I get asked a lot of the same questions from different people pretty much every other day, and have to type the same things out over and over which makes my fatigue and pain so dramatically worse, plus it’s a bit annoying to have to keep explaining myself over and over every few days or so as that is how often I get asked the same things!
That is why I decided to make a FAQ on the most asked questions.
This answers all the usual questions I get asked regularly.
I have spent years fighting for benefits I can’t get that I should. I know 100% for sure what I can and cannot get. I have spoken to citizens advice, all the benefit checkers, DWP hundreds of times, MP’s many times, even parliament numerous times now too!
I have done all I can and I can’t get even a penny more than the PIP I get.
I can’t get any extra help either like warm home etc.
PIP is all I can get 100%. This is correct, but a lot of people when they hear that try to either question it or tell me to apply for things I can’t get. These FAQ’s will cover all this, but I cannot get a penny more 100% fact.
If there isn’t something you wanted to know here, feel free to ask on Twitter! Just please check first as almost everything is answered here!
I update this as needed.
Q: Why won’t you reply to every question you get?
A: As I say on here in many posts (even above) I can’t type long as it makes my chronic pain and fatigue dramatically worse to the point I am in agony from just a few lines and am close to passing out from the pain and fatigue!
I used to answer every question, but after 3 years blogging and on social media, I found I got the exact same questions as much as 30 times a day! If I reply, they ask MORE questions that I have answered 100 times already.
So I made this FAQ and the about me so that I could give them the link instead so they can read the answer here! It saves me so much pain and fatigue!
Sadly though, many people either refuse to look or just ignore me and carry on asking the same questions! So it doesn’t always work.
Not sure why some people literally ignore when I say “I can’t type long due to pain and fatigue” or “I have answered this a thousand times before so I have a FAQ” and just carry on asking the same questions even after I explained why I can’t type it all out again.
I get told by people that I should ignore them and just scroll past. So I tried that, but I found people then say you are avoiding the question! I really can’t win!
I will say again, typing is extremely painful and draining for me and leaves me in extreme pain, close to passing out. I will not answer the same questions I have answered 100 times before on here, on social media and even in videos! READ THIS FAQ INSTEAD!!
Q: How much do you pay for your medications a month?
A: I pay just under £11 a month NHS.
I also had £195 a month none-NHS for total £206 a month prescriptions, but I cannot afford the non-NHS medication so I am in extreme pain all the time due to this and just get the NHS ones instead.
Q: How much do you get a month
A: I get a total of just over £300 a month before any outgoings which is horrific and not enough to live off so I struggle every month!
Q: Why can’t you work? Lots of disabled people work?
A: This is an ableist question I get asked from trolls or people who are ableist… my about me and faq has detailed info on this.
I cannot work at all anymore as my chronic illnesses are so severe I am bedbound without painkillers and even with them I can barely move an inch, leaving me confined to my bed or chair, barely able to move in agony! Plus speaking is so draining that I pass out if I talk to type too much!
I worked for years more than I should have as it was like torture and I worked so much more than I should have to the point I cannot get ESA because I worked part time instead of quitting when I should have so didn’t pay enough national insurance!
Stop being ableist and if you spent 2 minutes reading either about severe chronic illnesses or about my about me or faq instead of being ableist and hateful, you would understand we are all different! Some disabled people can do everything anyone else can and others can be bedbound constantly.
Q: Have you tried looking what benefits you can get?
A: Yes I have (hundreds if not thousands of times over many years) and I get the only one I qualify for which is PIP.
I don’t get anything else as it is either I haven’t paid enough NI credits or because I don’t live alone, their finances get taken into account. This means I can’t get ESA, UC, warm home etc.
I have researched it all and spend many hours over the years trying and fighting but you can only apply for what you are eligible for, even with the ridiculous rules.
People fall through the gaps due to the requirements of each benefit. Go read the requirements yourself and see. You don’t just qualify for all benefits because of disability and no money. It doesn’t work like that.
Q: Have you spoke to a benefits advisor/MP/DWP
A: Yes! I have spoken to hundreds of benefit advisors, citizens advice, my MP many times, the DWP hundreds of times and even parliament eight times now! I’ve now spent YEARS fighting but there is nothing I can do.
Q: Have you tried benefit entitlement checkers like Turn2Us
A: Yes many times! I have done them all and re-do then every few months! Turn2Us, citizens advice, entitled to, Government site and more!
