Hi I have Ankylosing Spondylitis, and have set up this channel to help raise awareness of the disease, and share my experiences to hopefully help others who also have A.S. I also suffer from depression and anxiety, which were both diagnosed very soon after my diagnosis with A.S. along with epilepsy which I have had since my mid-20s. I hope you find my videos useful, and please feel free to subscribe to my channel for future videos. Thanks! Ian
Hello and thanks for your effort here. Had been on Arcoxia 90mg and Ibuprofen 400mg for almost 6 years now, but have recently started Cosentyx 150 as my rheumatologist instructed. It reduced pain with about 50% after the first dose, just had the second today and I hope the side effects will stay away from me and all will be good. Good luck to everyone and keep fighting this bastard!
Hi Ankylosing Spondylitis man. I think there are too many people on PIP so I can see a huge change coming. I think they are going to make it vouchers only for those with less severe disabilities and those with mental health issues will receive Therapy, counselling and be able to see psychologists and get psychiatric treatment etc. People with severe disabilities like myself and you will still receive cash as vouchers are not going to cover all the different types of treatment and home care and extra heating and electricity etc etc. This is what I think will happen.
Totally agree, I think the system certainly needs a revamp. Covering the mental health support system will need a good amount of investment, so fingers crossed this can all be covered for the benefit of everyone.
@@AnkylosingSpondylitisMan Yes because say for instance someone with a mental health condition but no physical disability they are able to clean there house/bathroom etc. So they are physically able to do the task and someone with a severe physical disability cannot because they are physically unable to do the task therefore they need to pay someone to do that task for instance. Mental health conditions and issues should be focused on getting these people better. Not giving people money and I know a lot of people are going to buy alcohol and cigarettes with the money so I can see why people are unhappy. Alcohol and cigarettes is not what disability money is for. They do need to bring a stop to people buying cigarettes and alcohol and gambling with taxpayers money.
I’m with you 1,000 percent. I finished about 2 months of being a first grade teacher in the midst of an extreme flare up. I don’t know how I did it looking back. One kid asked me to tie her shoes. I was so sad but I had zero flexibility. I just said my back is really bad and I can’t. Another student said yes, he’s hurting, I’ll help you tie your shoe. 😢
Just a few things here - I have a severe form of arthritis called Ankylosing Spondylitis, so I can't use my fingers as well as any normal person. I can't twist my body from side to side, so that rules out a production line. I am also not a scrounger, I paid my dues into the system for over 30 years, and was always at the higher tax bracket. So how does the pittance I get from the government make me a scrounger? I'd like you to respond please.
I have a flare up in my sacroiliac joint on my left hand side also just now. It's really bad. It's very difficult to sleep with it. Getting to sleep in the first place is particularly difficult.
No reasonable adjustments made for me at my work. Just fun made out of me and made to look like i was faking it. Even though i had MRI scans and lots of proof. Ended up having to leave my work due to bullying because of my disability.
I asked my specialist if this was a thing and he said no - but I had a meeting with HR and they offered to set up something once I have a letter from my doctor with the diagnosis. I'm curious to see what other folks have had done!
Let's hope they sort something out for you. When I was still working, I was given a more supportive chair, a mouse & keyboard for arthritis, and generally a bit of flexibility for all the appointments I was going to.
@@AnkylosingSpondylitisMan no. Medical cannabis has been avalable to buy through a private clinic since 2018. I call my clinic tell them what’s strains I want from the list and they arrive next day via Royal Mail. Medical cannabis is not avalable on the NHS. my only option is to have a private clinic to be legal or go to a drug dealer.
@@AnkylosingSpondylitisMan was in 500 tramadol a month. 250 pregabalin. 28 zopiclone and others. Now I’m on 1 pot of 10g cannabis a month. Changed my life!
This is exactly the problem with a voucher scheme. There will be so many places that potentially turn people away & they will be left with a worthless piece of paper.
Welcome to the AuDHD parenthood club! Not sure if you’ve already found groups, but what I have found helpful for us was to follow Autistic and ADHD groups and personal pages. I like following people who live with those conditions, such as Jordan James the autistic photographer (started because I like his art, but he is a great AuDHD advocate) because only following parents groups can be restrictive. No idea where you are in your journey or anything about your son except what you’ve just mentioned but happy to give more group suggestions if you haven’t got onto them yet.
