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 £300 a month.
From February 2022, the cost of living went sky high and is still increasing. In April 2022 it got even worse and will get worse again in October.
That means I can’t afford as much food and struggle even more just to survive!
I can’t survive on £300 a month. 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.
I don’t qualify to get ESA even though I am disabled and unable to work and am therefore living on around £300 total income a month! 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!
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 as all I get is the little over £300 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 £300 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.
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 painkillers it is at 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 that most of the year. About 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, I can’t type much because of my pain (and my 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!
I use a stick to walk 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.
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 a form of a life at least even with the horrible withdrawals that I have from it that leave me with chills, sweats, more pain and more fatigue.
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 run out of my painkiller and without funds I can’t buy it so I will be back to just being on Fentanyl and Morphine.
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 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. 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 also don’t get any National Insurance credits due to not qualifying for the benefits that give it such as ESA, meaning I won’t get a pension when I am old either.
I get £300 a month and live off around 50p-60p 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. Yep I am still hungry all day as it isn’t enough.
As of February 2022, food prices are through the roof so this doesn’t give me enough food anymore.
I don’t have any relatives alive so I don’t have support from there.
My medication costs £206 total a month for my medical cannabis and my NHS prescriptions. I can’t afford the cannabis which helps my chronic pain so much, so I can’t get it. 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 an ad but I don’t get anything from it yet.
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 at least 36 hours 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.
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 is my only contact with people.
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 19th May 2022