As I said, I don’t qualify for anything else or I would be claiming it! I am not just sitting here saying I can’t get more without checking, I have been fighting for well over a year for more money, but I can’t get more as I am excluded usually because I haven’t paid enough NI credits or because I don’t like alone and their finances get taken into account.
If you go to the gov.uk site and read the benefit requirements, you will see what I mean. You can’t just get a benefit because you are disabled it doesn’t work like that! There are requirements that you must fulfil!
Q: Do you get ESA/UC?
A: No to both!
Well I actually get credits only ESA, so I get the national insurance credits from it, no money, and am in the support group as I had to do the same application as everyone else just to get NI credits. No money. Credits only ESA = no money.
Will need multiple full years credits to get the money which will take longer as I applied initially mid way though a year so that half year is void unless I could pay the other 6 months of it to make up the year which I cannot as I live on a poverty income!. What a joke.
Even though I can’t work and am disabled with numerous chronic illnesses, I don’t qualify due to their rules and requirements which is ridiculous. Basically the fact I worked part time for as long as I could, rather than to claim benefits early, means that I have paid National Insurance so I don’t qualify for ESA.
It has been years now, it is not for lack of trying, it is that you have to meet their requirements exactly or like me, you don’t get a penny!
New style ESA is the only ESA for new people now which is contribution based. Income based ESA is now replaced by Universal Credit which I can’t get either as it takes into account your households income. As I share a house as I can’t afford rent on £300 a month, their income gets taken into account which is ridiculous.
I cannot get ESA or UC, hence am on just over £300 a month total income.
made it so I can’t get ESA.
Can’t get ESA due to national insurance credits and can’t get UC because I share this house with someone else due to being unable to afford rent anywhere. As I can’t afford rent, I can’t show a tenancy agreement so they just assume you’re together unless you can prove otherwise, which I can’t as how do you prove that someone lets you live here for minimal costs?
Catch 22 situation. Would be homeless if not here as I can’t afford rent, but if I stay I can’t get UC.
I worry about the future as I am sure one day either we will argue (as we don’t get on all the time) and I will be forced to leave and live on the streets. That is a big worry of mine and one day I am sure I will be asked to leave. I just won’t have anywhere to go to.
That is the sad state of England. No other country penalises you because you worked part time instead of just giving up working sooner.
If I had of just given up working sooner and not worked part item, I would be able to get ESA! Absolutely ridiculous!
Q: Why can’t you get Housing Benefit?
A: Because housing benefit (as well as others) longer exists for new people and is now Universal Credit (UC) as many other benefits are also being replaced with. I can’t get UC as I don’t qualify, as I mentioned on this page, just above this.
Q: Have you tried phoning them as you should get ESA if you are disabled
A: As above! Yes, hundreds times. I can’t get it as per above. I even get the NI contributions from ESA as I get credits only ESA, but I cannot get the money until I get enough NI credits.
Q: You are wrong, I get x or y!
A: As above! No I am not wrong! Read the requirements of each benefit on the government site, read the restrictions and eligibility requirements and read what I wrote here. I can’t get anything more. You have to fulfil all the requirements! What you get will be different to me. Your situation won’t be the same as mine! Just because you get something doesn’t mean I will. All benefits have eligibility requirements and you have to tick all the boxes. Check the government site. It shows you clearly what you need to get which benefit.
National insurance credits is the main reason I can’t get ESA, followed by the fact I share a house so their income gets taken into account as I can’t provide a tenancy agreement obviously as I can’t afford rent, so can’t get UC!
Some people think just being disabled means you get enough to live on and just automatically qualify for all benefits. This is NOT true. You can see for yourself if you read the requirements. You don’t just qualify as you can’t work due to disability. It should work like that but it doesn’t. They have multiple requirements of each benefit. Go read for yourself.
Q: Can’t you just work from home?
A: No! I cannot work at all. Working from home is still working!
I spent over 4 years in total trying things to see what I can and can’t do in regards to side gigs or other jobs.
I started looking while I was still working part time but struggling to work there and knew I would be leaving soon. This was before my health got worse too! This is before I became bedbound and I couldn’t do them back then either!
My blog is about all I can do BUT I don’t earn a penny from it. I have minimal ads which only earn money if they are clicked, which they aren’t ever clicked sadly.
I cannot do side gigs either such as fiverr or freelance work.
Basically I can’t do anything that involves talking, typing, using my hands for a almost anything as moving them is draining and painful. Yes, that is most things!
