About Me, My Conditions & My Medication
I am a lady disabled from England who suffers from Chronic Pain, Chronic Fatigue, Hidradenitis Suppurativa, migraines, sciatica/piriformis as well as some other conditions such as a perforated septum and severe acid reflux. My illnesses are all permanent and most will get worse as time goes on! They have already gotten worse over the years to the severe point I am at right now.
I blog about my conditions and my struggles in life as I am housebound due to the severity of my illnesses (mainly the chronic pain and chronic fatigue), which are debilitating and make it so I am disabled and cannot work. I only leave the house for medical appointments that I can’t do over the phone.
I thought I would start the blog so I could raise awareness of chronic illnesses and disability by sharing my personal experiences as so many people don’t understand the struggles some of us go through every second of our lives being chronically ill, disabled, housebound and living on a tiny income of just over £350 a month.
I fall through the gaps in regards to benefits due and this means that many people don’t understand why I can’t get more, which is why I explain in detail on this About Me and also inn my FAQ.
I can only get PIP and cannot get ESA due to national insurance credits nor UC. All explained in detail on my FAQ and below.
From February 2022, the cost of living went sky high and is still increasing. In April 2022 it got even worse and even worse than April in October! in January 2023 prices are going up AGAIN! Then in April 2023, energy prices are going up to £3000 a year! This is HUGE as I used to pay around £1000 a year back in 2021!
I cannot afford heating and won’t be able to for for complete future, unless prices drop which is unlikely.
I haven’t had the heat on since around February and won’t be able to unless prices drop which isn’t happening seeing as they are going up in January 2023 AND April 2023.
That means I can’t afford as much food and struggle even more just to survive!
I can’t survive on £300 a month (now just over £350 since April 2023). I just can’t. But I can’t get anything more. Even as the cost of living hits a crisis, I still get no extra help.
I live in poverty and have for a while, but as the cost of living gets higher and higher, I have less and less money to live on.
My money is gone in seconds on bills.
I don’t qualify to get the money from ESA even though I am disabled and unable to work and am therefore living on around £350 total income a month!
I get credits only ESA which is National Insurance credits only. No money. I had to do the same application as everyone else, same assessments and forms etc. Only difference is, I get no money, just national insurance credits, of which I need multiple years worth to get ESA.
I can’t work at all anymore. Yes that includes working from home too as it is all working which is impossible for me. I even spent a few years trying to do things to see what I can and can’t do. I can’t do anything anymore.
I worked for years as much as I possibly could, but I can’t do it anymore. My health is horrific as you will find out if you read on.
My blog is about all I can do, although I earn a big fat 0 from my blog!
I have minimal ads and that is the only income, if someone clicks the ads which they don’t.
As I worked part time I didn’t pay enough National Insurance as you only pay it over a certain threshold of income. That is the reason I can’t get ESA! Ridiculous reason but means I can’t get ESA for multiple years more.
Plus, as I applied initially mid way though a year, I lose that half a year! The only way I could get that year is if I paid for the other half of the year in money! It costs hundreds of pounds to do this and it is totally impossible. So I basically got kicked in the teeth by the government yet again for not signing up before April which is when a working year starts in the UK.
I can’t get any other money either. No extra discounts such as warm home etc. I can’t get a single penny more than I get. I live in poverty on my income and can’t afford to survive without help.
None of my conditions can be cured and I am in severe pain and fatigued 24/7.
I have a depressed mood due to being stuck in the house 24/7 usually 365 days a year depending on any hospital appointments.
I am stuck here where I live and cannot move. I can’t afford rent anywhere at all (hence no landlord either) as all I get is the little over £350 a month PIP. That is it! Nothing else and it is impossible to pay for rent, bills, food and medication on that! So I can’t move. I am stuck here or of I moved I will be on the streets and I can’t live like that with all my chronic illnesses.
This isn’t a choice, it is the only option. Here or the streets.
If you don’t believe me that it is hard to live on so little, I ask you to try to live on £350 a month before all expenses and see how you cope!
I thought I would list my conditions and how they affect me for those that aren’t sure what they are from the big ones that make me disabled all the way to the smaller ones.
I also list medications I have tried and my information on my financial struggles.
This is MY LIFE and I am choosing to share all this with you to raise awareness about chronic illnesses, disability, and what it is like to fall through the gaps of disability benefits in England in this day and age.
I am blogging about all this to show you how bad it is for people like me who fall through these gaps. That is one of the main points of the blog!
Please understand that I am just a human like you, trying to survive under Tory austerity.
I have 3 articles about me, one on the Examiner website, one on Cannabis Health magazine/website and one on the PLEA website.
Detailed Information On My Conditions
I have constant permanent 24/7 extreme 10/10 pain that without the strongest painkillers available, it is at 10 out of 10 which leaves me bedbound permanently, screaming night and day, unable to sleep much or do anything due to the severity. With painkillers I am between 6-9 depending on which as the medical cannabis costs a lot so I don’t have it at all now.
