My chronic pain has been very debilitating the last couple of years. I’ve felt so alone, trying to raise two small children on my own, and no support system. I’ve been struggling so much. This video is very helpful.
It’s extremely difficult and exhausting trying to act normal. All of my family knows what I have and have seen what I go through. But I have one daughter who seemed to care but then when she started having kids she started to rely on me more on helping her with our grandkids, which I did as much as I could cuz I am a care giver and will go out of my way in massive pain or not and help people but then she started getting angry with me when I couldn’t watch the kids when I had a drs appointment or got busy doing other things. Then she wanted me to babysit so she could work which I did off and on but when I told no I can’t do it it’s like she totally disowned me. I have two other grown kids and they understand and don’t rely on or get mad at me when I can’t do something. Just breaks my heart how a person/daughter who you thought cared for you and probably never did, just wanted someone there alllll the time for her. She’s married too so it’s not like she has to do it on her own. Sorry on the venting but that just hit me really hard cuz all I’ve ever done was be there for her and who ever needs anything. My husband also helped them a lot with things as well. Her and her boyfriend and kids lived with us a couple times. In a way it’s a relief cuz I need to heal and need to help myself for once in my life after raising my own kids with chronic pain and fatigue, arthritis throughout my spine and just a lot going on. Now I don’t have to feel guilty when I have a drs appointment or to go visit a friend or do things with my husband who’s been my best support system. Thank you for the video, you are the best.
Hi. Good video 📹 I have fibromyalgia as well as mild autism. I feel often medical professionals are the worst for not understanding hidden disabilities like I've got. For example, when I applied for esa in the past, they mostly assess me just for my mental health needs. However, when it comes to my physical health issues, the dwp don't take my fibromyalgia seriously or ask questions surrounding how it affects me. I would say my fibromyalgia is more worse for me to deal with but because I don't look physically unwell, ppl generally think I look OK or it's just in my head with my problems 🙃
i have both too & i had to record the DWP covertly over a period of 8mths every single phone call. I recorded them lying to me & my gp, they also ignored everything on the forms. I informed them i had all this recorded and they had no choice but to accept the truth of what i, my doctor & consultants said. These companies & those hcp getting their 30piecrs of silver are scum. People are dying because of their lies and I devoted 12yrs to exposing their criminal behaviour. Maximus, atos, capita & serco are criminals. I have a hoins degree in psychology and a masters in behavioural science yet they patronise & mock me.... until i through the book at them! never give up, never back down!
your right most people judge harshly and just dont understand how energy levels can be so low and muscles can hardly lift your own body. how can they think your capable of moving large object in any way? they simply have never experienced anything like it to have a understanding. it seems we associate and dont have empathy we once did as humans. it is evolving in a backwards way at the present moment and we need a course correction. people are followers sheep or wolf packs but it seems all the independent true thinkers are all but gone and those who are here are never heard. education and compassion is what is needed.
Well described , great video , I suffer withe chronic fibromyalgia etc , and found your vid close to the real life’s of any body with fibromyalgia I’ve probably had one of the hardest years I’ll since I had to finish work in 2017 . I have been together with my wife for 40 + yrs but this year has really been tough and put a strain on our family life . I wouldn’t wish fibromyalgia on anybody , I am on strong pain relief and other meds which are taking a toll on me , I take it this is a condition you suffer as your description of the symptoms is so precise? I’m going to forward this video to my wife as I hate the fact fibromyalgia is driving a wedge between us .
Thanks! Hi Stuart, just a little something to help in any way possible, and to say how wonderfully helpful you’re channel is to people like myself who are living with a disability. You do so much to keep us informed on all things we really need to know. You and your team are invaluable.
I'm so glad I found this video and thank you so much for sharing in great depth by so clearly and simply, this was really helpful. I have two friends are struggling with different chronic illnesses, and have noticed I've been getting...well frustrated with how little I can do do help or how I don't often know the right things to say. I've never had a friend with a chronic illness before as far as I know, and its made me realise he lack of empathy and understand nature I have. I knew I could potentially project this on to them, but that wouldn't be a loving thing to do. They go through so much and it would make things worse. Next time I see them, I'm going to ask and understand what their needs are, and also practice active listening. Watching your video has renewed my energy to seek to understand them. I still may not get it right all the time, but I won't stop trying because now I know what to try to be better friend :)
I hear you I have a multiple number care team that look after me 12 hours a day plus and I have multiple conditions, autonomic neuropathy, pots, and small fibre neuropathy plus I have EDS, ME cfs (severe exhaustion & PEM) and severe Gastroparesis (paralysed stomach) enteroparesis (paralysed Bowel) oesophagitis (with unsafe swallow) I have a paralysed bladder too and I’m totally tube dependent (3 tubes) to survive, I’m also autistic with other neurodiverse diagnoses, had 49 surgeries in 12 years this new change to UC ESA which we will eventually all get put on the work coach thing it scares me to death I wish I could work but I’m too sick, I had to lengthy appeal my pip too and only awarded until early 2025 and I’m on ESA not UC. I live on my own last 12 years. Also every day I’m up all night doing medications, pancreatic enzymes and feed down my tube I don’t get to sleep until 6-7am and then I sleep till 3pm how on Earth could I go to work again?
