Life Update

@WheresMySquishy 

Wow that's a lot.. it sounds exhausting..!

I'm glad at least nothing went wrong, hopefully it turns out well!!

Oof... I don't want to imagine how that'd feel...

But... seizures are a symptom of fnd... How can they not treat fnd if it.. includes symptoms of fnd...?

Seizures are horrible, especially since with fnd ones the person is normally conscious.... Can confirm that it's not fun.

Oh my gosh!!! You have a right to feel any way you damn want!! 

I've had no pain management either actually... and people wonder why I keep going downhill. 

It just doesn't seem to cross anyone's mind that it might actually be useful for someone who hasn't had a dramatic injury or something.

I hope you get into the course! What do you want to study?

Ugh well... I'd started improving enormously since getting my cane. Like I'm still always in pain but it's manageable.

Anyway after a few weeks of physio that's all gone backwards. He's forgotten that I have more than one condition, and only focused on treating that. (it turns out that my pain's about 70% functional and 30% my joints not staying in place)

I'm looking into a wheelchair, because I don't want to be forced not to do stuff just because of that.

Oh, though I get to see a neurophysiotherapist soon so hopefully they'll be competent.

And I might be getting a fish!! I just need to convince my dad..

But hopefully I'll be able to! I'm trying to figure out what kind of plants would work in the tank.

@Tiny_leaf  I hope the procedure can help me function a bit better when I'm doing work or volunteering. 🙂 Sometimes, it is enough for some people but my doctor thinks it might not fix the problem completely, just make it more manageable if it does help.

We think that my sister is conscious during them, but she can't see, hear or respond much. She senses pain when her legs are touch and pushes me away. Some people get an 'aura' when they have the seizures, but she doesn't. So, it's hard to find techniques that prevent the seizures. She also loses her memory of some things that have happened before the seizure.

It's actually been really hard for me caring for my grandma at home while my sister is in hospital. I was up late the other day because I was sick with a stomach bug, then after I had about three hours of sleep my mum woke me up to tell me that the hospital told her to come. I had to stay awake because she had made an appointment with a plumber to fix one of the toilets and my grandma gets paranoid about visitors so can't be trusted to let people into the house and know what to do. I tried to talk to the plumber, but she blocked me from going near the bathroom and just stood at the door and watched him do his work, so I went back to sleep. Then about ten or twenty minutes later after I had nodded off, the plumber called out that he had to go to the shops to buy some rubber. I went back to sleep but then I had to let him back in again because my grandma had locked him out. I went back to sleep again only to get woken up by the plumber yelling that the toilet could not be used for a day. My grandma called out for me because she didn't understand what he said. I actually snapped at her and said, 'What do you want? I'm trying to sleep'. I had to call my parents to explain this to my grandma in her native language because I didn't know how to. Then my grandma wanted me to take her to her room, despite being perfectly capable of going to her room herself. I just said 'I can't' and went back to sleep, but even then she kept me awake by making alarms go off and going up and down the stairs. Then later, my dad came home and he and my grandma were making heaps of noise, nagging and carrying on and I was so frustrated, sore and tired that I just responded in grunts and moans. And all I had eaten all day were two slices of toast and I had only drank half a cup of water and it was over 40 degrees, yet they did not ask if I wanted anything. I'm feeling a bit better today though.

That's no good that you haven't got any pain management. 😞 I hope you get some relief soon.
We asked for some other types of pain relief for my sister, but they said they don't have good evidence and her system might not be able to handle it. The FND specialist also said that you cannot have both pain relief and psychotherapy for some reason.

I'm applying for my Master in Clinical Psychology. I hope I get in but it's so competitive. They get hundreds of applicants for a very limited number of places. At my home uni, they get around 600 applicants for 60 interviews. I got an interview at this uni last year as well, but didn't make the top 25 or so that they eventually took. I thought the questions were kind of weird, but luckily I know what they are now so I have an advantage this year.
Some people are applying to courses interstate, but it's hard for me to leave my family at this time.

