Re: Life Update
Hi again everyone!
The last few days have been pretty hectic with the interview and hospital. The interviewer at my home uni seemed impressed with my roleplay and said 'Well done' and that it was probably the hardest task of the interview. I just said, 'Thanks, I got plenty of practice since last year's interview'. Most of the other questions were exactly the same or very close to last year's ones, so it's good that I was able to just skim them because they give you very little time to read the scenarios and answer. I was told by the director of the program that 550 people applied this year at that uni.
We've had some really frustrating experiences with the hospital staff since last weekend:
- My sister asked the nurses for her prescribed painkiller so that she could do an hour and a half of exercises with my mum supervising her over the weekend. She is only on half a tablet of it a day. We have been doing this every weekend, so this is not a new thing, and the nurses gave it to her on Saturday. But on Sunday, the same nurses refused to give it to her and called her 'demanding'. My sister said she couldn't do her exercises without it and they just dismissed her by saying 'Oh, that just means you'll miss out on spending time with your mum outside of your room then'. After they left, she started crying and this triggered at least an hour of seizures. We voiced our concerns to them and they apologised. She was happy with their apology.
- Previously, the registrar told us that we were free to seek out other opinions from other FND experts if we chose to. We decided to ask about this since the hospital's FND expert admitted that she didn't know what to do. I thought maybe another expert could have some other suggestions or be able to come up with something with the hospital. But then the doctor she is under seemed to be offended and annoyed about it and said that their FND expert is 'the best there is'. Eventually, she begrudgingly agreed to contact another FND expert.
- Today, my mum visited the hospital at 1:30pm to be told off by the nurse unit manager that she was 'too early' and to come after 4pm, when my sister's physio for the day finished at 2pm and she was going to be in her room for the rest of the day after that. We were not told that we couldn't visit at 1:30pm and there were no definite times regarding our visiting hours.
We have expressed our concerns about these disrespectful interactions to the hospital since they are associated with poorer FND outcomes and we feel as though we have to trust the staff.
My sister's seizures have now changed. Sometimes she looks like she's asleep, but it's actually a seizure. She can be out of it for up to a few hours at a time, so the team keep changing their plans for her treatment and what they want us to do.
My grandma is also continuing to make things hard for me at home. She constantly claims to be sick or dying even when there is clearly nothing wrong with her. Yesterday, she lay in bed a few hours before my dad came home (despite being very active all day) and when he came, she said that she had been in bed all day and had been screaming at me to help her for hours, but that I never came. Nothing like this ever happened and as I was just in the next room, I would have heard her calling out. This is the second time she has done this to me and it only happens when I am alone with her when my sister is in hospital, just before my dad comes home. My dad told her that I must have been asleep, but I had been awake for hours and I am also a very light sleeper and have been woken up by her yelling from the other side of the house before. He told me to look up an after hours chemist so that he could get her medicine, although I don't believe she is really sick and that this is just a ploy for attention because she has been like this all her life.
@Tiny_leaf I totally agree with you. For my family, caring is a 24 hour thing. I also think that the hospital should provide us with more supports when my sister is an outpatient. The first admission this year, they discharged her without even teaching her and us how to come as an outpatient since it is hard for her to tolerate transportation even though we asked for more support. It's as if they were telling us to figure it out on our own. She ended up having to be readmitted because we couldn't cope.
Ugh, that sounds awful. I'm sorry you're in so much pain. I think surges of pain can really set off FND symptoms, unfortunately. Like you, I also found strengthening exercises for my chronic pain to initially be unhelpful. I had to first do things like stretches.
Awww! I had a friend with that kind of fish! I think it is cruel to have a small tank. Designing the tank sounds like a lot of fun!
@Bee Thank you for the kind words.
I like my ophthalmologists. A lot of it is just trial and error and new treatments are being established all the time.
I definitely think that there has been a lot of mismanagement and disorganisation with my sister's care, starting from even before this hospital. One of her doctors that she saw for another health issue suggested that she write a book about all of the errors and failures in her care. If I had to write a list, I'm not sure where I would begin.
@Maddy-RO Funnily enough, I studied health psychology in uni and they taught us a lot of strategies to help people with pain or chronic illness. I showed some to my sister in the initial stages of her illness and realised which ones were helpful and unhelpful for her. But the hospital took ages to realise this even though we told them from the beginning.
Thanks for all of the nice words. I feel very supported on here.
Re: Life Update
Wow it definitely sounds like you and your family have had a big few days! First of all I want to say congrats on impressing your interviewer It's great that you felt prepared given the all the practise you had last year.
It's not nice to hear about those frustrating encounters you've had at the hospital. It must be hard for you to see your sister in that position but I'm glad they apologised to her! It sounds like there's a lot happening for your family, inside and outside of the home. Is there any place that you go to or enjoy that is respite for you?
We're thinking of you right now, it sounds like there's a lot of pressure to balance, so know we are here to listen
Re: Life Update
@WheresMySquishy oh my gosh...
I wish I was surprised by all that....
I went to the hospital today for the physio. They were like "if you want a public appointment, you need to wait till next year". Dad asked when the next available private appointment was and they said tomorrow.
