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Feeling Ostomistic
Wednesday, February 07 2018

CONTENT WARNING: DISCUSSES DEATH READ AT OWN RISK

What a massive couple of weeks it has been, if you were following along on social media you may have seen my posts from hospital updating on what was going on.

Australia Day, is often a day spent with family and friends remembering or celebrating what it is to be an Australian, I know the day has conflicted meanings and celebrations for everyone, but Jan 26th 2018 will be a day that I remember just how close I came to those pearly gates and how bloody grateful I am to live to see another day.


Taken Jan 26th, 2018 after "the event"

So this is what had unfolded:

On Tuesday Jan 23rd, I was brushing my teeth around 4pm when I had a really sudden sharp pain around my right kidney area and shot down my leg and my leg felt like it were about to snap. I hopped, literally, to bed and got comfortable and had a nap. I woke around 10pm and struggled to get up out of bed and then also get to the toilet.

The next day the pain in my right leg was a lot worse, I couldn't weight-bear and relied on Russ to help me move from bed to toilet back to bed. I was crying in agony.

Thursday morning I woke and trying to get to the toilet I was screaming in pain. Russ was heading to work and I called Palliative care who told me to call an ambulance. So Russ left for work and I went in the ambo to the hospital. I had fentanyl up the nose a couple of times and barely took the edge off, no amount of morphine was helping either. Russ went to work but by 10am he was at the hospital as he was upset and wanted to be with me. It was a comfort him being there as I was in agony and I was so scared. The pain was horrendous.

I was admitted to hospital.


In Emergency

The next bit is where things got dicey....

So overnight my heart rate went sky high, talking 144bpm (normal for me is 90-100). My o2 dropped too.

They monitored me but by next morning things weren't any better.

I remember friends messaging me around 10am and I replied back, I thought I made sense but it was all drivvle and nonsense but it looked fine to me, so I didn't think anything of it.

That was all I recall, I don't recall much after that point.

Apparantly, from the pieces I managed to compile in the days to follow, was that I was passing in and out of consciousness. I went into a deep sleep and they struggled to wake me.

I kept coming too during the "resus" which may have been around 3pm and saw bunch of folk standing around my bed, some were pushing IV drips in, someone pressed the big emergency button, remember my bed being wheeled to another room where doctors were talking to me. I was upset and frustrated as no one was telling me what was happening, turns out they were but I was passing out by the time I asked my question and them telling me what was happening.

I wasn't sure where I was and my speech was slurred.

They rushed me up to CT and did a full body scan, thinking I was having a stroke or heart attack. I am on clexane injections due to previous blood clots in my lungs, but also because the tumour in my abdomen has blocked off the major arterial blood supply to my small bowel and stomach and they were worried that maybe there were a clot in my small bowel (one of the forecasted ways I could die)...

So I was upset and asked them to call Russ, he arrived sometime after they called him (he was on his way to me anyway) and I calmed down a bit when I recognised one of the voices of one of my doctors off my palliative care team, it was just scary being unconscious and not being able to see who or what was being done to you and remembering I didn't quite know what was happening.

I did also keep telling them "I'm not ready to die today" and "ignore my DNR". I was adamant that NOW was not my time and I was crying saying "but I am not ready" and "I need to write my goodbye letters".

I was just so worried that I was dying alone and it was my fear.


24 hours later, still was on o2

So fast forward to post event, I was so hazy and tired. My body hurt from the siezures and all the medications, I was having trouble reading (still am) but also what I was speaking wasn't what my mind thought I was trying to say, even typing for a few days after were a struggle.

I am still so tired and exhausted, I am trying to rest, but it really has been such a difficult couple of weeks.

They don't know what happened, they think it were an infection, my leg is still giving me grief but I was just so terrified.

Had I stayed home and tried to "tough it out" at home like I usually do, things would be very different and I could have very well died in my sleep during the day alone.... which is one of my fears, is dying alone. Russ has a fear of coming home from work and finding me, he gets worried when he calls me as he leaves work (even before all this happened) that he never knows what is awaiting him at home... poor guy! This latest event hasn't helped his fears though.

