Happy Friday everyone :)
It is time for another post, and I thought this one might be helpful to somebody out there.
Do let me know in the comments if it has been helpful and let me know if there is a blog post you would like to see. Writing, Chronic Illness, Art, Photography, any of the things that keep me busy.
So, today’s post - How do I prepare for the unexpected/emergencies as a person with Chronic Illness?
My emergency plans do apply to most situations and that makes it so much easier when the time comes to get going.
My most important plan/prep? I have a Go Bag.
It is a carry-on sized bag (with wheels so that I can move it myself) and is packed 24/7 and contains everything that I might need if I must leave the house in a hurry or for a friend to grab and bring to me if needed. My go bag is primarily for situations such as emergency hospital admissions/visits but comes in handy for evacuations or last-minute trips as well.
One of the things about chronic illness is that it is unpredictable and when things go south, they can do so quickly. You can be fine one moment; cooking dinner or laughing with a friend and then within minutes cannot breathe, have a reaction, are in so much pain you cannot think or any number of other situations. It can be anything (and probably will be) and it can happen in an instant. It makes it hard to plan a social life.
A go bag is the perfect prep for many situations. It is good to grab before you are put into an ambulance. It is good if you are trying your luck with your doctor; but know deep down that he will want you to be admitted to hospital (you can hope all you want, but sometimes you just can’t escape).
So, a go-bag for a person with chronic illness. What to pack?
There is so much that you might need and so much that would be good, but the 'want this' items just take up space. How do you decide what to take?
After many hospital stays, I think I have got the contents just right (for me). Here is my list. Feel free to switch and change to suit your own situation.
Try to avoid packing anything valuable, if you are taken for scans, tests ect, you don't want to have your valuables left in your room for anybody to find.
What is in my Go-bag:
Also pack a thin folder containing-
1- A Letter from doctor or specialist with a list of current medications and doses
2- Letter from doctor or specialists with diagnoses and treatments (if appropriate), you can have as many of these as needed, depending how many doctors/specialists you have.
3- Copies of latest test results/scans/correspondence between doctors and specialists.
(My GP prints any letters between my other doctors and himself and I take them away for this purpose. It is also good to have them for other doctor visits).
4- A list/form which includes all your emergency contacts/your details/medication details (I have attached the template that I use, below. Feel free to add your own details, download, fill out and print for use in your own go bag, or even your handbag).
Click HERE to download the form :)
Items to grab on your way out the door/things to do
-Put on shoes.
Change purse with the below items-
*A small amount of cash, I take $20. (good for payphone, cafeteria. Do not take much money in case it goes missing).
*Healthcare cards/Medicare card
*Can take bank card
*Mask on (if you are not struggling to breathe)
The above is a list of what is MY Go bag and it works well for me. Of course, everybody has different needs. The above keeps me sorted for about a week in hospital. If I need more, I will have somebody bring it in for me.
You do need to make sure that your bag is big enough for everything you need to take, but at the same time it should be able to fit comfortably in an ambulance or on the bed with you. So, not a full-sized suitcase that nobody can lift :p As mentioned above, a small carry on has worked for me so far.
Most people have had to rush around, throwing things in a bag and trying to ensure nothing important is left behind at some point in their life. It can be a huge stressful mess on top of a huge and stressful mess. Let’s be honest, if you are rushing around, possibly panicking and are throwing things in a bag, chances are it is not so you can holiday in Hawaii.
It is most likely an emergency or another time critical event.
These situations are hard even if you do not have medical issues; so, when you do, having everything in one place can be a big weight off your shoulders. It is helpful in medical emergencies and times of illness, because who wants to be packing a bag whilst struggling to breathe? Not this girl. My Go bag has been a saving grace for me in the past and I am sure, will be in the future (fingers crossed, not the near future).