The hospital had enough private appointments empty that they were able to schedule a weekly hydrotherapy session with no one else in it (the normal class size is like 6) because of my anxiety. They could afford to set aside 5 appointment slots a week for nothing, but wouldn't let public patients in until the new year!!!
I asked if I could share my session with a public patient, since they weren't getting money from the other five spaces anyway, and the good news is they were okay with that.
I'm glad that the interview went well!!
Your grandma sounds really frustrating at the moment...
Were you able to explain the situation to your dad?
Re: Life Update
oh dear! I'm not really surprised with what you're saying about the hospital given how I and family have been treated in hospital over the years with complex cases, but it's still sad to hear
It certainly sounds like there's been lots of errors and failures - not even knowing where to begin highlights that.
Glad to hear you're feeling supported
Remember you're amazing just as you are
Re: Life Update
Aww... that’s so sad and disappointing that she had to go through that stuff! I’ve seen seizures before, and I know what it feels like to go through them. I’ve had similar things go on to me before too.
And I completely understand what you mean by bedside manner! I’ve never had to be in a hospital bed, but a lot of the staff that I had to go to appointments with were rude enough to not listen properly to what I was saying. I got there in the end, with maybe 2 appointments to go. And trusting the staff can also be tricky. Especially when you sister has already gone through so many “treatments” (from memory) that didn’t work.
Happy Birthday for yesterday @WheresMySquishy! Even if it was a little disappointing about your sister.
That’s good that she’s been better at home though! I give her my best wishes to get better too. A lift? That sounds pretty cool. What kind of lift though? I’m thinking of a chair that goes on stairs, or one you would find in tall buildings/car parks.
Do you know if it will take a while before you see improvement in your eyes? I hope you do see improvement soon!
That also sucks, being rejected. That’s a good idea though, wanting a job where you can use your volunteering skills! I want to apply for a job at the new woolworths that is getting built nearby me, but I don’t know if I can, by the time it’s built. I have to be 14 and a half, but I have 2 months until that happens. Even then, I’m better off with a Christmas casual job, not a throughout the year job.
I’m doing pretty good, just tired. Schools finished, and now I have all these stay at home days to work on Christmas prezzies!
Man that was a long post... 😌
// You are worth Something, not Nothing. Don’t let anyone tell you otherwise //
Re: Life Update
Wewww @WheresMySquishy that sounds so busy, you must really be under the pump!
If I may ask, do you have any good self-care tips or like resources that you used to help you get through those specific types of situations and circumstances that you went through? Things that you might have done that really resonated with you in those moments, and tend to target/work best in those moments? I hope that makes sense! x
Re: Life Update
@Tiny_leaf That's so frustrating! I think the public system is totally broken.
When we first went to the current hospital my sister is in, they said that we would get an admission within two weeks. But it wasn't until at least four months after that appointment. When we protested because she was getting worse at home and prompt treatment with her condition is vital for recovery, we were told that it wasn't considered enough of an emergency, despite her doctor at the time telling the people in charge of bed management that it was life threatening.
We had a lot of other bad encounters with staff too, which I think has contributed to her seizures getting more prolonged. But she's at home now and is happier here. The seizures seem to be less too.
Even my dad is frustrated with my grandma. We think she just wants attention. A few weeks ago, we were all at the hospital and she complained that she had to go upstairs in the dark because no one left the light on for her, despite her being perfectly capable of turning on the downstairs light or waiting until one of us came home. My dad told her that she doesn't know how good she has it for someone her age and threatened to take her to a nursing home. She just said 'Yeah, maybe I should go.'
I feel like some days are okay and then some days, something happens to make me crack. Some days are really hard. My carees can be really unpredictable. I look at other carers who say they have enough time and money to take a round-the-world holiday from caring for example and I wonder how they manage.
@Bre-RO I got to go to a shopping centre for my birthday, so that was good at least. I might also be going to the movies with one of my extended family members this week. I feel more happier when I am out of the house because it can honestly be pretty exhausting being with the people I care for all day and also having to watch what I do and say around them. For example, sometimes if I talk about certain topics, it can trigger my sister's symptoms.
@xXLexi_Lou122Xx I'm so sorry about your experiences. It's so frustrating not being listened to.
Thanks for the birthday wishes!
I hope I end up seeing some improvement in my eyes too! My vision has still been quite blurry/affected and I'm worried about the impact it will have on my work and studies in the future, especially as focusing and leaving the house make my symptoms worse. I was told that it would be 4-6 weeks after the procedure before I noticed a difference and today is the 5th week mark. But maybe the ophthalmologist will be able to tell me more.
The lift runs on rails! It's really cool. It finally got finished today and we brought my sister upstairs. I gave it a try too. The only thing we need to do is get a sim card for the emergency phone inside it. It cost a lot of money but I think it will be worth it because she's likely to be like this for years.
