A day in my life
I had another bad day yesterday. 😞
Here's the gist of it:
5am: go to sleep because that's when sister has gone to sleep (it's hard for her to eat dinner and get ready for bed when she has seizures and its difficult to rouse her)
10am: wake up sick. take medication. try to call back people I've interviewed with and who have left a message, but they don't respond. check emails to see if i've heard back from other interviewers.
11am: go back to bed with phone on next to me but it is sweltering and I can't sleep
12:30pm: mum barges into my room to tell me to call back the people I've interviewed. i tell them I already have but she demands that I call them again
1pm: grandma's ACAT assessment. unsurprisingly for me (but a surprise for other family members who have been in complete denial and do not spend as much time with her as I do), she cannot do almost all of the cognitive tasks they try to get her to do due to her memory issues. When they ask her what she will do if there is an emergency and my parents are at the hospital with my sister, she says she would call for me to come. the team tries to convince her to have carers, but I'm not sure if she really understands.
2:30pm: finally get the call back and am told i didn't get the job. I am told i have very impressive experience, passion and enthusiasm. i ask if there is anything i can improve on but am told that it was just very competitive. I really wanted that job 😞
3pm: try to have a nap but grandma decides to wake me up by blasting her TV at full volume because she refuses to wear her hearing aids.
5pm: got angry at mum because of a comment she made about how miserable she is that all her friends' children are working and that her life is at a standstill. I said she shouldn't compare me with them.
that evening: i spend a few hours applying to a few more positions i am qualified for. sister develops new symptoms which are very distressing for her. i film them to show the hospital.
I talk to some of my extended family about what happened with the ACAT assessment. For context, they are more related to my grandma than I am and live close by. I have been telling them about how hard it is to care for her and the decline in her health for more than a year. Not once have they offered to have her stay at their house or spend even a few hours with her at our house so we can have some respite or focus on caring for my sister. They say, 'Wow, she's worse than we thought she was'. I think to myself, 'Well, if you and your family actually offered to help with the caring then you would have seen how bad she was.'
10-11pm: I finally sit down to eat (all I have had all day before this are two slices of toast due to how busy I've been), when my sister has a fall. I sit on the ground comforting her as she screams. Parents get the hoist, which is extremely heavy and hard to fit into the room, but it runs out of battery while she is still low to the ground.
End up having to lower bed as far as it will go and parents push her in manually, which takes ages. All the while she is screaming and crying.
12am: I ask mum what does the hospital expect us to do if she falls and there is only one person at home? she says that the hospital wants two people to be at home at all times. I said as dad is working full time, who else can stay at home? she says 'you.' I said that means I won't be able to work or study. she says 'well it's not like you get accepted to anything anyway'.
5am: We get my sister to bed. I go to sleep as well but I wake up several times with pain and have to keep getting up to take painkillers. My eye problems flare up as well.
I feel like days like these are becoming more and more common, especially as my sister and grandma get more symptoms. I just hate being a carer.
I'm seriously thinking of calling the hospital myself to push for them to admit my sister. I can see my other family members' mental health declining and I don't want to end up having to care for them as well. I often have to make decisions for my parents regarding the caring. I'm not having the life that someone my age should be having and I could be doing this for years to come.
Comments
thinking of you @WheresMySquishy
being a carer is so damn hard, theres always so many pressures to contend with isn't there esp when the carers are our age. can you call myagedcare for your grandma to help get some supports for her and to help reduce the stress for you?
could carers Australia help to get some supports for your sister?
im sorry to hear how much pain you've been in too, I can empathise with the effects of pain has on us too. I hope that youll be able to get the right supports for the pain for your experiencing too. good luck with the tests you have to face as well, I hope that it provides some answers for you
sending hugs your way 
Hi all! Thanks for the well wishes and kind words
This is just an update about what happened the past few days.
The pain went away for a few hours, but then started up again. I couldn't sleep from it and painkillers weren't helping. It wasn't like a severe or sharp pain, it was more like a cramping sensation in around my left side. It kind of felt like contractions or muscle spasms. It varied in intensity and came in episodes, so sometimes, it would be mild and aching and sometimes it could feel like intense cramping.
Because it was interfering with sleeping and eating and it had been going on for more than two weeks, I decided to go to the local emergency department Thursday morning to see if they could give me stronger painkillers and possibly do other investigations than the ones I had already done. I didn't even pack any clothes or all of my medications because I thought I would only be there for a few hours and I just booked a ride there myself. There have been lots of developments in my area with shuttle buses, public transport and the like lately, so I was lucky to have a driver turn up in a minute.