Regarding other events and being ready to move at a moments notice... Living in Australia we must be mindful during fire season and be prepared. I know of people who have emergency supplies in an accessible place, just in case. I also know people who do not and in case of an evacuation, will rush around throwing things in bags and the back of the car (I have done both). It is so easy to forget things when you are throwing random belongings in a bag at the last moment and it would be horrid to forget anything important.
With my chronic illnesses; I have found my go-bag, which is always packed, has been great for most/all events. The bag being packed with the essentials – clothes, medical paperwork and medication, really is perfect for all situations.
I will finish up this post for now. I do hope that reading the post will help somebody be better prepared, whether in case of a medical emergency or in the case of other time critical events.
NOTE: If there are others in your house who have medical conditions/needs or additional needs of any type, having a go bag ready for them will come in handy at some point as well.
Let me know if you can think of anything that I have missed, I am always updating my bag and am open to suggestions.
Have a fabulous day everybody and to all the spoonies out there...I wish you many spoons and gentle thoughts.
X x X
Life as an author/person with chronic illness- Please don’t give up on us.
A big howdy and hello to you all. Thank you for stopping by 😊
This will just be a short post today, so let us get on it.
As a person with Chronic Illness, every day can challenge you. You can never be sure what is going to happen health wise in any moment. You might have a ‘good day’ and be feeling okay and on the opposite end of the scale, you could feel absolutely horrid and might feel like you are about to die (it does happen and it is not a nice feeling).
Chronic Illness is so unpredictable; it fluctuates so much that it is hard to plan anything more than getting up and going to the kitchen to make a cup of tea, and some days that is too much.
You get your legs off the edge of the bed and then just sit there; because you cannot stand up but you cannot get back into bed either.
I personally tend to not plan much in advance. I am often asked to go out somewhere, to attend an event or to help with something. I usually (and I feel bad for saying it) have to say, ‘It depends how I feel’ or ‘No promises but I will try’.
I am blessed to be surrounded by supportive people who do not make me feel bad about having to do this. They are understanding when I need to cancel things at the last minute. (Thank you all, you know who you are and I love you all).
Why must I do things this way? Can't I just force myself?
It is a personal choice. I could just say yes to things, plan things in advance and then cancel when necessary; but I don’t like cancelling on people. I don’t like to let people down, and would much rather tell them straight away so they do not plan for me when I am likely not to show up. I admit, I also try to save myself some embarrassment when decided how to answer someone.
It can be so frustrating. Not only feeling unwell, but at the same time feeling like you are letting people down. The mind is a powerful instrument and sometimes you feel like you have say no so often, that one day soon; they are going to just give up on you completely.
When a trip to the supermarket or movies can go pear shaped easily (vomiting, pain and whatever else your body decided to throw at you) it is hard to convince yourself that it is worth feeling horrid AND making others feel bad.
The last time I sat in the car outside the supermarket (instead of being inside getting my groceries) with my head in a vomit bag; I really thought my body hates me and does it just to spite me. I was so angry, but was vomiting so hard that I did not have time to even curse at myself or the universe (though that does happen some days).
Of course, my body is not on a mission to embarrass me. My body does not sit at night, writing down ideas on how to make me feel horrible. My body is sick. Instead of only fighting off the bad things (bugs etc), my body gets confused and fights the good stuff and itself instead; including muscles, bones, skin and organs. My body turns on itself and it can be unrelenting some days.
I am so lucky that my friends have stuck by me and still ask me to do things with them.
One thing I want to ask of everybody; is that if you know someone who has disability/chronic illness or other health troubles - Please don’t give up on them.
They feel bad for cancelling on you. They feel bad for not being able to plan too far ahead and they are already kicking themselves for being unwell, as well as dealing with whatever symptoms are troubling them at that time.
When you ask a person with chronic illness to do something and they are not up to it or they cancel just before the event, check if they need anything. Ask if you can come over and say hello, bring a cup of coffee or be supportive in whatever way you can. When feeling unwell; is the time a person needs friends the most.
Chronic Illness can make you feel very alone.