What makes me angry about being rejected from these programs is that I know people with much less experience and lower grades than me who have got into them. I know someone who just sat around and did nothing in one of her volunteering positions because they didn't give her any work to do and had some other experience that was only tangentially related getting into one of the same unis I applied to on her first attempt applying, whereas I've been rejected from that one twice. I don't know what experience could be more relevant for an applied psychology course than doing/training in different kinds of therapies with people with mental and physical health issues and working alongside clinical psychologists for years. I've tried to ask for feedback from one uni but they haven't replied. It makes me wonder if there is some other factor at play, though some people have told me that my rate of getting an interview is really good. I've had three now.
I think that my volunteering experience has opened a lot of doors for me if I don't get into a course.
I hope you can get a job if you want one! I kind of regret not doing more to boost my resume when I was in high school, or taking a gap year to gain some experience before going to uni.
It's so exciting that you're on holidays!
@Tay100 Welcome to the forums! The main things that have helped me are:
- Talking to people outside of the family about my experiences.
- Getting outside of the house when I can.
- Focusing on my hobbies.
- Writing down how I feel.
- Reading inspirational quotes.
Australian carers' websites have really helped me, such as these ones. I even found one that let me put in all my duties that I do as a carer and generated a resume for me. But I wish that there were more free online or phone counselling services for carers. The ones I have seen either cost money, are limited or don't have the support I need. I've used other non-specific helplines though.
Re: Life Update
I saw my ophthalmologist today. There was good news and bad news.
The good news is that my eyes look better on examination. He did a test where he expressed some of my glands to look at the oils in my eye and they seemed to be of better quality since I had my procedure. So, there are signs that it has done something. It will take about 3-4 months for me to see the full effect and then after that, I will stop improving but hopefully stay at that level. The procedure can be repeated again (I think I was told before I could have it yearly). I will always have symptoms and need to be on treatments for life, but it might not be as bad as before once it fully works. He said the reason it is hard for me to notice a difference is due to the poor air quality at the moment, which is one of the things that make my condition worse and has apparently been affecting a lot of the patients. It was so bad today that I couldn't open one of my eyes so they could examine it, so they had to give me numbing eye drops. I was so sore I didn't feel like going to my volunteering and just went back to bed as soon as I got home.
Unfortunately, the eye drops for one of my other conditions aren't working, so he prescribed me something stronger.
They didn't test my vision but it was going in and out of blurriness as usual.
I'm just happy I don't have to go on the strong immunosuppressant eye drops with lots of side effects.
I got a rejection today from another uni I applied to, which was kind of disheartening because I know people with less relevant experience than me who have got interviews and offers there. I really think what they are looking for differs year by year and is dependent on other factors we don't know about. I wish they would tell us what they are looking for. They did not give me a reason at all.
I've had a look around at some jobs and am thinking of sending in a resume and enquiring about them in case I don't get into a course this year.
Re: Life Update
While I'm sorry to hear about your ongoing challenges with your eye condition, I'm so glad the procedure helped and that it can be repeated! That sounds really positive. It's such a shame about the air quality and how it's affecting you and others, I'm sorry to hear that
I'm really sorry about the uni rejection letter, that must be so upsetting, especially with the lack of clarity around what they're looking for. I'm really impressed at how you can articulate how you're feeling during this tough experience, and at how you're looking at alternative plans if this doesn't work out. That shows so much strength.
Could you maybe consider writing back to the uni's to ask for feedback? It could be something like 'Dear ____, Thank you for taking the time to consider my application to X course. While I am disappointed to not have been successful this time, I am hoping to grow from the experience. Do you have any feedback for me on my application, and what I could improve upon to be a stronger applicant in the future? Any feedback you have for me would be greatly appreciated. Yours sincerely, ...'
Just an idea. Of course just if you have the time and emotional energy, and think it's possible it could help.
Also is there any self care you can do? Hope you're ok
Re: Life Update
Hi @hellofriend! Thanks for the support
I think I've still got a long road ahead with my eye problems because they are chronic and I have a lot of different conditions. I am still experiencing a lot of symptoms but I'm hopeful that the procedure will eventually help one of the problems and it is just slow to take effect. One issue was that I couldn't have surgeries to fix some of the other conditions until the problem I had the procedure for becomes more manageable, and now the ophthalmologist has said that I can eventually have them.
It is a really time-consuming process because each treatment takes a long time to see if it will work and even if they do work, there is always the chance of a flare-up which I will need to go back for. I have heard of some patients feeling instant dramatic results after my procedure but I am not one of them, which they were expecting anyway. But it is positive that my eyes are now producing oil because I was told at the start of the year that my eyes weren't producing any. I have been resistant to almost every form of treatment for this problem until now and this procedure was the second last resort.
This particular uni didn't give me the contact details of whoever is in charge of the program. I tried asking for feedback as to how I can improve my application in the future for another uni but they didn't reply. However, one uni told me that it was based on my academic results and that to make my application more competitive, I should do a PhD or another Master's degree, despite this not being a requirement when I applied. I think that they scaled down my mark as the cutoff to achieve my particular grade was higher at my home uni compared to this uni. The only people I have seen get into this particular uni's course are their own students, so I'm wondering if they prefer them over external applicants. Anyway, I believe getting more experience would be more valuable than paying for another degree I might not even get to use. The particular course I applied for can be combined with a PhD anyway.
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