Expectations and a reality check

I am home again and happy to be here!

This week has been massively full of appointments, and meetings and honestly, not much else.
I've never had 3 specialist appointments more different within one week and it has got me thinking about why?
Did I have too greater expectations? Too little expectations?  Was I more interested or involved in one appointment over another? Why, why, why!???!

All the doctors appointments were made to be with professionals each at the same technical level as another within their specialities, yet why are the experiences for me so different.
What do you guys think??

Tuesday was a massive day!
It involved a trip to my autonomic neurologist who is located 2.5hrs away. The day started early with my carers arriving early to get me ready for the day. Thankfully I had 2 of the better ones on shift so things were actually done and I wasn't left hanging like so many other days. Once I was ready I began the torturous wait for the paramedics to arrive within time. I was pretty nervous about it all because last trip they arrived really late, with exactly 90minutes to make the 2.5hr journey. I was very stressed about it but luckily on that day I got 2 great paramedics who were both flexible and did me the illegal favour of driving a large portion of the journey with lights and sirens & a quick dip over the median strip onto oncoming traffic in the dense part of the city. Thankfully the crew on Tuesday arrived with slightly more time to get there than the prior trip but still had to drive at 140km/hr all the way, so it was a partial lights on trip.
Side note: As a once a proud owner of the cutest little black Echo, "Ecka's Echo" to be it's exact name, I get a tad jealous everytime I see the paramedics using the lights. By no means did or do I want to be in an ambulance under any circumstances but having the option to part the seas of traffic if I had made a wrong turn or running late would've been quite handy. For now though, I'm a full-time passenger in my big blue car which has been modified for transporting me whilst I remain sitting in my wheelchair. I'd love to sit in the car seats in the future but for now I don't have enough core strength & stability to do so, not to mention the fact I still cannot sit up outside of my supportive chair. No lights for my big blue car, what a bummer!

ANYWAY back on track....
This appointment usually happens every 3 months face to face and during the inbetween times my Drs communicate via emails & phone. I'm always hopeful going to these appointments. Mostly there is nothing outstandingly exciting like a drug to cure me (I wish!) but my Dr always seems to have a new viewpoint on something, whether it be; making medication adjustments, discussing exercise regimes, how I'm progressing, or adding other ideas for managing all of the different organ systems that have been affected by the autonomic failure. I always leave knowing just that little bit more about how to manage an element of my condition, so I look forward to what is on offer.
My doctor is a 'no shit' type of person and I love it. She calls everything as it is and is as blunt as a butter knife. I was first introduced to her mannerism when she started me on steroid medication upon my first visit and in response to me asking if I'd expect any changes on it she said "you're going to get fat, deal with it." Slightly shocked at the time but happy, as for me, that directness is fine and I like that she can sometimes see the situation black and white, raw and honest. The appointment this week was no exception. I always go into the appointment with my parents and 'Gretel' as support and mostly, whilst I have been in hospital, the nurse that has accompanied me on the trip has come in aswell. I love that in the appointment my doctor talks to Me. She looks at me, asks questions to me and is really only interested in what I speak about, as if no one else is in the room. I appreciate that she is very patient-centred and does not feel she needs to talk to anyone but me.

This appointment was a success. We discussed a number of things that have been happening and she commented that I looked much better than when I saw her last (3 days prior to my 2nd bout of sepsis in 4 weeks). There were plans put in place for medical tests to be run, a port to be placed (as I literally have no viable veins to cannulate and need to have an IV line at least 4 days every month), discussion over her opinion to increase a drug and a few other things. She had all the time to talk and I was able to ask any questions & so was my family. My sister, being a medical student aswell, always has a good chat about anything she's thought of which is great. At the end of the appointment plans were made for her to get in contact with my GI specialist, urologist, rehabilitation consultant and local neurologist. Then we made our trip home trip home which was another fast run which was wonderful considering how unwell I was and the thrilling conversation with the old paramedic guy who just wanted to tell me about his and his wife's tattoos the Whole time! Ahhh!!!!
Exhausted is an understatement of how I felt after the trip, but as I reflect on the outcome of the day, I am content. I feel my questions had been answered, I was respected and listened to, progress was happening, a plan was  introduced and medication options were open for exploration. I am at ease once again and ready to continue on my path of optimism. The best line my doctor says at almost every appointment is that she continues to remain "cautiously optimistic" at this stage, and that is fine by me!

