A little tip when dealing with GP appointment crapsticks. The NHS is a public service and bound by the laws of the equality act 2010. Part of the act doesn't just apply to employees. When a public service is regarded, customers or patients in this case, are also considered under the act. Under the act, the NHS have a "public sector equality duty". And must show "due regard" and make "reasonable adjustments" to accommodate their service to everyone. If, due to an effect of a patient's disability (Autism for example). Either the patient cannot access their services fairly, or they cannot provide their services fairly. They will be in breach of the equality act 2010. If you cannot access their services due to difficulties faced primarily due to your protected characteristic. They must make adjustments to facilitate your access to their services. Failing to do so would be illegal on their part. What could be considered a reasonable adjustment is something as simple as booking an appointment in advance. Something they will insist they cannot and will not do. But they can. You just need to know the secret code. "Equality Act 2010" is the secret code.
It really is, and well said for putting it up. I advocate very strongly for this in workplaces for Autistic people and try to help with letting their employers know what they will do wrong. But heavily neglect myself when it comes to personal needs, such as Doctors appointments. Usually, it is because I am there because I am low and don't have the fight. But I make sure I get double appointments each time I go as an example. But I need to do more research into what else is deemed 'reasonable' for the healthcare sector. Good point 👍🏼
Can massively relate to a lot of what you said about your mate, I think it shows how much empathy you had towards him which can't be understated. I didn't end up losing my mate fortunately but he was in a coma for quite a few months and we we're sure whether he was going to come through and how he was going to be if he got through at the time. I remember going through similar stuff to what you were describing and I don't think I realised how much it was affecting me at the time. It was as if I could finally breathe for the first time in a long time once he was starting too look like he was back on the right track. Obviously not the same as what you're talking about but I can massively relate.
Hi Adam, it is tough recognising what affects us as we go through it. It's something I'm still working on trying to pay attention to. Good to hear your mate came through 👍🏻
Hi Paul, I've been looking in to private healthcare this week and spoke to someone very helpful who has sorted lots of stuff out for me. I will message you their details. I can't really afford it but for reasons like you I am going to do it even though it goes against my principles as I love the NHS and want to support it unfortunately it's been run in to the ground for too long. Time is so important when getting something diagnosed quickly and treated and unfortunately that's not happening on the NHS.
Thanks Zoe, I'll have a look. It's so expensive, and with the government doing everything they can to take every available penny off us, we don't have the potential funds left after payday! I just hope after my little uplifts in April's pay I'll have enough to even hit the bottom end of qualifying.
Thanks for this, Paul. Phantom pains have followed me around most of my life. Terrible pain in my ribs after my mom's death. Was sure it was fibromyalgia. Eventually subsided. Recurring pain in my right clavicle. No idea what that's about. Recurring stabbing pain in my left ear. So sharp it makes me shout. Go to the doctor for all of this, they never find anything wrong. "Stress" they say. Heart palpitations? "We don't know why, better get used to it."
hey paul, this is a fantastic video and the topic is so very important to talk about. I hope your getting support about your knee now , and your absolutely right the NHS is in a bad way absolutely. how is george xx
Hi Gemma, I have to wait for a musculoskeletal appointment to discuss the next step. Hopefully an operation! George is good thanks, we're just sat in a dog cafe so he can get his Pupperccino 😂
Yes major health anxiety here. I’m self diagnosed fibromyalgia and my Dr. was very good with me about it. Also knee issues, that I have suffered with for many years, copper fit knee braces and ice have been my go to, until recently, I gave up processed sugar and WOW! I lost 25 lbs and now I get knee shots every 3 months or so, mine are bone on bone and need replacement and they (dr) recommend I wait another 2 years because of my age(58). I realize your pain is different, just sharing my experience. Side note I bought one of your t-shirts and wore it out to dinner last night, and even though at first I felt like I was wearing a billboard, I felt like people were being kind to me, it was incredible. “Older & Autistic & Unfiltered” I’m very glad I that I bought it, because I didn’t see them anymore on your page. Thanks for being yourself with us!
I've given up on the medical system at this point. I've never managed to get helpful help. I've had a debilitating mystery illness for two years and unable to work. After waiting 8 months for a specialist appointment I was given a diagnosis on very flimsy evidence that didn't match my symptoms, prescribed a medication that laid me out in bed for two months and I only started to feel better after I stopped the meds. I just want to be functional again.
Sorry to hear that Suzette. The 'care' element is missing from the health service today and its a shame as its your life and it cannot be solved on a 10 minute appointment that's impossible to get in the first place. Really hope they find an answer for you.
I totally get this anxiety and overthinking thing.... I was diagnosed with ankylosing spondalitis 2 mo ago..its been exhausting in every way but most so mentally/emotionally. If u continue to have rib or side pain, back pain, fatigue...please try to see a rheumatologist or look into ankylosing spondylitis..I mean it may or may not be the case but an autoimmune disorder makes u have all sorts of symptoms. Ask for CRP test and MRI of spine and si joints. Wish u the best. I know it sucks...feeling unwell physically and having autism makes u feel extra alien. Out of control of your mind and body.
Hi Brianna, its always worth keeping names of conditions in the pocket as they can never usually find what my issue is. With different names of conditions, I can raise them for them to rule out at least. Thank you 👍🏻
Both my knees sympathise. Not only the unending pain and the racket, but can no longer hike or bike--just walking is agony. And the mental pain is real. I hope your knee gets repaired soon--you are young yet!
Hi Paul, excellent video! To totally have health anxiety! I have had it all of the my life. I always think the worst for what ever ails me. Also anxiety itself can cause all sorts of physical symptoms. Symptoms that if googled can appear to be cancer and other horrible things. Another thing I have learned is that my sensory issues make me feel pain. I have had chronic pain since I was a kid. It comes and goes but it is real pain. Also when I wake up every morning it is as if I have been in a car accident or something. Very slow to get moving. My mom used to call me "old man". I also have been tested up the wazoo for everything and there was nothing wrong. I am not sure what the answer for me on that front except to keep on moving! As for your knee you definitely need surgery to repair your meniscus. I tore mine when I was 16 as I was a gymnast and hurt it trying a triple flip of some sort. My knee used to lock up at times and then be fine. Turns out when one tears a meniscus there is a piece that can flip and lock up your knee. It can also cause pain. Needless to say I had mine repaired. And yes I was diagnosed and a week later in surgery. I am going to have to say that private insurance seems to be the way you need to go! I think national health care is the way it should be but governments need to fund it properly so everyone can get the care they need. unfortunately greed and avarice is mind set in todays society. I wish you the best in finding a quick resolution to your knee. At the very least you know what it is that is giving you trouble. Knee surgery these days is fast and has a quick recovery time.
Thanks for sharing Bryan, always helps. The morning thing hit too as I'm exactly the same! I say I feel like a log 😂 It's not just my body that needs oiling, but my brain too. Takes a while to get the engine started.
Hey Paul if you contact you local citizens advice they can help with pip forms. They usually have a specialist who can do everything for you and even if you get the lower rate its something that could help you for the privet health care. Hope it helps you out man.
Hi Matthew, I probably will have to as when I look at my expenses vs income, and the level of 'Autism consideration' cost, it's not fair. I do a ton to make myself fit in and pay my way, and get nothing in return. It needs to change I think!