But it made me realise a few things...

1. I am not ready, I still feel like I have so much left to do, including putting pen to paper and penning those difficult goodbye letters to my loved ones.

2. I have a newfound appreciation for every good moment of the day and just how grateful I am to be alive

and 3. That Russ has even more grey hairs now than he did a fortnight ago, but that I saw just how much me being sick has taken a toll on him.

But jokes aside, I honestly always thought that when it were my time to go that I would know that it was time and that I would feel this sense of calm and readiness, as if I felt accomplished and happy. Now, I worry that maybe there isn't ever really going to be a universal sign or feeling of totality and that maybe you won't know.

It has made me even more determined now to try and get my affairs in order and try and be the best version of me I could be.

So I am home now, pain meds have had a total overhaul, back to weekly palliative care visits and here's hoping there are a few more chapters left of my story.

They pumped me with so much fluid during the resus that my stomach swelled up really badly, so much that I thought it would just split open, so took duiretics to help shift the water and my stomach is resembling it's usual self but still sore. Even around my stoma was swollen from fluid.

It has been a difficult week adjusting to being back home, I am still feeling weak and tired, my brain still feels sluggish and I am just taking my time to rest and actually listening to my body for once. I am not going to push myself anymore and after starting off 2018 on a rough patch I hope theres a few good months ahead.

Thank you to all the love, messages, comments checking in on me, it is a comfort knowing so many care.

You're stuck with me for a little longer still, well I hope anyway!

 

Posted by: Talya AT 10:02 am   |  Permalink   |  3 Comments  |  Email
Sunday, February 04 2018

If you could see me right now, you'd see that I have THE biggest grin on my face. Imagine a Cheshire cat style grin....

Yes, it's that huge!

Why?

I recently got home after a short stint in hospital where on Australia Day I almost died, it has been a rather upsetting and hard fortnight but I am home now and recovering (and catching up on everything).

I am so grateful and acknowledge my own privilege in that I could come home this time, but also that I continue to live for another day.

I was so scared on that Friday as I wasn't ready to die, I had so much I still was yet to achieve and do and finalise. I was scared that I felt things weren't ready and my anxiety since has been sky high, understandably so, worried about when or how close the end actually is - which is looming everyday closer, it is terrifying.

I know I have so much I wanted to achieve and goals I had set both personally and for my blog, which brings us to today's post.

Back when I started my blog 5 years ago I said to myself:
"I want to work hard to help others with their stoma journey, I want to have a blog still valuable in 5 years time and I want to get half a million views and just hope that I have helped at least one person in my time".

So I remember a couple of weeks ago - before I suddenly got sick and went to hospital - I had looked at my site stats as I was updating my media kit for January. It was when I noticed that my blog views were sitting 15k shy of half a mill.

I said to Russ: 
"It would be awesome if for my 5 year blogaversary I hit 500k views and hit 2 big goals in one go!"

I am not writing this as an intended brag post or anything, and I know for some blogs 500k views is their monthly or yearly visit, but I am sharing this as I am feeling incredibly proud as punch right now.

5 years ago I was told I had early stage bowel cancer and was about to undergo surgery to remove my entire large bowel and live the rest of my life with a permanent ileostomy for the rest of my life.

I was scared 

I was alone

But I took a leap of faith and courageously started my blog.

I was worried that people would not be kind or respectful, or that people would be judgemental and rude. I also worried that maybe what I am trying to share wouldn't be read by anyone and wouldn't be providing value or meaning.

I was full of self doubt.

It is quite vulnerable when you put yourself out there and you don't know how this all would work out and how well your blog would be received. Especially given that it is a difficult and personal experience that I was putting myself out there during what is a private time of mine and my husband's life, but I knew that if I shared this openly and what I learned along the way that it could actually be helping someone somewhere. I know it helped me immensely to share this, gave me a sense of purpose.

Back then there weren't many ostomy bloggers, social media (instagram more so) wasn't as huge nor were those publicly sharing life with an ostomy, and ostomy life and living with a bag was such a taboo subject. It felt rather lonely and isolating, felt kind of like it was a dirty little secret and I wanted to try and change that and help the next generation of young ostomates to embrace their lives and stoma.