 I hate mornings and I have NEVER been a morning girl. I feel violated by my alarm clock if it rings earlier than usual and on Wednesday it rang it's heart out. Still tired and recovering from the big trip and subsequent autonomic flare of symptoms I had to be at another specialist this morning. This time it was a dermatologist appointment at my major local hospital. I arrived just in time for the scheduled appointment accompanied by my nurse. I was looking forward to this appointment to find out what
this new and strange rash was and also have a check over of my current medications for my severe
 psoriasis, which joined the party when my illness presented itself. Once being seen by the admin staff we began our wait. We waited, and waited and waited... After falling asleep in my wheelchair I woke up after 1hr and 20minutes with my nurse still waiting. I had still not been called in for my appointment at this stage. Finally after another 15minutes a group of 3 third year medical students called me in. They then spoke with me very vaguely about why I was there. They didn't even ask about my medical history despite me sitting in front of them in a big electric wheelchair which I found odd. Enter Dermatologist Dr. He is clearly busy and rushing and I give him the reasons I am there. He tells me I most likely have an allergy to penicillin antibiotics and need to see an immunologist for further allergy testing just to be sure, he tells me I have an infection inside my nose, and finally he rambles out a complicated medication name I have not heard of and verbally spews a new medication regime at me in under 2mins. He and the unhelpful students leave in under 10minutes with a promise to return. My nurse 'R' and I sit in the consult waiting as I get more uncomfortable and dizzy from being up so early and after 45minutes the Dr walks past and says "Oh, I forgot you were there, sorry. You can leave." I reminded him he was going to prescribe an antibiotic for me so he does that and sends it in with a nurse and then we leave. It was an appointment that I felt furious, frustrated and excessively time consuming all for nothing. The whole event felt like it was an effort for this specialist to do his most basic job of consulting a patient. He was clearly a very educated and intelligent Dr but he was run off his feet and I was just another number in his waiting room. This appointment left me thinking about how is it that within 48 hours I have seen 2 consultant specialists in their fields & my patient experiences couldn't be further from each other. I started to wonder a variety of things

Was it because I was less important?
Was it because he didn't care?
Was it because he was too busy?
Was it because we didn't have a history?
Was it because I wasn't as interesting?
Is this the typical way this department is run?
Why?

I woke up the next morning and was mad. So mad that I got some guts and called the
dermatology department and spoke with the supervisor in charge. I expressed my frustrations and so she then followed up on my story and returned my call with a sincere apology about the poor management of consultation and re-scheduled me in for next Monday the 8th. Second times a charm right???  I hung up the phone and wondered if this next appointment would be worthwhile or different. I am still wondering this right now to be honest, but I will attend in hope of some transformation from sub-standard to acceptable practise.

My third specialist appointment was with my GP. My GP is lovely and kind but as far as knowledge of my conditions, she is clueless. Before getting sick I was living away from home and didn't really have a steady GP. I was relatively healthy and didn't need to have a regular person, so when I became unwell and was close to being discharged, my mum found a nice GP who was willing to be part of my team. Not only was he interested, intelligent and very good looking, I felt like he cared.
Unfortunately for me he had to move away and so I had to start over with another Dr, this time a lady whom I will call 'Dr B'. At first she did not want to be involved in my case and encouraged me to see another doctor within the practise, but I had done my homework and none of the others were suitable so I stuck it out with her. At my second appointment I asked if she would be happy to continue seeing me and she was much more at ease. As I've barely been home enough to form a proper relationship with her we are still working on it. The thing that's most surprising to me, is that every time I come in for an appointment, I run the entire thing. I come in with my list of medications and dosages I need scripts for. She writes them. I request blood tests that I know I need, the papers are handed to me. I explain to her I need a new referral update, it's done. Basically in any instance, I discuss an issue I'm having and then request and receive the necessary. It often feels like an interview or administration activity. I write a referral I need worded correctly and Dr B types it up on official paper and signs it. At every appointment I update her on the specialists I have seen recently and she comments on how she thinks I look great and then I leave. If I leave and then forget something I had needed it's totally my fault as I know I only get what I request. Sometimes I get very frustrated as I honestly think I could do all of this myself. I want to share this job of GP and not be entirely reliant upon myself to think for her. I do have a better understanding of my condition and my requirements surrounding that but I am not a trained professional. I do not know about everyday bugs and sickness that every human encounters and I am not equipped or educated in this. I am grateful that she respects that I am educated about my conditions but occasionally I would just like to pass-the-buck on the rest of the GP stuff and let her step up and take the reins.
Again I left this appointment thinking about how different these 3 appointments were and was I being unrealistic to expect similar standards of each professional or should I be adjusting to their ways?
I ask myself:
Is this is what a typical GP relationship is like?
Is this how 'it works' when you have a chronic illness??
Why do I have to be the doctor and the patient?