I'm glad the cane has help you. 🙂 It must be complicated having multiple causes of your symptoms. I've heard of people having conditions like multiple sclerosis or epilepsy, but then developing FND at the same time or later on, so some other their symptoms are functional and some are caused by their other condition. From what I have seen, other conditions can trigger FND.
Early on in my sister's condition (before it developed into full blown FND), she could tolerate being in a wheelchair for long periods of time and it actually helped us a lot when we walked long distances, because she couldn't tolerate them due to her pain.

I think the neurophysio could be a good idea. It's always good to have people who are trained in managing FND. We personally found a neurophysio to be more competent than a regular physio.

We had fish once! They were actually my friend's, but my parents couldn't really look after them and gave them away. I also used to keep aqua dragons/sea monkeys, but one day they suddenly stopped moving. I thought they were dead, so I got rid of them. Later on, I realised that they could have actually have been in cryptobiosis and might have still been alive after all. 😞
What kind of fish do you want to get?

@WheresMySquishy I've read your posts and while I don't have a response, I wanted to send you big hugs

Hi @WheresMySquishy, I hope you don't mind but I decided to move your comment into its own thread. It sounds as though you have had a few significant updates in your life that deserve their own space to be explored. If there any issues, please do not hesitate to shoot through an email. Also feel free to update the title accordingly 

I hope you have some luck with the results from your eye procedure. It sounds like such a complex issue but it is reassuring that some form of preventative measure is being taken to stop it from developing further. What is it like for you now after having the procedure?

From your previous posts, it sounds as though your sister's care is finally beginning to improve. I imagine it may feel bittersweet. On one hand, your sister is beginning to receive more appropriate support.. but on the other hand, it sounds as though these improvements could have been realised and explored a lot earlier. I remember you mentioning how exhausting and stressful this whole process has been for your family with a lot of conflicting opinions from health professionals. How do you feel about them reviewing how your sister has been cared for?

Good luck for your interviews! I know a few people going through this process at the moment and they are feeling quite stressed and anxious. It is definitely a normal way to feel when facing these kinds of challenges. It can be hard to gauge how you have performed so it is great that you are feeling positive about it

@Taylor-RO  Thanks for making the thread for me. 🙂

To be honest, I don't really feel much different after the procedure. My symptoms are present on a daily basis but they are not constantly at the same level or happening at the same time. So it is hard for me to tell if it will work or not.
I think it was a good thing to have even if it doesn't end up working because the treatment was supposed to address my blocked glands, and my ophthalmologists weren't completely sure if that was the problem. So that's one thing they can rule out if it doesn't work. 🙂

Yes, it does feel bittersweet. We were feeling pretty deflated after what the specialist said, but her doctor is optimistic and the team hasn't given up on her. I honestly believe that if the psychological treatment had been started earlier and she hadn't been discharged, it could have prevented her from getting worse. What I don't understand is if the specialist thought she had longstanding psychological problems or unresolved issues, why has proper therapy not been started until now, especially as we kept asking for it for months? But oh well.
I really think that they need to review her care and reconsider discharging her without goals or progress being made, because it is hard for us to take her to the hospital as an outpatient and we believe that the outpatient physio made her worse. It doesn't help as well that the physio is not consistent. I've lost track of the number of physios she's had in such a short amount of time. And sometimes they do one physio session a week and sometimes they do more, on unpredictable days (we get told at the end of the week the days for the week after) so we have to plan everything around when the physio is available. Taking her there is an ordeal so it is hard to do much else on those days. There was also no communication between the rest of the team and the physios and when they found out she was only having physio once a week, her doctor got angry. She was also meant to have other tests done, but they would either be cancelled or not done, so there was conflict between members of her team.

We tried to ask about the prognosis of her condition, especially as it is a severe case and her treatment has been delayed, but the specialist didn't know. Her condition is usually associated with a poor prognosis, especially if there are delays in treatment or poor rapport with the professionals, but it's better in younger people. I think she will always have some kind of problem though and that this is something we have to prepare for.

@Bee  Thank you so much. I really appreciate the support.

@WheresMySquishy Sounds like the ophthalmologist has a bit of a plan going forward. Do you like them?

I agree with @Maddy-RO you are displaying extreme strength and resilience through all of this while continuing study and applying for clinical masters!!! Go you!