I had hoped that I could be part of the movement of helping to normalise life with an ostomy and raise awareness of that life as a young person with a stoma is still able and that life won't end.

So with hesitation  I hit publish on that first post and was surprised by what followed.

I was thanked for what I wrote, I found people who respected my writing and it has led to some amazing friendships and I found my tribe and community.

I felt valued, I found self worth and I found that there was a sense of magic in helping others to feel less alone as they navigated their ostomy life or dealing with new diagnosis and what comes next or even in finding themselves again.

I know it is scary and daunting sometimes, but I know how much better it is when you find someone who you can identify and relate to or read something that creates an 'ah ha' moment... I just hope that I have helped others.

My milestone, that I thought back 5 years ago was unrealistic and unattainable but I still held hope and believed in myself and backed myself. I learned a lot in that time not just about life but also about myself.

Thanking you

My blog wouldn't be what it is without you guys, my tribe and cheer squad

Of course me celebrating this moment would be worthless if it weren't for every single one of you who read my blog, support me and my writing and have helped me create a community.

Thank you so much for your support, respect and kindness over this time, but also for your friendship too. Thank you for embracing me and for letting me be myself and helping me at times on my quest to find/discover/remember myself and for reminding me when I had forgotten. 

I want to thank you and show you how much I appreciate you.

I have been looking at ways to celebrate my 5 year blogaversary, reaching half a million views to my blog and being close to 1000 facebook likes. So I am thinking of fun ways to say thank you, so please stay tuned.

What an Ostomistically amazing time it is to be alive!

I am grateful so much for you all and if I have helped you in any way please comment below.

Posted by: Talya AT 12:58 pm   |  Permalink   |  1 Comment  |  Email
Thursday, December 14 2017

NB: I am not a doctor or nurse, I am sharing information through my own experiences and also that of various credible sites online. The heat and how it may affect you can differ based on personal health issues, so please do speak to a professional regarding how to be safe in Summer based on your own needs. I am sharing the advice I have found and learned in the hopes it may help you to have a better awareness of how to prepare and endure the heatwave.

Here in Australia, we are 14 days into our Summer. We had a fairly non-existent Winter where we live near in northern NSW, and it honestly felt like a mild Summer. I don't recall having to wear a jumper at all and some nights we needed the air conditioning on. But temps were always around 30'c, it was so dry and warm that our grass and plants were rather dead looking - thankfully, after a lot of water and work, the lawn and garden are thriving.

But it did make me worry about the sort of heats and Summer to prepare for, and if going off the predictions for this weekend - I had a right to worry.

So this weekend, particularly Sunday and Monday, most of Australia will be experiencing temperatures ranging between 35'c to over 45'c, we are told this could be the first of many extreme heatwaves we'll need to prepare for this Summer.


Image from Higgins Storm Chasing, providing a visual of just how much of Australia is to be affected

..... 14 days in to December, this is going to be a long hot Summer!

Part 1: Knowing your risk and what to do

I know you're probably thinking, "big deal just go to the beach, no biggie" - well it actually is a big deal, especially to those vulnerable in the community which includes:
The homeless
The elderly
Children
Pregnant women or breastfeeding women
Those who are sick, including those who have health conditions such as Diabetes, lung disease, breathing issues, asthma, heart disease, kidney disease, high blood pressure or who take medications that make them vulnerable
☀ Those with conditions that affect sweating
☀ People with cancer
Those with an ostomy
Those who work outdoors or in factories or hot working environments
Athletes or people who exercise vigorously in the heat
Those who are obese, overweight or aren't very mobile
☀ Those with an acute illness such as an infection, fever, or gastroenteritis (diarrhoea and/or vomiting)
☀ Those who live alone or don't have much social support
☀ Those who enjoy the outdoors including gardening
☀ Those with Mental health issues or dementia
☀ Those who drink alcohol or use drugs
Not to forget our furry friends too!

During heatwaves you can be at risk of heat related illnesses such as heat stroke, dehydration, overheating or hyperthermia, heat cramps. Heat can also worsen health conditions too. During this time the extreme heatwaves can attribute to bushfires or power outages (blackouts) too, so it is important to be prepared.