As this week has come to an end I look in my calendar to see that next week I have yet another 3 specialist appointments, this time with my GI specialist, gynaecologist and radiologist. I wonder how different these appointments will turn out to be considering I know one specialist exceptionally well, another this appointment will be the second meeting and the latter one I have never met before.
Should I expect a similar level of treatment and care?
Right now I'm not going to think much about it, instead I choose the option to remain cautiously optimistic and see what the week brings...

Do you expect the same standard of treatment from professionals at the same level in their career?

Bed 12 & a positive outlook

This time it's bed 12 for me. I'm back on Ward Hope but this time my bed is not next to a window. I remain in a 4 bed shared room but opposite the maroon door to the toilet. Just charming. Now I know why my roomies were always asking people to shut the door, looking into a toilet as a centrepiece isn't the most inspiring picture. I'm not overly pleased at being back in hospital but I know this will be only a short admission so I have no reason to complain. I'm sitting here thinking I have now been in every shared room except for 1 on this ward. During all the years I've spent here, each admission they have barely moved my bed numbers whilst the other patients move around me, which has been good.
With being in the one place I've enjoyed decorating it. I'm too unwell right now to find a picture of my best set up room but it was awesome. I had fairy light, stuffed animals, stickers, dream catchers, butterflies and pictures of friends and family everywhere. Now though, I'm happy to have an empty corner with no decoration as it signifies this will be a Short stay only.

This morning I was extremely nervous about returning to hospital. I hate it so much and although nearly everyone on my ward are kind and caring I always find myself warry of what they think. I wonder what they are saying behind my back and what judgments are being made of me this time?.?. Each time I leave hospital I think to myself and say a little prayer that this will be my final goodbye forever as an inpatient, but it never seems to work out.
In all of my previous admissions the shortest one to date has been 6.5 months. I know this one will be far shorter than ever before so I guess it's less daunting and upsetting, but it still saddens me.
I am currently sitting in my electric wheelchair tilted back and waiting. I'm waiting for many things but the 2 main things are my pressure relief alternating air mattress (that comes in from a company as most patients have typical mattresses and don't require one) and the other thing is the PICC team to come and attempt to put a cannula in to start IV infusion asap. My veins are completely shot to the point where no typical nurse or Doctor wants to attempt them anymore so we rely on the specialised team whose primary job is inserting IV lines to put one in for me. Mostly it takes around 3 attempts by the experts and ever so often a few get it in first go. The worst cannula I've had was recently when several attempts were made and then finally an on call dr got one in, in my index Finger. OUCHY but super impressed by it!!
Wanna see??

Ok so the cannula is in on the 3rd attempt so I can't complain. The lovely nurse Emily came & she's the best at finding my veins, this time was again proving tough as my veins like to run away and hide for some ridiculous reason. They've been overused and most have either blown or scarred so aren't a
good viable option. Again she mentioned the need for a central access, which seems to be coming up frequently the last few months. Admittedly I would much prefer not to be stuck multiple times every few weeks or days depending on the need so the idea of a more permanent access is not too concerning to me. Well...kind of anyway. My primary Doctors are quiet hesitant as my PICC line got badly infected resulting in sepsis a few months ago and because these lines go direct into the heart, the risk of infection becoming more serious is disconcerting. We will see I guess, so for now my little IV is doing a ok! 😊

It's night time now and my fluids are running smoothly and my air mattress is doing it's thing and keeping me as comfortable as possible. I'm actually pretty relaxed although a little sad too. As I'm
lying here all my kind nurses are breezing in and out saying hi and catching up on my gossip from home. It's so kind to have them be so caring towards me & interested in my life. Some of them,
despite being my nurses, feel like friends.  When I think about it, most of these people know me better than some of my closest friends and extended family. Over a long period of time like years in my instance, it is practically impossible not to know each other. In the real world not every personality clicks and that is the case here too. Generally the relationships between the nurses and myself are mostly that of totally raw & trusting relationships although there are always the inevitable person or few that I simply do not click with, but we make do.

So here I am back again after less than 1 month at home and they've made me feel the best I can about returning yet again. We've shared jokes about how I love the hospital Sooo much I just had to come back, or that I missed all of their faces & I was getting homesick from my second home on ward Hope so had to find a way to return. It's a jovious welcome and I appreciate them trying to make the mood lighter. The nice thing about always getting admitted to the same ward is that I know these people are on my journey and rooting for me to succeed and get my life back. It makes it so much easier having nurses who actually care about you!