I spent years trying things to see what I can and can’t do and this is why I know what I can and can’t do.
I am bedbound for 3 days if I stream a simple easy game using a controller on Twitch. 3 days and soon to be 4 days. It used to be 2 days so it is getting worse as time goes on. I cannot work at all.
Q: You should speak to a benefits advisor then
A: I have hundreds of times! Please read the other question and answers. I have spoken to everyone I can and done every benefit checker known to man as well as call anyone and everyone I can! This is not a case of me being stupid, this is a case of requirements for each benefits. People just don’t read the requirements and assume things wrongly.
I know my situation better than you and I have spoken to them many times over multiple years!
Q: Can you get any grants?
A: No. Not one. I have checked for around 4 years, checking again every month or two but there has never been even one grant I can get. I have used numerous checkers and also manually checked sites myself.
Q: Do you get warm home for your energy bills?
A: No I do not. I cannot get it as I can’t get the other benefits (as stated above) so I don’t qualify. The eligibility is stated on the government site. There is a core group and a broader group. I can’t get either as I don’t get a qualifying benefit.
Q: Do you get WaterSure?
A: No I do not qualify as I don’t get the required benefits to qualify.
Q: If you call your council they have help available
A: I have called/emailed them about 100 times in the last year alone, if not more. They cannot help me as they told me (multiple staff told me) their help requires you have certain benefits (such as UC or ESA) to qualify. Even for the extra help available due to the cost of living and energy crisis. I don’t qualify.
As those benefits are awarded when they have done certain checks on you etc.
Without those benefits, they will NOT give anything. All councils are different, but mine requires you have certain benefits. All benefits that I cannot get due to my living situation (see other FAQ’s about benefits I can’t get)
Q: So what do you get then?
A: As I said, just PIP which is just over £300 a month. That is it!
I still have to pay for bills like everyone else plus food, medication totalling £206 every month! Do the math and you will see it doesn’t add up.
Can’t get ESA
Can’t get UC
Can’t get Warm Home
Can’t get Water Sure
Can’t get any other help whatsoever from this awful government who don’t care about people like myself.
Q: Do you have any relatives to help?
A: My parents and grandparents are all dead and I have no relatives at all, such as siblings or aunts/uncles/cousins etc, there is just me.
Q: Why don’t the DWP help you more?
A: They have specific eligibility and if you don’t meet all, you don’t qualify. It’s that simple! Too many people think all you need is to be disabled and bang you get ESA and UC. Not at all!! You have to qualify by fulfilling all the requirements! Go to the government site and check ESA. Look at the requirements. Those are eligibility requirements that you HAVE to meet. You can’t meet all but 1. You have to tick all the boxes as I like to say. You need to qualify.
I can’t afford rent anywhere in the country, not even council house rent as I just get £300 a month. That means no landlord. I share this house with someone who lets me live here for minimal costs. I towards bills, my medication and my food etc. Their income gets taken into consideration as well! That’s why it’s so ridiculous. The government is Tory so it’s unlikely to ever change. If I wasn’t here I would be homeless so I am grateful I have a roof over my head.
Q: But you get so little that surely they have to help
A: No they don’t. This seems to be a misconception that you can just get money if you get less than it costs to live. You can’t! You have to qualify for specific benefits in full. you can’t just tick all but one box.
All they have to do is give you what you are eligible for. Due to stupid technicalities such as not having paid enough national insurance due to working part time before being unable to work at all actually punished me and is the reason I can’t get ESA.
Because I pushed myself to work part time for as long as possible rather than taking government money, that made it so I can’t get ESA.
They don’t have to help you if you don’t tick all the boxes and qualify fully.
Q: You can sue your landlord because of the mould, damp, flooding, broken gutter <or insert anything here>
A: As I have mentioned, I don’t have a landlord as to have one, you pay rent and have a contract with the landlord. You know, that thing called rent that I can’t afford on £300 a month?
As I keep saying in so many blog posts, tweets etc, I have barely any income and a little over £300 TOTAL INCOME A MONTH isn’t enough for rent plus bills and food anywhere! So I can be homeless or here. You don’t sue someone letting you stay with them for minimal costs, who isn’t your landlord….
Q: You must be in a relationship then! That is why you can’t get more money! (this is something only trolls like to say)
A: Why? Because we live together? Billions of people share houses. Are they in a relationship too?
