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.
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 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.
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
Yep, sounds familiar…I hope you’ll start to feel better! May I ask how you take your prednisolone? How many doses? It sounds like you’re both underreplaced and there’s too much time between doses if your symptoms are that bad every day 😦
I was on HC but I used it up too quickly and got very bad anxiety when I was low, plus remembering to take it several times a day was hard if I was on the phone or in a meeting.
I take preds 5mg tablet at 6am every morning but recently I wake up at 5am dizzy and nauseous so take it them. Trouble is, by 5.30pm I feel awful with palpitations and dizziness and anxiety as I am low on steroids.
It doesn’t feel enough to me but I have a small window of tolerance with steroids and if I go above 7mgs then I get aggressive and I get a moon face. Endo is trying me on Cortisone acetate twice a day when I next see him. My day ends when my steroid dose runs out and I cant even drive after a certain time so I am hoping the new steroid is a bit better.
Hopefully you’ll find a good solution with your endo! ❤
I hope so – fingers crossed 🙂
Thanks for sharing! This is really good.
Angela from http://www.daysinbed.com xx
I have been following your blog as well Angela, your info on the pump is interesting. Have you hear of that Omnipod or something in the UK for diabetes? I wonder if that will work for hydrocortisone>
Sadly I havent heard anything about a pump in Australia except for a trial going on for those living in South Australia but if you live anywhere else I dont know if you can trial it. We seem to be lacking in some of the treatment that is available in the States or the UK.
Let me know if you get the pump though and what you think of it.
Just found your blog and am impressed with the writing in this post, will certainly be checking out more of your writing!
I’m sorry to hear you are struggling with dizziness, I myself have struggled with it, although it has thankfully improved. While there are different types of dizziness and a dizzying array of causes (sorry), I wondered if you had been tested at all for autonomic nervous system dysfunction? It can often cause episodes of dizziness and fainting, and is common in people with Sjogren’s and some other autoimmune diseases, as well as those with chronic fatigue. Many doctors ignore it and many patients report being misdiagnosed or told it is psychological or psychiatric. While you’re right that your dizziness may be a medication side effect, I just thought I’d mention dysautonomia, as I felt a lot better finding out that’s what I had and upping my salt intake as part of treatment.
I havent been tested for autonomic dysfunction, I shall mention that when I see my specialist in December – thanks for that idea, definitely worth trying. You are so right, doctors are very quick to blame everything on being psychiatric which I find quite patronizing. It gets hard with the constant struggle to explain symptoms.
I am on the cancellation list for my endocrinologist so hoping some serious tweaking with my steroids will stop my day ending at 6.30pm when my pred dose runs out. I am so low on steroids by the evening my heart is racing and it’s awful.