It's been a couple of days since I picked up this post to write again because the last 2 days have been pretty rough, but today is slightly better at least. Tuesday I had my monthly dose of IVIG. This consists of blood products and is a big part of the reason I am going ok & made it home recently. It's a blood infusion of all antibodies and plasma from over 1000 blood donors per vial. I have a number of vials & it is doing wonders for my autoimmune dysautonomia. As a result though I end up with varying degrees of migraines, nausea and light sensitivity problems. This round of  IVIG infusion had proven to be similar to others before so having a nasty reaction currently which sucks. Lucky for me though the IV fluids have been running at a high rate non-stop for 4 days now...yay!  Much to my disappointment I've been having terrible sleeps thanks to some male patient in the room next door banging on his bed rails all night long. It's amazing how quickly my body has snapped back into my hospital sleeping pattern of awaking every 45minutes.
 Every. Single. Time. I was just getting into a better pattern at home and was sometimes lasting 2hrs before waking but it's all back out the window for now - another huge incentive to getting home asap.

Today I've woken up hoping to be significantly better, instead though my nasty cold is still lingering around with my nose completely blocked so I sound like a chipmunk. Thanks to my awesomely cement-like pillow, my nerve at the back of my neck is trapped again resulting in the return of my occipital neuralgia which makes my scalp numb and a big headache behind my left eye. These things plus my migraine, nausea and light sensitivity are making my day pretty gloomy.

Just to add salt to my wounds the ward rounds with the medical team have just been to see me. They can tell I'm not doing great so have further increased my IV fluids to help with my head and hydration levels. I mentioned to them that if all of my body systems are semi under control tomorrow I want to go home. The consulting Dr filling in for my main Dr knows me very well and told me not to push things beyond what my body can handle. It's the sentence I continually try to ignore. He said he is uncertain if tomorrow is best and advises me to stay as long as my body needs to recover even if that means into next week, booo. The team discuss calling the PICC team again to re cannulate before the weekend which makes me think now that I shouldn't be so hopeful, as it's not looking good to leave tomorrow.  The reason I'm so set on going is that I am supposed to have my physiotherapy and OT sessions and I really really want to get there - but if I'm feeling how I do now it's going to be physically impossible.
Wish me luck team!!!!!

I will write a better post soon with some funny patient stories and hospital musings. For now though I will stop writing and begin a stare off with yet another delicious meal, colour themed orange this time. Carrots, tomato sauce topping, orange stained cabbage and a so called vegetable lasagne. Hmmm...


xoxo

My medical merry-go-round

I've been writing this post off/on since Monday...


So just into my 2nd week of being home from hospital and things are going ok. This week I commence my outpatient therapies for rehabilitation to get me going again. Don't get me wrong, I'm  really, really happy to be getting back into it, but I'm also feeling quite bleak at the fact that I have to re-join my medical merry-go-round.

I've laid here tonight thinking how good it has felt to be away from the medical merry-go-round for the last fortnight or so, but truth be told I have not been away nor has my merry-go-round stopped spinning. For whatever reasons, I feel like I've had a complete break and seen no one in the health profession for ages. In actual fact though, I've seen a specialist urologist, my GP, had phone contact with my primary consultant, constant contact with my pharmacist, had a registered nurse come to my house to perform a small procedure and I've had home carers & nurses everyday; day and night.
I have not escaped the merry-go-round at all so I don't know why I feel like I've had a 'break'??

Reality is I'm now on a different version of it. Instead of a carousel of countless horses, I've switched onto one of miniature ponies...it feels calmer and sweeter but really it's going at the same speed, with the same colours, with the same music, with the same movement and all together, an identical orbit. A round and a round and a round.....

When I stop and think about my life there have been many fleeting merry go rounds, be it years of studying for the one degree, working a variety of casual jobs through school and university, or moving out of and back into the family home. These have all been rides where i have jumped on for a time period and gotten off once the ride had ended and i was ready. These merry go rounds have served my purpose and have been rides that have provided me with consistencies and constants in my life. They have kept me on the appropriate paths and built stamina and drive. Unlike this, i currently find myself so desperately wanting to hop off and move onto another ride but simply can't stop spinning around and around.
 In all of the merry go rounds in my life prior to this medical one, I've had choice. I could stop studying if I wanted, quit work, choose a new favourite colour or clothing item, I could do whatever I wanted and I had the total liberty of doing just that. Now though, all I want in life is to get off this medical merry-go-round. I want to stop the ride, remould my life and start back where I left off in 2010 prior to illness.

On my medical merry-go-round I continue to go around and around and around like a clock in forward motion, never stopping, no option to hold time or deviate from the path. It's draining and emotional and is a ride that will forever change my life.
I'd give anything to jump off if I could.

While the rotation of my merry-go-round remains the same, the colours on it change daily. It can go from being painted a bright yellow & cheery colour to the deepest darkest black ever witnessed. This is all relative to the people I encounter, how I am feeling, feelings of others around me, my emotions and what the mystery of each hour of each day brings.

At home my medical merry-go-round feels more distanced from me, like I'm on a mini-break. The sad reality is it's just the added distractions which give the elusion that its slowing down or changed. 