Things sound pretty intense with your sister and her care. I can sympathize with how hard this is and feeling bittersweet about them finally listening. As @Tiny_leaf mentioned I can imagine that management would be useful. It kind of sounds like things aren't being managed as well as they could have? Would you say that's accurate?

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. 🙂

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

@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?

@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.

@Tay100  I also find it hard to have the time to make a bullet journal, especially because you have to make the layouts for each week. I use a weekly diary with a notebook at the back and use this bullet journal app on my phone. I usually use the app to track my medications and appointments and categorise information. I found it really helpful as a carer. 🙂

So... I went to the movies with one of my extended family members yesterday and my parents also left the house for a short time, leaving my sister alone with grandma. Then my sister called my parents in a panic because the smoke alarms were going off and she could see and smell smoke. She couldn't do anything about it because she can't get out of bed on her own. Luckily, my parents were very close to the house so they came back straight away. It turns out my grandma was burning something. Usually, I am the one to turn off appliances and manage emergencies if she does unsafe things. She doesn't think to do so herself and doesn't understand dangers or risks. It frustrates me because I think she has dementia and she refuses a lot of outside care and my dad won't do anything about it because he's in denial about how much she needs it.
I was thinking about what if my sister had a seizure and wasn't able to communicate what happened. It was lucky that she was awake at the time.
I'm thinking that the only solution is to turn off the electricity to the kitchen from the box whenever we go out. We have told my grandma not to use appliances but she still does.

Hi @WheresMySquishy ,

I love the idea of a bullet journal app! My friend swears that hers has changed her life ,but I haven't really got into using it properly yet, I will check out that app. Thank you for sharing that! 

That sounds like a very stressful situation with your family, and must have been really frightening for your sister. It's always really hard when older family members may start experiencing problems with their memory or function, we went through the same thing with my grandparents in their later years. Have you heard of an ACAT assessment? At some stage that could be helpful, it is the basic aged care assessment that looks at cognitive and physical function, and can also mean someone is eligible for extra support at home depending on their needs. Turning off the kitchen circuit sounds like it may be a sensible idea for now, though. 

I'm so glad to hear that nobody was hurt and that your sister's OK, it sounds like you've had a lot on your plate lately between uni interviews, supporting your family, and dealing with your own health. You also give so much fantastic advice, support and wisdom to the community here, which is really amazing. Just wanted to check in and see  how  you are  doing?  

@Janine-RO  It really is a great app! 🙂 I definitely prefer the ones where you can categorise information. This  is another similar app for iOS.
I'm so sorry about your grandparents. 😞 It's always hard to see them lose their function and need support.  We are currently waiting on an ACAT assessment and a home care package for my grandma. In the meantime, she can have some supports such as 2 hours of respite a week and people coming to the house to help with her hygiene, but it's not enough for us and she refuses to let anyone care for her. I've read that it can take a year or more for a home care package to be approved, which is really worrying. We also have a cleaner who helps clean the messes that my grandma creates because she is very unhygienic.
I'm hoping that my dad will see how bad she is now that he's on holidays. I am usually the one who monitors her, so I have more of an idea of the level of support she needs. We actually had some members of my sister's medical team come to the house and they could see how frail my grandma was and were concerned about safety issues too, not just for her but for all of us. If we need to evacuate the house in case of a fire, it can be hard to get my sister out, for example.
Thanks for asking about me. I'm looking forward to having some free time and catching up with my extended family in the holidays before finding out the outcome of the uni applications or looking for work where I can use some of my volunteering skills. 🙂

@Tay100  I think our electricity box is divided into sections for different parts of the house so it's just a matter of finding out which one goes to the kitchen. I agree that safety has to come first, regardless of what my dad thinks. My grandma is in the kitchen from 8am to 5-7pm cooking and using electricity and most of the food ends up being burnt or goes uneaten. I guess it's her way of keeping busy, but I wish she would just do something else. I would prefer that she stays upstairs until after I wake up (she wakes up at the crack of dawn and starts doing household tasks straight away).

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.

Hey @WheresMySquishy 

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