Thank you so much for this, autism was diagnosed about 4 months ago, and ADHD just a few weeks ago. We're still in the early stages of the official side of things (school, assistance etc) but we've definitely known for a while.
The DWP tried to persuade me to have a telephone assessment because I wanted the assessment recorded and they didn't have recording equipment at the assessment centre but I explained to them that a face to face assessment would be better because then the assessor can see for themselves my physical issues and my daughter would record it. Unfortunately people have been denied PIPs due to the assessments being done over the phone as the assessor can't really assess someone's physical difficulties over the phone as most people who have trouble standing up and with balance are likely to be sitting down through the whole assessment.
Mine was over the phone (initial one due to COVID) - I think I bombarded them with so many reports, scans, letters etc, they probably had no choice in giving it to me 😂 In all seriousness though, yeah, it's so difficult to be able to get the full picture over a phone, as opposed to seeing someone in person.
British values are such a mixed bag. Nice bit of variety. Unnecessary politeness to a stranger who bumps into you, "sorry". Brutal to your nearest and dearest. Nowhere else in the world can you affectionately call someone a c**t. Honesty comes to mind too. Simon Cowel style but less refined. You'll generally know what a british person thinks because they'll say it. Tea may not originate in England but havin a cuppa is British. Tea and biscuits (scones if you're feeling posh).
Drunks, aggressive, lazy, fat, 6 children with 6 different men. Living on benefits, uneducated, low IQ, bigotry, scantily dressed. Embarrassing to the core of the English behaviour abroad.
British people dont have any values. They vote for blue or red Tories every single time. Parties that support genocide and Israel. They dont have any values. They are more bothered about football, their new phone or strictly come dancing than they are about the shreaded little bodies of Palestinian children. British values are look after number one and fuvk everyone else. Im all right jack.
@@AnkylosingSpondylitisMan and if memory serves you’ll surely recall that Ancient Greek democracy was based on Jus sanguinis laws and reserved only to those who had completed military service. Hardly the basis for modern democracy which is based on individual rights and heads of state being accountable to elected chambers, both of which have roots in the British culture. Legitimately, this idea of Ancient Greece as an inclusive utopia is comical. They were ethnocentric to the point of making modern racists blush. One of the crucial factors in Sparta’s decline is that they were so reticent to allow anyone “not of Spartan blood” join the citizenry. We may not use that kind of phrase anymore but we know what it means.
Ahh sorry so you actually meant to say the Westminster system instead of democracy, as the ancient greek inspirations for many modern writers on democracy is a very valid thing to talk about here when unspecified. The idea that democracy and rule of law as concepts are in any way distinctly British is laughable and completely ahistorical.
You have to be the worst kind of colonial imperialist wanker on the planet to believe British values are so universal as to be none existent. You are so steeped in monocultural “universalism” that you cannot fathom other people’s having totally different societal structures to our own.
Detailing the culture of a people in a RU-vid video or comment section is essentially impossible, it’s something that would require a book or series of books to pin down with any real accuracy. At the same time, we know what is British and what isn’t in the same way we know what’s Arabic or what’s French. Thousands of tiny details that when displayed together we recognise as British, but we struggle to individually name. You could also just say that British culture is however the ethnically English, Welsh or Scottish behave and British values are whatever the same peoples value.
This is an awful situation for you to be in. I'm not sure whether people are aware of the further complications that AS can cause. You make some excellent points here, although they can be so scary, I hope these never come reality.
A few that come to mind: Respect for others, letting people live their life how they want (as long as they're not hurting anyone), democracy, freedom to express ideas and opinions, Judeo-Christian, equal rights regardless of gender, race, colour or sexuality, English language
Judeo-Christian? Isn't the Anglican Church the established Church of England? (Unless it was disestablished, as I think I recall reading?). Living in Australia, I have never thought of the UK as a specifically Jewish country. If it apparently is: could it take people from Israel, who don't wish to live in that State, which is blighted by fascism? The Israeli Occupying Forces have destroyed nearly every Christian Church in Gaza, in the last 8 months. Christians from there have fled to Australia and other countries. They have described hell on Earth, created by the IOF. There is also documentation of the habit of Jewish (zionists) spitting on Christians, who are visiting Christian holy sites, such as the birthplace of Jesus. If Jewish people in the UK habitually behave in a similar way, to zionist Israeli people (hopefully they don't??), surely that wouldn't fit with the well known, British characteristics of respect for others and freedom of mutually respectful lifestyle? Are there similar, Israeli lobby groups, in the UK; to those which exist where I live, as well as in the US? Those groups do not fit with values of tolerance, freedom of speech and a rejection of racism. If an unspoken racism, towards Palestinian people, is being implied, by the unusual emphasis on "Judeo Christian", or religious discrimination, towards Muslims: are there similar Islamic lobby groups, that aim to repress freedom of speech, in the wider UK community? I didn't think that there were. Islam is also an Abrahamic religion, which counts Jesus Christ as a Prophet of God. Would that not be equally linked with Christianity?
