I don’t vent very often on Steemit (or anywhere else for that matter), but some days the insanity of life just has to be shouted to the world, if for no other reason than, to feel better for having gotten it off our chests!
Such is my post today…
Now I don’t expect too much from my body, it’s a bit broken medically speaking. I have a cluster of auto immune diseases (thank you genetics) that have required me to give up work 10 years ago and keep me on a pretty short leash in terms of diet, daily activities, physical activities and my immunity is crap due to the meds.
But recently the chronic fatigue that goes hand-in-hand with my little group of auto immunes (and most of the meds that I take to control them) has been getting, well, out of hand.
While it is always worse in the summer heat and I have gained some weight which doesn’t help either, stress is also a factor and my Mum’s passing a few weeks ago certainly adds to the list of things that would exacerbate my fatigue.
However, when you are too tired to boil water to make instant coffee, you start to think you may have a problem. Then you realise you have only been eating one meal a day breakfast, because there is very little effort involved in getting 2 Weet Bix in a bowl and pouring some milk over them.
That was until we ran out of milk!
I then realised I hadn’t left the house in quite a while. We don’t live in a remote area, but it’s not super convenient either. So I usually keep a good supply of the staples (frozen bread, UHT milk, sugar). Somehow, we had not only used up all the fresh supplies but the frozen bread and the UHT milk as well. Things were getting pretty grim.
It occurred to me that I hadn’t actually cooked a proper meal, since we went away to the Gold Coast to celebrate Miss 8’s and Dad’s 87th respective birthdays in mid January.
So I accepted it was just another summer, I would have to ride it out, or sleep it out as the case may be. But then things seemed to ratchet up another notch.
I found I couldn’t sit in front of the television without falling asleep, not even for a few mintues. And my cognitive function was also affected.
My speech was confused, words were not coming out correctly and I was searching for common usage words, but at least I was aware of the problem which gave me some comfort that I wasn’t losing my marbles.
It was at this point that I decided it was time to visit my doctor. Initially she thought the same thing as I did…. Well it’s summer, you have a lot of auto immunes, you take a lot of meds that make you exhausted, you have sleep aponea, your greiving for your Mum. And while she was talking to me I started to doze off…
That got her concerned! That and the fact I couldn’t make a sentence.
So after threatening to take away my driver’s licence if I didn’t obey instructions precisely (she's little, but she's fiesty). I had a sleep before driving the few minutes home and I had a strong coffee as well to keep me alert for the very short trip. But before going home she wanted me to get some blood tests done.
So appointment for a sleep specialist, review of my sleep aponea and off for a blood test and I had to sleep and drink coffee before I could drive home (I only live 5 minutes from the doctor’s surgery), and I wasn’t to drive again until the test results were back.
I dutifully, took a nap, had an industrial strength coffee, took the blood test and went home. Were of course I went to sleep!
Around 7:00 am the next morning I was woken up by my phone ringing. It was my doctor, she had just received a call at home from the patholgy lab to advise her that my cortisol levels were alarmingly low so she could contact me urgently. Which she did!
She now wants me to pack a bag and call and ambulance! I’m like, can I have a nap first? No, apparently not… So I do as instructed, pack a bag, call the ambulance.
So I arrive at the hospital, my least favourite place in the world, because I have virtually no immunity and this place is full of people with germs. You may as well drop me in a petrie dish!
After asking for a mask and a blanket I end up laying across 4 chairs in the waiting room, hopefully not snoring too loudly, for I don’t know how long. But judging by the backache I have today, I'd say it was a while...
Eventually I see one of the hospital registrars and as requested by my doctor she consults with the endochronoligist by phone. To be fair this guy is not my favourite specialist (and I have a lot of specialists), he tends to be very clinical and not quite grasping the consquendces of symptoms.
Now a particularly heinous complication of my auto immune treatment is that I have now become ‘prednisone dependant. Essentially, because I have been treated with cortisone in massive doses for over 10 years, to control some of my auto immune diseases (eg rheumatoid arthrisis, ulcerative colitis), my body has gone on strike and no longer produces its own cortisol. Hey, why have a dog and bark yourself!
Apparently, this is a huge problem, because no cortisol, no living… This cortisol stuff tends to be important, it kinda kick starts all the processes from the adrenal gland to get all your organs going. So as you can imagine if your vital organs aren’t going, neither are you! Hence the excitement at the pathology lab and from my doctor… I was really too tired to get excited.
Now I’m not exactly sure what happened next, but it seems that the hospital registrar and the endochronologist (as noted above not my favourite dude) decided that despite the fact that my blood test resembled the chart for the current price of Steem, and that I had dozed off yet again in the registrar’s office, there really wasn’t a problem.
So to summerise the story so far… My doctor and I think I’m just teetering on the edge of what is lovingly referred to as an ‘Addison’s Crisis’. This is where my adrenal gland ceases to function adequately to keep all my organs working, my blood pressure starts to fall, followed by some other rather unpleasant symptoms (I’ve had these before, they are not fun) and my organs start slowly failing.
However, the registrar and the endochronologist disagree. According to the discharge letter from the hospital, I was referred with 'fatigue' and I am otherwise well!
Now please don't misunderstand me. I am not bleeding from a head wound, nor am I dying from cancer here. There are a plethora of patients in need of more urgent care than I am right now, however, ultimately, if this situation is not well managed I will be joinging the ranks of the more urgent cases and that is precisely what my doctor and I are trying (apparently without success) to avoid.
So it was the “otherwise well” that really got me hopping mad! I can’t make a coffee, cook a meal or do laundry, let a lone care for my Dad who is 87. This is hardly otherwise well! My doctor won’t allow me to drive and I’m sleeping in excess of 18 hours a day… Are you kidding me! Then there is the mental fog, writing this post has taken me f o r e v e r, because my brain is just not functioning properly.
One particular agenda my doctor and I had in sending me to hospital was to urgently have the endochronologist set and monitor a new level of oral prednisone for me, that woud have me awake and functioning but not cause any damage to my endocrine system. Clearly that boat has now sailed.
However at the end of the the day it’s my body, and despite the mental fog I’m wondering about in, I’m the ultimate arbitor. So, I’m going to increase my prednisone dose until I can stay awake, and function in the interests of conciousness and crisis avoidance.
Oh yeah and speaking of boats a couple of paragraphs back! Because I was feeling so fatigued I booked myself on a last minute 3 day cruise deal so I could have a short break and hopefully come back all full of energy again, having rested thoroughly.
So as the internet on the cruise ship is usually terrible, I’ll let you all know how it turned out when I get back. If nothing else I should have some great shots of me sleeping on various parts of the ship LOL!
Thanks for reading…