Pain is around a 8-9 with Fentanyl and around a 6 with just cannabis flower depending on how bad the pain is that day etc.
It massively affects my ability to walk, stand and do anything.
Even with painkillers I cannot walk more than about 50 feet without the pain getting worse and after 100 feet I cannot carry on and am in severe pain. I cannot stand for more than a few minutes nor can I bend down due to the pain.
If I do more than I should like trying to bend down or walk a little further, I will pay for it in days of crippling pain even with the Fentanyl and the Morphine.
Same with typing and even talking for a while! I can’t type or talk much because of pain and fatigue, and if I try to push myself a little and type a little more for example if a Twitter troll has a go at me, I feel like I have to reply so I push myself to reply and the pain and fatigue from typing gets worse and worse to the point I will pass out if I carry on from severe pain and fatigue. I then need days being bedbound because I typed too much.
People say ignore the trolls or the repeat questions, and don’t reply to them, but if I ignore them, then they have a go saying I am avoiding the question! I can’t win!
I use a stick to walk around the house and I rarely ever leave the house as it is too painful and I can’t afford a car. I am disabled due to the severity of this.
I spent all my time in my chair or in bed.
I had the pain for decades which gradually got worse over the years. It started mild and got worse as time passed.
I tried everything available over the years from things non-medicinal such as various physio sessions, exercise, stretches, mindfulness as well as various medications (listed below), gradually trying everything over a few years. Nothing did anything at all, not even a little and in fact, I mostly had horrific side effects. Then I tried Fentanyl which after increasing a dose I could tell was working. My doctor and I tried doses until I eventually got a dose that worked well and a time interval that works well. This took a year to perfect.
Before the Fentanyl, I was bed-bound all the time with the most horrific pain so severe that every second was unbearable! It felt like I had been hit by a sledgehammer over and over. The worst pain imaginable.
I would lay in bed and scream and cry all day and night. I could barely sleep much as the pain was too much.
I would never want to go back to that as it was unbearable, but my pain gets worse as time passes and the painkillers work less and less, so I will be here again one day.
The Fentanyl doesn’t kill the pain totally, but just lowers it to about an 8 out of 10 instead of a 10, and is the only thing that touches it that I can get on prescription. It allows me to be not bed-bound and not screaming in pain day and night.
I have severe withdrawals every 2 days (around every 36 hours it starts) as the patches run out a whole day earlier than they should. I get severe chills, sweating buckets with worsened pain and fatigue. It is horrific and every 48 hours!
They will eventually not work at all for me and I will be bedbound again when that happens. That is terrifying for me as I wanted to die back then as it is unbearable!
I take morphine for breakthrough pain but it doesn’t do much.
Cannabis works but I am unable to get that on the NHS and cannot afford it from a private doctor myself. I did manage to crowdfund it for a few months but at the end of October 2021 I ran out of my painkiller and couldn’t afford it again.
The cannabis would cost £150 a month (cheap trial price), then £45 for prescription and £65 every 3 months to see a doctor for 2 mins which is required by the home office as this country is so backwards and prefer to take the backhanded money they get from big pharma than let people have a painkiller with no side effects, impossible to kill you and none addictive!
I should add that the chronic pain and chronic fatigue I have are 2 separate conditions and are NOT fibromyalgia. They are 2 separate severe conditions that both started decades apart. I also have no good days like you do with fibro. I have bad days and horrific days.
I also have constant permanent 24/7 extreme fatigue that is very extreme. Everyday feels like I have run a marathon and not slept in weeks all the time, even though I sleep 11 hours a night and don’t move much in the day as it causes too much pain and fatigue. I am exhausted all the time and no sleep helps it. I fall asleep in my chair often or I go to bed to nap during the day as I am just so tired all the time.
When I wake after 10-11 hours I am still extremely fatigued. Any less than that is too little for me and I can barely function. Just moving exhausts me to an extreme. It is like trying to move though sinking sand just moving or getting out of bed. Absolutely horrible.
If I do too much the fatigue is even worse for days after.
I can’t type or talk for long as it dramatically worsens my pain and fatigue. I take days to write a blog post as I have to do small parts at a time. I used to be a secretary when I could work so it is something I used to do all the time and now I can’t do it for more than a few mins at a time!
This is an incurable permanent condition that affects my skin. I get spots, blackheads and very painful, very deep boils in various areas all over my body such as under my breasts, armpits, buttocks, thighs, around my private parts too which is awful. I have had it on my face and other areas but these are the main areas I get it.
It makes sitting and moving incredibly difficult when I have a breakout. it gets to the point where you can barely move without severe sharp pain. The pain of the boils is very high and they sometimes leak over a long period of time (days to weeks), slowly leaking blood and pus whilst still being very painful.