Tuesday my medical merry-go-round re-awakening went something like this...

Today was my first day back at the hospital for outpatient treatment. The morning started as any other at home. It wasn't great but it wasn't terrible. I had my 2 nurses show up to get me up, showered, cares and ready for the day so that's always a good thing. We got me organised for the day which included getting my meds sorted, packing a bag, putting together the supplies I needed to take 'just incase' and other insignificant bits and pieces. Once I was ready for my trip to the hospital the nurses left and my next part of the journey began.

So I got in my wheelchair and my sister loaded me into my big blue Kia which is a wheelchair modified vehicle and off we went. My sister took me today as she was available to help out which was great, as it meant I saved more nursing hours for longer & more challenging days. I got into the car and we travelled the old faithful bumpy road to the hospital, where I continually passed in and out of consciousness and became more nauseous by every kilometre. Driving along and getting closer to approaching the hospital started to make me even more dizzy (if that's possible) and my feelings were mixed. I want to get better so I'm happy to be here, but what if this medical merry-go-round never stops?

We arrived safely but personally exhausted and nauseated from the trip of the usual countless loss of consciousness episodes. As soon as I roll into the hospital doors I see faces I know everywhere who greet us. The kitchen staff on their break say hi, the nurses on the opposite ward to mine wave whilst on their morning tea break, the OT aide chats to me about the latest bachelor (he's a mighty fine specimen btw), I run into the wardsman and we talk about how fast my chair goes and after avoiding saying hi to Ward Hope today, finally I reach the nurses at my day hospital ward where we smile and exchange pleasantries. I am grateful that they all make me feel 'at home' but my heart inside is breaking as this is not my home or the life I want. I want off the merry-go-round now.

I then had my first session with my new OT and a physiotherapist I've known for years. Today's session involved sitting. It was to practise & evaluate my sitting balance with my feet over the edge
of the bed and no back support. It was super difficult from a physical aspect as I could feel every abdominal muscle flickering on and off and my core and back strength struggling to keep me  upright-ish. I sat there for the longest time I have sat for over 7months. Of course not continuously sitting as I was passing in and out of consciousness every 20-45seconds, but it was great! 😊
In order for me to sit properly I had the physio at the back, who is used to catching my neck every time I lost consciousness & go all floppy, and the brand new OT supporting me from the front and correcting my posture, all whilst trying not to look completely dumbfounded at my "unique" condition which was clearly freaking her out! I'm so used to people going "oh wow, I've never seen anything like this" that mostly it is not meant as offensive or rude, I find it's hilarious watching peoples reactions to me - after all if you don't laugh you'll cry right!?!

After my session I had my beer goggles on and so was driving my chair zig zagging along the corridor whilst trying to look composed. I felt off my chops but hey it's a hospital so who doesn't! Meanwhile, 'Evelyn' just laughed with me and steered me away from the walls closing in on me
(they were I swear)! I recovered a little, took my tablets, did not vomit (score), got slightly better vision and got loaded into the boot of my car for the trip home.

Once we got home and settled we had delicious wraps for lunch, and yes I'm still marvelling at the food options outside of hospital! By now I knew I had to get catch up drinking fast. With my autonomic conditions high fluid intake is a total must. My  blood volume is lower than the average person so each time I stand up, sit up or put my legs over the edge of a chair or leave them hanging my heart has to pump super hard and much faster than normal (tachycardia)  to try and get some blood to reach my brain and not starve it of oxygen before I pass out. The less I drink in a day negatively effects me alot and causes me to lose consciousness more easily. It also prevents some of my drugs from working effectively and never-ending track records of kidney & other infections, dehydration and exhausting fatigue. Fun times and all very familiar experiences since being on this medical ride. Ugh.

I slept. I was so exhausted after Rehab that my body just wanted to lay down and rest. I really hate the fact that so often my body is dictating my life. I had a number of things to do in the afternoon and I did none of them. When I woke up I was flicking through my phone and came to a text message
from one of my amazing best friends Miss M. This message was typical of her kind self just checking
in on me to see how everything is going. We got texting and then she asked about what's on for me over the next few weeks. I started to write back 'not much on, just hanging at home' but as I was typing I found myself deleting the message and starting over with the truth. The truth is that despite my homecoming and temporary feeling of escaping on a break, this medical-merry-go-round is spinning at its typical pace at the moment.
I looked through my phone calendar and notes and was just defeated. The rest of my week involves;
-making an appointment for a scan
-another appointment for an ultrasound
-having a small procedure
-getting my medications sorted for the week with the pharmacist
-another outpatient visit to the hospital for therapies
-a course of internal injections by my specialist (Ouch!!!)
-a GP appointment
-formulating my next roster for the nurses
-leg exercise and core training at home

WOW. How sad. And that is literally this week. I won't mention the week to come I'm a fortnight as it's just depressing! As I was writing this I was sad. Not because I feel sorry for myself but because this medical ride is stealing my days. I looked at my week and noticed not one thing on the list was outside of my health. From when I first got sick and still today I refuse to let my illnesses define me, but on paper it appears it is winning. Around and around this viscous circle I go...

