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Re: New episode of illness (tw)

@Tiny_leaf  My sister had to have lots of blood tests to rule out other possibilities too. It was really traumatic for her because they couldn't get into her veins. They ended up having to use ultrasound. As far as we know, nothing serious has come up.

That's so cool how there's a neurologist who specialises in FND! It's a common reason for referrals to neurologists. My sister's neurologist is a bit strange. She used a reflex hammer on my sister's sore legs without warning, which made her scream in pain. Smiley Indifferent

I'm glad the antidepressants are helping! Smiley Happy

I wish I could help you more with finding a service, but I don't live in WA so I'm not too sure about the ones available there. I really hope you find one though! Do you think your psychologist would have any ideas? It must be so frustrating being excluded from services. Smiley Sad

Re: New episode of illness (tw)

@WheresMySquishy oof.... I'm lucky that I'm fairly easy to get blood from (one doctor actually got excited when she saw my veins Smiley Tongue)

Blood tests aren't really a big deal for me (even when one of my doctors managed to get me through a nerve, which hurts).

But when I have already low blood pressure and get at least 4 times the normal amount drawn it's not a good mix. Smiley Indifferent

I got iced chocolate out of it though!

 

And I know!!

I was actually really lucky with that; my OT used to work on a stroke ward, and because FND can cause stroke-like weakness down one side of the body she saw a lot of people with it.

So she's actually worked with that neurologist, who's apparently really knowledgeable. 

(thank you for that FND awareness thread by the way, it saved a lot of time when she found out I already knew a bit about it and didn't have to explain)

 

Your sister's neurologist should meet my rhuematologist! He decided to test my pain threshold by poking me with a pointy thing without warning. Turns out I have a normal to high pain tolerance, and a somewhat low being-suddenly-poked-with-a-sharp-object tolerance. Smiley Indifferent 

I feel like "ask before touching" should be a much more widespread thing...

(quick warning, the pointy thing lives at the end of the reflex hammer. If you see them holding it upside-down and like to have some warning, maybe ask what they're doing...)

 

I think that we have a lot of the same ones as the other states, but the most accessible ones here at least are Headspace and CAMHS. After that it's being an inpatient in hospital.

Idk what most hospitals are like, but in mine I got no counselling, no information on my treatment plan, and had my suspected diagnosis hidden from me so I'm not 100% sure about that option....

In theory CAMHS is the catch-all. It really is not a catch-all. Smiley Frustrated

Headspace will know whose criteria I fit, I'm just a little worried by the posibilities of who that might be.

Re: New episode of illness (tw)

@WheresMySquishy could you or anyone please help me figure out how to write an email to headspace at all?

I'm completely stuck and have no idea what to include....

Re: New episode of illness (tw)

Hey @Tiny_leaf 

 

It's awesome that you've managed to find an email address. 

 

Your email could go along the lines of:

 

"To Headspace, 

My name is ____. I'm emailing because I'd like to see a therapist. How do I go about booking an appointment? I struggle with talking over the phone due to _____, so if I could organise an appointment over email that would be awesome. 


Kind regards, 

- insert name-"

Let us know how you go! Heart

Re: New episode of illness (tw)

Thanks @Maddy-RO 

Should I include my diagnoses and/ or the referral form do you think..?

I don't have the social skills for stuff like this....

Re: New episode of illness (tw)

@Tiny_leaf  That blood test experience doesn't sound fun. Smiley Frustrated I have 'difficult veins' which are hard for less experienced people to get blood out of. Last time, a trainee stuffed it up. A supervisor had to finish it and I almost fainted. About five people came into the room and put a pillow underneath my legs.

I think FND and stroke can be very similar. I met someone with a stroke and someone who suddenly stopped being able to walk, which doctors couldn't explain although I wondered if it was FND because she was like my sister. Their symptoms were similar.
I'm glad that thread has helped some people. I didn't know much about FND before my sister got it and it's hard to tell people because they don't understand it. It's great that some good has come out of sharing our experience.

Ouch! That's gotta hurt! I get scared when people poke me. It's not a nice experience. Smiley Indifferent I agree with you that doctors should ask before touching. Thanks for the tip!

Those are the ones I've heard of in WA. Are you able to access any outpatient hospital programs? That might be a better option than being an inpatient considering how awful your inpatient experience was.

It's funny you should say that because I was just emailing a few enquiries about something myself. So frustrating! Smiley Frustrated I guess you could ask what you want to know from Headspace and know what you want to get out of emailing them. Do you want to make a general enquiry, or a more specific one about your situation?

Re: New episode of illness (tw)

Hey @Tiny_leaf 

 

It would make perfect sense to include those two things. You could say: 

 

 

"To Headspace, 

My name is ____. I'm emailing because I'd like to see a therapist. How do I go about booking an appointment? I struggle with talking over the phone due to _____, so if I could organise an appointment over email that would be awesome. I have a referral letter from my GP and would prefer a clinician with experience in treating -enter diagnosis- if possible, as this is something I have been diagnosed with. Thank you. 


Kind regards, 

- insert name-"

 

Hope this helps Smiley Happy I'm so proud of you for putting yourself out there and seeking help!!

Re: New episode of illness (tw)

@WheresMySquishy it wasn't.. not only did she get it through my nerve but I think also through (not just into) the vein she was using. First time I've ever had bruising after a blood test.

Ow ow ow..! My veins are very cooperative and I've never had a trainee take blood.. Do they try to give them the harder draws or something?


And yes, though obviously with very different treatments needed... 

Hmm.. maybe stroke and FND can affect similar parts of the brain? They're both brain-things, one just has an easy to find cause. Idk, it'd be interesting to find out though.

I'd just need a few uni degrees and an MRI machine..... Smiley Tongue

It actually turns out that a family friend has FND.

Mum (who was being dismissive and rude about the whole thing) suddenly became a lot less judgmental after I suggested it as a possibility. It apparently hadn't occurred to her that I might have something that I can't just push through using exercise..


And same... at least I had some idea that I would be poked, but I thought it was blunt!

Anyway, I was able to hold back the reflex to kick for long enough to process exactly what was happening and calm down, luckily for him.

 

Outpatient services here are either for people who've just been discharged from inpatient wards, or are CAMHS...

The only other one I can think of is a pretty intense program involving daily home visits, which I think would be both overkill and absolutely exhausting.

There's one more but its website seems to have been taken down for some reason.

There should be a "which organisation do I use" flowchart or something...

And..... I think I want to ask them if I'm eligible to be treated there (minus a few details...), what program I should use and what I need to do to get in.

Idk what sort of enquiry that'd be though...

Re: New episode of illness (tw)

Thanks @Maddy-RO!

That format looks really useful.

 

Not sure how I'd go finding someone with experience in what I have though.

I have a fun thing nicknamed "double depression" (two depressive disorders at once) which is less common than either of the disorders alone, and it has psychotic features which is apparently the rarest depression subtype-thingy, so finding someone who's treated it isn't that easy..

I'm never sure whether to ask for someone with experience in depression or in psychosis, especially since mine are linked so closely..

Re: New episode of illness (tw)

Hey @Tiny_leaf, speaking from my experience at Headspace, your first visit will usually be with a Youth Access Clinician (YAC), who will ask you lots of questions about what has brought you to Headspace, and that will be how they determine which professionals to link you in with. I remember we had a thread about this some time ago, which I have linked here.

 

I think perhaps a simple enquiry will be helpful. I too like @Maddy-RO's format. Smiley Happy

 

I hope this helps.