Summer and heat realated health issues and illnesses need to be taken seriously as it can lead to deaths, heart attacks, strokes and more.

How does having an ostomy put me at risk during a heatwave?
If you're like me and have an ostomy (or have had bowel surgeries before) you could be at a higher risk of dehydration and feeling vulnerable to heat related illnesses. This is to do with the loss of bowel and without your large bowel your body might not be reabsorbing essential vitamins and minerals such as electrolytes. This is why doctors and stoma nurses suggest replenishing your electolytes to avoid dehydration. So it is essential at the best of times to monitor and replenish your minerals and stay hydrated.

Then add in sweating and extreme heat to the mix and you're more susceptible to becoming dehydrated and suffering due to the heat. Aside from drinking plenty of fluids, also drink electrolyte drinks such as sports drinks or even icypoles filled with all of your delicious minerals and vitamins. Be sure to ask your stoma nurse or dietician what else you can do to help.

With the dehydration issues aside (I will share signs to look out for below) heat can also affect your stoma, such as: by your bag not adhering to your skin properly, using tapes/boomerangs these can help to secure your bags; you might get a heat rash, I know in Summer I get a heat rash where my bag sits against my stomach, I find wearing stoma covers helps with the irritation; Your output might be more watery due to dehydration, so have some marshmallows or gastro stop/immodium to thicken your output. Just remember your spare stoma kit and supplies if you do go out, just incase you happen to have a leak.

It is important to also keep in mind (during the heatwave) that if you are outdoors, doing any strenuous activities such as sports or gardening with an ostomy, you are at risk of heat cramps too. I will explain more about heat cramps below, but essentially due to excessive sweating the body loses water and salts (electrolytes) and when the salts in the muscles get really low these cause cramps. If your electrolyte levels are at risk of being low consider avoiding activities that might put you at risk of heat cramps, at least until you are rehydrated and the weather is as normal as it will be during Summer.

So what is dehydration and what are the signs to look out for?
According to NSW health, when the weather is very hot, the body has to work very hard and produce a lot of sweat to keep itself cool. During extreme heatwaves, our bodies sweat a lot, which can lead to dehydration if we aren't careful. Mild to moderate dehydration makes the heart work faster and leads to reduced fluid available for sweating.

NSW health says the symptoms/signs of dehydration to look out for are:
Dizziness and tiredness
Irritability
Thirst
Bright or dark yellow urine
Loss of appetite
Fainting

So what should you do if you or a loved one are dehydrated? NSW health offers this advice:
☀ Drink plenty of water or diluted fruit juice (1 part juice in 4 parts water) and avoid tea, coffee or alcohol
☀ Move somewhere cool, ideally air-conditioned
☀ If possible use a spray bottle with water to cool yourself down
☀ If you start to feel unwell, seek medical advice

So what are heat cramps and what are the signs to look out for?
According to NSW health, "Heat cramps usually affect people who sweat a lot during strenuous activity (e.g. sport or gardening). The sweating causes the body to lose salt and water. The low salt levels in the muscles may be the cause of heat cramps and they can be a symptom of heat exhaustion".

NSW health says the symptoms/signs to look out for are:
 Muscle Pains
Muscle Spasms

So what should you do if you or a loved one are suffering with heat cramps? NSW health offers this advice: 
☀ Stop all activity and lie in a cool space, legs slightly raised
☀ Drink water or diluted fruit juice (1 part juice in 4 parts water)
☀ Have a cool shower or bath
☀ Massage your limbs to ease spasms, apply cool packs
☀ Do not return to strenuous activity for a few hours after the cramps subside (exertion may lead to heat exhaustion/heat stroke)
☀ Seek medical advice if there is no improvement

So what is heat exhaustion and what are the signs to look out for?
According to NSW health, "Heat exhaustion is the body’s response to an excessive loss of water and salt contained in sweat. If heat exhaustion is not treated, it can turn into heat stroke."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Pale skin
☀ Fast and weak pulse rate
☀ Shallow and fast breathing
☀ Muscle weakness or cramps
☀ Tiredness and dizziness
☀ Headache
☀ Nausea or vomiting
☀ Fainting