I was about to say ..one word 'Fibromyalgia!' ...I still have it from several tests and unexplainable pains. I believe that many many traumas and prolonged trauma over periods of several years, then after contracting glandular fever after just giving birth 2 my 2nd son - this triggered severe pain in my groin and then muscular pain in all different parts of my body. I could write several war and peace style books on the amount of doctors appointments and anxiety ridden experiences I had had ever since! 6 years on...still suffer every Fibromyalgia symptom. Just accept now there is no cure now....💜 life is very difficilt. Oh and wondering if I am maybe an Adult that has been missed and has always had Autism. (2 Autistic boys also!) Hence coming across your video. Im watching this video at 5:30am, also insomnia!! I relate to so much of what you say. Thanks for sharing your videos x
Thank you. And the mystery of why Doctors won't diagnose Fibromyalgia goes on for me! They won't say anything else either. Just send me away hoping issues just subside.
Sadly, even though they say it's most likely what I have...they still send me away with no longterm plan answers or help...some sort of road to recovery woudl helpat least.....pain meds (Pregabilin...if i remember correctly) prescribed s while ago, left me in more of a dazed state and even worse off than I was already feeling ....so I decided against them. Get by now on trying different natural methods every now and then and literally just getting used to having pain..if that's even possible....not actually the most fulfilling or a life lived to the fullest at all..but just the way it seems it will always be x
@AdultwithAutism I really hope you end up eventually getting better support at some point than I have from any supposed medical professionals out there....your seemingly a more passionate and persistent than I am now.... there is still hope for most. I am just so dam tired and drained out to my last tether with it all now x
I just want people to get the help they need / deserve when it comes to health care. I only have the fight now as one day the energy won't be there, even to help myself.
I'm making a separate comment about you losing your best friend. What you describe is rare and precious, as was he. I lost my mom a decade ago to a terrible illness. I had talked with her weekly for years with no agenda, either. In the period of grief following her death I had many physical ailments crop up. The bottom had dropped out of my world and my health with it. Looking back, and even at the time, it was something I never imagined to have this happen.
I had 4 friends in their 40s keel over dead suddenly and then I had a single palpitation and, 6 years later, I’m still paranoid. Anxiety destroys everything. I hope you can recover. I’m an Aspie…I think anxiety is our preloaded OS.
The pain you describe - I have a similar pain in my ribs - for many years - for me, it turned out to be part of burnout recovery - and I do have fibromyalgia
its a sad fact that many doctor's don't think it's real - I am tired of arguing with the medical profession and it was only a fluke that this was diagnosed - I am unsure what we are supposed to do anymore. @@AdultwithAutism
We can only do what we can, as if we are the only ones left on Earth. No support system, nothing. We can only rebuild ourselves in our own image, follow our own rules and design, and things do get better. We just have to have that 'day one' to begin, and the space to do so. It is very tough, but the alternative can be worse 👍🏻
NHS sounds a lot like the public health "care" in Finland. You have to wait a month to see a doctor for like, 15 minutes. Different doc every time and obviously they don't have time to read your files, so you have to explain the same things all over again. And no-one takes care of test results! This mess gave me so much anxiety I finally switched to the private side, what a difference it makes! You can choose your doc, appointment times and check your results online! NO MORE PHONE CALLS, ever 😆 PS. Paul, sorry to hear about the knee, it sounds really painful and frustrating to deal with. Hope you can finally get it fixed now as the cause of pain has been found 🙌 I'm just so mad you've have had to suffer for a year with this kind of 'basic' health issue that could be treated 🙄
Yep, that's how it is in England. Different doctors each time for a limited interaction, and that is if you can get an appointment. Still exploring the private side, it's definitely what's needed for my health anxieties
I live in the US and I'm in the middle of health anxiety myself. I do have insurance but I still have to pay to visit my doctor. It's draining getting there. It's draining trying to communicate what I'm feeling. I've been looking at POTS since I've been getting dizzier getting up from sitting. It's been affecting my work (I clean for a living) and life. It's so exhausting being unwell. Hope you get the help you need for your knee soon.
another very relatable video Paul - same for me - really bad health anxiety and didn't really attach it to my autism until, well, I know about the autism - but it causes me so many problems - it not easy is it? take care
Hi Paul, blimey, yet another video by an autistic guy which is like hearing myself while looking in a mirror (even if I can't grow such a splendid beard). I could talk with you about such things for ages. I'm looking into getting an autism assessment. I'm very seriously thinking I might be autistic but haven't got the point of having a formal diagnosis. I had a torn meniscus in my knee a few years ago, and you'll feel much better when you get yours operated on I'm sure. Getting doctors to listen. Now, there's a good ranting subject, one of my favorites in fact. And yes, worrying about health issues. I've been on a bit of a rollercoaster as far as health in the family is concerned for the last few years. And luckily here in France the health service is pretty effective when you need something and for a few years now we've been needing things. Here's probably not the place for me to have a rant about my own health issues or those of my family members. But I hear you load and clear and if we met up we could share a good old yarn or two about health anxiety and healthcare, interactions with doctors and secretaries. And using the dreaded phone too! There are so many things that I thought were "just me" but watching and listening to folks like you and a load of the other youtube channels about adult autism, and reading a large pile of books, and reserarching on the Internet etc has made me see that there's a whole bunch of people who see to be like me in many ways. Thank you for making your random videos and putting them on the Internet so folks can have a look if they fancy. It's helpful, and appreciated. Hope you get your knee sorted out soon, if it feels like mine did, I bet it's a real pain in the arse, but in your knee 🙂 Matthew
Hi Matthew, glad you like the videos...and beard of course! The beard enjoys a compliment. My meniscus unfortunately exploded, I don't have one anymore. So the only operation available is a high tibial osteotomy...so a titanium plate on my leg with screws to take the pressure off my knee. Not fun! I hope you persue the Autism diagnosis, for curiosity if nothing else!
@@AdultwithAutism Hi Paul, crikey, sounds like a sort of partial knee joint replacement, just with the lower half instead of the bottom of the femur as well. The NHS really doesn't help itself by leaving things like this for so long they get so much worse and complicated (and expensive) to fix do they? I don't know what the solution is though. Seems such a shame the governments over the last few decades have let it slip into such a bad state. The health service here in France is starting to struggle too, but is clearly in better shape than the NHS is at the moment. Everyone here is supposed to have a top-up private health insurance - the state reimbourses part of the treatment cost and the insurance policy the rest. Social security payments (the equivalent of NI contributions) here are wildly more than in the UK. I couldn't believe it when we first arrived. But I guess that's one of the reasons why the health service here is holding up better than the NHS in the UK. I hope you've actually got a plan in place for getting your knee operated on in the near future. What I'm looking for in a formal autism diagnosis is the confidence to own the label, to say yes, this really is me. Where I'm at at the moment is thinking very strongly, this is (probably) me, I see myself and hear myself when I'm watching youtube videos from loads of different autistic adults, I've read a pile of books written by and also about autistic people. It rings very true, like none of the other things I've been reasearching about (bipolar disorder, borderline, schizophrenia, CPTSD etc). I need to own my identity, accept who I erally am. I also need to help my son find out if he is also autistic - my wife and I, now we know what autism is, think it's fairly clear he is. But I feel it's not fair of me to tell him he is and help him to accept that, if in fact he isn't. So, I'm trying to start the ball rolling for both of us to get assessed. Sounds like there's a waiting list of about 2 years here. Mental health services here are pretty lousy compared to other specialities. Anyway, thank you for replying to my message. It's nice to actually be able to have an exchage with the superstar behind the videos. I've been meaning to start a youtube channel for ages. And I'm learning about music composition too. One day I'll have some music to share with the world too. Well done for taking the plunge and putting your work on t'internet, it's great to hear your music. The world needs more music I think. If people spent more time making and sharing music the world would be a better place for it. Have a nice evening, Matthew.