Joanne im utterly disgusted and appalled at this treatment. You should be on the highest rate & your health team should hopefully help you or the GP if possible?? im so sorry you are feeling isolated too, you have done nothing wrong, its designed to fail you by ruthless insurance companies and a cruel & vicious govt.
Thank You Stuart! I’ve had Long Covid for almost three years, the symptoms are similar, if not identical to ME/CFS. I live alone and the majority of what you have said hit home with me. I have two daughters, not living home, who do not appreciate the difficulties attached to my condition, I’m hoping that this video will help with this. I’m not sure if it’s same with ME but any upset, physical, mental or emotional can cause extreme relapse so I’ve not raised this issue with them and suffered in silence.
I would just like to say, I had a hospital appointment and as I was walking to the specialist office. I should say I use a Walker to help me. A woman waiting with her daughter said “ I would die if I used one of those things” how hurtful. I felt half of a person at that moment. She also was in the bone structure unit. People need to think before voicing their opinion.
That's awful,it's hard enough without being judged by strangers. I use a rollator occasionally but I am made to feel ashamed to use one because I look healthy 🥺
@@kittybell4604 people have no idea what’s going on with other peoples health. Someday it could be them. Never feel ashamed for your needs but, yes it can be very hurtful.
I love this. New to your channel but I will def share this with friends and family. I loved what you said at the end too about some friendships ending but you can find new connections. Thank you I'd been quite lost in it all.
Ps. I have autism and I’m exceptionally sound sensitive and certain sounds do cause me physical pain which can be excruciating especially high pitch sounds and they trigger me to meltdown if I can’t remove said sound. I am often in ear buds and ear defenders.
Thanks for your wonderful video, I have blood cancer CLL, and currently wait and watch, I have lot of fatigue and body pain all the time and taking lot of pain killer to ease me with daily life, it’s effect me with my daily work ability, please advise me what kind of financial help I can apply thanks in advance
Hello Stuart. I wonder if you can understand this. A few years ago I had to put my job on hold to look after a relative. I claimed universal credit and carers allowance. Because I was claiming carers allowance my universal credit was deducted to a grand total of £150 per month. Ok so far so good. The relative that I was looking after died at the beginning of September. I was a bit surprised that my carers allowance stopped straight away as I thought it would trot on for 8 weeks, but it didn't. The surprising thing though is that since then, no matter who I seem to talk to, no one seems able to fix the fact that for the last 3 months I have been having to live on £150 a month! Yes, that is right, I am still having the deductions from my universal credit, even though I am not receiving carers allowance. I have spoke to carers allowance, I have spoke to job centre. But still I just get £150, a month. Is this common? Obviously I am going back to work pretty soon anyway in my job which I loved doing ( a few lapsed licences need sorting out at my expense ) universal credit & carers allowance just helped me look after my relative while they were in their last year and a bit. But how is anyone supposed to survive on less than £5 a day? My heating costs more than that at the moment.
Hey thanks stu for you work I would love to here your view on Functional Neurological Disorder,I’m a suffer unfortunately having PIP review and that’s all I claim and I depend on it.
Its pretty sad that you have to explain how to be empathetic. The type of people that need this explaining though, perhaps will never understand it, and in fact, they don't want to anyway. Most of them are assessors for the DWP though. 🤣 You have a lovely voice btw. Maybe you should do Guided Meditation TH-cams instead? Or in addition to. About March, I phoned CAB and spoke to somebody who sounded just like you, perhaps my imagination is playing tricks on me. He was one blo0dy amazing advisor. Never spoken to someone so helpful.
My chronic pain has been very debilitating the last couple of years. I’ve felt so alone, trying to raise two small children on my own, and no support system. I’ve been struggling so much. This video is very helpful.
Some days, those babies are probably all that is keeping you alive… I am convinced my children are what keeps my husband going.