So bed time came and my mum helped to sling lift me into bed. All my medicated topical stuff is applied and yet another round of medications swallowed and drank. My bedrails, leg splints and overnight equipment are reconnected and put on and the day is over.

As I type this out its late in the night and I find myself reflecting on the experiences of  today. This morning I was entertaining the thought that I had been on a break from this constant battle. For a moment life didn't feel like I was engulfed in amongst the horses and ponies of my medical merry-go-round. It was a nice thought but right now this is where I am and probably for a lot longer, spinning around and around on my medical merry-go-round.

Someone once said:

"Would you like to know your future?
If your answer is yes, think again. Not knowing is the greatest life motivator.
So enjoy, endure, survive each moment as it comes to you in its proper sequence -- a surprise.”  

Personally, not sure that I'm so fond of All surprises. Regardless, I will continue to survive each moment and be happy to have a dream for my future - a dream to be better. That will continue to be my life motivator.

xoxo

The wonderful perks of being home...yaaaay!!!

So I've been thinking about this over last few days and although it's been less than 2weeks at home I thought I'd put together a few of the most obvious things I love about being home.

I'm sure as I stay home longer and longer in time this list will be huge and only get bigger which is good - that's what should be happening right?!?!!

Family. 

Being at home has meant seeing my family 24/7 and it has been (for the most part) great!!! Whilst in hospital it was family time weekdays between 4-7.30 and weekends 12-7. That's all. No good mornings, no sharing lunches and they were never the last face I saw before falling asleep. I love the freeness that has come with being home. We can have breakfast lunch and dinner together if feesable and it's not a big deal, doesn't need permission and we can simply just...be.

Being in hospital waking up to a different patient every so often has made me appreciate these little things so much more. At home there is no fake interactions, it's simple, be it a morning wake up from mum, a goodnight kiss on the cheek from dad, seeing my brother yelling bye as he flies out the door late for wherever he's meant to me, having my sister sit in my room for hours on end watching terrible tv and chatting or a typical grunt of 'morning' when it's too early for Evelyn to deal with the world. The thing about all of this is that it's all real, face value interactions and I wouldn't trade them for anything. 

In this short few days at home I've already had an argument with every member of my family and I've got to say it felt GREAT 😊 (sorry guys)! To be able to actually say what I think or even speak in a higher decibel has been somewhat enjoyable. In the hospital setting on any ward it is not common curtesy to scream, yell, talk loudly or show any aggression towards anyone. Even if you've dreamt of slipping bed socks down the old ladies throat, you just can't. It sucks. Some days I just wanted to scream for the sake of it, I wanted to yell to wake up all the patients who woke me, I wanted to turn my tv up and be as deaf as the other dinosaurs. I had no reason to do these things but often felt the burning need to just give it all right back to them.

Coming home to my Missy pup has made me so happy. I love that she remembers me and cried with joy when she saw me this time. She's been by my side everyday at home, both morning and night. I love her to death and cannot imagine the world without her cute little white furry face. Her unrelenting love never ceases to amaze me. If I want a cuddle so does she, if I want to chat so does she, if I want to sleep so does she and if I want to go for a walk so does she...although she actually can do that and right now & I can't, that makes me a bit jealous. Yes I said it, I'm jealous of my dog walking around!!  Do you think my Missy is cute as a button???

Another beauty of being home is the noise and the silence. Both are music to my ears. This may sound totally mad but I've learnt that there really are different silences. At home I find myself falling asleep to the sound of the crickets outside, my special alternating air mattress and..and...and..that's all. No one farting, no one screaming, no one talking in their sleep or snoring and no white noise of the big old air conditioning vents on ward Hope. The new silence is deafening but soothing. It has a calming effect on me and I feel safe. Admittedly I am still getting used to this new silence but I am enjoying the absence of every single one of the silences that were there in hospital. What does your silence sound like? 

Waking up to the sound of my alarm and not other people talking, or a nurse saying "wake up Erika it's breakfast time" while pulling off my leg splints and opening my blinds is so different, but in some ways it's also the same. Now being at home I try to wake up to my alarm before my home nurses arrive, but mostly that fails and somehow my alarm magically turns itself off - I believe anyway. I usually awake to my beautiful fresh candles being lit by the carers and a soft morning greeting from them. It's very simple and quite, and an ok thing. No other people around, no expectations to start unwanted pleasantries with other patients, it's just me in my room, waking up like a semi-normal person (Please note the 'semi normal').