I fully understand needing to 'own' the label. If I hadn't been diagnosed professionally, there is no way I would fully accept it. Definitely start a YT channel, it is a good outlet. Helps give your thoughts words and that has been useful to me through the time too. I have never had a music lesson in my life. I cannot read it and don't know anything about it! I just like making a noise! But I fully agree, the world needs to realise showing off impresses nobody, so relax. Enjoy yourself where you can, and take a day off from yourself. They might enjoy it!
@@AdultwithAutism For me it's not a question of resistance towards the notion of being autistic. It feels very right. But, as you've said in some of your videos, just because it feels right doesn't mean I'm right, and if I'm wrong, it would be better to know what the "right answer" is. It's a sort of seesaw in my mind. One day I'm thinking yes, I'm just going to be self-ldentifies as being autistic, (or having autism ;-) ), stuff what other people might say and those who will tell me I'm not. Since a formal diagnosis won't make a whole lot of difference to me in practical terms is it really worth it. Then the seesaw flips the other way and I take on board the viewpoint that who am I to know myself and understand what autism is well enough to recognise it in myself, that it's arrogant of me to believe that I am capeable of making such a decision and being right. That just because it feels right doesn't mean it is and in any case, I'm the one with "problem" so how can I expect to be able to be objective enough to see that "problem" for what it is? It feels like what I think I understand autism is from the inside, taking into account what research I've done to find out what that actually means. And the seesaw keeps being pushed up and down by other issues too - a lack of confidence in doctors because of a number of issues in the past (and present) with health issues. Why would I give a "them" final say over something as huge as who am I, when their colleagues have brushed other things under the carpet which really shoud not have been? I guess the solution is to find a doctor who understands autism and in whom I can place my trust. Apparently not an easy find, such a doctor. But if I don't, the seesaw won't stop going up and down. I have lots of seesaws inside my head (I've just come up with that analogy and now it feels like there's a kiddies playground inside my head. Roundabouts too - thoughts which go round and round and keep coming back to the starting point. I need to be the adult watching the scene, taking the time to understand what's going on and making as objective a judgement as possible. Are you interested in psychology? I love the imagery of the IFS (Internal Family Systems) model. But that's a bit of a digression too far for this message. Another time perhaps. On the music subject, I just received an e-mail from the online teaching organisation I'm learning a lot of stuf from and they have a promotion on at the moment for a couple of short online courses on music theory and writing music. If you have any interest at all in learning some music theory to see how it could help you with you writing, I'd recommend checking them out. No commission for me, just a friendly suggestion since the e-mail just arrived and you'd mentionned not knowing anything about music theory. For me personally learning the theory behind what I've been donig for a long time unlocked a lot of blockages and made music even more fun. Have a look at thinkspace.ac.uk and click on the yellow banner at the top talking about a bundle offer. I've done the learning music theory course and learned a lot. Still re-reading your last paragraph trying to understand what you meant. Lots of different ways to read that, both on the lines and between them. I wonder if there's at least a chapter of a book condensed into a cryptic few short sentances in there? There are certainly a number of phrases which trigger issues in me which I'm starting to realise (have been realising for months, not just today) have been bigger than I thought they were. What's showing off? Is one question I'm grappling with - is it showing off to actually work at becoming good at something and then sharing your work with other people? Is playing music so anyone other than yourself can hear showing off? There are certainly people in my past who would have said so. Take a day off from myself. There again, that could mean all sorts of things. Question for you - how do you view this communication space? What's the function of the comments section under your videos? What sort of interaction do you want with the people who might leave comments? Does it need to be very short and quick like other social media? I'm pretty bad at short and quick. If I've got something to say it takes a while, and if someone else has got something interesting to say I like to delve into it properly too. But I'm not used to actually having dialogue with folk in the comments and I wonder if I'm doing it right or if this isn't the place for what feels more like real communication to me? Anyway, have a nice weekend and have a look at thinkspace for music learning. There are of course lots of other online music learning plateforms too, but thinkspace is one of them I use.There's also truefire which has loads of guitar learning stuff, and "Scott's bass lessons" which is clearly biased towards the bass. Must stop now before I really go on too much.
And Paul, if you'd rather I stopped writing, please just say so🙂. Receiving a reply feels great and gives the impression that the other person wants to interact. But I do often take that as a cue to write more and ask more questions. Which feels great, for me. But experience has shown that there aren't many people who like that and would rather I didn't write lots and hope they do the same. From my point of view, it feels better to be told directly that you don't want to have involved dialogue, rather than just to stop replying and hope I get the message. My roundabouts love that though - round and round and round wondernig what happened and why the person hasn't replied and what I might have said to upset them without realising. At least now I can stand back and see what's going on in my head - I can see the roundabouts without having to be sitting on them getting dizzy. So I can now ask that if the other peson in the conversation doesn't want to continue with it, please woudl they just say so. It won't stop the roundabouts, they will still go around wondering why. There are why roundabouts which have been spinning around in my mind for decades. Again, another digression topic - how to deal with the why?; or what happened there? questions from situations in the past. I'm doing it again, I'm getting carried away thinking I'm typing to soeone who might want tor read what I'm typing and understand what I'm going on about. Maybe, maybe not. I guess that's what you mean about your YT channel providing you with an outlet. You record random videos about how your head works and stick em on the internet in case someone wants to watch them. Have a nice day!
Wow, I didn't realize general Healthcare in the UK was that bad. Don't be too jealous of those of us in the states though, since they have effectively tied our insurance to work and not all doctors are in all networks changing jobs might mean being forced to change doctors. Plus loosing the job means losing all Healthcare. I think it's a mess everywhere really.
I think it must be. UK health care is a disaster. I've now been seen about my knee, and have to wait yet another 6 months to see the next person. I'll be dead by the time I get seen about it.
you and me both. I've had health anxiety issues since I lost half my body weight, unable to keep food in my system. Seasonal insomnia (3 hours sleep and 21 hours awake for 2 months). Started being unable to hold anything in my left hand, asked Doc at the physical. they put in a neurologist... 6 months later, halfway there I developed migraines with temporary vision loss, the neurologist saw me for a few minutes at the appointment day and scheduled a single test for the tremors in 2 months later, and I'm to wait 2 more months for the follow up visit before they will even talk about the migraine with vision loss episodes. and it'll cost few hundred dollars after insurance covers 80% of all this, in the great old USof A. here's hoping it's not a brain tumor, ALS, Parkonsins, or MS.
I cant make doctor appointments either. My doctor now makes me monthly appointments. I have had 2 appointments now, with the same doctor, and my health is already improving. I'm in Scotland.
Hi I have had fibromyalgia for 20 years. The muscular skeletal people press each joint elbows knees etc. I didnt know both sides hurt till they squeezed them in the early days. I feel them now though. Avoided the meds after a few years. They were terrible. Sleep trouble and widespread joint pain. Muscles and limbs, shoulders joints knees, wrists, elbow s ankles, even my finger joints hurt with repetitive movements sometimes. Organs can hurt too as muscular skeletal. Anyway shifted changed doctors and the knext one was not good had so much trouble getting listened to. They do the appointments like yours too. They put me in a tail spin. They didnt find the 2 hips replacements I needed through the decade with them. They thought it was the fibromyalgia. A replacement temp doc there found the problem. Just changed to the doctor who found that. Hope he can look at my back as other Doc said cant replace your back and dismissed it. Private health care insurance is a good way to go. Speeds it up as the waiting is not cool at all. All the best.🤗
Sounds a rough ride! I have a bad right hip from time to time...no idea why?! But I do need the private healthcare, just to be listened to. My Doctor just thinks I am out of my mind.
