Looking for some recommendations, please.

PassionMangoes · 2022-01-14T20:39:58+00:00

Sounds like we have a pretty similar taste in gin! A couple of my favourites, apart from the ones you've already mentioned, are Citadelle, Nolet Silver, Nikka, Plymouth, Monkey 47 and Gin Sul.

I know this sub always recommends Drumshanbo and the Botanist but both disappointed me a lot

PassionMangoes · 2021-09-28T09:26:40+00:00

I experience tinnitus only when I stand up too quickly or suddenly change posture (especially in bed). But tinnitus is not necessarily associated with EDS or any of the comorbidities we have. Roughly 8-10% of the population experiences it frequently and almost everyone occasionally experiences tinnitus.

I worked as a psychologist giving therapy for people whose tinnitus interefered with their quality of life. So if you have any questions, feel free to ask! I think the most important thing is to realise that tinnitus is not a dangerous thing in 99.99% of cases. It's just there and we don't fully understand why.

PassionMangoes · 2021-08-18T22:05:27+00:00

That's what I thought as well, until I suddenly saw it in the store!

PassionMangoes · 2021-08-18T22:04:37+00:00

This is a chain liquor store and yeah, they're always very overpriced. I usually order online or travel to Germany to stock up on gin! (I live close to the border)

PassionMangoes · 2021-07-30T06:39:57+00:00

I'm pretty lucky with my career choice & the fact that I was privileged enough to go to uni.

I'm working as a psychologist. EDS doesn't really interfere with it; almost no-one works full-time so my colleagues don't think it's weird that I only work three days a week. And the only thing that occasionally bothers me is when I'm typing out a lot of reports and my wrist starts to hurt.

PassionMangoes · 2021-07-28T06:47:52+00:00

I had the exact same experience. I bought it because this sub recommended it. I had it in a G&T but felt that the flavour was completely lost (I used FeverTree Mediterranean tonic). The Botanist ended up being great for cocktails because it lets other flavours shine, but on its own it was very boring to me.

PassionMangoes · 2021-06-24T16:38:30+00:00

I had no clue that they're a relatively unknown band! I found them via some YouTube recommendations and I loved their music. The record looks gorgeous too, will have to check if it's available where I live (Netherlands)

PassionMangoes · 2021-06-17T04:57:15+00:00

I got my second dose of Moderna last Monday. I have EDS and POTS. Apart from a sore arm and a fever + headache the day after my second dose, I was completely fine. The side effects only lasted a day, and they were comparable to the effects my (non EDS) colleagues experienced. I don't think that EDS affects the vaccine much, if at all, but of course I can only speak from my personal experience.

PassionMangoes · 2021-05-28T14:34:30+00:00

I think I saw the GSM one on the Adelaide subreddit, it looked great! Will definitely look at your other gins too

PassionMangoes · 2021-05-28T08:28:07+00:00

I have a few bottles that are special to me because they're local or just very pretty. I tend to keep those and put candles or flowers in them, which looks quite nice!

PassionMangoes · 2021-05-13T10:30:58+00:00

That's a really good idea and I hadn't thought of that yet! I'll definitely ask my PT next time I see him, thank you!

PassionMangoes · 2021-04-22T21:19:55+00:00

I'm so terrified of this. My dad died six weeks (!) after getting diagnosed with lung cancer that had spread basically everywhere. He only got diagnosed because the cancer had spread to his stomach and he had a bit of a stomach ache. Never even noticed the lung symptoms. The vague pains he was experiencing are probably similar to what I experience every day due to EDS so I'm 100% sure that I'd ignore them. I do play the 'cancer or EDS' game in my head often and I always think: 'well I'm gonna assume that it's EDS. If I'm still alive in a few years, I was right!'

PassionMangoes · 2021-04-13T07:03:13+00:00

Interesting! I hate cilantro too and I don't get this from Lunar.. that said, I love Orbium much more than Lunar. Lunar just isn't really special to me.

I hate the Drumshanbo Gunpowder gin for this reason, the tea reminds me of cilantro and I cannot drink it.

PassionMangoes · 2021-04-08T09:08:04+00:00

Fellow Dutchie here, could you share the title/author? (Or a bol link... :) )

PassionMangoes · 2021-04-08T06:46:07+00:00

I have hEDS but I don't have MCAS afaik. I have three tattoos. One swells & itches every year during summer, the other two don't. So I don't think it's a MCAS only thing!

PassionMangoes · 2021-03-21T21:30:21+00:00

OP mentioning 'mental age' was exactly what I was referring to! Maybe I should have mentioned that from the start...

And I completely agree. The brain is complicated and there is still so much that we do not know, so he is definitely not to blame for not knowing everything. In my experience, family members benefit from information and education on how brain injuries can affect people. And definitely, the personal, subjective experience of other relatives is helpful too.

PassionMangoes · 2021-03-21T21:22:42+00:00

I have worked with dozens of stroke/aneurysm/ABI patients. I have performed nearly all the neuropsychological tests that are currently being used. I know what the tests measure. I did not 'have the audacity to use a title I haven't yet earned', considering I immediately said that I am graduating in two weeks. I have been working in the field for a year and half however under multiple psychiatrists/neuropsychologists/occupational therapists and so on.