What to do -FIRST AID- according to NSW health:
 Move to a cool place, ideally air-conditioned and lie down
☀ Remove excess clothing
☀ Take small sips of cool fluids
☀ Take a cool shower, bath or sponge bath
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ If symptoms worsen or if there is no improvement, seek urgent medical advice and call an ambulance if necessary

So what is heat stroke and what are the signs to look out for?
According to NSW health, "Heat stroke is a life-threatening emergency and occurs when the body temperature rises above 40.5°C. Immediate first aid is very important, aim to lower body temperature as quickly as possible."

NSW health says the symptoms/signs to look out for are:
 Heavy sweating (cool and moist skin)
☀ Sudden rise in body temperature
☀ Red, hot and dry skin (sweating has stopped)
☀ Dry swollen tongue
☀ Rapid pulse
☀ Rapid shallow breathing
☀ Intense thirst
☀ Headache
☀ Nausea or vomiting
☀ Dizziness or confusion
☀ Poor coordination or slurred speech
☀ Aggressive or bizarre behaviour
☀ Loss of consciousness, seizures or coma

What to do -FIRST AID- according to NSW health:
 Immediately call 000 and ask for an ambulance
☀ Get the person into the shade, lay them down, and keep them as still as possible
☀ Give small sips of cool fluids if conscious and able to drink
☀ Bring their temperature down using any method available (sponging with cool water, cool shower, spraying with cool water from a garden hose or soaking clothes with cool water)
☀ Put cool packs under armpits, on the groin, or on the back of the neck to reduce body heat
☀ Do not give aspirin or paracetamol; they do not help and may be harmful
☀ If unconscious, lay the person on their side (recovery position) and check they can breathe properly
☀ Perform CPR if needed

I know that this is a long and comprehensive guide on the signs and symptoms pertaining to heat related illnesses and what to do in terms of First Aid, in the next post (part 2) I will talk about being prepared and tips for enduring the heatwave.

Again, I am no health professional, I have only done 2 years of Nursing, but I just wanted to put as much information out there from reliable sources to help you be more informed when it comes to the heat and Summer... especially with an ostomy or any health issue, which can make your risk heightened. Please seek medical attention and don't delay, also remember to slip slop slap!

Please be safe and be mindful of how your medications can affect you with the heat, speak to your doctor or pharmacist if you are worried.

To read Part 2, click here

 

Posted by: Talya AT 08:15 am   |  Permalink   |  0 Comments  |  Email
Wednesday, February 01 2017

Hi and welcome to the first issue of the Ostomistic Life eZine prizes. Please find below some giveaways that might be of interest to you or if they are of interest to a friend please feel free to refer them to this page.

Prizes - up for grabs

#1. WIN 1 OF 2 $50 iTUNES CARDS
I know how hard it can be in hospital or being stuck at home because you're unwell, so I hope that winning $50 to spend on music, tv series, a movie, or even eBooks could help you pass the time. At this time this is only open to Australian residents over the age of 18 as these cards are only valid for use within Australia. Simply answer the question below in 50 words or less how YOU beat the hospital blues or pass the time when you're sick and unwell.


 

WIN 1 of 2 x $50 iTunes cards
​Best of luck

#2. WIN $25 VOUCHER TO SMUDGE DESIGNS
Smudge Designs create the perfect inspirational prints to help give you the boost you need to tackle your day or what is ahead. Their range of prints are perfect for the home, workplace, dorm or classroom, and with over 500 to choose from there isn't a short of supply of inspiration. You are entering to win a $25 voucher to be used on prints in their store.

They have a great value pack of prints too with 90% off RRP! Such a good deal.


 

WIN a $25 Voucher to Spend on Prints at Smudge Creative Design's Store

#3. WIN A MINDFULNESS CARD SET
With thanks to The Love Letter Collective, we have a mindfulness card set available to be won. Their mindfulness cards were created with the purpose of bringing you awareness, gratitude, inspiration, motivation and love. Choose one each day and take the time to reflect on what your card means to you in a positive way.