It is called house sharing… Search it!
Do even the most basic research at the cost of rent and living and take my £300 and work that in. You try live on £300 a month, plus bills, medication, food etc. You can’t. You have to live with someone to be able to live.
I literally was going to be homeless and I got to live here! This is the only place I can live otherwise I am homeless!
I would be on the streets if not here. We argue a lot and don’t get on a lot of the time, but I can afford to be here and it isn’t the streets!
They are not the reason I can’t get ESA either. As I said, it is national insurance credits as I worked part time as I couldn’t work full time. That is why I can’t get ESA. They are only the reason I can’t get UC. Not ESA.
Q: Have you asked to see if you might have fibromyalgia?
A: It is not Fibro. My CFS started when I was about 10 (hard to remember exactly) and the chronic pain when I was about 21, albeit mild back then. They are 2 different conditions. Also I have no good days, which with fibro you have good and bad days. I have no good days. I have bad and horrific.
I had multiple doctors try to assume it was fibro. They didn’t read all the info and read pain and fatigue and jumped to fibro. I told them the conditions started decades apart and the conditions are very severe with no good days ever. They then confirmed I was right and it is NOT fibro! I had almost all doctors jump to the assumption it is fibro and I had to them THEM why it was not and they agreed. Every single one.
This happens too much with people. LOTS of people are wrongly diagnosed fibro when it is chronic pain and cfs which are not the same as fibro. Yes the symptoms are similar, but fibro is a condition in itself. I have multiple separate and very severe conditions that leave me housebound and unable to walk far or stand more than a couple of mins.
Sadly way too many people get wrongly diagnosed fibromyalgia when it is not that at all.
Q: Have you tried cannabis?
A: Yes I was legally prescribed it as I got some money crowdfunding and it worked very well (actual cannabis, not CBD!), but I can’t get it on the NHS for pain and I have to get it from a private doctor which costs hundreds a month so I had to crowdfund it but the money ran out when I hit £1,037 which was just a few months supply so I just have my fentanyl and morphine now which leave me with numerous side effects as well as making my chronic fatigue worse. I would give anything to be able to afford medical cannabis oil and flower and leave opioids behind but I can’t afford to.
Q: Have you tried stopping the opioids? I heard they are bad.
A: Firstly, illicit opioid abuse is an issue, but that is illicit, meaning illegal. Patients that use opioids rarely abuse them, it is actually just a small amount that actually abuse them! Illicit opioids are abused very much so, but because of that, pain patients get screwed because they are using opioids and all opioids are now put in the same basket even though they are nothing alike!
Doctors are taking people off their painkiller because of people who are using illicit opioids. Nothing related at all other than the word opioid.
Pain patients all over the world are being taken off their painkiller and many are killing themselves due to the pain they have. Meanwhile doctors don’t care about people in extreme pain, as they are being forced to take people off opioids due to targets for having less people on opioids.
To put it bluntly, because people abuse illegal opioids all over the world, legitimate chronic pain patient are losing their only painkiller that works because of targets to reduce the amount of people being prescribed opioids.
I have had numerous doctors and medical staff try to take me off them but they know I will die. They know my pain is 10 out of 10 without Fentanyl. So they don’t take me off, but they keep trying. I just had a call last month trying to take me off from someone I had never spoken to. She said she was trying to get every one off opioids if she could. THAT is the main issue, not opioid epidemic which should be renamed “illicit” opioid epidemic.
Q: Have you thought about buying <insert anything here>
A: I have £300 income a month before bills, I don’t have the money for anything! Not even something cheap!!
Q: Have you tried <insert anything here for my chronic illnesses>
A: Yes I have tried literally everything over the actual decades I have had these conditions and no it doesn’t work (full list on my about me page). I have tried everything on the NHS as well and am on the last and strongest painkiller available!
Q: What do you eat?
A: Before February 2022, I had just two small meals a day costing a total of around 55p a day. I have a small bowl of value priced cereal or oats and UHT milk for breakfast/lunch and for dinner I have things such as value pasta or rice and often something frozen such as value chicken with it.
Nothing special but there isn’t much you can buy for such a little amount of money.
I cannot cook food as I don’t have the health so I can’t cook from scratch anyway but the lack of money and the bad health mean it has to be very quick and cheap things no matter how boring they are.
As of February 2022, food prices are through the roof due to the cost of living going sky high, so this doesn’t give me enough food anymore. I was having two small meals, now it is enough barely for one small meal so a can of value beans for dinner is very common. Gross but not much choice.