It’s extremely difficult and exhausting trying to act normal. All of my family knows what I have and have seen what I go through. But I have one daughter who seemed to care but then when she started having kids she started to rely on me more on helping her with our grandkids, which I did as much as I could cuz I am a care giver and will go out of my way in massive pain or not and help people but then she started getting angry with me when I couldn’t watch the kids when I had a drs appointment or got busy doing other things. Then she wanted me to babysit so she could work which I did off and on but when I told no I can’t do it it’s like she totally disowned me. I have two other grown kids and they understand and don’t rely on or get mad at me when I can’t do something. Just breaks my heart how a person/daughter who you thought cared for you and probably never did, just wanted someone there alllll the time for her. She’s married too so it’s not like she has to do it on her own. Sorry on the venting but that just hit me really hard cuz all I’ve ever done was be there for her and who ever needs anything. My husband also helped them a lot with things as well. Her and her boyfriend and kids lived with us a couple times. In a way it’s a relief cuz I need to heal and need to help myself for once in my life after raising my own kids with chronic pain and fatigue, arthritis throughout my spine and just a lot going on. Now I don’t have to feel guilty when I have a drs appointment or to go visit a friend or do things with my husband who’s been my best support system. Thank you for the video, you are the best.
Hi. Good video 📹 I have fibromyalgia as well as mild autism. I feel often medical professionals are the worst for not understanding hidden disabilities like I've got. For example, when I applied for esa in the past, they mostly assess me just for my mental health needs. However, when it comes to my physical health issues, the dwp don't take my fibromyalgia seriously or ask questions surrounding how it affects me. I would say my fibromyalgia is more worse for me to deal with but because I don't look physically unwell, ppl generally think I look OK or it's just in my head with my problems 🙃
i have both too & i had to record the DWP covertly over a period of 8mths every single phone call. I recorded them lying to me & my gp, they also ignored everything on the forms. I informed them i had all this recorded and they had no choice but to accept the truth of what i, my doctor & consultants said. These companies & those hcp getting their 30piecrs of silver are scum. People are dying because of their lies and I devoted 12yrs to exposing their criminal behaviour. Maximus, atos, capita & serco are criminals. I have a hoins degree in psychology and a masters in behavioural science yet they patronise & mock me.... until i through the book at them! never give up, never back down!
your right most people judge harshly and just dont understand how energy levels can be so low and muscles can hardly lift your own body. how can they think your capable of moving large object in any way? they simply have never experienced anything like it to have a understanding. it seems we associate and dont have empathy we once did as humans. it is evolving in a backwards way at the present moment and we need a course correction. people are followers sheep or wolf packs but it seems all the independent true thinkers are all but gone and those who are here are never heard. education and compassion is what is needed.
Well described , great video , I suffer withe chronic fibromyalgia etc , and found your vid close to the real life’s of any body with fibromyalgia I’ve probably had one of the hardest years I’ll since I had to finish work in 2017 . I have been together with my wife for 40 + yrs but this year has really been tough and put a strain on our family life . I wouldn’t wish fibromyalgia on anybody , I am on strong pain relief and other meds which are taking a toll on me , I take it this is a condition you suffer as your description of the symptoms is so precise? I’m going to forward this video to my wife as I hate the fact fibromyalgia is driving a wedge between us .
Thanks! Hi Stuart, just a little something to help in any way possible, and to say how wonderfully helpful you’re channel is to people like myself who are living with a disability. You do so much to keep us informed on all things we really need to know. You and your team are invaluable.
Sharon, you are so kind for all the support you give this channel, I can't tell you how grateful I am for this x
Thank you for making this, I've had Long Covid since March 2020 and suffer extreme fatigue, exhaustion and pain amongst other things!
I'm so glad I found this video and thank you so much for sharing in great depth by so clearly and simply, this was really helpful. I have two friends are struggling with different chronic illnesses, and have noticed I've been getting...well frustrated with how little I can do do help or how I don't often know the right things to say. I've never had a friend with a chronic illness before as far as I know, and its made me realise he lack of empathy and understand nature I have. I knew I could potentially project this on to them, but that wouldn't be a loving thing to do. They go through so much and it would make things worse. Next time I see them, I'm going to ask and understand what their needs are, and also practice active listening. Watching your video has renewed my energy to seek to understand them. I still may not get it right all the time, but I won't stop trying because now I know what to try to be better friend :)
I hear you I have a multiple number care team that look after me 12 hours a day plus and I have multiple conditions, autonomic neuropathy, pots, and small fibre neuropathy plus I have EDS, ME cfs (severe exhaustion & PEM) and severe Gastroparesis (paralysed stomach) enteroparesis (paralysed Bowel) oesophagitis (with unsafe swallow) I have a paralysed bladder too and I’m totally tube dependent (3 tubes) to survive, I’m also autistic with other neurodiverse diagnoses, had 49 surgeries in 12 years this new change to UC ESA which we will eventually all get put on the work coach thing it scares me to death I wish I could work but I’m too sick, I had to lengthy appeal my pip too and only awarded until early 2025 and I’m on ESA not UC. I live on my own last 12 years. Also every day I’m up all night doing medications, pancreatic enzymes and feed down my tube I don’t get to sleep until 6-7am and then I sleep till 3pm how on Earth could I go to work again?