Each set is kept safe and snug in a handmade linen pouch wrapped in twine with a clear quartz crystal.

To enter simply comment on the Facebook post below answering: "What was the best piece of motivation/advice you've received and how did it help you going forward?"

Competition ends 11.59pm AEDST, a winner will be chosen March 1st based on their answer judged by a panel of our choosing. For more conditions see the facebook post.

 

 

MORE COMPETITIONS COMING SOON - SUBSCRIBE TO THE NEWSLETTER SO YOU DON'T MISS OUT ON FUTURE COMPETITIONS

 

Posted by: Talya AT 08:48 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, February 23 2016

I know having a loved one in hospital or unwell can be rather distressing, and I know more than anything just how much you want to help them get better.

I myself, have spent a lot of time in hospital and after a recent surgery with a hospital stay I thought that I might give you some ideas or suggestions on how you can support a loved one while they're in hospital. I guess these could even apply to when a loved one is at home chronically ill or unwell.

When a loved one is sick, you don't have to buy flowers to show them you support them. Here are some ideas to help you next time:

Suggestion #1. Calling them
I know that you're concerned for them and want to call them daily or every other day for updates but as much as I know you care and want to support me this actually is something that I find frustrating.

You see you might call me once a day, but so are a lot of other people all asking the same questions so I feel like I am constantly repeating myself and all the phone calls can become rather exhausting after a while, or you might just be having an 'off' day and just want to be left alone.

Also keeping in mind that when someone is in a hospital room sharing with 4 other people it can be hard to have an actual conversation without feeling like everyone in the room is listening... there just isn't privacy when you're in hospital and this makes me uncomfortable so I prefer to text or facebook message.

Solutions:
#1. Nominate one family member to call and relay the message back to those who are asking. Or if too many are upset they're not getting a turn to speak to the person in hospital create some sort of roster and take in turns of calling and relaying the message to others.
#2. Send a text message before calling and ask if now is an ok time to talk, as they might be asleep or might not be up for a chat. If they don't answer straight away then they aren't available, but they can reply when they are.
#3. Send texts instead of calling as it can be easier to reply to when they're up to it or as I mentioned above I prefer text is just more private than having a conversation in such a public room.

Suggestion #2. Flowers
I know when you're visiting or thinking of a loved one your first instinct is to buy them flowers. But flowers while they are beautiful and can make someone feel loved and smile, they also are rather expensive and will die.

Instead of buying flowers think of practical things they might need and either are unable to go buy it themselves while they are in hospital or they mightn't have the funds to purchase (especially as money can be tight when in hospital and if they have to take time off work to be there).

Solutions:
#1. If they have a laptop and are using a prepaid wireless dongle, purchase some credit or recharge for them to use
#2. If they have an iPad and enjoy reading books purchase an iTunes gift card so they can get some new books to read
#3. Make up a little care package with some comfy slippers and essential toiletries if they were in a rush and didn't get to pack these even include an eye mask and ear plugs to help them sleep a bit better
#4. If you know that they've been colouring in to keep them occupied you could buy a nice set of pencils or colouring in book in case they have used up all their book or pencils
#5. If you drive past their house and notice their lawns are looking a little neglected offer to give it a mow, or keep an eye on their pets it can be a stress they don't need to worry about

Suggestion #3. Food
Unless you're in a nice private hospital, the food in most public hospitals I have been in can at times be rather inedible leaving you rather hungry and annoyed.

I spent so much money this last admission on food as I found myself having to resort to the hospital's expensive cafe in order to get something that was half decent to eat. But sometimes you don't have the option to walk to the cafe to get food.

Solutions:
#1. Offer to bring in a nice home cooked meal for them to enjoy
#2. If there is a cafe but they're unable to walk there themselves offer to go get them something enjoyable
#3. Pick up or arrange delivery of some yummy take away and sit somewhere in the hospital and have a meal and chat

Suggestion #4. Make them feel at home/comfortable
When I am in hospital for long periods of time I quickly become homesick especially when home is so far away. For me I have some things with me that makes me feel comfortable and a bit at home which are some cushions/cuddle pillows (I can't sleep without cuddling up to these cushions) and also have my Redkite blanket with me.

