Happy Gypsy : Can I just say I'm so... - Functional Neurol...

Functional Neurological Disorder - FND Hope

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Happy Gypsy

Gypsy_67 profile image
14 Replies

Can I just say I'm so happy I found this site. I live in a tiny town in country Victoria Australia, population 2000. I am about the weirdest person here right now, but I found my peeps right here. My sister is absolutely fabulous, but it's only you folks that really understand what I'm going through. I just wanted to let everyone know how grateful I for you. I'm definitely not alone.

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Gypsy_67 profile image
Gypsy_67
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14 Replies
Lady4 profile image
Lady4

Hi Gypsy, apologises for the delayed response (device issues -just catching up) we are here for you and to support you on your recovery journey.

Gypsy_67 profile image
Gypsy_67 in reply toLady4

Thanks so much for the kind words. This is still really new & I'm pretty up & down at the moment, emotionally speaking.

Lady4 profile image
Lady4 in reply toGypsy_67

Thats understandable because its all new but you need to be kind to yourself and try and relax and have a bit of fun. I try and see it as our brains defence mode, its taking control to protect itself and as our brains and body work together, its ultimately protecting you but I don't always understand why some symptoms happen.

I get it when my son was overwhelmed (even if he wasn't consciously aware, poor interoception) and had drop attacks and also when he was in pain with thigh spasms and then the pain sensation was so intense because of intentional focus and then his legs would go numb (brain blocking signals because of over-activity).

I also know that there are OT/PTs etc that can help and if you look at Re-Active's post you will see what therapists they have suggested the neurologist refer too, so you can check that all your needs are being met.

I also believe that there are small signs before our symptoms start and if we can spot them (maybe your sister could) then thats the ideal time to add a strategy or too, to change the outcome but it takes time.

Gypsy_67 profile image
Gypsy_67 in reply toLady4

Hi Lady4. Thanks for the reply, it takes me a while to get back to people sometimes too. It doesn't mean I don't care, it's just that I'm struggling. My sister takes me to the OT, hydrotherapy, an exercise physiologist, a speech therapist, dietitian because my appetite is next to nothing & last but not least I have an upcoming appointment with a movement disorder nurse. I'm actually looking forward to that one. My source of hope is in the job title lol. In her previous life, before me, she worked in worker's compensation and getting people back to work, so all this is child's play to her. Considering my current situation she's been training for this her whole working life. Funny how thing's work out.

Lady4 profile image
Lady4 in reply toGypsy_67

Thats okay, understandable. When you feel up to it have a look a the success stories. I enjoy watching Re-Actives Instagram Posts, so follow them too, they are full of such positivity.

Maybe your sister could jump on "Littlecooks" last post, his company is trying to get him to resign. I hope you don't mind me asking but afterall you mentioned its childsplay to her 😉 and I hate HR (personal experience with a co-owner but it cost of company financially and I got a compensated).

Gypsy_67 profile image
Gypsy_67 in reply toLady4

I'd be happy to ask her. She's pretty busy with me, but I'll definitely get onto her about it. I'm in Australia and he's in the UK so I don't know if the law's correspond, but it's worth a go.

Lady4 profile image
Lady4 in reply toGypsy_67

Thanks. He is very anxious and stressed. I mentioned the Disability Act etc but maybe some generic advice to put that new Manager in their place, especially as you mention she has dealt with discrimination and compensation.

He mentioned he enjoyed visiting residents and that was a good day. So even if he can't do his normal role at the moment, I think they should consider creating a part time role which would enhance his confidence, distract him from attentional focus and overall benefit his quality of life.

Plus its a win for the company too (as it won't cost them as much) in legal fees 😉

Gypsy_67 profile image
Gypsy_67 in reply toLady4

I've chatted with her & because we're in Australia & he's in England the legislation is different so she can't help in that respect. She did say she could help with how to deal with HR effectively. She, her name is Katherine although she prefers Kath, is in Adelaide right now & the day after we have to go to Warrnambool because she broke her little finger. She didn't go to the doctor when I told her to, now she needs a specialist. By Friday I'll get her to message him as Littlecook & I are friends 😊

Lady4 profile image
Lady4 in reply toGypsy_67

Hi, sorry to hear about your sis, hope she gets it sorted. Little Cook resigned, despite us all encouraging him to stand his ground.

How are you doing?

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer

Perhaps look at: fndhope.org/about-fnd-hope/...

We have a large group in your country that can offer you help and support relevant to Australia.

Gypsy_67 profile image
Gypsy_67 in reply toEnglishIslander

Hi Englishislander. That was the 1st website I found, but they don't have peer support. There's stories of people's journeys, but you can't interact with them, but thankyou for the suggestion.

EnglishIslander profile image
EnglishIslanderFND HopeVolunteer in reply toGypsy_67

If you join the Facebook group for your country there is direct support and other members to talk with.

Gypsy_67 profile image
Gypsy_67 in reply toEnglishIslander

Up until yesterday I wasn't a social media type of person, but my sister hooked me up with Facebook and I've joined 2 groups on there. Thanks so much for the suggestion 😃

Lady4 profile image
Lady4 in reply toGypsy_67

I am not much of a Social Media fan either, it has its place but I hardly post, just comment on other people's mainly. Hope it helps.

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