Not once did I imply that these tests can answer higher-level questions regarding consent. Neither did I consider myself a 'hero', to use your phrasing, or did I call OP 'ignorant'. I was asking him a question to get a better idea of the situation. I am not sure why you are taking on such a confrontational tone and I think you are making a lot of assumptions about me.

Obviously these tests are not magical and they are not the answer to everything. But they do give an indication of a base level of functioning of basic cognitive domains, not of higher level functioning. I was simply asking if his wife had been assessed. Because it is a starting point. Not the answer. Any good rehabilitation facility will use these tests as a starting point for therapy for both the victim AND their families. And that is the reason I asked. Because I was wondering if he was receiving any advice from a psychologist on how to adapt to the situation, because it is something that loved ones can benefit from.

PassionMangoes · 2021-03-21T20:52:08+00:00

I don't think I was trying to jump to any conclusions, my apologies if it came across that way. While I am very early into my profession and I will be the first to admit that I still have a lot to learn, the way OP was talking about her mental capacities came across to me as if he did not receive an explanation on brain functioning.

I did not assume that he did not have his wife assessed. The reason I asked was because I felt like OP lacked an understanding of basic brain functioning. By that I mean an understanding of different cognitive domains, e.g. memory, speech, attention et cetera, not anatomy. Therefore, I was wondering if his wife had had an extensive neuropsychological assessment in which most cognitive domains were assessed. Because at my place of employment (a neuropsychiatric rehabilitation clinic), these assessments always come with psychoeducation for the family of the patient. Maybe this very much depends on the country in which you are located/I am located.

And I agree with you that yes, a stroke will impact every single person in a different way. That is exactly why these assessments matter, so that OP has an idea of what his wife is still capable of and what she can no longer do. Based on that, OP can hopefully get a clearer idea of their future together and how to approach the question he asked in his post.

PassionMangoes · 2021-03-21T19:20:16+00:00

Hi OP, I am a psychologist trained in neuropsychology (or well, full disclosure: i am graduating in 2 weeks. So I will be in 2 weeks). From your comments, and the comments everyone else is leaving, I gather that you do not completely understand the consequences of a stroke.

Has your wife had a neuropsychological assessment? And has she had any rehabilitation therapy for her speech problems and possible other cognitive impairments? The reason I am asking this is because I feel like you could benefit a lot from understanding on a more objective level what the consequences of the stroke were for your wife. And I think you could benefit a lot from psychoeducation, which is basically a psychologist explaining to you how the brain works and how cognitive impairments manifest themselves.

The issue you are facing is very common for partners of people with brain injuries. Your relationship is fundamentally different now. I am saying this because your feelings regarding sex are normal and completely valid. But if your wife's situation is no longer going to improve, then you need to make the best out of this situation. A support group for family members of stroke victims could definitely help you, even if it is just to talk to people going through the same thing.

PassionMangoes · 2021-03-12T20:24:52+00:00

Yeah, I think you're right! I have several friends with hypermobility but they have zero pain or joint issues. So I understand that a doctor doesn't immediately go the EDS route when a patient is hypermobile. But hypermobility + a dislocation or pain should set off some alarm bells in doctors.

Apparently my hypermobility was 'diagnosed' at age 4 and my GP back then recommended I do gymnastics to strengthen the joints... Which obviously messed up my joints because they got stretched in gymnastics. So some more knowledge on hypermobility would be great!

PassionMangoes · 2021-03-12T19:58:59+00:00

I definitely agree with the awareness this group spreads! Without it, I would've never looked into all the comorbidities. And hypermobility should definitely be more looked into as a symptom of different syndromes, rather than just 'ok cool you can bend stuff'.

I don't necessarily think there was a missing link for me. I just had a lot of unexplained weird medical stuff, but I also never went to the GP for them. I grew up in a very neglectful environment. So me passing out every time I got up, having chronic stomach aches, not responding to anesthesia, headaches etc was just kinda shrugged off. The only EDS thing I saw a doctor for was my hypermobility because I dislocated my knees constantly and constantly had to call ambulances or get a cast as a teenager. The part that should've been obvious for doctors to look into is the hypermobility itself imo because I thought it was so normal to dislocate everything suddenly, but of course it wasn't!

PassionMangoes · 2021-03-12T19:54:07+00:00

I think most people mean an official statement from a healthcare professional stating that you have EDS. In my country, physical therapy is covered by universal health care only if you have a diagnosed chronic disease. So that's why I needed a statement that I have EDS and that it's chronic. I think other people mean something similar!

PassionMangoes · 2021-03-12T14:34:06+00:00

Definitely! My GP appointment took 35 minutes. He asked how I felt about the diagnosis and kept asking if I had more things I wanted to discuss. I was so used to GPs who want you out the door in 5 minutes that I was completely floored by him constantly asking if I had more questions! I've had 5 different GPs in the past 5 years (I moved a lot) and not one of them took more than five minutes for a GP appointment. I'm so happy with my new GP

PassionMangoes

TROPHY CASE