So guys, I was hoping to not have to write a post about health until after I had seen all the specialists and I could tell you what weird and wonderful thing happened to me to cause so much misery... but here I am on a rainy Sunday afternoon, (yes I know I'm posting this on a Monday) waiting for the F1 to start and I thought I'd give you an idea of yet another difficult health week for me.
So- if you haven't already- read the earlier posts titled "Life at 15 WTFs Per Hour" to understand where I am up to. But quick recap- body tried to kill me multiple times, long stay in captivity, still no idea whats going on, life currently involves rattling with the amount of tablets I have to take.
One of those tablets are steroids- now, I have been on steroids for over a month now reducing from a very high dose to hopefully coming off them all together. One of the reasons I was put on steroids is to help stop the symptoms of anaphylaxis return, this happens by helping to suppress my immune system slightly (well- a lot)
So, background sorted- lets tell you lovely lot whats happened.
Friday afternoon I have what every girl dreads... the start of cystitis. Now- if you are one of the lucky ones who has never had cystitis, or are a boy... let me give you an idea of what its like.
***Graphic analogy coming your way here guys FYI***
Imagine every time you go for a wee, it feels like there has been a sword fight in your urethra. Then to celebrate the sword fight, the bacteria decide to hold a Mexican themed party and get as much tequila, lemon and salt and chilli as they possibly can and then rub those all over every open sword fight wound (which is the entirety of your urethra) for shits and giggles.
So- you can imagine... it isn't pleasant.
Now, the rationale nurse side of me thinks- some kind of opportunistic thing was going to happen- but I was praying for a cold.
So, I take myself to the chemist, grab myself some cystitis relief and a hell of a lot of cranberry juice and plan to spend the weekend feeling sorry for myself; and boy, did I feel sorry for myself.
So- 3 days of treatment and we get to Monday morning- its not good. My temperature is high, my kidneys are feeling pretty sore, I'm vomiting and I'll spare you other somewhat personal details, but I don't have time for this today! I'm off to see the allergy specialists at Wythenshaw so I need to focus on this.
Thankfully, a truly wonderful friend offers to take me ( and I mean truly wonderful as he did this after a night shift- he got all the Mcdonald breakfast he could ever want). I tell him that on the way back, I'm going to need to nip to a walk in centre because I need some antibiotics.
We go and sit waiting for the specialist- all of which are currently in Europe for a conference (which you can imagine I WAS THRILLED ABOUT!!!!!!!) so no answers, just results saying whatever this was has done some irreversible damage to my lungs. Fabulous- kick a girl when shes down.
So, we leave and head to the walk in centre.
ITS PACKED. There are screaming small humans every where and I've got a banging headache, welcome to the seventh circle of hell.
I do the usual booking in, and sit there waiting to be called, and go through the agony of getting an MSU!
My name is called, and the most wonderful triage nurse sees me. We go through the history, and we test the pee- I mean guys, I feel we're at a point now where I can share this with you, you know all about the sausage dog pants and the wobbly bits- I've got nothing to hide from you anymore.
We get the result back- hello whacking infection. My temperature is pretty high (we're going good mid 38's here) and I'm shivering. Really not good!
We do the exam and there is a lot of pain around the kidneys- but ever the optimist, I'm still routing for a simple UTI which will clear with some antibiotics.
"So Miss Overend, We're going to refer you to A&E as this may be a bit more complex than we can manage here. Especially with your recent history. We also just want you to have a seat in our treatment bay we need to do a few more tests, because I really don't think you're well enough to be in the waiting room!"
NOOOOOOOOO, not another A&E visit.
I'm going to start getting a name for myself- but seeing as recently I have had many, many people telling me I am a terrible patient, I do as I'm told for once; and to be fair- I'm feeling pretty grotty right now- I'll do anything for some antibugs in my system.
So off I go- back in to A&E and see the lovely triage nurse, again!
I give them my referral and a lovely pot of pee- and off I go to get bloods and a cannula in. By attempt 5, I am really wishing that I either had better veins, or was slightly less unwell so they were showing.
But, the lovely Hugo finally gets one in- what a babe. With the cannula in my parting comment was
"Whatever the results... you're not allowed to admit me Hugo... I've just gotten out of this place, you're not doing it to me again"
He laughed, filled me with painkillers and left.
Bloods get sent, and I go take a seat, awaiting my fate.
