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Life Update

@WheresMySquishy it feels like ages since I last "spoke" to you.

How're you going?

Re: Life Update

@Tiny_leaf  I know right?! It does feel like ages.
Thanks for asking about me. Heart This is going to be really long update because so much has happened in two weeks, so get some popcorn ready.

I had my eye procedure last week. It went fine but we won't know how well it has worked for 4-6 weeks afterwards. If it works, they can repeat it every year or so. I am still having some eye symptoms but it's hard to know the cause because my conditions are complex and there is some overlap between them. They found that half of my glands were lost/blocked and they're hoping that the procedure can stop this from progressing further because it then becomes harder to treat.

My sister also got admitted to hospital again this week as planned. It was such a drama. Recently, she developed non-epileptic seizures/dissociative attacks and the nurses didn't know how to manage them or transfer her safely when she has them so they had to get my mum to stay at the hospital until they became more confident. She was doing slide transfers but they've now decided this is unsafe, so they've gone back to hoisting her. There was talk about them not being able to continue with the admission due to her seizures interfering with her physio, which I was really annoyed about. I was really angry because we had actually told her doctor about our concerns that the seizures were a setback, the lack of progress she has made, whether she could still do physio, and we believed that they occurred after a dodgy physio session. We even showed them the seizures. And at the time she dismissed our concerns and told us we had no right to feel that way! The nerve! Smiley Mad Now that doctor is eating her words and admitting that the seizures are indeed a setback and is frustrated about them herself.

Yesterday, the FND specialist at the hospital took my parents into a room and told them that this was the worst case she had seen in her entire career. She actually said, 'We're screwed' and that she didn't know what to do. She said that we were in a very bad, 'dire' situation and that the team really has to put their heads together and work out a solution. She also said that the way they were currently treating her as an outpatient was wrong and has to be reviewed, and that there is no way she can be discharged unless the seizures become more manageable. She believes that my sister initially had CRPS (which no one picked up on for years) before it progressed into FND and that she has been conditioned into being constantly in pain. Her brain cannot 'turn off' the pain signals.

We asked for my sister's care to be transferred to her or to do a joint admission but she said she wasn't experienced in treating such complex health needs and didn't do joint admissions. But now they have decided to do a week of therapy, starting from today, with a review after a week, by a team of psychologists trained in treating this condition. We were happy because we have always been telling them that the psychological support was basically nonexistent and she felt that they had taught her barely any coping strategies. This should have been done from the beginning, especially as pain is a huge problem for her and they are reluctant to put her on a lot of pain medication. Their aim now is controlling the seizures so she can sit in a wheelchair for longer (she slides down from it, even with seatbelts on) and do physio.

While this has been going on, I've managed to get a few interviews for the course I want to do. I did one a few weeks ago, which I think went well although I was pretty nervous (heard from the other interviewees that they struggled with it but I feel like the interviewers were impressed with my answers), and I have another one on Monday at my undergraduate uni. So I've been practicing potential questions.

Anyway, that's enough of WheresMySquishy's Life Right Now. Smiley Happy
How have you been?

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Re: Life Update

@WheresMySquishy 

 

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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!! Smiley Mad

 

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

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.

Re: Life Update

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 Heart

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 Smiley Happy

Re: Life Update

@Tiny_leaf  I hope the procedure can help me function a bit better when I'm doing work or volunteering. Smiley Happy 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. Smiley Sad 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. Smiley Happy 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. Smiley Sad
What kind of fish do you want to get?

Re: Life Update

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

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Remember you're amazing just as you are Heart

Re: Life Update

@Taylor-RO  Thanks for making the thread for me. Smiley Happy

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. Smiley Happy

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. Heart

Re: Life Update

Hey @WheresMySquishy 

 

That sounds really hard. You are showing extreme strength and resilience throughout all of this. Applying for clinical masters while going through all of this, in itself, is a huge achievement. You should be very proud of yourself. Smiley HappyHeart

 

I really hope your sister is okay. It must've been hard to hear the FND specialist, the person who is "meant" to have all the answers, say "we're screwed." As a patient, or a relative of a patient, it's not really what you want to hear, is it? I'm glad the doctor is hopeful and remaining optimistic though Heart. I hope everything works out. My thoughts are with you and your family during this stressful time. Heart Hopefully psychological treatment will improve things for your sister. Heart Hey, if you get into clinical masters, maybe you can teach her some coping strategies??? Provide some counselling? (Joking - I know that's unethical). 

 

Thinking of you and wishing you all the best with your applications. Heart

 

 

Re: Life Update

@WheresMySquishy I hope so too.. even if it doesn't fix everything, I imagine getting it managed better would still be really useful.

 

Ugh that sounds horrible....

Carers really need better supports... The health system and NDIS seems to treat relatives like employees for cost reasons, which is kinda screwed. Smiley Frustrated

At least employees get sick leave and lunch breaks!

 

That's... kinda weird.. Like even over the counter ones..? 


I hope you get in too, I think you'd be good at it!

 

Yes, it's very annoying. I've had at least one occasion of "is this my normal pain or is my knee out of place?" (it was my knee. I know this mostly because it noisily and painfully snapped back into place a few hours after)

It also means that they get into a horrible feedback loop. Like thanks to FND I couldn't use my legs. Because I couldn't use or fully feel my legs, I had to drag myself to the toilet and back. Because my joints bend in weird ways, I ended up bending my leg back to far while doing that, pulling a muscle. And because of the few days of extra pain, my FND went wild. Smiley Indifferent

 

I hope so....

I honestly feel like we need to get my pain under control before I start working on strengthening, because focusing on strength first just made everything worse..


I'm going to get one of these guys:

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(betta/ Siamese fighting fish)

They're really cute, I love them. 

People keep putting them in tiny vases and boxes though Smiley Sad

I'm definitely getting him a proper tank with enough hiding places.

I'm working on a way to get multiple layers of different depths for planting, it's so much fun!!

Re: Life Update

@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!

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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?

 


Remember you're amazing just as you are Heart