At the hospital, I explained the background history. I told them that on January 7th, I began to experience the pain accompanied with bleeding. The next day, my mum made me go to our medical centre. Our GP wasn't there, but the doctor who saw me told me I had a UTI and that I couldn't possibly have a kidney stone because I wasn't in severe pain. I was prescribed antibiotics and told to come back after seeing how I was on the weekend. The tests they ran ended up showing blood and leukocytes, but no bacteria. The bleeding got gradually less, but I was still in pain. I couldn't get an appointment until a week after the first one. We asked about a CT scan, but the doctor was reluctant to send me for one due to my age and the radiation, so he referred me for an 'urgent' ultrasound instead. That was also a hassle to book because they were full up and they just told me to walk in last Friday. The report didn't come until Monday and it said that they could not find the cause of my pain, and some other tests the GP ran in the second appointment also came back normal. I was told to call the GP again if the pain continued. The pain had got less for a few days but then started getting worse again.
For context, my parents weren't taking me seriously and didn't think any investigation would show anything despite being in healthcare professions, but my uncle who is also a GP told me to ask for a CT scan and possibly other investigations because he thought it sounded like a kidney stone.
Luckily, the hospital staff took me seriously as soon as I told them the story and showed them a picture on my phone of the initial bleeding. They examined my abdomen and side, which was tender. Then they did their own ultrasound and thought it looked suspicious, something about the left kidney being more visible than other or something. They told me it was probably a kidney stone and encouraged me to make the decision to have a CT scan saying that in my case, the benefits outweighed the risks. They did a few more tests as well. My dad came during his lunch break and spoke to the hospital's urologist and the staff (turns out, they all knew each other).
Later in the afternoon, I was told that the CT scan showed that there was a 1cm stone blocking my left ureter and that I needed surgery that day because it wasn't going to pass on its own. I called my family to tell them the news and my mum came as the urologist showed up to tell me more.
There were also three other stones in my kidneys, so he asked if there was a family history of kidney stones. Only at this point did my parents say that there was. I was told that the other tests they had done were abnormal so I had to start on IV antibiotics. Tests also showed bleeding, although I wasn't told this at the time. Then the urologist told me matter of factly that I had a moderate blockage and was currently at risk of going into sepsis and told my mum that because I was young, the pain was not severe. He said I would have just carried on and there would have been no other indication that something was wrong until I suddenly collapsed, at which point it would have become life threatening, and I had already been in pain for a 'long time'. The urologist said I was currently in an emergency situation and I would be operated on within the next hour. A bunch of people kind of swarmed around my bed in the ER. It was like something out of a medical drama! 
At this point, I was in disbelief and shock because I thought I was just going to get painkillers. I had my doubts that it was a UTI and suspected a kidney stone but I didn't think it was going to be quite that bad.
I ended up having a cystoscopy and a stent put in. I stayed overnight, went home yesterday afternoon and now I'm on oral antibiotics. The stent has side effects, but the pain I had before is now gone. Next week, I have an appointment with the urologist, where I have to book for the actual laser removal of the obstructing stone (I was told that they first had to get the antibiotics going and unblock the ureter) and replacement of the stent. Then after that, I will come in for an in-office procedure. He will try to determine why this happened to me.
Who knows what could have happened if I had not decided to go to emergency when I did? I'm glad that I didn't go back to the medical practice and have an outpatient CT because that could have taken ages. I feel like I went to hospital at the right time. I was just fed up and knew something wasn't right.
I am still recovering from the surgery and the stress of it all (my sister also developed new symptoms as a result of the stress) so I might not be online much, but thank you for all the kind messages.
@WheresMySquishy oh my gosh..!
I'm glad you listened to yourself and went to hospital. 1cm sounds huge..!! No wonder you were hurting so much...
I hope the procedure and your recovery go okay, and that you get some rest.
We're here if you need any support through this
I hope you recover soon and hope you’re feeling better now
We’re thinking of you
Hi everyone! Thanks for all the lovely messages 🙂
I'm just trying to take it easy at home. I'm having some side effects from the antibiotics and stent but am doing well other than that. The secretary of the urologist called to ask about me and said I was very tough for putting up with the stent because most patients don't like it and it's uncomfortable. I don't think it's that bad. I would rather have it than pain from the blockage. And neither of those things are as painful as the episodes of proctalgia fugax that I sometimes get, although people say that kidney stone pain is supposed to be really severe. I would rate proctalgia fugax as consistently 8-9 out of 10, whereas the blockage ranged between 1-7 out of 10.
My parents and the GP actually didn't believe I had a kidney stone because the ones they had seen would scream in pain. There was actually another lady on the other side of the room in the emergency department who was screaming, whereas I was just sitting quietly and without any painkillers because I told them I would wait until it flared up again. When I was in emergency, the pain went down by itself to 1-4 out of 10. It was just uncomfortable and sore to lie on my back and side and it was also tender. I was questioning my decision to go, but decided to stay until after the tests came back and also because I was hoping they would give me some painkillers to take home.
I think that the reason that they kept me in overnight was because they were worried about my blood test results and the risk of sepsis, and also because I was on IV antibiotics to try to reduce the risk. I was actually surprised about how bad it was and I didn't know that you could get sepsis from kidney stones.