I've always had health anxieties, and I believe part of this is that I have much, much more sensitivity to my own internal states and balance of health and sickness. It's both a gift and a curse. From what I've gleaned re autism, those of us with autism are much more likely to have certain conditions. Autoimmune disorders are one, allergies, food sensitivities, migraines are others, fibromyalgia may be one, too, though I'm not sure. There are others I don't remember. I've been officially diagnosed with many, but only after years of trying. I'm in the US and my MD at a very top medical facilities has missed many of these things, or not offered any treatment. He's one of their best docs and I like him, but he mainly follows the diagnostic manual and "evidence based treatment" models and they are usually ineffective for many the things I mentioned, some of which I've had. Those conventional models are best for certain kinds of illnesses, the ones that will kill you right away, or the ones that there are specific treatments for. Some others can seem invisible to the system. I've had better luck in the U.S., than you in the UK, which is utterly dreadful (!), but have the best luck with a functional medicine doctor who did different kinds of tests and treatments. Many of these are out-of-pocket since the insurance won't pay for most of them. The most effective treatments I've had aren't paid under my plan. It don't have much extra in financial resources each month, but my health is at the top of the list. The insurance industry not paying for prevention or alternative things in the US is well known. Still much better here than you, but lots of problems. This Dr (functional) works with diet and some supplements and I've found better health through these things. Docs like him are rare as hen's teeth and people are taught not to trust supplements since the advertising of drugs is such big business in the US (such advertising is illegal in most countries). Side note: Some of the supplements he has recommended are similar to some those by Dr. Berg on his youtube videos. At the same time, changing diet is usually not too expensive or even money saving depending on previous habits. (Dr. Berg can seem to much "hype" but some things he recommends my Dr did as well, with no hype). Since alternative medicine is one of my "special interests" I've had good luck with this. I research each supplement thoroughly for side effects, interactions before I take it. I consult with my functional med Dr but also do my own research. Of course each person is unique so what works for me may not work for everyone. Also, the supplements aren't cheap. Changes in diet are much more affordable and I believe more important. But which ones? Most recently I did intermittent fasting following a book by Dr Jason Fung and no longer eat a high carb diet. I started eliminating bad carbs by following the Bright Line diet then transitioned to the "timed eating" or intermittent fasting of Fung. I now have no cravings for sugar or carbs anymore, which was lifelong, but the transition was uncomfortable. The diet I eat is all from scratch and very inconvenient. No prepared foods, never fast foods. Luckily, social eating is something I avoid anyway, so no loss there. This evolved over the course of a year, I didn't do it overnight. This appears to have cut down a lot on inflammation/pain, for one thing. Also, I lost quite a bit of extra weight and am now kind of skinny. This has improved my health like nothing else and I'm decades older than you. I no longer take 2 blood pressure medicines, for instance. I consulted with my Functional Dr and experimented by taking daily BP readings. My readings are better than 30 years ago, always in the good zone. I wouldn't suddenly stop such drugs ever, but it worked well. I have nowhere near the pain I once had, though my back and knee are still a problem. Less constant than before, though. Maybe being skinny helped some of that, or maybe less inflammation or both. Progress. Again, I'm not saying any specific thing here is right for any individual. What I am saying is that medicine as a whole has problems and I've listened to my body and found some solutions. I've informed my functional medicine Dr about these, or he has suggested them. It has taken time, but the "gift and curse" of being more attuned to my body's health/illness which sometimes goes with autism is part of the picture for me.
That was very interesting. I like how you pat attention to yourself and how you respond over what others may tell you. You will always be your best judge when it comes to hoe you feel. I've tried many diets and eating trends. Nowhere near to what you have done though. But I can genuinely say the only things that have worked for me was the carnivore diet, and intermittent fasting. The carnivore diet due to the missing carbs stopped my hunger, and always made me feel more alert. The intermittent fasting did well for my sleep and mental clarity. Everything else I've tried either had no effect or was detrimental. The problem with both intermittent fasting and the carnivore diet for me is either finance for the meat, or time restrictions due to travelling and working for the intermittent. I will be back to intermittent one day, I actually miss it.
@@AdultwithAutism I hear you about the problems with travel and cost for IF and carnivore. Though I don't have a carnivore diet, the low carb high fat diet is expensive enough (lots of veggies fill in and I sometimes grow some of my own on my deck in containers, it's a whole other special interest). I hope you can get back to it when it works out to do that.
Hi Paul I can relate of how your feeling with health issues the doctors don't know how we live with health anxiety try claiming pip so then it will allow you to help support your needs as nhs doesn't offer any kind of help around autism im facing similar issues myself but it's so draining having to keep up with everything I'm sure things will improve for you.
Hi Danny. I do need to look into PIP, as the more I notice about what I do on default to make sure everything else and everyone else is okay, I suffer for it. It's to a point now where I need to accept that it's something I need to look into 👍🏻
Halo! I would take this with a pinch of salt, but is it possible some of the sporadic pains you have are linked to psychological issues like depression or anxiety? And that’s pretty sad about the healthcare system there. :( Also, I was wondering where that sweater is from, I think my dad has the same one
They could well be, who knows? The doctors give 9 minute appointments...and that's if you can get one. So there is never time to talk or try and figure out what is wrong. So all the aches, pains, problems go unchecked. The top is a long sleeve Carharrt workwear T Shirt. I like them as they're relaxed fit, so fit well 👍🏻
Omg I had same thing with no outcome either? And I woke up during my thingy Yes yes I actually later got double diagnosis of fibromyalgia and hypermobility spectrum
@AdultwithAutism It was really hard for me to get Dx with fibromyalgia. I had to do a lot of my own research, print out the studies, and actually bring them to my Dr. In doing that research, I found that diet can help alleviate the intensity of the symptoms. I have found much success with starting a carnivore diet for 3 months to eliminate all the inflammation in my system, like an elimination diet. Then, slowly add veggies and such back in slowly to see if I have reactions to it. I was Dx asd earlier this year, and I'm 43. I have noticed that the carnivore diet has also helped me with the amount of anxiety I feel. I understand everyone is different, but this has really helped my fibromyalgia and anxiety. Cheers, mate. Hope it helps if you try
I found the foam roller ineffective. I started with a foam roller as I didn't want to leave a mark on the GP receptionist's head. I had to move up to a didgeridoo. That helped a alot.
![Noob To Max With DRAGON REWORK In Blox Fruits [FULL MOVIE]](http://i.ytimg.com/vi/LnBMOinoOvA/mqdefault.jpg)
A little tip when dealing with GP appointment crapsticks.
The NHS is a public service and bound by the laws of the equality act 2010. Part of the act doesn't just apply to employees. When a public service is regarded, customers or patients in this case, are also considered under the act.
Under the act, the NHS have a "public sector equality duty". And must show "due regard" and make "reasonable adjustments" to accommodate their service to everyone.
If, due to an effect of a patient's disability (Autism for example). Either the patient cannot access their services fairly, or they cannot provide their services fairly. They will be in breach of the equality act 2010.
If you cannot access their services due to difficulties faced primarily due to your protected characteristic. They must make adjustments to facilitate your access to their services. Failing to do so would be illegal on their part.
What could be considered a reasonable adjustment is something as simple as booking an appointment in advance. Something they will insist they cannot and will not do. But they can. You just need to know the secret code.
"Equality Act 2010" is the secret code.
It really is, and well said for putting it up.