Enter the Food! Shall I sum it up by saying how much I miss my delicious cold toast, stale sandwiches and beige coloured food dinner plates. Yes I miss them soooo much I would be happy to never see any of those green serving trays for patients ever again! Yuck yuck yuck. I won't go into
how bad it is today as I really do think it's worth it's own nasty little post sometime, but I will go into
home food. It's not a gourmet dinner every night but it mostly freshly cooked meals that have different tastes and colours and look appetising. Moreover, dinner is not at 5pm every night and I can choose when to eat it rather than being given a 30minute window before it has to be disposed. I
haven't gone all 'fancy food' or anything but I'm enjoying the simplest things done well like pastas & meats and soups as they are worth eating. It is so nice to enjoy the food and the environment I'm eating it in for a change. The summary of home food = yum yum yum! 

By no means is this the last advantage of being home, in fact it's one of the best. That my friends is having Foxtel. Having been an inpatient in hospital for the switch from analogue to digital television I have come to really appreciate different channel options. Prior to digital tv, I had exactly 4 channels in hospital on my big box of a thing hanging up above my curtain railing. Not only was the screen all old and fuzzy looking with a prehistoric sound box, it just totally sucked. I was lucky because my health insurance covered the costs of the tv, but other poor buggers were left with the option of dying of boredom or paying a hefty $35 per week for free to air tv. As you can imagine, coming home to a brand  spanking new tv in the living area where I spend a lot of time has been great. I can watch more than I can count channel options and I can have it up so loud it's deafening if I wish. I don't want/need this volume control but I am happy to not have to keep my head on a slight tilt to hear the tv like I did in hospital, just so I could hear the broken speaker box without disturbing others. It's quite liberating having the choice of the tv screaming at me and being able to choose any channel and any sound volume!

As you've probably picked up on I am enjoying being home just that little, tiny HUGE much. Every aspect is better!! I could probably write a detailed list on all the little trivial things I have found to be so much better in my short few days home but it may just go on forever.

As I look around my house there are things I am looking forward to enjoying as I get better and better. There are a few things that I have my eyes set on to achieve in the future...

Since I've been in hospital this admission my parents have got new carpet for our house, including
my bedroom. It looks beautiful and soft and very nice thick quality and I cannot wait until one day
(hopefully soon) I walk on it or at least stand on it for a while. When I was healthy, this really
wouldn't have been a big deal to me and honestly I would've never thought it would be on my to do
list at home, but for now I'm looking forward to it.

The kitchen table is a big element of our living/dining area. It's big and beautiful and one day I am going to sit in one of the standard chairs and tuck myself in under the big wooden bench and have a meal. Don't get me wrong, I can sit at the table in my electric wheelchair with help to have a meal except I cannot actually reach the table to put my plate on and eat off of it. Right now, my stable table is my bench and portable dining table which works perfectly for my current needs.

Before I got sick I had a huge queen bed with black 4 posts and a beautiful white princess drape/canopy over the top. It was a bed fit for any young lady and it felt lovely to sleep in such a pretty place. Sadly, as I got sick over the years in hospital it became clear that coming home would mean I need a hospital bed. A single, ugly hospital bed with side rails, just like the one I'd spent
literally years lying in, all bar the trade off of having a wooden bed-head instead of white plastic to make it more homel y. Personally I don't think a hospital bed in any situation outside a hospital is homely or looked upon as pretty and nice. The one thing my hospital bed has given me though is comfort. Comfort in the fact that I will not fall on the floor when I roll over and go unconscious. As soon as I stop rolling in my sleep and going unconscious that big black bed is coming back in!! Here's a picture of my current room with new carpet and an attempt at making my hospital bed look just that little bit more normal- or as I say prettified.

Another goal is to get out the back by myself. The back door to our outside area is a glass sliding door with a screen door as well. It is impossible for me to get out the back at the moment without help. It's hard to manoeuvre the chair over the sliding door track and it them goes directly onto a ramp. I would love to be able to just go outside on my own without dramas. Our undercover area is lovely and most of all the pool is so relaxing. Ofcourse I'm not that ambitious to want to go in the actual thing, but to be able to sit out there and get some much needed sunlight with a drink in hand is a goal of mine. It's like a little paradise..look!!

There are alot of other things I'd love to be able to do at home myself but for now I'll keep it at that. So here is my mini home bucket list...do you have a home bucket list???