I get pain in my buttocks that runs down my legs and it makes it very hard to sit which is very hard when I am on my chair all day due to chronic pain and chronic fatigue. I can barely move so I can’t move around to help it, nor exercise. It is very painful and i have it everyday, some days are worse than others. I spend all my time in my chair or bed so I don’t get much relief from this condition.
I think it is piriformis rather than sciatica due to it being in my buttocks more, but the doctors here don’t do much in the way of tests. He diagnosed sciatica over the phone.
I get severe migraines usually once a month that last 5-7 days usually. They are debilitating and constant. I get very bad nausea and vomiting that no anti-nausea medication helps.
I can barely do anything when I get one and no painkiller helps. I started sumatriptan after asking my doctor numerous times for something to help the pain and it definitely helps reduce the pain, although it leaves you feeling awful but least it does help to reduce the severity.
I have a huge hole in my septum (the divider inside your nose) that is very big and scabs and bleeds sometimes. I have to moisturise it all the time to stop it getting bigger although it is much bigger than it used to be already.
It gets a little bigger every few months which is worrying. One day there is a chance it will get so big my nose will collapse which I am hoping never happens.
I have no idea why it started and the doctors didn’t do any investigations
This one most people will know although mine is severe so I have to take prescription medication for it rather than over the counter medicines which don’t do a thing.
Acid goes into my mouth and often vomit too (gross but true), and I have extreme burning all the time which makes sleeping difficult. Thankfully the medication controls this well. This is obviously the most minor condition but I wanted to list everything that affects me.
Now I have also developed multiple bladder issues and have been given medication for them.
I have developed tendonitis in my foot which is painful all the time and to walk on.
Not Yet Diagnosed
I recently have had four positive autoimmune tests:
Parietal cell autoantibody level Positive (Due to Mitochondrial Ab)
Mitochondrial antibody screening test Positive at 1/100
Anti SCL-70 AB Blot Positive
ANA test positive
Plus the follow up liver test came back borderline.: Serum alanine aminotransferase level 46 iu/L [0.0 – 40.0]
I am currently in progress with getting these diagnosed. I have had a referral to rhumatology for the SCL-70 test which could be many different things including sclerosis.
The B12 came back ok so I am not sure what will happen with the parietal cell results.
The liver came back with one borderline result and the doctor wants to just retest in 3 months, but seeing as it could be PBC, it shouldn’t be ignored.
I sadly live off one just benefit which is PIP as the government say I am not eligible for others such as ESA which is the main disability benefit nor Universal Credit even though I cannot work and am disabled!
I was working 16 hours a week as I physically couldn’t work full time anymore due to my chronic illnesses. My health deteriorated so I started working casual part time hours and then my health deteriorated severely so I couldn’t work at all.
Due to the hours I worked, I hadn’t paid enough National Insurance credits to qualify for ESA which is a ridiculous rule for getting ESA!
I worked as much as I could and this penalised me. If I had just quit working and never took the part time job, I would be getting ESA now. But as I wanted to save the government more money, I worked part time. This was the biggest mistake of my life as it means I didn’t pay enough National Insurance to get ESA, so this is why I cannot get ESA and live on PIP alone!
ESA is new style ESA which is contribution based. Income based ESA is not for new people and is now replaced by Universal Credit which I can’t get either.
I can’t afford rent anywhere and would be homeless on the streets if I hadn’t been offered to stay here at minimal cost. I pay towards bills etc. If I wasn’t here I would be on the streets with my chronic illnesses and disability. I couldn’t live like that. I am so grateful I have a roof over my head for now at least. I do worry about the future though.
As I don’t live alone, their income/savings/investments are taken into account so I don’t get Universal Credit either as the household income is taken into account as I can’t afford rent so don’t have a landlord nor tenancy agreement.
Catch 22 situation. Homeless if not here, but here I can’t get UC. I would be worse off if not here though as I also get some help with things.
I have no landlord as I can’t afford rent anywhere, so I live with a friend who lets me live here for no rent, I just pay bills and food.
Many people don’t realise that if you don’t have a landlord or tenancy agreement, the DWP will assume you are in a relationship and take their income into account unless you can provide a tenancy agreement.
A landlord gives you a tenancy agreement. No agreement = no landlord which is why I have no landlord.
Having someone say “come live with me for limited costs” isn’t a landlord. It is someone being kind and letting you stay with them. No tenancy agreement = no landlord = their income is taken into account.
So I can’t get things like Universal Credit because I share a house.
I get just over £350 a month and was living on around 50p a day for food until the cost of living went up which means I have around 30p a day for food, which is not remotely enough to survive off!
I used to have a small breakfast/lunch around 2pm of oats/value cereal and UHT milk then at dinner around 6.30pm I have a small warm meal with various cheap value brand items with things such as rice or pasta for dinner.