I advocate very strongly for this in workplaces for Autistic people and try to help with letting their employers know what they will do wrong. But heavily neglect myself when it comes to personal needs, such as Doctors appointments. Usually, it is because I am there because I am low and don't have the fight. But I make sure I get double appointments each time I go as an example. But I need to do more research into what else is deemed 'reasonable' for the healthcare sector. Good point 👍🏼
@@AdultwithAutism I am the same. Can make appointments and phone calls for other people, but not for myself. Frustrating.
Can massively relate to a lot of what you said about your mate, I think it shows how much empathy you had towards him which can't be understated.
I didn't end up losing my mate fortunately but he was in a coma for quite a few months and we we're sure whether he was going to come through and how he was going to be if he got through at the time. I remember going through similar stuff to what you were describing and I don't think I realised how much it was affecting me at the time. It was as if I could finally breathe for the first time in a long time once he was starting too look like he was back on the right track. Obviously not the same as what you're talking about but I can massively relate.
Hi Adam, it is tough recognising what affects us as we go through it. It's something I'm still working on trying to pay attention to.
Good to hear your mate came through 👍🏻
Hi Paul, I've been looking in to private healthcare this week and spoke to someone very helpful who has sorted lots of stuff out for me. I will message you their details. I can't really afford it but for reasons like you I am going to do it even though it goes against my principles as I love the NHS and want to support it unfortunately it's been run in to the ground for too long. Time is so important when getting something diagnosed quickly and treated and unfortunately that's not happening on the NHS.
Thanks Zoe, I'll have a look. It's so expensive, and with the government doing everything they can to take every available penny off us, we don't have the potential funds left after payday!
I just hope after my little uplifts in April's pay I'll have enough to even hit the bottom end of qualifying.
I haven't had a physical in years because of THE PHONE CALLS. Even when I squeak I'm not believed. Very relatable.
Thanks for this, Paul. Phantom pains have followed me around most of my life.
Terrible pain in my ribs after my mom's death. Was sure it was fibromyalgia. Eventually subsided.
Recurring pain in my right clavicle. No idea what that's about.
Recurring stabbing pain in my left ear. So sharp it makes me shout.
Go to the doctor for all of this, they never find anything wrong. "Stress" they say.
Heart palpitations? "We don't know why, better get used to it."
hey paul, this is a fantastic video and the topic is so very important to talk about. I hope your getting support about your knee now , and your absolutely right the NHS is in a bad way absolutely. how is george xx
Hi Gemma, I have to wait for a musculoskeletal appointment to discuss the next step. Hopefully an operation! George is good thanks, we're just sat in a dog cafe so he can get his Pupperccino 😂
Yes major health anxiety here. I’m self diagnosed fibromyalgia and my Dr. was very good with me about it.
Also knee issues, that I have suffered with for many years, copper fit knee braces and ice have been my go to, until recently, I gave up processed sugar and WOW! I lost 25 lbs and now I get knee shots every 3 months or so, mine are bone on bone and need replacement and they (dr) recommend I wait another 2 years because of my age(58). I realize your pain is different, just sharing my experience.
Side note I bought one of your t-shirts and wore it out to dinner last night, and even though at first I felt like I was wearing a billboard, I felt like people were being kind to me, it was incredible. “Older & Autistic & Unfiltered” I’m very glad I
that I bought it, because I didn’t see them anymore on your page. Thanks for being yourself with us!
Thanks for your support 👍🏻
I've given up on the medical system at this point. I've never managed to get helpful help. I've had a debilitating mystery illness for two years and unable to work. After waiting 8 months for a specialist appointment I was given a diagnosis on very flimsy evidence that didn't match my symptoms, prescribed a medication that laid me out in bed for two months and I only started to feel better after I stopped the meds. I just want to be functional again.
Sorry to hear that Suzette. The 'care' element is missing from the health service today and its a shame as its your life and it cannot be solved on a 10 minute appointment that's impossible to get in the first place.
Really hope they find an answer for you.
I totally get this anxiety and overthinking thing.... I was diagnosed with ankylosing spondalitis 2 mo ago..its been exhausting in every way but most so mentally/emotionally.
If u continue to have rib or side pain, back pain, fatigue...please try to see a rheumatologist or look into ankylosing spondylitis..I mean it may or may not be the case but an autoimmune disorder makes u have all sorts of symptoms. Ask for CRP test and MRI of spine and si joints. Wish u the best. I know it sucks...feeling unwell physically and having autism makes u feel extra alien. Out of control of your mind and body.
Check out NASS (UK) youtube
Hi Brianna, its always worth keeping names of conditions in the pocket as they can never usually find what my issue is. With different names of conditions, I can raise them for them to rule out at least. Thank you 👍🏻
Both my knees sympathise. Not only the unending pain and the racket, but can no longer hike or bike--just walking is agony. And the mental pain is real. I hope your knee gets repaired soon--you are young yet!
Supposed to have an op this year, but I am not confident it'll happen 👍🏻
Hey Paul I'm sorry to hear you're dealing with this. Hope you have a peaceful weekend!
Thanks Whitney, you too 👍🏻
Hi Paul, excellent video! To totally have health anxiety! I have had it all of the my life. I always think the worst for what ever ails me. Also anxiety itself can cause all sorts of physical symptoms. Symptoms that if googled can appear to be cancer and other horrible things. Another thing I have learned is that my sensory issues make me feel pain. I have had chronic pain since I was a kid. It comes and goes but it is real pain. Also when I wake up every morning it is as if I have been in a car accident or something. Very slow to get moving. My mom used to call me "old man". I also have been tested up the wazoo for everything and there was nothing wrong. I am not sure what the answer for me on that front except to keep on moving!
As for your knee you definitely need surgery to repair your meniscus. I tore mine when I was 16 as I was a gymnast and hurt it trying a triple flip of some sort. My knee used to lock up at times and then be fine. Turns out when one tears a meniscus there is a piece that can flip and lock up your knee. It can also cause pain. Needless to say I had mine repaired. And yes I was diagnosed and a week later in surgery. I am going to have to say that private insurance seems to be the way you need to go! I think national health care is the way it should be but governments need to fund it properly so everyone can get the care they need. unfortunately greed and avarice is mind set in todays society.
I wish you the best in finding a quick resolution to your knee. At the very least you know what it is that is giving you trouble. Knee surgery these days is fast and has a quick recovery time.
Thanks for sharing Bryan, always helps. The morning thing hit too as I'm exactly the same! I say I feel like a log 😂
It's not just my body that needs oiling, but my brain too. Takes a while to get the engine started.
Hey Paul if you contact you local citizens advice they can help with pip forms. They usually have a specialist who can do everything for you and even if you get the lower rate its something that could help you for the privet health care.
Hope it helps you out man.
Hi Matthew, I probably will have to as when I look at my expenses vs income, and the level of 'Autism consideration' cost, it's not fair. I do a ton to make myself fit in and pay my way, and get nothing in return. It needs to change I think!
I was about to say ..one word 'Fibromyalgia!' ...I still have it from several tests and unexplainable pains.
I believe that many many traumas and prolonged trauma over periods of several years, then after contracting glandular fever after just giving birth 2 my 2nd son - this triggered severe pain in my groin and then muscular pain in all different parts of my body.
I could write several war and peace style books on the amount of doctors appointments and anxiety ridden experiences I had had ever since! 6 years on...still suffer every Fibromyalgia symptom. Just accept now there is no cure now....💜 life is very difficilt.
Oh and wondering if I am maybe an Adult that has been missed and has always had Autism.
(2 Autistic boys also!)
Hence coming across your video.
Im watching this video at 5:30am, also insomnia!!
I relate to so much of what you say.
Thanks for sharing your videos x
Thank you. And the mystery of why Doctors won't diagnose Fibromyalgia goes on for me! They won't say anything else either. Just send me away hoping issues just subside.