Fish n chips in newspaper wrapping and your pay packet in a little brown envelope with your employee number and name, I couldn’t open mine as that went straight to Mum and I never opened a single packet for over 5yrs. It’s all in your bank now and chip and pin. They say the good old days for a reason 🇬🇧
This will only happen if tories get in ! Vote labour ! I am on pip for Mdd and anxiety aswell as learning difficulties and I am never going to get better making me go to work with social anxiety will just push me to want to not be here ! I have suffered 13 years done cbt therapy and physchtherapy the lot nothing works my depression is treated with 200mg sertraline everyday the highest dose but it don’t get rid of my depression ! Nothing can and it’s untreatable my pip personally helps with everyday bills like extra food and electric and gas it’s not cheap and rent raise etc vouchers won’t help that! I hardly go out and if I do it’s via taxi only and it costs a lot to keep travelling do they want me to be locked up 24/7? Like a prisoner ! They can’t provide nothing for me no aids or adaptions no therapy etc nothing because I’ve got it all or done it all already ! They have no idea ! They have only said vouchers will be for aids and it’s not guaranteed to be vouchers it may be a receipt based thing so you pay with your own money you won’t have !! For things you need and you show a receipt they refund it ! How we meant to get the funds for these things in the first place if we all on no money ! ?? People use it towards medications or dialysis treatments and some use it to mortgages etc ! A lot of people will un alive themselves and be homeless 😢and once again they targeting the most vulnerable ! Either way if tories win or if they don’t labour have already said they will do Similar too so either way we won’t win which is sad it’s already a long process to begin with I’ve been waiting since January for my review to be sorted and still not had my assessment it’s taking forever and playing games with my depression and anxiety I’ve been so poorly worrying sick over it one text message which just says they got it and will probably need an assessment which was sent nearly 3 months ago! Been 6 months
Well, I would also b stuffed. My ank spond has fused my whole spine apart from the very very botyom, but it's pushed my hips to the right. It's also made me fuse chin to chest, so my chin is an inch away from my chest. This has in turn not helped and given me 13 other medical problems and now I am in heart failure due to my organs getting squashed. I am under 3 different hospitals, including the rnoh. So I would not b able to pay for my health care, and like u said, if I could, I would never b able to pay the monthly fee. The nhs works for me, and if that changed, then I would have to come off my meds and not see anyone. In that case euthanasia should be legalised, so we have a choice in what we do as it is no life living like this. We cannot lose the nhs for us people with multiple co morbidity.
Do actually get car £108. 85 DLA per week yes Thomas. Get lower rate DLA Employment support allowance it £188 per week.. Got bought property. I am Italian nurse Bargi Italy with British passport. Pietro Boselli Italian my friend he super rich. Worries about losing his British passport Pietro Boselli Italian he vote British Labour party July 4th general election in England London Britain he Londoner Pietro Boselli Italian he British citizen Thomas yes. Lobbying Hoyze of Lords to help Pietro Boselli Italian retain his British passport. They agreed that England London Hoyze of Lords. How much in total £400 per week disability benefits most you can get Thomas.
By the way, do you workout if you have a flare-up? And regarding taking medication, do you know how much it affects the muscle growth verses the inflammation which prevents muscle growth?
I don't do any working out even at my best, it's just not something I could entertain unfortunately. There are people on here that have AS that still workout though. That's an interesting question about muscle growth, but I don't really have any knowledge in that area, sorry!
@@AnkylosingSpondylitisMan I try to workout myself, I am going through a bit of a flare-up so need to workout but keeping the flare-up in mind so I don't over do it