Still invite us to do things or go places, even when you know we might not be able to go.
Even if we have had to say no to the last five coffees or the last two outings.
It makes us feel included and cared for. Chances are we are sitting at home, feeling awful because of pain or (insert other symptom) but also feeling awful because our body just forced us to politely bow out, yet again. We did want to spend time with you, it is just so hard sometimes.
We appreciate your support and you asking us and trust me; we will do our very best to make it when we can.
So, that is my thoughts for this morning and also a polite plea to everybody. Please don't give up on us and thank you for supporting us and sticking around <3
I have spoken to many other people with Chronic illness and although many of them have shared these same thoughts with me; they are not all able to say it. I have this platform and I want to use it for good. I want to bring awareness to important issues, and what better place to start.
Thank you so much for sticking with me so far. I hope that this information will help somebody. I would also love to hear other people's thoughts on the subject and welcome messages via the comments on this blog or via my contact form.
For now, I will log off. I am having an okay day pain wise and want to get some things done while I can 😊
Much love to you all. Stay safe and feel free to share the blog post x x
If you have experiences you would like to share, flick me a message and I will reply when I can.
Bye for now
10 January 2020
Good evening to everybody who has taken the time to stop by (and thank you!).
I hope this post finds you happy and well. If not, I hope that things improve for you very soon.
As always, I welcome messages from everybody. If you need a vent or a chat, flick me a message. If you just want to say hi, message me 😊
I really would like everybody to know... you are NOT alone and there is somebody in this big, harsh world, who does care.
So, to begin this blog post, I would like to talk about Australia. I was, as per my last post, born and raised in New Zealand. It is a wonderful place full of glorious landscapes and amazing people.
Today however, the country I live in, Australia is in the middle of a horrific nationwide disaster.
The weather in Australia is always extreme. From extreme cold to extreme heat, it fluctuates daily in some places and it is always interesting when it is 45 degrees one day and then freezing the next.
Bone dry conditions coupled with expansive bush-land make fire seasons horrid for people and animals alike.
The fires in Australia this year (and the end of last) have been catastrophic. There have been fires burning in different parts of the country for months and the emergency services have done an amazing job (and continue to do so).
Now, the fires have spread and intensified. Unfortunately, some have decided that lighting fires is the way to go (Top tip- It’s not). Aside from these people; we have lightening, dry conditions, wind and there are embers from active fires blowing from spot to spot and creating more fires.
As I write this post, there are many burning across Australia; I am not even sure how many at this point. Some spot fires, some bigger and some mega fires that create their own storms (not a joke, look it up).
Most parts of the country are covered with thick clouds of smoke from these bushfires.
Smoke has reached New Zealand, which does show just how bad these fires are. I have seen online that over a Billion animals have been lost so far in this season’s fires and the numbers continue to grow by the minute. People have lost their lives to fire; this includes emergency services (firefighters) and civilians. Homes/property has been lost.
Firefighters from all backgrounds and states, and even civilians (staying to protect property rather than evacuating) are try their very best to fight these beastly fires and they are exhausted. Countries (forgive me if I leave anyone out) including New Zealand, Canada and America have send us Firefighters and military to assist (thank you!) and even with the extra help, our firefighters are struggling.
Some of the volunteer firefighters, do not have proper equipment and I have read that some have only paper masks to keep them safe from these deadly fires. Some have only one set of firefighting clothes. They can wash them and maybe not have them ready for their next shift, or they can wear them again dirty.
Firefighting boots are melting… let that sink in for a moment.
People dead, animals’ dead, paper masks, melting boots, uncontrollable fires, exhausted firefighters and millions of hectares burnt to the ground.
It really is a terrible situation.
There are many people blaming the Australian government for not doing more. There are people blaming God. There are others blaming climate change.
Conversations that do need to be had; but I think that this is not the time.
Right now, this moment, with much of the country on fire; people and animals losing their lives and homes and with brave men and women going out there day in and day out, at enormous personal risk; the focus should be on helping those affected, helping those who are protecting others and keeping everybody safe.