Sadly, even though they say it's most likely what I have...they still send me away with no longterm plan answers or help...some sort of road to recovery woudl helpat least.....pain meds (Pregabilin...if i remember correctly) prescribed s while ago, left me in more of a dazed state and even worse off than I was already feeling ....so I decided against them.
Get by now on trying different natural methods every now and then and literally just getting used to having pain..if that's even possible....not actually the most fulfilling or a life lived to the fullest at all..but just the way it seems it will always be x
@AdultwithAutism I really hope you end up eventually getting better support at some point than I have from any supposed medical professionals out there....your seemingly a more passionate and persistent than I am now.... there is still hope for most.
I am just so dam tired and drained out to my last tether with it all now x
I just want people to get the help they need / deserve when it comes to health care. I only have the fight now as one day the energy won't be there, even to help myself.
I'm making a separate comment about you losing your best friend. What you describe is rare and precious, as was he. I lost my mom a decade ago to a terrible illness. I had talked with her weekly for years with no agenda, either. In the period of grief following her death I had many physical ailments crop up. The bottom had dropped out of my world and my health with it. Looking back, and even at the time, it was something I never imagined to have this happen.
Sorry to hear that, I know the feeling you talk of. It's not good to go through.
I hope you have gotten some care since this video and are doing better. I know the plight of symptom chasing on Google all too well.
I had 4 friends in their 40s keel over dead suddenly and then I had a single palpitation and, 6 years later, I’m still paranoid.
Anxiety destroys everything. I hope you can recover.
I’m an Aspie…I think anxiety is our preloaded OS.
Oh man I'm so glad I've seen this video of yours. I have this dull side pain/discomfort for almost 2 years now. It's on my right side under my ribs.
I appreciate and completely relate to your rant. You are saying everything I think and wish I was brave enought to say online!
The truth matters...even if my truths are moans, sulks and rants 😂
The pain you describe - I have a similar pain in my ribs - for many years - for me, it turned out to be part of burnout recovery - and I do have fibromyalgia
My Doctor won't listen to the Fibro argument as he doesn't believe it's real. Very frustrating when I have a mountain of unexplained pain 👍🏻
its a sad fact that many doctor's don't think it's real - I am tired of arguing with the medical profession and it was only a fluke that this was diagnosed - I am unsure what we are supposed to do anymore. @@AdultwithAutism
We can only do what we can, as if we are the only ones left on Earth. No support system, nothing. We can only rebuild ourselves in our own image, follow our own rules and design, and things do get better. We just have to have that 'day one' to begin, and the space to do so. It is very tough, but the alternative can be worse 👍🏻
@@AdultwithAutism absolutely
NHS sounds a lot like the public health "care" in Finland. You have to wait a month to see a doctor for like, 15 minutes. Different doc every time and obviously they don't have time to read your files, so you have to explain the same things all over again. And no-one takes care of test results!
This mess gave me so much anxiety I finally switched to the private side, what a difference it makes! You can choose your doc, appointment times and check your results online! NO MORE PHONE CALLS, ever 😆
PS. Paul, sorry to hear about the knee, it sounds really painful and frustrating to deal with. Hope you can finally get it fixed now as the cause of pain has been found 🙌
I'm just so mad you've have had to suffer for a year with this kind of 'basic' health issue that could be treated 🙄
Yep, that's how it is in England. Different doctors each time for a limited interaction, and that is if you can get an appointment.
Still exploring the private side, it's definitely what's needed for my health anxieties
I live in the US and I'm in the middle of health anxiety myself. I do have insurance but I still have to pay to visit my doctor. It's draining getting there. It's draining trying to communicate what I'm feeling. I've been looking at POTS since I've been getting dizzier getting up from sitting. It's been affecting my work (I clean for a living) and life. It's so exhausting being unwell. Hope you get the help you need for your knee soon.
Thank you. I hope you can recover sooner than later 👍🏻
another very relatable video Paul - same for me - really bad health anxiety and didn't really attach it to my autism until, well, I know about the autism - but it causes me so many problems - it not easy is it? take care
👍🏻
Hi Paul, blimey, yet another video by an autistic guy which is like hearing myself while looking in a mirror (even if I can't grow such a splendid beard). I could talk with you about such things for ages. I'm looking into getting an autism assessment. I'm very seriously thinking I might be autistic but haven't got the point of having a formal diagnosis. I had a torn meniscus in my knee a few years ago, and you'll feel much better when you get yours operated on I'm sure. Getting doctors to listen. Now, there's a good ranting subject, one of my favorites in fact. And yes, worrying about health issues. I've been on a bit of a rollercoaster as far as health in the family is concerned for the last few years. And luckily here in France the health service is pretty effective when you need something and for a few years now we've been needing things. Here's probably not the place for me to have a rant about my own health issues or those of my family members. But I hear you load and clear and if we met up we could share a good old yarn or two about health anxiety and healthcare, interactions with doctors and secretaries. And using the dreaded phone too! There are so many things that I thought were "just me" but watching and listening to folks like you and a load of the other youtube channels about adult autism, and reading a large pile of books, and reserarching on the Internet etc has made me see that there's a whole bunch of people who see to be like me in many ways. Thank you for making your random videos and putting them on the Internet so folks can have a look if they fancy. It's helpful, and appreciated. Hope you get your knee sorted out soon, if it feels like mine did, I bet it's a real pain in the arse, but in your knee 🙂 Matthew
Hi Matthew, glad you like the videos...and beard of course! The beard enjoys a compliment.
My meniscus unfortunately exploded, I don't have one anymore. So the only operation available is a high tibial osteotomy...so a titanium plate on my leg with screws to take the pressure off my knee. Not fun!
I hope you persue the Autism diagnosis, for curiosity if nothing else!
@@AdultwithAutism Hi Paul, crikey, sounds like a sort of partial knee joint replacement, just with the lower half instead of the bottom of the femur as well. The NHS really doesn't help itself by leaving things like this for so long they get so much worse and complicated (and expensive) to fix do they?
I don't know what the solution is though. Seems such a shame the governments over the last few decades have let it slip into such a bad state.
The health service here in France is starting to struggle too, but is clearly in better shape than the NHS is at the moment.
Everyone here is supposed to have a top-up private health insurance - the state reimbourses part of the treatment cost and the insurance policy the rest.
Social security payments (the equivalent of NI contributions) here are wildly more than in the UK. I couldn't believe it when we first arrived. But I guess that's one of the reasons why the health service here is holding up better than the NHS in the UK.
I hope you've actually got a plan in place for getting your knee operated on in the near future.
What I'm looking for in a formal autism diagnosis is the confidence to own the label, to say yes, this really is me. Where I'm at at the moment is thinking very strongly, this is (probably) me, I see myself and hear myself when I'm watching youtube videos from loads of different autistic adults, I've read a pile of books written by and also about autistic people. It rings very true, like none of the other things I've been reasearching about (bipolar disorder, borderline, schizophrenia, CPTSD etc). I need to own my identity, accept who I erally am. I also need to help my son find out if he is also autistic - my wife and I, now we know what autism is, think it's fairly clear he is. But I feel it's not fair of me to tell him he is and help him to accept that, if in fact he isn't. So, I'm trying to start the ball rolling for both of us to get assessed. Sounds like there's a waiting list of about 2 years here.
Mental health services here are pretty lousy compared to other specialities.
Anyway, thank you for replying to my message. It's nice to actually be able to have an exchage with the superstar behind the videos.
I've been meaning to start a youtube channel for ages. And I'm learning about music composition too. One day I'll have some music to share with the world too. Well done for taking the plunge and putting your work on t'internet, it's great to hear your music. The world needs more music I think. If people spent more time making and sharing music the world would be a better place for it.