As usual, my grandma decided to do her attention-seeking behaviour and act like she was sick when there was nothing wrong with her. She just tends to do this when someone else is sick or in hospital. She has also never said a word to me despite being told about what happened and the seriousness of it. She also told my grandpa what happened (and completely incorrectly), when we told her not to because we didn't want to worry or upset him.
Our relationship definitely isn't reciprocal and I've done a lot more for her than she has ever done for me. This was not like a routine test or procedure, it was potentially life-threatening in my case. The doctor even said that the surgery had to be done that day and made some phone calls saying that it was an emergency so they could prepare an operating room.
We also told some other people, but they still haven't asked about me or offered any support. I always tell my family how it's frustrating when certain people don't ask about me despite knowing I am going through a hard time and they just think I'm being paranoid, but this time we know it's something on their part.
Hi all,
Just a little update. My surgery was scheduled for Wednesday, but just as I was about to be cannulated, the surgeon came into the anaesthetic bay and said that he didn't like something in my test results (which were received on Monday), so he decided to call off the operation. He asked to see me yesterday, and we decided we would repeat the test and if they did not show signs of infection, we would go ahead with the surgery next Wednesday instead, otherwise it would be delayed again. In the meantime, I have been put on another antibiotic which is making me feel even sicker and has been giving me more side effects than the last one.
It kind of sounds like a blunder to me. I don't think my test results were looked at until the last moment, when we should have been informed about this decision in advance. I've had both good and bad experiences with this hospital. This week, they seemed really disorganised. I had been fasting since 7:30am and was only told this closer to 5pm because they were running behind schedule.
I was really annoyed because I am having lots of side effects from the stent and antibiotics, so I'm not able to walk around much. I haven't been able to go to my volunteering since early January because of the delay in getting the diagnosis and treatment (they are understanding though). What's worse is that I have people calling me offering me positions and trying to interview me and I have had to tell them the story (I applied before I had the first surgery because the GP I went to told me I just had an infection). I don't know if I will be well enough to work in the timeframe that they want me to start. I also haven't been able to do a lot of physical stuff, which the family members I am caring for require and which my sister's hospital expects me to do. The stress of it all seems to have given my sister new symptoms and I have to also reschedule the stent removal and an appointment with my regular GP.
I think the only professionals I have been happy with are the emergency doctor, who knew what the problem was straight away and encouraged me to have a scan, and the nurses in my first admission. My dad spoke to the GP I saw (not my regular one) and he said that he should have done a CT scan and that I didn't look to be in that much pain, but my dad said he didn't blame him.
@WheresMySquishy Sending big hugs and lots of love your way
Reading this my heart ached, and I hear that there are several aspects of caring that are frustrating you right now. It sounds like other family members don’t seem to care as much about the caring aspect of your grandma and it’s left for you to do. It sounds like this is a similar situation with your sister. Is this correct?
I wanted to ask how you are feeling after your mum's comment about not getting accepted into further study. I imagine that would have hurt, so I'm checking in to see how you're feeling around this x
It’s a lot to cope with. And it’s understandable that you weren’t in the mood before for suggestions
I personally don’t have any ideas on how to help apart from listening and empathising with how challenging and difficult it is. Know that we are here for you
Hey @WheresMySquishy that sounds so tough and exhausting and I'm sorry that you've gone through all on your own especially at a young age 😞 But from what I've read it also tells me that you're also a strong and tough person to be able to endure through all of this, and we're glad that you've shared how your life is with us! 😄 I hope that your pain episode goes away quickly too and I hope that things do turn out for the better for you and your family. How have things been for you recently?
@WheresMySquishy That is a lot to deal with I can empathize somewhat as my mum has chronic health issues and there are times me and my sisters have to care for her but at least I have some others to help at those times I can’t imagine caring for 2 very sick people and looking for work and trying to study all on my own. It must be very exhausting and you must be a very strong person to be able to keep dealing with it even though to you it probably feel like you don’t have any other option but to be strong about it. I hope you can find a way to manage your pain soon. We are all here to listen.
Just wanted to check in and see how you are going today? 🙂
@WheresMySquishy I just wanted to say that sounds really difficult, and I'm sorry you're having to deal with all that....
Do you think a few suggestions might be helpful, or do you just need support at the moment?
Thanks for your support @Tiny_leaf.
At the moment I'm trying to work out what to do about my pain, so I'm not really in the mood for suggestions. I was feeling a bit better over the weekend and earlier in the week but I've had it all day today. I've had a lot of tests over the past few weeks and they've found a couple of things, but not the exact cause of it. The doctor was reluctant to give me more sensitive scans because of the radiation exposure and my age, and was waiting to see if it will go away on its own first. I'm not sure if I should ask for a referral for those scans or go to hospital. I'm on painkillers but they don't really help and usually I just have to wait for the 'pain episode' to go away on its own.
@WheresMySquishy pain sucks.. especially when you don't know why it's there...
I hope that they at least figure out what's happening soon...
