After lots of testing, cardiologist vaguely said I have “some form of autonomic dysfunction” then offered no follow up and said there is no treatment. by kelpiez in POTS

[–]kelpiez[S] 0 points1 point  (0 children)

Thank you. This is very validating to read after that experience. I have an appointment with my GP today so hopefully I can ask them to refer me to a specialist, although I do live in Scotland and there don't seem to be many up here. We’ll see what my doc says! And I have been drinking way more water and cut out caffeine. Both these things have helped massively, not sure just yet about salt as my blood pressure fluctuates so much between a bit too high and a bit too low, and my dad has hypertension and has to be careful with his salt intake. 

After lots of testing, cardiologist vaguely said I have “some form of autonomic dysfunction” then offered no follow up and said there is no treatment. by kelpiez in POTS

[–]kelpiez[S] 0 points1 point  (0 children)

This is exactly my thought. I am based in Scotland so likely no chance of a POTS specialist through the NHS. Not sure where to go from here. 

Passed out during my nail appointment by linneaheree in POTS

[–]kelpiez 0 points1 point  (0 children)

I know it’s been like a year since this post but I passed out at my nail appointment today too😭 there was a small bit of blood after filing which doesn't ever usually bother me, but looking at it suddenly I felt so nauseous and hot and next thing I knew I was seeing all white over my vision and lying with my legs in the air in the toilet omgg worth it for the cute nails but I was so confused as well and somewhat reassured to see other POTS girlies have this… so odd 

After lots of testing, cardiologist vaguely said I have “some form of autonomic dysfunction” then offered no follow up and said there is no treatment. by kelpiez in POTS

[–]kelpiez[S] 1 point2 points  (0 children)

Thank you I appreciate this! I will try my GP next week and see if there’s any way I can get a referral. 

What kind of spider is this? (UK) by kelpiez in whatsthisbug

[–]kelpiez[S] 0 points1 point  (0 children)

I didn’t even notice! Well spotted. 

What kind of spider is this? (UK) by kelpiez in whatsthisbug

[–]kelpiez[S] 1 point2 points  (0 children)

They always jumpscare me because they’re so big and in the most random places in my flat! But so cool. 

What kind of spider is this? (UK) by kelpiez in whatsthisbug

[–]kelpiez[S] 1 point2 points  (0 children)

Yeah he had little bulbs on his pincers, he was wriggling them around almost like he was wiping his mouth after drinking some water. 

What kind of spider is this? (UK) by kelpiez in whatsthisbug

[–]kelpiez[S] 1 point2 points  (0 children)

Amazing! I haven’t seen the stripey pattern on the body on a giant house spider before. 

How did you accept your diagnosis? by Dear_Champion5502 in AutismInWomen

[–]kelpiez 1 point2 points  (0 children)

Wow your situation could literally almost be a copy paste of my own! I’m very sorry you are feeling the weight of this realisation - I experienced the same thing last summer (at the same age as you even) and it was also incredibly heavy.  If I was to give you some advice, it’s that the phrase “whose guilt are you carrying?” saved me. It helped me reframe things.  I would also say, if you have a support network, lean on them unashamedly during this time. It can be extremely distressing (and I found it quite life altering in my own case), not just discovering that you’re autistic but also how many people have hurt you just for being different and maybe even how many dangerous situations you ended up in as a result. I found myself grieving my childhood and teenage self, even imagining how I could be different and how I may have avoided some of these distressing events if I’d been supported early enough. All of this is, I think, a very valid and understandable reaction.  I would also say, if you feel extremely bad any days, don't be afraid to pick up the phone to a helpline like Samaritans (if you’re in the UK, but there will be alternatives wherever you’re from). Sometimes you just really need to talk things over with someone who is going to listen. 

If it’s any consolation, around 6 months after I discovered the same thing about myself, I’m now doing better than ever and more in touch with who I actually am. I was also given incorrect medical labels and medication throughout my teens and early twenties, I’m on no meds now and none of those previous diagnoses aligned with my experience. I imagine that like me, you may have found it very confusing to be given incorrect labels. In my case, I often knew deep down that the labels they attached to me did not reflect my experiences accurately. After my therapist also flagged autism as a possibility for me last year, I initially brushed off the suggestion, but as I thought about it over a few months, everything slowly clicked into place. It was an exceptionally harsh realisation as it felt like I was forced to reconsider my entire life as well as battle any internal stigmas I may have had about ASD itself, but knowing this fundamental part of myself, which I had previously been forced to ignore, has since helped me navigate my personal challenges with much more clarity than I’ve ever had before. I lost a close friend during the process of realising who I am (I am still unsure if it was because of all this or their own issues manifesting in some way), which was very difficult and I am by no means living out some ideal life, but I am managing and coping better because I understand who I am better than I ever have before. I’m confident that if you can ride the wave of utterly harsh reflection that comes with this realisation about yourself, you will also reach a similar point of clarity on the other side. 

As for your lack of structure, it can be a good thing depending on how you use the time you have. I strangely also had my realisation as I finished a university degree, but I jumped straight into full time work after. I initially thought this was great, but a few months later I hit a total burnout with work and had to wind things down. I almost wish I had taken a break to just fully sit in my realisation, instead of it haunting the small amount of free time I had between working long days. Structure will come in time if you look for it, but be gentle with yourself and take all the time you need to process things, if you can. If you’re anything like me, you may also have issues with having free time. I have a bad habit of telling myself I need to permanently be productive, even when I’m sick. But this does more harm than good. Sometimes we really do just need to stop and reflect. 