Have a nice evening, Matthew.
I fully understand needing to 'own' the label. If I hadn't been diagnosed professionally, there is no way I would fully accept it.
Definitely start a YT channel, it is a good outlet. Helps give your thoughts words and that has been useful to me through the time too.
I have never had a music lesson in my life. I cannot read it and don't know anything about it! I just like making a noise! But I fully agree, the world needs to realise showing off impresses nobody, so relax. Enjoy yourself where you can, and take a day off from yourself. They might enjoy it!
@@AdultwithAutism For me it's not a question of resistance towards the notion of being autistic. It feels very right. But, as you've said in some of your videos, just because it feels right doesn't mean I'm right, and if I'm wrong, it would be better to know what the "right answer" is. It's a sort of seesaw in my mind. One day I'm thinking yes, I'm just going to be self-ldentifies as being autistic, (or having autism ;-) ), stuff what other people might say and those who will tell me I'm not. Since a formal diagnosis won't make a whole lot of difference to me in practical terms is it really worth it. Then the seesaw flips the other way and I take on board the viewpoint that who am I to know myself and understand what autism is well enough to recognise it in myself, that it's arrogant of me to believe that I am capeable of making such a decision and being right. That just because it feels right doesn't mean it is and in any case, I'm the one with "problem" so how can I expect to be able to be objective enough to see that "problem" for what it is?
It feels like what I think I understand autism is from the inside, taking into account what research I've done to find out what that actually means.
And the seesaw keeps being pushed up and down by other issues too - a lack of confidence in doctors because of a number of issues in the past (and present) with health issues. Why would I give a "them" final say over something as huge as who am I, when their colleagues have brushed other things under the carpet which really shoud not have been?
I guess the solution is to find a doctor who understands autism and in whom I can place my trust. Apparently not an easy find, such a doctor. But if I don't, the seesaw won't stop going up and down.
I have lots of seesaws inside my head (I've just come up with that analogy and now it feels like there's a kiddies playground inside my head. Roundabouts too - thoughts which go round and round and keep coming back to the starting point.
I need to be the adult watching the scene, taking the time to understand what's going on and making as objective a judgement as possible.
Are you interested in psychology? I love the imagery of the IFS (Internal Family Systems) model. But that's a bit of a digression too far for this message. Another time perhaps.
On the music subject, I just received an e-mail from the online teaching organisation I'm learning a lot of stuf from and they have a promotion on at the moment for a couple of short online courses on music theory and writing music. If you have any interest at all in learning some music theory to see how it could help you with you writing, I'd recommend checking them out. No commission for me, just a friendly suggestion since the e-mail just arrived and you'd mentionned not knowing anything about music theory.
For me personally learning the theory behind what I've been donig for a long time unlocked a lot of blockages and made music even more fun.
Have a look at thinkspace.ac.uk and click on the yellow banner at the top talking about a bundle offer. I've done the learning music theory course and learned a lot.
Still re-reading your last paragraph trying to understand what you meant. Lots of different ways to read that, both on the lines and between them. I wonder if there's at least a chapter of a book condensed into a cryptic few short sentances in there? There are certainly a number of phrases which trigger issues in me which I'm starting to realise (have been realising for months, not just today) have been bigger than I thought they were.
What's showing off? Is one question I'm grappling with - is it showing off to actually work at becoming good at something and then sharing your work with other people? Is playing music so anyone other than yourself can hear showing off? There are certainly people in my past who would have said so.
Take a day off from myself. There again, that could mean all sorts of things.
Question for you - how do you view this communication space? What's the function of the comments section under your videos? What sort of interaction do you want with the people who might leave comments? Does it need to be very short and quick like other social media?
I'm pretty bad at short and quick. If I've got something to say it takes a while, and if someone else has got something interesting to say I like to delve into it properly too. But I'm not used to actually having dialogue with folk in the comments and I wonder if I'm doing it right or if this isn't the place for what feels more like real communication to me?
Anyway, have a nice weekend and have a look at thinkspace for music learning. There are of course lots of other online music learning plateforms too, but thinkspace is one of them I use.There's also truefire which has loads of guitar learning stuff, and "Scott's bass lessons" which is clearly biased towards the bass.
Must stop now before I really go on too much.
And Paul, if you'd rather I stopped writing, please just say so🙂. Receiving a reply feels great and gives the impression that the other person wants to interact. But I do often take that as a cue to write more and ask more questions. Which feels great, for me. But experience has shown that there aren't many people who like that and would rather I didn't write lots and hope they do the same.
From my point of view, it feels better to be told directly that you don't want to have involved dialogue, rather than just to stop replying and hope I get the message.
My roundabouts love that though - round and round and round wondernig what happened and why the person hasn't replied and what I might have said to upset them without realising.
At least now I can stand back and see what's going on in my head - I can see the roundabouts without having to be sitting on them getting dizzy. So I can now ask that if the other peson in the conversation doesn't want to continue with it, please woudl they just say so. It won't stop the roundabouts, they will still go around wondering why.
There are why roundabouts which have been spinning around in my mind for decades.
Again, another digression topic - how to deal with the why?; or what happened there? questions from situations in the past.
I'm doing it again, I'm getting carried away thinking I'm typing to soeone who might want tor read what I'm typing and understand what I'm going on about. Maybe, maybe not.
I guess that's what you mean about your YT channel providing you with an outlet. You record random videos about how your head works and stick em on the internet in case someone wants to watch them.
Have a nice day!
Wow, I didn't realize general Healthcare in the UK was that bad. Don't be too jealous of those of us in the states though, since they have effectively tied our insurance to work and not all doctors are in all networks changing jobs might mean being forced to change doctors. Plus loosing the job means losing all Healthcare. I think it's a mess everywhere really.
I think it must be. UK health care is a disaster. I've now been seen about my knee, and have to wait yet another 6 months to see the next person. I'll be dead by the time I get seen about it.
you and me both. I've had health anxiety issues since I lost half my body weight, unable to keep food in my system. Seasonal insomnia (3 hours sleep and 21 hours awake for 2 months). Started being unable to hold anything in my left hand, asked Doc at the physical. they put in a neurologist... 6 months later, halfway there I developed migraines with temporary vision loss, the neurologist saw me for a few minutes at the appointment day and scheduled a single test for the tremors in 2 months later, and I'm to wait 2 more months for the follow up visit before they will even talk about the migraine with vision loss episodes. and it'll cost few hundred dollars after insurance covers 80% of all this, in the great old USof A. here's hoping it's not a brain tumor, ALS, Parkonsins, or MS.
I hope all turns out well for you. Health Anxieties are no joke.
I relate SO MUCH to the NHS and Doctors stuff. And I'm like you, either nice or burning the world down.
A shame the NHS suffers because of bad decisions by those who don't work within it who hold purse strings.
I cant make doctor appointments either. My doctor now makes me monthly appointments. I have had 2 appointments now, with the same doctor, and my health is already improving. I'm in Scotland.
I'd love a routine appointment set up. My docs won't do it.
Hi I have had fibromyalgia for 20 years. The muscular skeletal people press each joint elbows knees etc. I didnt know both sides hurt till they squeezed them in the early days. I feel them now though. Avoided the meds after a few years. They were terrible. Sleep trouble and widespread joint pain. Muscles and limbs, shoulders joints knees, wrists, elbow s ankles, even my finger joints hurt with repetitive movements sometimes. Organs can hurt too as muscular skeletal.