These are some things that I find brings me comfort but others might find comfort in having a photo on their bedside of their family.

Solutions:
A reader suggested after reading this post, that if they have pets it can help with their recovery and feeling more at home if you brought their pets in for a visit. There might be a garden or somewhere close by that you can sit at, and if you can't walk far you might be able to be wheeled out in a wheelchair. She went on to say a visit from her fur babies really helped her in her recovery.

Suggestion #5. Respect their privacy
When you're in hospital you can feel vulnerable and often feel like you have lost dignity. But when you are visiting a loved one it is important to be mindful and respectful of how they might be feeling and to not make them feel worse.

Don't take a photo of them without their consent, and especially don't go posting that photo on social media.

Another thing you shouldn't do is share things they have told you in private or that the doctors may have said without their permission, this goes for social media. I know that your first instinct is that you want to update people on their condition but don't give out the specific and private details of the ordeal, not everyone needs to know the specifics. And if they share an image with you, don't text/send that image out to your contacts. It can be rather upsetting when they find out to know that things about their life/recovery have been shared without their permission.

Suggestion #6. Offer to do their laundry
If you are really wanting to offer support and help while they are in hospital, offering to wash their dirty clothes can be a huge help. But you need to be prepared that some of those articles of clothing might be dirty or soiled. It might be embarrassing for the patient to accept you washing their clothes especially their delicates, and it is important that you make them feel comfortable and not embarrassed about the state of their clothes, as they might be a little anxious about handing over their PJ pants that became soiled after a bag leak.

If you do end up washing their clothes, and if their clothes are rather dirty and soiled or stained, it is not your place to tell others in a gossip sort of way as it would be humiliating and tarnish any chances of the person asking/accepting help again.

While these are just a few suggestions I know the list could be longer. So if you have a suggestion that you think would help others comment below and let me know. I would love to hear your ideas of what makes you feel more supported when in hospital.

Posted by: Talya AT 05:57 pm   |  Permalink   |  0 Comments  |  Email
Tuesday, October 27 2015

I have spent a lot of time over the last couple of years in hospital, often my stays (90%) have been in the public hospitals as a private patient and while you don't always get a single/private room due to these being given on an availability or clinical needs basis, it often means you are needing to share a room with other people.

There are two types of shared rooms in a hospital, there is twin share meaning there is one other person in your room or their is a 4 share room meaning you are sharing a room with 3 other people whom should be of the same sex as you.

I just got home from a 12 day stay in hospital and it reminded me of this post I started writing earlier in the year after having had spent 5 weeks in RPA and it was a horrible time mostly because I feel that others don't quite know or understand the etiquette that should be practiced when sharing a space with others... mostly it comes down to being respectful, but I will share some etiquette that should be followed (and if you have your own feel free to comment below).

Hospital etiquette when sharing a room in a public hospital

#1. It is not the time or place to LEARN how to play the ukulele
This legit happened, I was in RPA sharing a room with someone for the entire 5 week stay and in around week 2 she purchased a used ukulele downstairs at the flea market and decided that now was the perfect time to learn how to play. This involved trying to tune it, playing youtube videos over and over and over and attempting (I use that word lightly) to play.

It not only was annoying, but I don't think this is the place for it when you're in a hospital which is a place of rest to be playing or learning an instrument.

#2. Use headphones
I know that when some people are in the comfort of their own home that they might like to play their music or movies from their laptop at a loud volume, that you shouldn't do the same in hospital.

By all means bring your laptop to listen to music or watch movies to entertain yourself, I know I do, But I ALWAYS wear my headphones as to not disrupt or be disrepectful to others in my room.

#3. Rest periods mean rest periods
This means that your visitors should be mindful of the times and leave for the hour or two hour break. It also means this is not the perfect time to watch your TV loudly or have conversations on your mobile.

While you yourself might not be tired, your room-mates might be feeling exhausted from having had visitors themselves, or they might be wanting to use the time to rest and recoup with a nap before the evening.