Right now, the focus should be on extinguishing fires. The focus should be on evacuating the many, many people and animals who are in danger.
There are places where people have been told it is too late to leave.
The way in and out blocked by heat and flames. Some of these people had to evacuate to the beach in their town, they were told that the only option that was left, was to get into the water. They sat for days on that beach, waiting to be evacuated.
I read last night, the fires in that town have been put out and people rescued. The fire service, CFA and other organisations have done an AMAZING job. Not only in this town, but in all places where the landscape is burning or is a high risk area.
The thing is ... it is not only one small town on the coast. There are other towns in the same situation, where it is so bad, all they can do is flee to water and wait.
This country desperately needs a break. These firefighters and those who have come assist from overseas, desperately need a break. Unfortunately, the fires continue to spread.
Many people are fundraising for the CFA, the fire services, Wildlife charities and more. People from all walks of life. From ordinary Australians, celebrities, charities, people overseas. From large donations to small $5 donations. Everything is needed and everything is appreciated.
They say that the worst times can bring out the best in people. So many have donated goods, time, money and more and continue to do so and I am sure I am not the only person who appreciates it.
I have joined the #AuthorsForFireys auction on twitter. Authors, Illustrators, Editors, Publishers and more are auctioning items and services with all money going to the CFA to help them in their fight to keep us all safe.
I have signed copies of my books up for auction and many others have amazing prizes up for auction. Bidding ends 11th January 2019 at 11pm. Pop over to twitter to take part, search the trending hashtag #AuthorsforFireys to find some amazing items. Place your bid on the twitter threads and at the close, the highest bidder wins.
This huge auction is a great way to support the CFA, who are working so hard and at the same time grab a few nifty items for yourself.
To see my auction, search TPageWriter0 on Twitter.
Why have I told you all the above in today's blog post?
It is a national disaster and though it is not a nice thing to be listening
As I write this post, the emergency app on my phone is pinging at me. It shows me a map of the state of Victoria. On that map are large areas marked in red and black. The app is sending alerts for controlled and uncontrolled fires in my state. It is sending me air quality warnings because of smoke drifting into Melbourne from around the country.
Even those who are not in the mist of the fires, are getting poor and hazardous air quality. My area is supposed to get poor to very poor air quality in the next day or so.
So inside with the doors and windows shut up, no air conditioner and carrying around a puffer, this asthmatic will be.
It has been affecting my breathing in the last week and the nearest fire to me is a few hours away. I can only imagine how bad it is for those closer to the fires and those fighting them.
My heart is breaking for this country, it’s people, it’s animals. It has been my home for the last nine or so years and really is a beautiful place.
Thank you all for sticking with me this far into this post.
It is not the nicest thing to be reading about and I am sure you have been watching the news, reading posts on social media or feeling the effects yourself but it is a reality for so many and so many do need support.
I do think that there are many things that need talking about, these catastrophic fires have brought to the surface many things that do need addressing. In time, when people are safe, I hope they can be discussed.
For now, we can only plan, stay alert, be prepared and help when, where and who we can.
We need people to continue working together and we need buckets and buckets of rain.
Anything that people can do (big or small) is a help at this point. Some are able to contribute with cash (every dollar helps!), some can contribute goods and services, some are able to contribute time and work and some may be able to lend a sofa/bed or listening air to those who have lost everything. Whatever it is that people can contribute is needed, appreciated and amazing <3
Below are the events and the organizations I personally am trying to contribute to, although there are many more.
In the next blog post, coming soon I will be writing about chronic Illness and emergency situations. How do I prepare for natural disaster with my chronic illness? How do I prepare for the unexpected?
Keep a look our for that post 😊
I hope that it might give ideas to those with additional needs or illness; that it might help someone to be better prepared. So much to do, so little time but if you are ready, it is a little easier.
