The Raw Parts

I’ve written a lot about my mental health struggles. The response has ranged from thank yous from people who are dealing with their own struggles and feel less alone. The “power to you” messages from those who support me. The “you over share, some things aren't meant for public knowledge” from people who seem to think there aren’t dark unbearable things in me I have only shared sparingly with only my closest people. And the flat out “don’t want to hear it” responses. To which I wave goodbye. But through it all I don’t feel I’ve even ever shared the truly raw parts of Mental Health struggles. I have run out of breath sharing some of the hardest times I’ve been though, but only after it’s overcome.

Today I share in the middle of the bad, from my couch, where my face is numb, my chest is heavy and empty all at once and I see no point in participating in life, which only feels like an endless shuffle through molasses. I am in sensory overload. I cannot stand most sounds or touches. I am in pieces.

After a good 4 months of not feeling so great mentally and going about all of my normal coping mechanisms to no avail, about 3 weeks ago I experienced a pretty severe depressive episode that required my husband to stay home with me. I got through it and have been wading on ever since, mask on. A new doctor gave me a good overview of why I have been feeling this way & I felt much better knowing why my psychologist, grounding baths, emotional eating habits had all done absolutely nothing for me. A few vitamin deficiencies & a lot of hormonal unrest seems to be the main culprits of my body & minds betrayal. 

But, none of that stops the waves. None of that stopped me getting home last night from my brothers house, tired but fine, happy to be home to rest, in bed & intent on sleep when another episode came from nowhere. It’s the emptiness that I can’t stand, the nothingness, the not wanting to do or see or feel or taste anything. The thought of doing things that normally bring joy & comfort comes with a weight, a “why bother”. 

My legs ache. Every episode I’ve had with my mental health, be it depressive or an anxiety attack, my legs ache beyond belief. I usually need multiple heat packs on them to make it stop. Last night my legs were pounding and my chest felt like a black pit. My husband came into the room & knew instantly. “You’re not feeling okay, are you?” And this is the part I hate the most. I cease to be able to communicate. I cannot find the words to express how I feel. I am suddenly reduced to gestures & single words.

I managed to ask if he would sit in the bathroom with me. A bath is another grounding thing for me. I have the water hot enough to make my skin red, it helps immeasurably. But it wasn’t enough. It was a battle between me trying to bring myself out of this void and my body doing the thing it naturally does, making the void wider, deeper and harder to climb out of. The panic comes with it then. Anxiety is something I live with daily. It’s a part of me that is almost a friend. A part of me that I knows I deeply, that I work with to get through life.But this is different. It’s panic associated with depression; a deep fear that the depression won’t pass. That I’ll be stuck this way, unable to function.

I couldn’t climb out. It took a relaxant that induced sleep for that feeling to abate. I had to ride out the feelings until the pill took hold and I couldn’t keep my eyes properly open and Jake had to help me out of the bath, get me dry & clothed. He had put on Gilmore Girls, heated heat packs for my legs and stroked my hair as I lay on the lounge. It took no time then for the drugs to take me off to sleep.

Today the abyss is still wide, still bottomless but I’m on a ledge. Close to the top but not quite high enough to get out. I’ve tried reading, another bath, food I usually love, & now a TV show. The heat packs are still on my legs, I have nothing to give to myself let alone anyone else. 

Through it all Charli is ever watchful. Jake amuses her away from me on days like this but she can see it. I used to be so worried about her seeing me this way. Used to worry about being a terrible parent. After I finally made my way to the lounge this afternoon she took my face in her hands, “Mum why are you crying?” I shrugged. “You just feel sad?” I nodded. “Okay, breath with me, ready? In. And out. In. And out.” She done that for about a minute until “That’s, better, huh?”

It’s now 3:30pm. My Sunday is not what I hoped it would be and tomorrow morning I have to wake up and make life keep happening. I’m scared of the struggle ahead because I’ve been here before and the hopelessness feels insurmountable. My masks are handy for those days.

Just be mindful of this. This reality that it not only mine but Jake’s. That is terrifying and hard. Peoples hard days are no joke and it’s not their choice or their fault. And kudos to me. Because be it tomorrow or next week I’ll be okay again at some point and it will have been nothing but sheer will to push through the bad days.

Please be kind.

Ahhh, New Years...

 Another New Year approaches. Mostly I've seen "Woohoo, 2021! Seeya later 2020" but I've also seen "No one should get their hopes up, 2021 is just going to be 2020's sequel."

Honestly, after a year that was dominated by a global pandemic, Trump running the most powerful country in the world, and the train-wreck that was Tiger King - I'm inclined to agree with both. Thank fuck that's over, but also - where are we headed?

Short answer is - we control that.

I don't think I realised what an insane year our little trio has had until today. I wanted to make a little "2020" photo album for Facebook, and going through the photos was mind-blowing. "That was this year!?"

For us, 2020 started with some shattered relationships that were barely holding form.

We booked our first overseas trip as a family - to New Zealand in August.