Thankfully I have incredible friends who willingly offer to come and keep my company in A&E, even bringing cookies to keep us going. We take the time whilst waiting for bloods to do some exam practice for my friend as she is about to undertake her speciality exam.
Out comes lovely Doctor Hugo calling my name, with a look on his face I wasn't overly happy with.
"Yeah, you definitely have an infection. Your bloods are elevated, your CRP and WBC are high"
I knew where this was going.... So I chimed in (and looking back retrospectively... I really shouldn't have)
"Hugo... we made a deal... I'm not being admitted. You need to come up with a plan to make sure that doesn't happen."
He looked worried, he knew I was serious.
"Well, your infection markers are high, and it does look like pyelonephritis, but if you really don't want to be admitted, we can give you a stat IV dose and then send you home on double dose antibiotics; but if after 2/3 days there's no marked improvement- you come back".
HUGO... YOU ABSOLUTE BABE!
So, we agree. I get dosed up and I go home sore but with the drugs that I need.
I have never wanted drugs to work as much as these- the Mexican fiesta in my urethra and kidneys was getting a bit old and I was ready to have a bit of a break.
We get 3 days in, and i'm still not feeling wicked, to the point where I explain to my favourite people that I'm close to the point of needing my own hashtag.. #PrayForTheFoof or that the title of my autobiography should be #PrayForTheFoof - a memoir.
I have tried everything, I have taken all the medication they ask me to take, and I'm still in agony. The Mexican sword fighting fiesta is raging on and I am feeling miserable.
In comes Pops. The saviour of the miserable girl.
Now- you may remember Pops from my first post- shes the one who has subjected you to my grumpy rantings of being a healthcare professional on the wrong side of healthcare.
But she is hands down one of my favourite humans.
I believe that we are actually the same human- we both have the same questionable morals, we have both been NICU nurses *all be it she is now a high flying hot shot doctor/politician/disability advocate/BMA wonderwoman* we both worked out in Ghana in Takoradi of all places, and so much more.
She is (I'm not allowed to say inspirational- because, genuinely she hates the word) BLOODY AWESOME.
So in comes Pops, we don our matching Spice Girls pyjamas (she's Ginger, I'm Posh) we eat pizza and krispy kremes and she brings non alcoholic gin to ease my withdrawal of the desperate need for a gin and tonic (surprisingly, it was bloody glorious to drink! I highly recommend)
She falls in love with the guinea pigs, and doesn't even mind when one pees all over her (very embarrassed pig mum over here!) I mean, they're pretty cute so they can get away with a fair amount!
We have the conversation that my poor foof is still suffering- after nearly 4 days on antibiotics- I was really hoping for some relief- being the super GP she is, she tells me to go back and get rechecked. Obviously, I planned on ignoring her.
One Harry Potter film and a lot of gossiping later, Pops heads home and I head to bed. The night was needed, it took my mind off a really tough couple of weeks- and sometimes having normality back when you don't know what your normal is, is everything.
The next morning I wake up, and I'm really not good. I wake up and feel nauseous again, I'm drenched in sweat and feel shivery. I check my temp and boom, we're back up with a temperature of 38 degrees. I think to myself, its fine we're on antibiotics, I just need to finish the course and I'll be fine.
That is until I get a phone call, again, from a truly wonderful friend Fauzia. Fauzia is another one of my favourite humans. When I was in hospital she brought the entirety of the sweets and chocolate aisle to keep me going. We chat and we do the whole "How are you?" to which I always reply- "Oh i'm fine". But Fauzia has a sixth sense for bullshit- and she called me out on it.
Fauzia isn't someone you argue with, so when she demanded I go back and see someone- I actually did as I was told. She may be little and lovely- but you don't piss her off.
So I ring the GP- explain over the phone, and before I even finish, I'm told to head straight to A&E.
FOR THE LOVE OF GOD!!! NOT AGAIN!!!
To be fair, by this point I'm actually wanting to go in I'm feeling that rotten- whatever this infection is, its really doing a number on me!
So I rock up, sign myself in, and again I cannot begin to tell you how wonderful every single person I meet is.
My temps high, my blood pressure is on the lower side, my hearts racing- yeah, I think I'm in a little bit of trouble. The body really isn't coping well with this. I get ushered through to majors and go through the whats happened with me recently.
The look of disbelief on the doctors face tells me that he really wished I wasn't his patient, I couldn't just be simple could I!
