitivity increases.  Everything is loud, it is loud when it shouldn’t be loud and when it is meant to be loud then it is pure torture and I have come to relish and seek out peace and quiet in the form of no TV and the sound of silence and even then, that can be loud.

Forever is a long time

Having been advised that my adrenal insufficiency is more than likely permanent, I now have to get my head around the word ‘forever’ or should it be ‘for now’ as we don’t know what is around the corner in the form of a cure?

For now though, I eagerly await my next appointment and with that a change of steroids that will hopefully make a big difference to my life.

I await the return of some energy and the loss of brain fog and slow speech, I await the return of my appetite and the loss of my friends ‘dizzy’ and ‘anxiety’.  But most of all, I await the return of the old me, the person that has a good life to lead, a husband and good friends to live it with.

Because I know she is in there somewhere, she has to be and when I find her I shall kick her butt for staying away for so long.

Samantha Rose (C) Copyright September 2015