Charli began swimming and dancing lessons, an exciting prospect for both her and us as parents, watching her grow and enjoy.

Half of Australia was on fire and our for-shit Prime Minister needed a good clip around the ear.

We spent most of our weekends helping my brother renovate his new house. 

By February Covid was hitting the news and we were wary. 

Family members left for New Zealand and America. 

Shit hit the fan in March, starting with a trip to hospital for Charli which resulted in a foreign object being roughly gouged from her ear, kicking off an anxiety of medical offices for the poor kid (came in to play for the remainder of the year).

Relatives came to visit which was an experience in itself, leaving Jake & myself fuming for a good time afterward. 

Charli got a rash that lasted days and resulted in another hospital trip. After being such an anti-phenergan Mum, I found myself wondering where the fuck it had been all my life as my child slept soundly and didn't scratch an inch of skin overnight.

By this time Covid was well and truly knocking Australia around - borders were closing, toilet paper was non-existent, the Karen's were out in force. Char had been diagnosed with a small heart defect mid 2019 and I was not quite a year post open heart surgery myself, which gave us pause and ended in the decision to self-isolate with just Jake attending work and the grocery store. Charli and I didn't leave the house (apart from walking around the block) for 57 days. It was great and horrible all at the same time - I had plenty of time to enjoy being with Charli - I also had zero space, which I crave. We lost touch with friends simply because we couldn't see them. We got closer to others - because the time and space to call them was there. 

We bought a puppy. A Great Dane x Australian Cattle Dog. We have been repairing destruction to out back yard ever since

Charli had her echocardiogram follow-up and was cleared. Her heart had outgrown the defect which there was a 50% chance of. I can't even begin to tell you how much of a relief that was. This was the cue to head back out into the world. Covid numbers were going down and the Queensland Premier (who I think is a bit of a champ), was setting tough restrictions; So we felt a little more comfortable on the whole.

Jake decided he would like to try for another baby. I agreed and so our IVF journey began. After one round we had only one egg, which successfully transferred. We fell pregnant and just as with Charli the signs came though hella early. We then miscarried and my body did not respond well - I bled for 23 days. The hormones and general shittiness of the situation carried on making hell for my health for a good long while after.

A childhood friend was diagnosed with Breast Cancer and although it wasn't mine to carry something about one of the brightest lights from my life being diagnosed, having to go through the chemotherapy and not knowing how that would all turn out, hit me square in the guts. I should've known better. Bad bitch that she is she has overcome chemo, allergies to chemo, a double mastectomy and is currently on the arse end of radiation, cruising through like a boss.

My sister & niece returned from the US (a relief as we watched Covid grow over there and the BLM riots going off). They stayed with us for 6 weeks. It was a fun experience, some deep chats were had, board & card games played, and there was the general excitement of Charli who was happy to have more than boring old Jake and I in the house. Home felt a little bit empty for a while when they moved to their own place.

Charli participated in her first MS Read-a-thon which is something we will now do each year. 

I had surgery on my toe (do not recommend) and had a very thorough breast examination done after the reappearance of a very large lump. Thankfully it is just hormonal and was likely a result of the IVF drugs. 

Spunky Husband bought a new car which he can actually sit in without having to hunch. It's a sexy beast, diesel, too big for the garage. Adieu to the Yaris that was literally falling apart. (The clutch had gone the week before).

November seen the remnants of one those shaky relationships from the start of the year begin to crumble and become more and more difficult. I took some leave from work to get my head on straight.

Jake and I concentrated on the house - getting some small projects finished, doing a deep clean and getting everything nice for Christmas.

The last of the family members that were overseas made it home safe & something about that made a distant part of me feel a little more right.

December feels like its very own year. Nelson turned 8. My best mate is getting older and although he is healthy and happy (other than when Reggie is annoying the shit out of him), I know he's starting to slow down and that his years are getting shorter.

That crumbling relationship fell completely to pieces and I followed suit.

Our little trio went up the coast for a week - our first proper solo holiday as a family (since we had to cancel our NZ trip - cheers Covid.) It was lovely - sunshine, no commitments, friends visiting. It was also one of the worst emotional and mental weeks I have had in the past decade and I was not in a good place for majority of it. I read Matt Haig's ' The Midnight Library', which I had been saving for the occasion. I loved it. For those who have read it though you will understand when I say I was at a point where Nora's character resonated a little too deeply with me at that moment and I could barely breathe for those first chapters.

We came home from the coast and I celebrated my 30th birthday feeling the loneliest I think I have ever felt in my life. A birthday I had been looking forward to for such a long time.

Christmas came and went, we tried to enjoy it as a trio and we kinda did. But it wasn't right. The relationship break-down was too close to the event for us to attend without lots of tension. So we stayed away and it was certainly the worst Christmas I've ever had and something I hope we don't have to do every year.

And here we are, the last day of the year. Now, after such a massive dip, I feel mentally & emotionally probably stronger than I have ever felt before. Charli is excited as can be about tomorrow for our traditional New Years Day Beach Trip! Jake is, as always, simply happy he doesn't have to work tomorrow.