But the rest period is also a chance that the Nurses or Doctors can do dressing changes or consults without interrupting your visitors and give you some privacy.

#4. Privacy
This one should be a given, but not everyone might be as social as you or might just be wanting some privacy. If a patient has their curtains fully closed it might mean that they want some privacy and are not wanting to chat, but it could also mean that want their own space.

When I was in RPA earlier in the year, I felt my personality clashed with my room-mate and she just couldn't understand no matter how many times I or the nurses told her that I wanted my privacy. Yet she would continually walk in through my curtains and sit on my bed and talk to me. Or this one time she picked up my hand and tried doing a palm reading and I asked her to stop and go away but she didn't understand boundaries.

It also is important to be mindful that when a doctor is visiting a patient (as hard as it is) to not eavesdrop on their converstation and if you are please do not talk over the doctors and interrupt the conversation with your opinion. I was told I had thyroid cancer during that hospital admission and I was so upset from the news and my room-mate was talking over the doctor telling me "stop crying, get over it and her life is so much worse than mine" (no joke that was what she said). Thankfully my doctor spoke back and asked her to mind her own business and that I had every right to be upset.

It is important to remember that others value their privacy.

#5. Being in hospital isn't the time for a get-together
I know it isn't a given rule that you shouldn't have 10 people visiting at the same time that it should only be 3 at a time, remembering that those whom you're sharing a room with might be having visitors as well and if there is say 30+ people in the room it can become rather noisy and crowded and disrupting.

I know when my whole family (there is 10 of us) come and visit I walked (or was pushed in a wheelchair) to a more private part of the hospital where there were lounges and a place to sit. We even sat outside in the courtyard to talk and catch up, as I didn't want to disturb my room-mates as I know how annoying it is when someone has 10 visitors at once.

#6. Try not to be so negative
It has been spoken about a lot (and I did a research paper on this at uni when I was studying Nursing) that negativity can be rather toxic on your body and those around you. If you are someone that is constantly negative and wallows in self pity and enjoys throwing a pity party, this can soon become toxic and make those around you feeling down as well.

They say positivity is contagious, and I know when I am around negative people I feel so much worse as I am a bright and bubbly person and I am someone who will always see the positive side to things. I live by the mantra (thanks to my ever so wise dad) that "No matter what happens today the sun will always come up tomorrow".

#7. Do not talk about others behind their backs
This happened when I was in a local hospital earlier in the year, I went to the toilet and this guy and a girl I shared a room with (who were truly horrible people) thought that I had left the room completely and that it was the perfect time to gossip about me. (Ironically it was the same room and same bed that I had just been in the last 12 days)

I heard one (the guy) say to the lady "so what is her issue other than being fat. Gees has no one told her she needs to lose weight".

I walked as quickly out of the toilet as you can when you're wheeling the drip pole, and I lost it. I don't normally lose it but these people had it coming! I told them how dare they think it was okay to be so judgemental when they not only didn't know me or my story but to think it is okay to gossip about someone so loudly when they are in the room.

They replied "we will just wait till she leaves to continue gossiping". I ended up walking to the nurses station crying asking to be moved either to a new bed/room or to the private hospital as I shouldn't have to put up with that shit. Besides I was in there for pancreatitis and stress makes it even worse.

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While this is just a short list of etiquette practices that should be followed when  staying in hospital and sharing a room, it is important to remember to treat others as though you would like to be treated and it should just be common courtesy to be mindful of your surroundings and respectful of other's right to quiet and privacy.

If you have had a bad experience when sharing a room, feel free to comment below.

 

 
Posted by: Talya AT 06:40 pm   |  Permalink   |  0 Comments  |  Email
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~  Living with Familial Adenomatous Polyposis - Effects of FAP  ~

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Talya Goding - Feeling Ostomistic   talya@feelingostomistic.com.au  |  0447 426 860

Thank you for stopping by Feeling Ostomistic. It has taken a lot of courage to share my story and I ask that you show me and my site/blog respect and courtesy. Views expressed in this blog are my own and I am not a nurse or a doctor. If you need medical advice please seek your medical practitioner.

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