Plus energy prices being so high food or heating is a choice lots have to unfortunately make. I won’t have heating in winter or again with prices this high.
Q: How has the energy prices affected you?
A: Severely! I won’t be having any heat in winter or ever again due to the prices of energy being so high! I used to pay around £1000 a year in energy, but from April 2023, it will be £3000 a year!
That means no heat for YEARS to come! I am home all day too!
There was a 61% price rise on energy last October 2021, 34% (I think) in April 2022, a even bigger rise in October 2022, another coming January 2023 and then there is a even bigger one in April 2023 of £3000 a year!
I need heating but can’t afford it on!
I am already over £700 in debit for energy as it is and my £150 received in 2022 for being disabled in the cost of living crisis, went on energy bills and it didn’t make a dent as energy prices went up again!
Q: But you need heating or you could die
A: I know this and the doctors have warned me I could die from the low temperatures, but there isn’t anything I can do. I can’t magic money out of my butt.
Q: Why is your house so cold?
A: This is one I get asked a lot. This house is 3c-7c all winter 3c-10c most of the year. This is because of a few reasons. Firstly, it is 2 FOOT thick sold stone walls. Stone is terrible for heat retention and these stone walls are from the 1800’s. Secondly, I still have a broken gutter as can’t afford to ever get it repaired, which pours water down the walls, into the windows too, coming inside the house causing other issues too! Thirdly, I have a broken soakaway that the broken gutter goes to. This comes up to the wall and is like a pond next to the wall all the time. The fourth reason is we flood to the door in heavy or prolonged rain. And finally, the fifth reason is a broken damp proof course and the company went bust so can’t get it sorted.
All these cause massive damp issues. MASSIVE! I have mould and damp in all rooms. It adds to the cold and inside if often the same as outside due to all these reasons.
Q: Won’t you get the £650 for disabled people on ESA and the £150 for disabled people in the cost of living crisis?
A: NO! I can’t get the money from ESA (am on credits only ESA) so I cannot get the £650! I will only get the £150 which doesn’t do a thing with the high prices of everything now. I am already £650+ in debit for energy and this is before the huge price rise in October!
Q: Why don’t you cook from fresh?
A: Quite simply I don’t have the health or money. I shop once a month and get my groceries delivered. I can’t go out and don’t have a car. I can’t shop more often as it costs so much to get it delivered with delivery fees and minimum basket fees. I order enough to last me all month so the food is packet, dried or frozen. I can’t get fresh as it goes off quickly and costs more then the saver brands I buy.
I can’t cook anymore due to my chronic pain and chronic fatigue. I can’t even do it sitting down.
Q: You should cook in bulk and freeze it
A: I can’t cook as I said due to my chronic illnesses/disability. I only eat things that are simple to prepare and around 30p a day, so a can of beans as my only meal a day is common.
I can’t go out to shop and can’t shop online for groceries more due to the minimum basket amounts and fees plus delivery fees. So I can only shop once a month and it is only cheap things that can last a month. Nothing fresh and nothing that needs work to prepare as I am disabled and CANNOT do it!
Q: You should invest in a dehumidifier which will help with your damp and cold temperatures
A: I have no money as I keep saying. If I did, I would love a new dehumidifier as I had one but it doesn’t absorb water anymore and costs 4-6x what a new one costs to run as mine is over 20 years old, plus is so heavy too you can barely move it.
Q: Are you wearing layers?
A: Always! While sat inside I am wearing: a hat, gloves, 3 layers, 1 dressing gown, 1 thermal layer, 2 pairs socks, thermal neck warmer, 2 blankets and a 13.5tog duvet!
Q: Do you know how to calculate heater running costs?
A: Yep! It isn’t hard. Plus there are even sites that do it for you such as this one which I like.
Q: I am sure you can get more money, you are probably just working it out wrong or aren’t looking correctly. I could go through it with you as I know I am right and you just need help!
A: I think the thing I hate the most, is that I do get treated as though I am stupid quite often even though other than brain fog and fatigue from chronic fatigue, my brain is the same as ever! I am not elderly either.
Everything I state is correct and I even explain it all on my about me and faq, yet people will refuse to read and just assume they know best. They push and push you to explain the things I said are in my faq 5 times, but they ignore and just keep pushing for me to explain to them, instead of them just going to read.
Updated 21st December 2022