There's a lot there. It was a HUGE year. But before I looked at the photos this morning, that wasn't what was sitting with me.

We lost no one. Everyone we are close to is still alive and in good health.

My cousin, after a horrible couple of years medically, is back to life as normal.

My heart is back to it's normal size, which the doctors told me it probably never would be.

Charli's heart is has also gone completely normal and she doesn't face any surgeries for defects. 

My little cousin got married and she looked so beautiful and happy.

Multiple friends got engaged, married and had babies. So much love to see on social media.

Charli sung the Frozen lullaby to put Nelson to sleep.

I started collecting breadtags for an charity that makes wheelchairs for South African people who can't afford them. So many people got on the bandwagon and are still on, handing in their tags whenever they can.

When Charli and I were both sick earlier in the year, my girlfriend and her boys dropped in a care packages of yummy food and fun activities. 

In the height of self isolation, talking movies with a very old work friend who needs so much education on the subject. 

The cleaning lady at my work caught me having a cry in the tea room before work started. She gave me a hug at the time and bought a box of chocolates to my desk later that day.

Reggie. Reggie is an arsehole and I love him to absolute bits. Despite eating my plants, destroying  the electrical wiring and sprinkler system in the garden, destroying the veggie patch, pulling the wiring out of the air conditioning unit, chewing on the outdoor table, etc, etc. He is actually the sweetest pup in the world and I have to make myself remember he is only 9 months old despite his size.

Charli overcoming many, many fears - swings, swimming, bugs, doctors (after the ear thing.)

My sister in law giving Charli hugs and stickers at the hospital after said ear episode.

Having a giggle with my eldest sister when she told me about catching her almost teenage sons talking smack about her in the car. 

The music, shows and movies that made me laugh, cry & feel. I'll make a list. Trust me.

My second eldest sister for being the one I call when I need an ear.

The work mates that you see walk in and think "thank christ they're here today."

My third eldest sister for being the one I call when we are in a spot. Who has Charli when I'm in the hospital (multiple times now).

Watching the Mum in the car behind me at KFC realise I'd paid for her family's meal and losing her shit with excitement.

To my childhood friend for dropping by not only for a chat when I wasn't in a good place but bearing gifts of crystals and plants as well as a happy meal for Charli.

The multiple stangers and celebrities on Instagram that light up my feed with their inspiration, funny moments & day-to-day life. I've got a list guys, I'll add them to my post.

The one lovely stanger on instagram who shares the same name, I met during IVF who, after miscarrying, I wished all of my baby dust to. She is now expecting a baby in August.

Where the Crawdads Sing. The Six of Crows duology,,. And many other books but these stood out for me and have a little bit of my heart.

Re-connecting with my niece who is now old enough to have social media.

Nelson, for knowing when I'm down or anxious and pawing at me until he finally settles down with (usually on) me.

My big brothers hugs whenever we leave his house after a big day of work. He always means the hugs he gives and you can feel it.

I fell in love with Camomile Tea and started collection funny mugs (mostly with expletives).

My family playing spoons at a family get-together this year. There was so much laughter.

Being organised and making Charli's Easter Bonnet Parade hat long before Covid hit and the parade never happening... She wore that thing around the house for months.

Eating too much food and rolling ourselves around Mount Tamorine on a family day out with Charli in the back of the car looking for "The Elephant to begin the climb" because she had just watched Jumanji the day before.

The giant grasshopper debacle where I would not get Charli or I out of the car until Jake got home from work and shooed it away. The prick then stalked the front of the house for hours.

Making Apple Pie from scratch. Never gets old.

At Halloween enjoying seeing a friend who had a hard year be back to themselves and genuinely happy for the first time in so long.

Being thought of by so many people for hand-me-downs for Charli. Appreciated, every single time.

My new tatt which I was worried about getting in such an obvious place that I am absolutely in love with.

 The girls group chat I have with 2 other book loving Mummas that often gives me such a laugh.

Charli's reaction to - everything. She is full of joy and I hope that stays true for as long as possible. 

A friend who Charli calls Uncle for being the most thoughtful prick in the world. 

Charli singing. I can't even put into words the feeling in my gut and heart when she breaks out in song with such zeal. 

But mostly what stuck with me was Jake. My Husband who through every single thing that I've loved, hated, laughed at or cried through has been there. Steadfast. Unwavering. Completely immovable. The expression "My Rock" has never made so much sense.

I suppose my whole point is I'm grateful. For the small and the big things. That I don't really see the world in terms of a pandemic or a shit president. That despite the many overwhelming things we had happening this year, our world, my world is made up of all these amazing moments, memories & people who make it worthwhile, happy & special. So let 2021 bring what it's gonna bring and make it the year you want it to be. x

8 Months of Illumination

This is how I go to sleep now, guys.

That’s right, this 29 year old woman needs a night light.