Anyway shifted changed doctors and the knext one was not good had so much trouble getting listened to. They do the appointments like yours too. They put me in a tail spin. They didnt find the 2 hips replacements I needed through the decade with them. They thought it was the fibromyalgia. A replacement temp doc there found the problem. Just changed to the doctor who found that. Hope he can look at my back as other Doc said cant replace your back and dismissed it.
Private health care insurance is a good way to go. Speeds it up as the waiting is not cool at all.
All the best.🤗
Sounds a rough ride! I have a bad right hip from time to time...no idea why?! But I do need the private healthcare, just to be listened to. My Doctor just thinks I am out of my mind.
I've always had health anxieties, and I believe part of this is that I have much, much more sensitivity to my own internal states and balance of health and sickness. It's both a gift and a curse.
From what I've gleaned re autism, those of us with autism are much more likely to have certain conditions. Autoimmune disorders are one, allergies, food sensitivities, migraines are others, fibromyalgia may be one, too, though I'm not sure. There are others I don't remember. I've been officially diagnosed with many, but only after years of trying. I'm in the US and my MD at a very top medical facilities has missed many of these things, or not offered any treatment. He's one of their best docs and I like him, but he mainly follows the diagnostic manual and "evidence based treatment" models and they are usually ineffective for many the things I mentioned, some of which I've had. Those conventional models are best for certain kinds of illnesses, the ones that will kill you right away, or the ones that there are specific treatments for. Some others can seem invisible to the system.
I've had better luck in the U.S., than you in the UK, which is utterly dreadful (!), but have the best luck with a functional medicine doctor who did different kinds of tests and treatments. Many of these are out-of-pocket since the insurance won't pay for most of them. The most effective treatments I've had aren't paid under my plan. It don't have much extra in financial resources each month, but my health is at the top of the list. The insurance industry not paying for prevention or alternative things in the US is well known. Still much better here than you, but lots of problems.
This Dr (functional) works with diet and some supplements and I've found better health through these things. Docs like him are rare as hen's teeth and people are taught not to trust supplements since the advertising of drugs is such big business in the US (such advertising is illegal in most countries). Side note: Some of the supplements he has recommended are similar to some those by Dr. Berg on his youtube videos. At the same time, changing diet is usually not too expensive or even money saving depending on previous habits. (Dr. Berg can seem to much "hype" but some things he recommends my Dr did as well, with no hype).
Since alternative medicine is one of my "special interests" I've had good luck with this. I research each supplement thoroughly for side effects, interactions before I take it. I consult with my functional med Dr but also do my own research. Of course each person is unique so what works for me may not work for everyone. Also, the supplements aren't cheap. Changes in diet are much more affordable and I believe more important. But which ones?
Most recently I did intermittent fasting following a book by Dr Jason Fung and no longer eat a high carb diet. I started eliminating bad carbs by following the Bright Line diet then transitioned to the "timed eating" or intermittent fasting of Fung. I now have no cravings for sugar or carbs anymore, which was lifelong, but the transition was uncomfortable. The diet I eat is all from scratch and very inconvenient. No prepared foods, never fast foods. Luckily, social eating is something I avoid anyway, so no loss there.
This evolved over the course of a year, I didn't do it overnight. This appears to have cut down a lot on inflammation/pain, for one thing. Also, I lost quite a bit of extra weight and am now kind of skinny. This has improved my health like nothing else and I'm decades older than you. I no longer take 2 blood pressure medicines, for instance. I consulted with my Functional Dr and experimented by taking daily BP readings. My readings are better than 30 years ago, always in the good zone. I wouldn't suddenly stop such drugs ever, but it worked well. I have nowhere near the pain I once had, though my back and knee are still a problem. Less constant than before, though. Maybe being skinny helped some of that, or maybe less inflammation or both. Progress.
Again, I'm not saying any specific thing here is right for any individual. What I am saying is that medicine as a whole has problems and I've listened to my body and found some solutions. I've informed my functional medicine Dr about these, or he has suggested them. It has taken time, but the "gift and curse" of being more attuned to my body's health/illness which sometimes goes with autism is part of the picture for me.
That was very interesting. I like how you pat attention to yourself and how you respond over what others may tell you. You will always be your best judge when it comes to hoe you feel.
I've tried many diets and eating trends. Nowhere near to what you have done though. But I can genuinely say the only things that have worked for me was the carnivore diet, and intermittent fasting.
The carnivore diet due to the missing carbs stopped my hunger, and always made me feel more alert.
The intermittent fasting did well for my sleep and mental clarity.
Everything else I've tried either had no effect or was detrimental.
The problem with both intermittent fasting and the carnivore diet for me is either finance for the meat, or time restrictions due to travelling and working for the intermittent.
I will be back to intermittent one day, I actually miss it.
@@AdultwithAutism I hear you about the problems with travel and cost for IF and carnivore. Though I don't have a carnivore diet, the low carb high fat diet is expensive enough (lots of veggies fill in and I sometimes grow some of my own on my deck in containers, it's a whole other special interest). I hope you can get back to it when it works out to do that.
Yep, hopefully I'll figure it out soon 👍🏻
❤ love ypur channel my man.
Thank you, means a lot 👍🏻
Hi Paul I can relate of how your feeling with health issues the doctors don't know how we live with health anxiety try claiming pip so then it will allow you to help support your needs as nhs doesn't offer any kind of help around autism im facing similar issues myself but it's so draining having to keep up with everything I'm sure things will improve for you.
Hi Danny. I do need to look into PIP, as the more I notice about what I do on default to make sure everything else and everyone else is okay, I suffer for it. It's to a point now where I need to accept that it's something I need to look into 👍🏻
I struggle with that too. Thankfully I'm in USA.
Our health care doesn't care about your health. It's all reactive and not proactive. You have to break here before they look to repair you.
Halo! I would take this with a pinch of salt, but is it possible some of the sporadic pains you have are linked to psychological issues like depression or anxiety? And that’s pretty sad about the healthcare system there. :( Also, I was wondering where that sweater is from, I think my dad has the same one
They could well be, who knows? The doctors give 9 minute appointments...and that's if you can get one. So there is never time to talk or try and figure out what is wrong. So all the aches, pains, problems go unchecked.
The top is a long sleeve Carharrt workwear T Shirt. I like them as they're relaxed fit, so fit well 👍🏻
@@AdultwithAutism thank you!
👍🏻
Omg I had same thing with no outcome either? And I woke up during my thingy
Yes yes I actually later got double diagnosis of fibromyalgia and hypermobility spectrum
You woke up during?! Wow
I'm sorry to hear about your friend and your physical pain. Autistic ppl are 3xs more likely to have issues like fibromyalgia
I didn't know that. I just wish I could find a medical professional who will listen to me instead of just assuming EVERYTHING is a health anxiety.
@AdultwithAutism It was really hard for me to get Dx with fibromyalgia. I had to do a lot of my own research, print out the studies, and actually bring them to my Dr. In doing that research, I found that diet can help alleviate the intensity of the symptoms. I have found much success with starting a carnivore diet for 3 months to eliminate all the inflammation in my system, like an elimination diet. Then, slowly add veggies and such back in slowly to see if I have reactions to it. I was Dx asd earlier this year, and I'm 43. I have noticed that the carnivore diet has also helped me with the amount of anxiety I feel. I understand everyone is different, but this has really helped my fibromyalgia and anxiety. Cheers, mate. Hope it helps if you try
Foam roller helps
I feel you it’s so exhausting and frustrating
Most certainly is 👍🏻
I found the foam roller ineffective.
I started with a foam roller as I didn't want to leave a mark on the GP receptionist's head.
I had to move up to a didgeridoo. That helped a alot.