So we go through the process again- cannula after cannula attempt. Bloods, the pain of a urine sample (trust me I'd prefer to have multiple failed cannula attempts than have to pee again) but we get them done. My bloods are significantly worse, urosepsis really isn't my friend!
A bag of fluids is put up and the urology team are bleeped to see me.
2 litres of fluid is pushed in to me- something my kidneys really weren't feeling! The pain was getting more and more unbearable- to the point I have to ask for more pain relief! My temperature spikes again, and I'm really not feeling well.
I sit there and well up- I am getting to a point where all positivity has gone. Why does everything feel like one step forward and 17 steps back. I am exhausted, I am broken, I am nowhere near to answers- and now this.
Then I get even more angry at myself that I'm not keeping positive! Its a vicious circle.
I sit there when the lovely nurse pops her head around the corner-
"We're going to move you hun, get you up to the ward and a bit more comfy"
I nod my head, I couldn't even get words out because I knew if I did, I was going to cry. Panic filled me- I didn't want to be admitted again.
Don't get me wrong, I cannot fault the care I have received through out all of this! It has been incredible- but mentally I was not strong enough to be kept in.
I was trying to explain this feeling to my parents over the weekend, and I wonder how many HCP's reading this can relate to this feeling.
Being a nurse, for me is more than a job. It is probably the biggest part of my identity. If someone were to ask me to describe myself- the first thing I would say is "I'm a nurse". I am incredibly proud of being one, and it is inherently intertwined with me as a human being.
Being a patient, being in hospital, not being able to work- I feel that my identity has been completely stripped from me. I don't feel like I'm a nurse at the moment- I feel like I've lost the thing that makes me me! I've lost control in the one environment I never loose control in. It's a truly lonely place to be in. I am frustrated that I can't take a step back and let someone look after me- I look after people not the other way around.
It truly has been the hardest thing to get my head around, and the fact that it has been, for what feels like the longest time, and with no real end date in sight- the frustration and worry is taking a huge toll on my own mental health. My resilience is at the lowest its been in a long time, and its hard to find ways to improve it.
After another long history taking, and more prodding and poking- its decided I have severe Pyelonephritis and an element of acute kidney injury- FanF***kingTastic, the first course of antibiotics have just not cut it- so its time to dose me up on double strength IV antibiotics and fluids. Whilst all of these ran through in to my system, I took some time to sit and read... I'm trying to acclimatise myself to the fact that I really need to just sit and let the process happen.
More fluids, more drugs, and I'm set... Fleming, Weinsten et al you are my new favourite people for inventing the multitude of different antibiotics I have received recently. You really have saved my life over and over.
The next morning, I had my kidney scan - can you believe the organ I adore the most was trying to kill me! It showed both my poor little kidneys were inflamed, and the left one had taken a proper hit and there was some nephron damage! Again, news I Just could have done without.
Another lot of multiple IV antibiotics, and the wonderful team deem me safe enough to go home and double dose oral antibiotics.
I head home, my parents en route to look after me for the weekend. I'm sore, I'm feeling grotty, but my god- I don't think I've ever been happier to be on my way home than I was that morning.
So- I'm now home, and I am starting to feel more myself- the antibiotics are working like a dream- and the mexicans have finally stopped their party.
One thing that is still slightly hard to adjust to, is my new normal. My normal used to be leaving the house after necking a cup of coffee- now its very much more planned. I have to ensure that I have all the drugs I need to get me through the day. I have to balance rest and trying to continue a life.
I am desperate to get back to work- and normally I would be chomping at the bit to get there, yet this has been the first time I am actually not pushing myself. I have the most amazingly supportive team who, as much as they want me back, want me to be healthy first.
I'm hoping to be back to work next week after over a month of not being at work. I know that I will be going back without answers- but I am at a point (once antibiotics and kidneys have settled) where things are at least manageable with medication. It will just be a very new normal for me, one where my resilience and coping strategies will need to be revisited, where waiting for diagnosis doesn't hold me back from doing what I love doing- which it has done recently due to fear of the unknown.
But again, the one thing I cannot stress enough, is that despite all of this, despite I feel I'm nowhere further in getting answers to big questions- I have been blown away by the kindness and compassion I have been shown by not only, friends and family, but strangers who reach out to me on social media.
If you read this- you have no idea the impact one single message can have in making a really really shitty day that much better. No thank yous will ever be enough- because you pick me up when I can sometimes feel at my lowest.