It all started with my open heart surgery last May. Pre-op, I was terrified; in the 4 months prior to surgery I had happened upon another 2 drug allergies (just add 'em to the list), so I was in the frame of mind to be prepared for anything. I made sure my Will was done, that Jake had a diary done for the year ahead with birthdays, appointments, reminders, that the bank accounts were full enough to cover funeral costs and keep my small family afloat until they re-adjusted their living. Obviously, I was under the impression I could very well die. So, the evening prior to and morning of my surgery I had to use every ounce of willpower to stay in that hospital. If you’ve read any of my blogs from back then you’ll know that if Steve the anesthetic guy hadn’t been man-handling whichever limb of mine was closest to him at the time and talking to me constantly, my ass might not have been wheeled into the theater that day. Obviously the last thing I recall is voices fading out and darkness coming in.

I remember waking up in ICU a few times that first night. After gesturing for my breathing tube to be removed, I started having a reaction to the pain relief which involved violently vomiting bile. I couldn’t move much with my freshly cracked chest, so I was forced to ride it out each time by hugging a thick towel, and bring up what I could, where I could. Sometimes I had the presence of mind to buzz a nurse before it started coming up but a few times they didn’t make it to me before the thick hot liver-made goodness landed on my pillow, bed, chin and neck It was a pretty bleak experience. The most memorable thing for me was the fear. In and out of consciousness, not able to sit up on my own or lay on my side, vomiting, sometimes with no assistance... What if I choked? All of this happened in very dim, far-off lighting, so it was all just shapes in shades of black and white. A memory I hated for the longest time.

Finally out of ICU I stayed on the ward for 4 nights. As everyone knows, in hospital there is no such thing as the dark. There is always a light on somewhere. And between being woken up for obs, fellow patients being dicks with their TV’s up loud or simply getting up to the bathroom - there no such thing as silence.

Once home from hospital I was confined to the recliner for sleep. Jake, good human that he is, slept on the couch next to me and every night my anxiety grew, until night 4 at home when I lost my shit entirely. I fell into a pit of deep depression and ended up on the toilet (still having trouble balancing my pain meds vs bowel movements), sobbing my heart out to my best friend, who I’m sure had entirely no idea what the hell to do. Then my Mum came over and basically just held me on the couch until I stopped crying. It was the pits. This whole time the lamp next to me was always on overnight, just in case I needed anything (It was hard for me to reach out & turn it on & off from my chair at this point). But as the next week came and the pain lessened, there were fewer night-time wake ups and no real need for the lamp. So, one night, Jake turned it off. I was instantly overcome with panic and demanded he turn it back on. I didn't really understand why, I thought it was probably just because of the bad mental & emotional days. But as time went on, I realised there was possibly a lot more to it.

My fear of dying and all of the preparations I had made for the possible eventuality had consumed me in the 5 months from diagnosis to my surgery. Now that I had made it to the other side, I think subconsciously I was still in that mind frame. So, I clung to all of the things that felt comfortable and safe and let me know I was still alive - including light. I think the dark reminded me of going under, which I associated with dying and I felt out of control when I was in complete darkness - almost devoured by it. I'm past all of that mind fuckery now but it seems like my body is not - the immediate reactions it has certainly attest to that.

Jake has trouble falling to sleep and staying asleep with the light on... so of course we have tried many times in the 8 months since to overcome this anxiety of mine. We've tried turning the light off after I've fallen asleep but each time I'd wake up soon after, panicking before I was even fully aware of what was going on. We've gone cold turkey - that was fun. For now we've made it outside the bedroom to the hall light - far enough away that Jake's sleep isn't so interrupted but so that I get some sleep myself. The goal at the moment is to find a way to get the light further away bit by bit until my body learns to sleep in the dark again.

But this is more of a shout out to say hey to anyone dealing with weird shit that they probably don't really think to talk about or may be a little embarrassed by. It's cool guys - my 3 and a half year old is cooler than me so, you know. Do what works and love the shit out of yourself and your journey.

The Bovine Patch Chronicles Part V: 3 Steps Forward, 2 Steps Back

It's like a dance, this recovery thing; and for me, that doesn't mean a graceful flow of movement...

I may have gotten a little over excited about life last week - getting my licence (freedom) back & feeling well enough to start doing more things. Ask anyone who knows me well - I don't do anything by halves - it's either at 120% or not at all. So on Saturday, I went full throttle, it was a great day but I was absolutely shattered by the time I got home. The trend continued though & I decided I really needed to start doing a lot more for myself so I hung out clothes, cleaned the kitchen & bathrooms, dusted, vacuumed. Mum had a lot to say about all of that but I was sick of feeling dependent. But, I found myself extremely sore most days, some days by very early afternoon.