For now, I leave you with the links I mentioned, and I wish you all safety, calm and love.
If you have been affected by the Australia fires/current situation and need me to help you find resources, please message me. If you need to chat/vent, message me. My inbox is always open.
To all those men and women who are bravely fighting, working past the point of exhaustion and keeping us safe - From the bottom of my heart, THANK YOU all, you are doing an amazing job <3
With much, much love to all.
Country Fire Authority (CFA) https://www.cfa.vic.gov.au/donate1
Victorian Bushfire Appeal https://www.vic.gov.au/bushfireappeal
TRIGGER WARNING –
Depression and associated thoughts.
Please do not continue reading this post if these subjects might be a trigger for you.
Scroll down to continue reading.
A warm welcome to all who have stopped by 😊
I have been sitting here and staring at my blank computer screen for far too long, I want to write about life as a writer with chronic illness... it is just so hard to know where to start.
So, I will go with the good old ‘at the beginning’.
A side note: My brain and my fingers do not seem to want to connect today but I will just jump in and see what happens (forgive me if it does not all make sense).
'At the beginning' would take us back many years, when I was living in my hometown in New Zealand. The colds that were long and seemed to be attracted to me. The hives, the chest and ear infections, the viruses and people who told me that if I simply ate healthier and blew my nose more I 'would be all good’.
These were my first symptoms of Chronic Illness. At the time, it seemed that I just got sick a lot. I had no idea (and neither did my doctor) that it was in fact the start of a huge challenge in my life.
Chronic Illness … two small words but something that causes such mayhem; something that causes pain beyond what I thought I would ever feel. They are also two words, giving a short (very short) description of something that would and does challenge me and many others. It frustrates, upsets and angers me but it also empowers and has helped me to grow in so many ways.
Since my first symptoms, so many things have happened. My mother passed away and my best friend for many years (my grandfather) passed away. There are of course other events, but I won't list them here. Everybody has 'things' right?
As well as the above, I moved to a different country ( :O )
Moving was the event that really changed my perspective for the better, taught me many lessons and helped me along the path to were I am now. That change was the one I needed the most. If I had not taken then huge leap of faith, I would not be here now.
Where am I now? I am the hot, cold, wind, sun, rain and stormy Melbourne, Australia. I live with good friends and I have many other friends close by and all over the world. Many of them I would never have met, had I not had these illnesses thrust upon me by… the universe?
I am grateful for my best friend who helped me to see that life could be better, that I needed to do things for myself and that if I took that first step (or many), I would have support, no matter how bad things got.
I stepped off the first plane that I had ever been on, after crying the entire flight, and sure enough... things changed (weather included and boy oh boy is the weather different here).
Things changed for good and for… not so much.
I have been in Melbourne since 2010. I still get a bit overwhelmed when I realise just how long ago it was.
Not long after I arrived in Australia, I faced my first big challenge. It is something that I believe everybody who can, should talk about. It is the only way the stigma of this illness will begin to dim.
I was depressed when I arrived. That only got worse as time went on.
Perhaps it was the trauma of leaving those I love so much; although I knew it was the best thing for all of us.
Perhaps it was my mother, my grandfather and other people passing away.
Everyone makes mistakes at some point and some of us, make even bigger mistakes. Perhaps there was guilt and regret in there too.
Perhaps it was moving to another country and/or being unsure how to cope.
Or maybe it was situations that I had been in, things I could not control but had left a lifelong impact on me.
Perhaps (I vote for this one) it was a mixture of everything. I arrived in this new country and finally everything hit me like a 20-tonne truck.
I spend many days in bed with the curtains closed, my thoughts going to places that no one wants to be visiting. It felt like I was stuck in a black hole. Hot, sad, angry and falling. Falling so far down into this hole, that it felt like it would never end and that if it did, I would be stuck in a crumpled, miserable heap at the bottom.
Some days, I was able to do things, to function and convince most people that all was okay (all except my very observant best friend). Other days, I could not raise my head off the bed and just wished for it to end.
