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…
It's the beauty of life with autoimmune diseases. You drink drugs every day, you struggle to endure every day. I think my fatigue and sleep are the worst. I just have enough to drive and bring children to school, I'm tired and can not do anything else. It's no easy life, I know how you feel.
Have a nice vacation on a cruise.
I hear ya @sylviamiller! It really was the 'otherwise well' comment that pushed me over the edge!!!
If a patient without chronic illness could not get out of bed, drive, get food or brush their teeth the medical profession would be in a panic. Call the social workers, do more blood tests we can't send this one home, their on the brink of disaster.
Even with a critical level blood test, I get a pat on the head and 'otherwise well'. Seriously!!! Clearly I have now upped my prednisone and my level of grumpiness. Probably not the best time to write a sternly worded letter to my endochronoligist or the registrat at the hospital, but I'd really like to.
Hope you get some relief soon, and don't be affraid to advocate for yourself. These doctors are only people, they are falable they make mistakes. Ask questions until you're satisfied with the answers and they have you in a place where you can function with a young family.
I have my GP to fall back on when outside specialists fall down on the job like they did today. Still it's not ideal that I'm 'guessing' what my prednisone dose should be for the next 4 days until I get back and can review the situation with my GP again.
Good luck and stay in touch.
Hey! Sad me reading this, lady!
First of all, my belated condolences about the passing of your mum
Second of all, happy birthday to your grand daughter and your father (87 wow!)
And next, take care of yourself, hope you will feel much better soon and not dozing while driving and whatnot
Lastly, enjoy the cruise and rest well, body and mind
❤️
Thanks so much @thekitchenfairy!
Firstly absolutely no sad :-) Occassionally a little mad, but very, very rarely sad, and that mad can be either crazy or cross depending on my current prednisone dose LOL...
Also thank you for your condolances and birthday wishes for Miss Z (turned 8) and Dad.
And defnitely taking care of myself... Wide awake at 2:20 am the increased prenisone dose has kicked in... Sleeping is over (for the moment) we have now hit manic cleaning stage II! If you stand still in my presence you may well end up in the washer or at least get a hell of a good dusting! Poor Dad has retreated to his bedroom and closed the door...
Source
Now I just have to channel this burst of energy into partying and not painting the ship!!!
Ahhh, someone who knows how I feel! Looking forward to hearing about the cruise... and does it fix brain fog?😎😴
Morning @bitsy... Why is it even though I've been sleeping for weeks and I'm now contemplating cleaning the bathroom, I'm still a tad tired? LOL
I'll let you know about the brain fog, I tried to put the electric kettle in the fridge earlier this evening! Thank heavens it didn't fit...
Hope you can find a way to even out the highs and lows as much as possible. Keep in touch and stay well.
Thanks for the smiles! :)
Shame...I feel for you. You should have booked a longer cruise so you can at least enjoy some of the holiday. I hope the fresh air keeps you awake. Try and have some fun.
Thanks @giantbear! I have upped my prednisone and now I'm like the energiser bunny, albeit a tiny bit manic LOL.
I would love to go for a longer break, but I look after my Dad. He's 87, but he thinks he 47 and he is cutting down trees with chainsaws, digging up boulders etc. So he requires some adult supervision, or at least someone to call the ambulance when he falls on his butt.
Actually, he was giving me the stats this morning... He has to call the ambulance for me, more often that I do for him. I'll never here the end of it LOL
I will try and have some fun though definitely... Thanks again.
You should take your dad with you! You are very fortunate to still have him up and running all the time. May you have a blessed holiday and keep the phone close!
I took Dad for a longer cruise last September, he had a great time checking out all the islands... I had to stay on the ship rather than risk catching anything too exotic LOL. But I needed a break from caring for him albeit just 2 days and 3 nights.
I want to cry and laugh and feel sorry for you all at once - great post - enjoy every moment on that ship, even is you just sleep. Resteeming
Thanks so much @anneke! No crying unless it's from laughing LOL. I am so full of energy now I can't stop cleaning and well basically trying to find things to do, can't sleep at all and its about 4:00 am.
Now that I have increased my prednisone I should have a great time on the ship, hopefully I won't be so rowdy that they make me walk the plank!
The down side is that my dosage is not being monitored because apparently I'm 'otherwise well' (yep still really peeved about that), so for the next 4 days it's a bit of a risky strategy on my part. I don't have a doctor's understanding of how this will affect my auto immunes or my endocrine system. So fingers crossed!
I'm a lawyer damn it, not a doctor Captain! (Sorry poor attempt at Star Trek reference)!
Thanks for the resteem too! Have a good one...
You just go and enjoy and if you have to walk the plank, you do that in style hahaha
Congrats on the Birthdays, and I'm sorry to hear of your mum. Prednisone can be really not fun, I remember being on it when I had Leukemia, awake all hours, eating like a horse, bruising badly, nausea and I stacked on weight I'm still trying to lose lol. Hope everything starts to return to normal when you get home. Enjoy the cruise @aussiesteem
Thanks @danjo1984... Hope you're totally free of the Leukemia now (and forever). Have to say a cruise boat is ideal on high doses of prednisone... Food on tap 24 hours a day, someone always up and about to chat with when you can't sleep and usually they've had a few drinks so they don't notice the bruises so much...
Pretty sure I'm in the clear, been about 20 years now :-) .... sounds like I need to try Cruising, I'd definitely be the drunk guy at the buffet trying to talk to random people at 2am.
Adding that one to the bucket list...
Have fun mate :-)
Glad to hear it and yes definitely try the cruising!
Giant hugs for you!
Thanks @thinknzombie! I'll be collecting on that next time we're on the same continent.
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