On Monday night, I woke up with a choking sensation - I managed to get back to sleep but woke up again in excruciating pain down my left arm, across the left side of my chest & back. We called an ambulance & away I went. Thankfully Charli, who had had temperatures all night, stayed sound asleep during the whole thing & Nelson assisted in that by not fussing over the ambulance officers. It turned out that my left lung had re-collapsed & had fluid at the bottom of it which they informed me could well have caused that amount of pain. I was thankful it was nothing to do with my heart but frustrated to hear about my lung.
The hospital trip & CT scan I had there led to some extra information which I talked about with the GP. A CT is NOT the mode of examination used to confirm the presence or absence of the defect in my heart, I will have another echocardiogram to do that BUT my CT showed no signs at all of the defect which previously could be seen. I'm trying not to get too excited about that but also feeling hopeful! The CT results also stated that the sternum fusion was incomplete... I casually mentioned that to the doctor, just checking it was okay at this point. She looked almost sorry for me as she explained the bone there wouldn't fuse back together until the 6-9 month mark. THAT news certainly made me want to slow down. I went to meet a friend for lunch & do some painting at the hobby store after that which made me feel a lot better & it was nice to be out of the house.

Friday's plans had been on the cards since last week. I told Jake I was desperate to go to the BookFest in Brisbane. So, Jake asked for a days leave & we planned to go into the convention center & nerd out, maybe have some lunch... We got there, picked our first section & split up to cover more ground. I probably should have hired a trolley because I was stuffing books in my bag - then that was full, so I just started holding them. I very quickly got faint & felt so nauseous. I called Jake, who ran across the section to my rescue. We headed for the check-out then, satisfied that we'd done enough in that particular spot. I told Jake I might just have a seat outside while he paid, I was feeling worse by the second. The good people from Lifeline had really done a great job this year with a "revive" area full of couches. I plonked down on one, breathing deep to stave off the nausea. The lightheaded feeling only increased & I ended up slithering onto the floor, much to the dismay of some of the other book buyers. Jake came from the check-outs & I asked him to find me a sick bag because I didn't feel I could make a trek to the toilet. That caused a flurry & I ended up with a beautiful security guard, Cheryl, sitting with me while Jake went to get my something sugary from the cafe. I'd simply overdone it - with a bit of pain, not enough energy in general & low-blood sugar I ended up crumpled on the floor, leaning against a couch eating mouse sized portions of a blueberry muffin. Jake had taken the day off & we had driven all the way in here for this, there was no way in hell I was just heading home. So while I slowly & quietly regained some strength, Jake hit up another section for the both of us. By the time he returned I was well enough to very slowly go through the last section with him. We hired a trolley this time & things were a lot easier that way. Another stupid thing we done was park under South Bank. In the spirit of wanting to get lunch & planning for it to be the last place we were at, it seemed logical at the time. So, Jake carried 4 bags FULL of books (56 to be exact) the two block walk back to the car. Ladies, if this isn't your man, get rid of him...
We did end up stopping off for lunch (late lunch thanks to my episode) & running a couple of errands while we were at the shopping center. We then grabbed Charli from daycare early & took her to the park. Needless to say, last night I felt like I'd been hit by a Mack Truck.

Today I took things much easier & even uncharacteristically asked Mum to come by this morning while Jake worked to help do some washing & vacuuming. Thanks Mum! I'm still feeling extra sore tonight & it's a bit of a sign to say slow down, I think. As much as I want to do things, going too hard, too fast is only going to make recovery slower & more painful.

There have been a lot of peaks & valleys this week but here's to a slower, more restful week ahead. No bookfests to be crazy at, only
light house duties & fingers crossed no hospital visits!

The Bovine Patch Chronicles Part IV: 4 Weeks Out

Woohoo - today I am 4 weeks post-op & feeling like it! 

I'm comfortably walking 1.5km a day & although my recovery book still suggests that distance for another week, I'm feeling good enough to kick it up a notch & see how I go with 2km. My range of movement isn't 100% but I have enough back to not struggle as much with things like drying myself off after a shower or putting my seat belt on. I'm still restricted with what I lift. For the next 2 weeks I am completely restricted, not able to hang out heavy washing or take the bin out. Following the next fortnight though, I can gradually work up to lifting heavier things but all up it will still take another 8 weeks from now until I can start to get anywhere near back to normal. LONG ASS ROAD.

Today I was able to convince my GP to give me a driving clearance. I had to do an interesting jumping test. No joke, they make you jump on the spot & if you don't have pain, they allow your licence back after a minimum period (funnily enough, 4 weeks). So I held onto the girls & jumped on the spot, confident because I wanted my licence back but also waiting for my chest to cave in because, fear. Obviously I can't go road-tripping but I will be able to take Charli to daycare & get myself to the doctor & local shop if I need to. It's a massive turning point for me to have some independence & freedom back. I imagine it will be another taxing task that will add to the soreness at the end of each day but it is totally worth it.