I eventually figured out that the longer I stayed under my rock, the worse it got.
I started to drink. At least I was out of the bed, right?
I was attempting to not remember things, to not feel like me for a while. Boxed wine (disgusting stuff) was my choice. It was cheap, it came in a huge box and was always available at the supermarket just five minutes’ walk from where I lived.
When you are depressed, it can feel like the darkness will never end. All your memories, feelings, actions, regrets and guilt and a bucket load of horrible, horrible stuff closes in on you, draping you in a thick, heavy, dark, hot blanket of …. crap.
Not all my thoughts were ‘real’ and were not actually things that were a problem. My creative brain added these thoughts to the mix, but it all felt very real at the time and it was hard to separate them from all the other ‘stuff’ swirling around my head.
It can be hard to throw the blanket of nasty away; to climb out from under it.
It was hard.
I needed help.
but I did it.
It took my best friend coming into my room, dragging me out of the bed, putting me in the car and driving me to her GP to finally get out from under that thick, fog of pain and darkness.
I ... was... so... angry with her.
I refused to get out of the car. At the time, I felt that she should have just left me in the bed to wallow in my own thoughts and misery.
I got out of that car and made it as far as the door, I stood outside the GP surgery for a long time. Silently spewing and hating life.
Eventually, I did go inside. I was still angry with my friend but deep down I knew that this was long overdue, that it was something that I HAD to do if I was going to make it to my next birthday. It was that bad.
Still stewing like a soup in a pressure cooker, I sat in that doctor’s office and listened as the GP told me that I was depressed and went through all the things that come with that kind of a conversation. I was pissed. I would not take medication; I would not see a psychologist. I was going home for a glass of wine and my bed.
At home, I got another wake up call. One that now, I realise I needed. The same best friend who had dragged me to the doctor, who had put up with all my … up until this point was the person to give me that wake up call. After a few fierce arguments and long talks, I poured that wine down the sink and I began to take the prescribed medication.
It was a slow recovery; a slow climb from the bottom to the surface. With help, I finally broke the surface of the thick mud and was able to look around properly and see just how lucky I am.
I did go to the psychologist. Well, I gave it a go.
It didn’t work out as I was not comfortable with the person I was sent to see
(it happens, and it is okay).
Luckily for me, I had my best friend (let’s call her A, just for privacy).
There were many heartfelt and raw chats during this time and we still have them all this time later. Bucket loads of tears, plenty of arguments and many long nights as she sat with me, calming me down after I woke from yet another nightmare.
I will forever be grateful to her for the love and support she has given me over the years and still does. I hope that one day I will be able to let her know, just how much I appreciate her and everything she has done for me.
This post is getting long, so I will leave it there for now, but I will be back and will continue this post and share as much as I am able, my wish is that it will help somebody, somewhere know that they are not alone.
with love and light always x x
I was blessed to have my best friend to help me through some of my darkest days but I am aware that not everybody has that.
You can be sure that I will be back with another post and will pick up where I am leaving off.
I think it is important that people hear about experiences like their own.
Someone out there in the big wide world might need to hear about/read this and be told that they are not alone.
If you need to hear this, please bookmark and come back to read everything again, especially the below.
It can get better. It will not always be this hard and this dark. Find somebody, anybody who you are comfortable with and say to them ‘I don’t feel good and need someone to talk to’.
Start slow, just a sentence, share just one thought at a time.
You can do it; you can feel better than you do right now.
It takes time.
It will hurt and it will be hard; there might be many tears, but you will get through.
If you feel that you do not have anybody to talk to, send me a message or reply to this blog post with your email address. I am always here and willing to lend a shoulder/ear/time.
YOU are important, YOU are special and you are wanted.
Lifeline Australia- 13 11 14
Lifeline NZ- 0800 543 354 (0800 LIFELINE)
Lifeline NZ- Free text 4357 (HELP).