Much love xoxo

Just a pretty picture

Flowers are beautiful. They brighten up the room and the people within. Especially me. I took this picture of my most recent bunch of flowers as they are just so bright, colourful and vibrant. They really help lift my spirits and continue to fight. It's amazing such a simple thing can completely transform a mindset. I am happy and I am grateful for the simple things.

xoxo

If I had a magic pill...

Would anyone else like a magic pill?
Not just for people with illnesses but an individualised magic pill that could alter your life or at least guide it in a different direction. I think most people would want something of the sort and I am no exception.
Right now I want a magic pill with multiple purposes to serve all of my problems and change my life for the better. I find lately that's my fallback line and it goes something like "oh if I just had a magic pill...". I think it's my way of brushing things off that are actually really true & pressing to me at the moment.
If I had a magic pill right now these would be my priorities

1. I think it's selfish but honest - my health.
I take so many pills per day that I've stopped counting. At last count about 2months ago it was a whopping 74 pills per day, no magic pill included. In my ideal bubble of a world I'd want my magic pill to allow me to sit up again. I just want to sit upright and maintain that position for a while. It's quite surprising the amount of core strength and stability that goes into such a simple movement for me, not to mention the concentration and symptoms as a result. Currently I am back to basics but not even close to as bad as I have been so I am thankful for that, but I still want more. I want to take the magic pill and be able to sit my wheelchair bolt upright and stay conscious. I want to sit up on a normal chair or lounge like everyone else around me. It seems so meaningless to some when I say this, but to my family & friends on my journey it would truly be like magic. I know I'll get there eventually and it might not take long, but right now, in this moment, it would be magic.
Being greedy on the medical magic pill I'd also like for my other autonomic functions to be better. I'd like to wake up without pain & nausea & the endless low bp & high hr measures - just to name a few. I have no doubt I would feel better in so many ways and maybe a little concerned at the feeling of being better or different as feeling good is so foreign to me these days. It wouldn't be a bad thing either way - I'd take it in a heartbeat (or 100+ if you include my tachy)!


2. This magic pill would be to take the load off my family.
Over the last few years I have caused many sleepless nights, anxious waits, missed days or work & study, tiredness & an unfathomable amount of sacrifice. I'd take the magic pill in this instance & relieve them of their worries and concerns. I would be well enough to function for periods without them so they could go on a mini holiday to relax and rejuvenate without worries. I would cook them dinner and clean the house like old days. I would have things ready for them and help them with simple tasks and jobs. I would take a million magic pills if it meant I could give them all their life back. I forever feel guilty and in dept to them for what they've all done for me. I know they don't think that way or want me to feel this way but how can I not?   I've gone from totally independent to totally dependent on them and others too. My hope is one day I will get more functional and try to contribute to their lives in the best way I can.

3. A magic pill for my studies.
As I've previously written, my studies are a huge factor in my life. Often my want & desire to return to my study has been a massive motivator for me. During the months where I've been to sick to get out of bed or sit the bed head up, the thought of being able to work in my chosen profession has kept me going. I'd take the magic pill and find clarity. I need clarity. Currently I remain submerged in the murky waters without direction. The magic pill would put it to me straight and tell me upfront if it's still worth continuing to fight for a course that I may never be physically able to work in. I would like  the magic pill to assist me to be physically healthy enough to get through the degree and meet new peers and provide me with greater knowledge.

4. Have my social & love life
This magic pill request is simply to make my life better. I am thankful and grateful for my life but I am forever wanting more. This magic pill would be a catalyst for having a better social life & love life. I see all my friends who are my age living these amazing lives and I can't help being envious of them. I would love a pill that would alter my body image and give me the confidence to feel ok in my wheelchair and my life. I'm forever brushing off and joking around about my total lack of love life. In reality it does upset me as I feel so behind the eight ball. I still struggle to accept the new me as the real me (but that's another blog post coming soon). If the pill gave me more acceptance I think I would be in a better mind frame for love. As for socially, the magic pill would simply allow me the health and positive attitude to go out and catch up with friends. Often I'm so tired or feeling unwell it never happens and I feel like my body is betraying me. I would like to not miss out on the big occasions, like weddings. Since being in hospital since 2010 I've missed being a bridesmaid multiple times and missed a number of weddings, at least 5 I think. I wish I had access to the magic pill back then as those are moments I will never get to share with those important people ever again.

The list I could continue with is endless so those are just a few of my dilemmas right now.

A magic pill is a strange concept. In some ways it makes me feel greedy for wanting it but in other ways it encourages many thoughts about the "what if" in life. If I was given a magic pill right now I'd probably take it and potentially regret it. Like any pill, I'm certain the magic pill would have side effects and they could be very detrimental. So much unknown....Maybe I need a crystal ball instead????

What would you use your magic pill for?