Although now since the cost of living crisis in 2022, I have just dinner which is often a can of value beans a day. Yep I am still hungry all day as it isn’t enough.
A can of beans all day in 1 meal isn’t fun.
I don’t have any relatives alive so I don’t have support from there.
The best painkiller for me sadly isn’t on the NHS and it cost £206 total a month for medical cannabis and my NHS prescriptions. I can’t afford the cannabis sadly even though it is the only thing to really help my chronic pain so much, but I can’t get it anymore as it costs money I don’t have, so I am just using Fentanyl and Morphine, which leave me with severe pain, awful withdrawals every 48 hours and worse fatigue.
I crowdfunded a few months worth which was a few months of bliss with less pain, but after the money ran out, so did the medication.
That as you can see is impossible for me to afford without help.
I don’t earn anything from my blog. I do have minimal ads but I don’t get anything from it yet as they only earn when someone clicks them.
I stream some games three times a week but I don’t earn more than $5 a month at most (you need $100 to withdraw, then fees and currency conversion fees on top) from that either. I stream on a laptop with a controller as I can’t use a keyboard, in my only chair in the house that I use to sit in whenever I am not in bed as I don’t have a PC nor room for a PC plus I don’t have the money for that anyway.
I don’t buy the games as I don’t have any money so I play old games, free games or ones I get free in return for streaming them on my stream.
I can’t do it anymore than three times a week as it aggravates my pain and makes my fatigue much worse plus it takes 3 days (soon 4 days as 3 isn’t enough now) just to recover from a few hours playing games on stream!
My pain and fatigue are dramatically worse after a few hours streaming and I have a headache or migraine after most streams. I immediately start crying after a stream as the pain is so severe I could pass out. I then eat and go to bed for 3-4 days.
This is my only real contact with the outside world as I don’t talk to anyone or see anyone ever!
Replying to a few people that type in chat (if anyone even joins which is hardly ever) is my only contact with people.
To make it worse, I have a list of things that need fixing that are causing major damage and things I desperately need but can’t afford:
- Gutter – still broken for 4 or 5 years now. This causes severe damp and mould on the entire back wall, plus water comes in through the window making it even worse! This really needs replacing but that is over £700 due to it being a listed property which needs certain materials and a certain style.
- Flooding – this happens every time it rains, even a little. When it is heavy rain, water comes up to my door. This is water mixed with sewer water too so you sometimes see toilet paper floating or poop which is disgusting, but this is a shared combined sewer so it is their waste!
This makes the front wall damp and mouldy, so both sides of the house are severely damp and mouldy.
- Fridge – after my fridge lasted just over a year, I need a new one asap. I need one with a freezer compartment for food. I lost some food when this broke which is a loss of food and money that I can’t afford. I have no way to get a new one without help and there are no free ones or even cheap ones on Facebook marketplace, Facebook groups, Freecycle, Freegle, or charity shops in the area.
If anyone can help, please do!
The only ones I found is one more expensive than a new one, plus collect only, then another one a little cheaper but collect only and miles away (I don’t have a car & can’t carry a fridge)
Medication And Treatments
Matrifen Fentanyl Patch 50mcg
Sevredol Morphine 20mg (breakthrough pain)
Amitryptline 10mg x3 at night (for migraines and sciatica)
Clonidine 25mg x2 a day (for withdrawal symptoms) (reduced dose as not working)
Metoclopramide 10mg (nausea)
Omeprazole 10mg (acid reflux)
Sumatriptan 50mg (migraines)
Clindamycin Lotion (Hidradenitis Suppurativa)
Hibiscrub (Hidradenitis Suppurativa)
Current Medication I can’t afford
Cannabis flower (crowdfunded – I ran out end of October 2021 so can’t afford this anymore)
Past Pain Medication
Matrifen Fentanyl Patch (12mcg – 75mcg)
Clonidine 50mg twice a day (for withdrawal symptoms of the fentanyl)
Amitriptyline (10mg – 2 at night)
Buprenorphine Butec Patch (5mcg – 20mcg)
Codeine (1 or 2 four times a day as required)
Duloxetine (60mg a day)
Co-dydramol (10mg/500mg tablets – 1 or 2 as required)
Gabapentin (300 mg – three times per day)
Methocarbamol (750mg – 2 four times/day)
Co-codamol (30mg/500mg – 2 four times a day)
Baclofen (10mg) for sciatica
Other Past Medication
Prochlorperazine 3mg 1 or 2 twice day (nausea)
Painkillers Unavailable On NHS
Cannabis (works but not available on NHS for pain)
Other Non-Medicinal Treatments
Physiotherapy (didn’t work)
Exercise (didn’t work)
Stretches (didn’t work)
Mindfulness (waste of time)
CBT (waste of time)
Updated 18th May 2023