So pre-op I joined the gym. I was advised to get my leg strength up as I wouldn't be able to use my arms to get out of bed or off the couch, I also have to get up completely to readjust myself every time I want to shift the way I am sitting... So I went & smashed my legs for weeks leading up to surgery. I'm so glad I did I have to pick anything up off the floor by squatting & I'm able to get up off the floor without needing to hold onto anything. This has been wonderful in cheating my recovery book a little. The book stated I shouldn't have a bath for at least 8-12 weeks post op as I can't start to support any of my weight until around then. Yeah, nope. The bath is my haven - any time I feel anxious the bath is one of my first go-to's, I read in there & still jump in with Charli a lot. This week I couldn't wait any longer so Jake & I tested it out while the tub was dry. It was a little sketchy & I almost didn't try it again but I caved and thanks to my crippling work outs I can twist & stand on my own from laying in the bath. Like a bad-ass. So that is one exciting step back to normal life & I've enjoyed 4 already - reading books, singing "Let it Go" with Charli & fighting Nelson away as he tried to drink my bath water. On a serious note though, it is really hard to properly hug & do things with Charli at the moment & being able to be close to her & wash her hair, which we make funny, has been a real mood-lifter.

On the subject, mentally & emotionally I am better. Certainly far from 100% & mostly struggling at night time. I find it hard to concentrate so distracting myself with a book or show is actually really frustrating & often makes me feel worse, so I cry while Jake snores beside me, already better for the fact that he still chooses to sleep on the couch next to me instead of in the comfy new bed we bought so recently. 

I think my sleeping arrangement had a lot to do with how I am feeling - I can't lay flat on my back - the pain is actually excruciating & my side although not ridiculously painful is way too uncomfortable to sleep on any time soon. I'm a stomach sleeping through & through & not being able to stretch out my very tight, very sore back is frustrating beyond belief. The GP confessed today that it can often take up to 3 months before I can lay flat for a start. By night time I am tired & super sore. I don't want to be on heavy painkillers but panadol is pathetic & I am banned from having nurofen for a while yet. So I've been having half of an endone on the nights where I can't fall asleep without it. It's currently a fine line between trying to stretch & strengthen during the day but not so much that I am aching through my whole chest at night. On the bright side, I was cleared to have my neck, shoulders & upper back massaged as long as I am in a chair & not laying down (obviously!) I'll be seeing the lovely, i.e. TERRIFYING ladies at the local massage place in the next week to try & alleviate some of those issues.

I also got the shits with having my hair not properly washed (my drain sites are still a little yuck & the GP doesn't want them to be wet where possible & it was also hard to wash my hair properly at the length & thickness it was, hands above head is also still a stretch. Soooo, I cut it all off. I can't actually tie it back its so short & I'm loving the ease & lightness at the moment. Thankfully Jake liked the surprise... It was a surprise for me too - I went to the salon to get a nice proper wash & walked out missing several inches off my hair.

So really things are going pretty good. I cannot believe I hae come so far in so little time & the horror of the hospital & first week home seem like a lifetime ago. Thanks so much again everyone for all of your support & love in what has been one of the hardest things I've ever had to do. xo

The Bovine Patch Chronicles Part III: Recovery at Home

The first time I seen the Cardiologist back in January, he first explained the defect in detail & then went on to list the tests that would have to be done to make a decision around surgery. He then discussed surgical options with a definite sway towards open heart. That is, he said there were 2 options with ASD closure; option one was the hole being plugging via an artery, option two being open heart surgery. He then went on to talk only about open heart surgery & also promoted it as the best way to ensure a successful closure. I was never silly enough not to put stock in that & immediately planned for everything to go that way.

I didn't Google anything about it because I knew I would read something I didn't want to, but I did make the mistake of joining a Facebook Group for my specific defect. WELL... It was a host of horror stories, mostly about plug closures via the artery. The amount of people who had to go back more than once for the procedure was phenomenal & I was in no way prepared to have my ticker played with multiple times to only end up having open heart anyway (quite a few people had this happen). Needless to say I ended up leaving that group within a week & although I was already mentally prepared for open heart surgery, this gave me the mindset that despite what the tests showed & what the cardiologist said there was no way I was going for anything less than what was going to fix it. I was prepared to question the plug option were it presented to me.

And so, throughout all of the tests & procedures, all of the preparations, despite all of the fear & anxiety about the whole situation, the logical side of my brain always won out. Everything was a question of what needed to be done & how to see it through. The worry could come later. After my angiogram/heart catheter, I knew it would be mere weeks until I had the actually surgery; and because I'm a planner & a stress-head, I was all over that. Leigh, a nurse from the surgical bookings team at the hospital got well acquainted with me over the next week & a half. I could hear her sigh & frustration every time I called. She was never rude but I was certainly being a squeaky wheel - I wanted to be oiled! The pushing kept me on task, not thinking about what was about to happen, just getting busy organising it. The same with the weeks lead up to surgery when I cooked & shopped & tidied to make life easier for Jake while I was away. Even the unexpected extra week I was able to make use of myself.

I knew the night before & the morning of surgery would be super hard. Even in the early days of diagnosis, deep down I was already fearful that something would go wrong & I would not wake up again - that is obvious by the fact that I went to get a Will done. Logically, the surgery was simple & routine in this day & age, there was such a minimal risk for me. Buuuut, because of all the pop-up allergies, particularly medical ones, that had only been found this year alone coupled with the fact that I've watched Final Destination too many times... there was always worry & doubt.