Joanne im utterly disgusted and appalled at this treatment. You should be on the highest rate & your health team should hopefully help you or the GP if possible?? im so sorry you are feeling isolated too, you have done nothing wrong, its designed to fail you by ruthless insurance companies and a cruel & vicious govt.
Thank You Stuart! I’ve had Long Covid for almost three years, the symptoms are similar, if not identical to ME/CFS. I live alone and the majority of what you have said hit home with me. I have two daughters, not living home, who do not appreciate the difficulties attached to my condition, I’m hoping that this video will help with this. I’m not sure if it’s same with ME but any upset, physical, mental or emotional can cause extreme relapse so I’ve not raised this issue with them and suffered in silence.
Great video. Thanks for your understanding.
I would just like to say, I had a hospital appointment and as I was walking to the specialist office. I should say I use a Walker to help me. A woman waiting with her daughter said “ I would die if I used one of those things” how hurtful. I felt half of a person at that moment. She also was in the bone structure unit. People need to think before voicing their opinion.
That's awful,it's hard enough without being judged by strangers. I use a rollator occasionally but I am made to feel ashamed to use one because I look healthy 🥺
@@kittybell4604 people have no idea what’s going on with other peoples health. Someday it could be them. Never feel ashamed for your needs but, yes it can be very hurtful.
@@sharonramsey715 thank you for your kind words, yes you are right I will think on my own needs. You take care and Happy Christmas ⛄
@@kittybell4604 yes let’s look after our selves. Have a very Happy Christmas with the people who really matter.
I love this. New to your channel but I will def share this with friends and family. I loved what you said at the end too about some friendships ending but you can find new connections. Thank you I'd been quite lost in it all.
I’ve had fibromyalgia for 30 years. I now have ME/CFS as a result of long Covid. They are very different illnesses.
thank you for your uploads stuart! i get very fatigued because of multiple sclerosis.
Ps. I have autism and I’m exceptionally sound sensitive and certain sounds do cause me physical pain which can be excruciating especially high pitch sounds and they trigger me to meltdown if I can’t remove said sound. I am often in ear buds and ear defenders.
Thanks for your wonderful video, I have blood cancer CLL, and currently wait and watch, I have lot of fatigue and body pain all the time and taking lot of pain killer to ease me with daily life, it’s effect me with my daily work ability, please advise me what kind of financial help I can apply thanks in advance
Hello Stuart. I wonder if you can understand this. A few years ago I had to put my job on hold to look after a relative. I claimed universal credit and carers allowance. Because I was claiming carers allowance my universal credit was deducted to a grand total of £150 per month. Ok so far so good. The relative that I was looking after died at the beginning of September. I was a bit surprised that my carers allowance stopped straight away as I thought it would trot on for 8 weeks, but it didn't. The surprising thing though is that since then, no matter who I seem to talk to, no one seems able to fix the fact that for the last 3 months I have been having to live on £150 a month! Yes, that is right, I am still having the deductions from my universal credit, even though I am not receiving carers allowance. I have spoke to carers allowance, I have spoke to job centre. But still I just get £150, a month. Is this common? Obviously I am going back to work pretty soon anyway in my job which I loved doing ( a few lapsed licences need sorting out at my expense ) universal credit & carers allowance just helped me look after my relative while they were in their last year and a bit. But how is anyone supposed to survive on less than £5 a day? My heating costs more than that at the moment.
Hey thanks stu for you work I would love to here your view on Functional Neurological Disorder,I’m a suffer unfortunately having PIP review and that’s all I claim and I depend on it.
Hi Stu have you much experience within the Restart programme? Cheers
Its pretty sad that you have to explain how to be empathetic. The type of people that need this explaining though, perhaps will never understand it, and in fact, they don't want to anyway. Most of them are assessors for the DWP though. 🤣 You have a lovely voice btw. Maybe you should do Guided Meditation TH-cams instead? Or in addition to. About March, I phoned CAB and spoke to somebody who sounded just like you, perhaps my imagination is playing tricks on me. He was one blo0dy amazing advisor. Never spoken to someone so helpful.