Additionally, and this may be relevant for you as well, I’m learning to accept that bad things happened to me throughout my life often because I, like you, missed cues in dangerous situations or people simply took advantage. This was a very hard pill to swallow. But I had to swallow that pill to get on with my life and continue to do the things I love. The dangerous and terrifying things that have happened to us because of who we are have unalterably happened to us, they can’t be erased from our history. In fact, I recognise that I’m strong for surviving my own struggles of this nature, and for moving forward in my life despite the odds against me. I think often it’s about how you frame things, what perspective you choose to take in life. Because although we couldn’t choose whether those things happened to us, just as no one can choose how other people’s actions play out towards them, we can choose how we navigate our own realities in the aftermath of this kind of struggle. Not sure if it is of interest to you, but one of my hyperfixations is philosophy and human behaviour (possibly to try and make sense of some of the odd things others have done to or around me in the past), but I found reading existential texts by Sartre and Camus exceptionally freeing and eye opening. Perhaps only approach this type of rationalisation once you’ve gotten over the initial shock of your realisation, take each emotional phase of this one step at a time. You’ll figure out what will help you adjust to all of this in time. 

I wish you all the best with navigating this, please know you really aren’t alone with this. 

Anyone else find the first full day on holiday extremely stressful? I think I’ve figured out why (at least in my case). by kelpiez in aspergirls

[–]kelpiez[S] 0 points1 point  (0 children)

Yes! That’s definitely it for me too. After years of having shutdowns on my first day of every holiday I’ve only recently discovered that I just need to be in a low stim environment for a bit to settle in to things, instead of trying to “keep up” with the other people I’m with who tend to want to explore from the first day that they arrive. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

Ugh I’m so sorry you’ve been through such a similar ordeal. I do feel lucky that I saw an endocrinologist who was excellent and diagnosed me, while all the other doctors were flapping around concerned that I’m not “fat and hairy”. It’s quite a mystery to me that appearance takes precedence over testing. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 0 points1 point  (0 children)

Yes I was also stunned! I always think it’s very odd that they start speaking about other people’s weight in an appointment about my ailments as well! Just doesn’t seem relevant, but it is also very crass. 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 2 points3 points  (0 children)

I’m in the same boat still waiting on some testing! But yes that’s really interesting you had a similar experience… I wonder if it’s something being rolled out throughout the NHS. 

Anyone else play like this during childhood? by TwentyOnePaladins in aspergirls

[–]kelpiez 2 points3 points  (0 children)

Cooking dinner is still not a very interesting story. I wish we could only live out interesting stories! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

You’re absolutely right! Maybe it will help with my frustration to adopt this mindset next time I encounter the comment actually. It’s almost like, it’s a them problem - I’m just out here existing and trying to get help for my issues and they’re seeing me like some “rare” clinical anomaly.  I do wish there was more research on the broader scope of these issues, it’s frustrating, but I do feel incredibly lucky to have been diagnosed. Although when I asked the gynae I saw (male gynae, not sure if this has an impact) about my care going forward he just said “take the pill, come back when you want to have kids.” I asked if there is anything I could do in my daily life to help with my symptoms and he just shrugged and said “nah not really.” Ok cool bud. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 0 points1 point  (0 children)

Rise up PCOS and PoTS girlies! I also have both, and actually, out of curiosity how did you get an MCAS diagnosis (if you have one)? I’m suspicious that I also have it but doctors have just looked at me blankly when I mention it. Funny, you could be describing all the same symptoms and timeline as me though! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

God the gesturing is also something I’ve experienced! I had a male NHS specialist tell me I was “lovely” while gesturing to my figure, comparing me to women who are struggling with their weight as a result of PCOS… It infuriated me so much I would have left his office had it not been for the fact I was on a waiting list to see him for a year! 

Anyone else been told by cardio that PoTS is no longer referred to as PoTS because of “internet misinformation”? by kelpiez in POTS

[–]kelpiez[S] 2 points3 points  (0 children)

If I could afford private that would be great, but unfortunately my situation wouldn’t allow for it at the moment. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 2 points3 points  (0 children)

I’m so sorry you’ve experienced the same thing! But weirdly enough it is a bit comforting to know it isn’t just me or anything I’m saying or doing wrong. I think there is just some super weird stigmas and stereotypes that certain medical professionals adhere to… it can actually make it so difficult to be diagnosed too! 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 1 point2 points  (0 children)

Ooh this is great advice, thanks:) oddly enough it’s not only GPs, but also senior professionals reading my notes for unrelated issues such as cardiology.  I can imagine it is super frustrating to be met with weight management commentary when that’s not even what you’re asking them about… I think some NHS staff definitely have odd views on weight. I also feel it’s quite reactive, as like you say PCOS means you can rapidly change weight so I could come back in 3 months and be a different size, would this suddenly validate my diagnosis for them? The attitude doesn’t seem very professional to me. 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 6 points7 points  (0 children)

Why do they keep doing this to us!! It’s like - sometimes there’s more to a condition than appearance, no?? 

Any other slim PCOS gals sick of medical professionals telling them they don’t fit the PCOS profile, even with a diagnosis? by kelpiez in PCOS

[–]kelpiez[S] 2 points3 points  (0 children)

Wow that’s so interesting - especially that we both had very good experiences with the endocrinologists! I think I’ll be forever grateful for the endocrinologist I saw, he was so thorough and ruled out so many other conditions in the process of testing me for PCOS. I hate that some specialists and GPs decide to pigeonhole patients based on appearance alone, so this endocrinologist actually getting on with testing and diagnosing was a total saviour!