But that was all I had prepared for. I knew I had to hold onto my logical & sane thoughts until that moment when I was finally under, when they could go ahead & do what needed to be done & I wouldn't need to think about it anymore. I had prepared meals, babysitters, drivers, finances, sleeping arrangements, paperwork out the wazoo. I had not prepared for the hospital days which were way harder than anticipated & I had not prepared to come home & do anything other than recover. To follow instructions with medications, wounds, exercised & otherwise enjoy the down time to read, catch up on good shows, paint, play the PlayStation, maybe try to draw a little.

I was not prepared.

My first night home was a little bit of a blur. Discharge from the hospital & getting home had been exhausting. Jake was home with me for the remainder of the week which meant two full days of just us at home while Charli was at daycare & a full weekend to spend together. We went for walks as part of my exercises given by the hospital, Jake slept on the lounge next to me while I slept on the recliner. For company at night when anxieties would pop up. We went to doctors appointments, we watched some movies & each day got harder. I was off the charts with anxiety, which was hard but I can always manage. It was going way off the deep end with depression. A low I haven't felt for a very long time. I was so scared come Sunday night, the combination of everything I was feeling added to the fact that Jake was headed back to work the next day left me in a hot mess.

For anyone who hasn't felt the lowest of what depression can feel like, it's indescribable. The loss of control over your own mind & emotions is incredible. Complete hopelessness, all-consuming fear and despite any logic, despite any previous victorious battles with the condition, nothing will convince you you will feel okay again.

So, Sunday night, still uncomfortable with bowel movements, I was on the loo trying to let anything happen when I was overcome emotionally. I called for Jake & BEGGED for him to do something. Not really knowing what the hell was happening to me, Jake was at a bit of a loss so I ended up blubbering/yelling at him to either take me to the hospital or call someone to come help. To add to the chaos, Charli had woken up from her sleep inconsolable after what we think was a nightmare. So, in the end Jake ended up on the couch cuddling Charli & I ended up on the couch cuddling Mum. A relaxant & a hit of Endone made me less tense & erratic. I was too scared to be alone for a while after that & Jake had an extra day off to make sure I was okay.

None of this made any sense to me. The hardest part of this whole thing was supposed to be just before the surgery. Emotionally & mentally, being home & recovering was supposed to be the easiest part. I planned for everything else but this. Since then I've taken each hour, each day bit by bit. Thankfully the intensity & frequency have both died down but I have found myself with intense fears around death & hospital that I have never had before. At the moment Jake is still sleeping on the couch every night by my side, fighting for space with the dog because he knows Nelson helps too. My Mum still comes every day, not only to help me do all of the things I can't so myself but to make sure I am feeling okay in myself. But, as my pain has become less intense and tiring & I've been able to do more things independently (still so far from back to normal), I seem to have been able to deal with my thoughts & feelings better. I'm hopeful the trend will continue & once I'm back to normal this will be another memorable victory for me.

So it hasn't been a happy chapter, but it's all part of the journey so I'm writing it. I am so thankful for my amazing support team. I've never had a day go by without someone helping or just stopping in to keep me company while I am stuck at home. I appreciate every single message, call & visit. Love you all x

The Bovine Patch Chronicles Part II: Post Op Hospital Days

Steve kept his promise. I woke up, painfully & slowly, with wires, tubes & machines swinging off me everywhere. I know I fought them to get rid of the oxygen tube, I have extremely vague memories of weakly gesturing for them to take it out. I don't remember them actually doing it, but they finally did which was good because the next time I came to I was vomiting. Obviously I had nothing in my stomach at that point so it was just bile but oh my, it was horrendous. I was barely awake, spewing onto my chin & down my neck while the nurse grabbed a sick bag & told me to support my chest through the heaving by hugging a towel. I'm thankful I don't remember much of all this, just waking up every so often for another spew. I remember demanding to know what pain medication I was on. They told me it was Fentanyl & I immediately demanded that they change it. Fentanyl makes me vomit & I am allergic to most anti-nausea medications - not a great combination. Eventually, my medication was changed to Endone. I woke up sporadically from then on but remained mostly unaware for the rest of the day & night. Mum recapped the conversations she had with the nurse when she called the ICU to see how I was doing. Apparently my brain to mouth filter malfunctions when I am drugged up & coming out of general anesthetic; I told the nurse to leave me alone because I needed to sleep when she was trying to do an ECG at one point. Thankfully, the nurse found this amusing & not just me being super rude... Apparently I had multiple phone conversations myself with Jake & Mum.

I have very little recollection of the following days. I was still in ICU for the majority of Saturday. I could barely eat despite the nurses best efforts to get me something I would enjoy. The physio & nurse wanted me to get up & walk but I was too dizzy & weak to stand or walk on the first couple of tries. I eventually managed something like 6 steps before I was planted in a seat where I fell in & out of sleep. Jake was with me from late morning until they moved me to the ward late in the afternoon. I don't recall much other than the wheelchair ride from point A to B which felt more like a ride in a rally car.

To me, cannulas are horrifying on a good day & at this point I had a catheter for my bladder, a central line catheter in my neck (going into my jugular vein - YUCK), two drains in the top of my stomach, two pacing wires also going through the top of my stomach to my heart (like a temporary pace maker), a constant ECG monitor (5 wires stuck around my chest & stomach to little sticky pads), a vacuum wound dressing over my sternum which was connected to a pump & oxygen through my nose. Just gorgeous, as you can imagine.

I was lucky enough to have lots of visitors on Sunday, Jake, Mum, my brother, sister-in-law, niece & a couple of friends ventured in through the day which was lovely but I was terrible company, still dopey, dropping in & out of sleep at times & with the catheter removed early that morning, I was in & out of bed to the toilet what seemed like every 15 minutes. Boy, that was a process. I was probably the closest patient in our room of four to the toilet & it took an enormous amount of time & energy to do a wee. Getting out of bed for a start was incredibly more intense that I was prepared for. I had to support my chest by hugging myself as I was pushed up out of the bed, then, navigating all of the cords, tubes & wires & trying to wheel the shitty IV pole all of 5 paces to the toilet, get on & off, wash my hands, get 5 paces back to bed & get back into the bed (another fun adventure of sitting & leaning a specific way, so the nurse was able to help me not use my arms to bear my weight).

So far things had been okay, if I wasn't completely out of it, I was relaxed enough to just chill out in my bed or on my chair. Then Monday came & it was the worst day possible. My central line, where my Endone had been available at the push of a button had been removed. The pain probably would have been fine had the doctor prescribed a bigger dose per day, unfortunately it took the whole day of me complaining to nurses & finally seeing the doctor to say my pain wasn't being managed properly before they checked my chart & promptly apologised, upping the dose. On top of that was normal bodily functions that were not so normal - going to the toilet to do either a one or a two was the worst - I felt like I had a urinary tract infection without the pain, just a constant need to go that was never sated no mater how often I went. The other side of things was the same, feeling the need to go but nothing happening. As you can imagine that was uncomfortable. This particular day was also the worst for staffing. There simply weren't enough staff to see to the needs of so many patients. As one of the needier patients (Still unable to get myself out of bed, reach things & go to the bathroom unassisted) that constantly needed to go to the toilet, it was painful to press my nurse assist button & not be seen to for 10 minutes or so. I was super thankful when my sister & Mum arrived, not only for the company but for the help. They gave me a bird bath on the bed because I was too weak, tired & sore to have a proper shower & fed me some lunch. It was on one of the trips to the bathroom where I had a meltdown & begged Mum to stay with me for the rest of the day. I fell asleep after that when I was finally allowed more pain medication & from sheer exhaustion. I woke up to find Mum still with me which was a massive relief as the trips to the bathroom started up again. I can't remember how many times I got up to go to the bathroom but it was a lot & the last time I spent something like 10-15 minutes just trying to go. I finally gave up which was not the right call, because I ended up going as I went to sit back in my chair. In a moment of complete horror, I looked at my Mum & I'm sure my face said everything. Mum was able to grab a nearby nurse who promptly & discreetly cleaned up the seat while Mum got me into the shower. The nurse took the time to explain how common it was, with the combination of pain killers & softeners it's hard to tell when anything is actually going to happen. She offered me adult pull-ups as she further explained that it was likely to happen again. I eagerly took her up on it, preferring to have any further accidents contained. Thankfully it remained a precaution & I didn't shit myself again 😏

Tuesday was a better day in the slow upward climb to getting better. I felt more awake and able than before & even managed to have a shower after the disturbing removal of my pacing wires & vacuum dressing. Finally free of the IV pole it was much easier to get around. On the doctors rounds, they let me know they would likely be sending me home the following day which was a scary surprise. They wanted to do another chest X-ray & echo-cardiogram which turned out to be horrendous; the sonographer spent a good deal of time leaning on & therefore pulling at the stitches in my right drain wound. The nurse had to pull the stitch tight again *gag*. Mum & my other sister came to visit through the day which was lovely & since I was no longer connected to machines & able to wear normal clothes, Jake brought Charli along for his evening visit. It was the first time I had seen her since the night before the operation & the longest time I had ever spent apart from her before. It was horrible to not be able to cuddle her properly but she sat happily in the chair next to me & ready 10 Silly Wombats over & over while Jake & I reminded her to use her inside voice every few minutes. To keep Char occupied, I got her to take me for a walk around the nurses station - something I had only been able to accomplish earlier that day, very slowly. She made herself famous, waving & giggling at everyone she passed; the nurse from my room rewarded her with a chocolate.

Wednesday came & I was cleared to head home, big sis had come to pick me up but it took forever to get properly discharged, which meant waiting in the Transit Lounge for an hour & a half. I started to get pretty anxious sitting there, I'm not sure why but it was a god-send when the pharmacist finally arrived with my medication & I could leave. After such a gross few days in the hospital, it was exciting to be in the comfort of home and begin the next stage of recovery.