Saturday May 9th: Starting this project
Let’s start with a few questions:
Who are you?
I’m a single woman in her 40s. I live in London. The part of London I live in is a bright royal blue. So is a lot of the rest of Britain since the General Election of 2 days ago confirmed a Conservative – Tory – majority in the UK.
My name is Lindy. Nice to meet you.
Why have you started writing this blog?
I’m a writer and and educator so I like to communicate. Thing is I’m usually not well enough to take on board writing a lot.
Now, though, it’s even more important to speak up and tell my story than ever.
Until now I’ve not written about my health condition – MECFS – because I have to carefully limit what I do on a daily basis to cope with my disability you see.
I haven’t always been disabled and ‘on the sick’.
Until 2 years ago I was a normal, happy, healthy, productive person. Then I got ill with MECFS. Usually talking about my disability is reserved for the people who know me well.
Until the midst of a sleepless, shocking, anxious election night on Thursday to Friday this week, I’ve not wanted to write about my life as a disabled woman.
Inching towards the Tory majority
As the TV screen inched and crawled towards confirming my worst fears that the UK would be run with a Conservative majority, I asked myself what was possible to battle against the worst electoral decision in decades for sick, ill and disabled people in the UK.
I didn’t put my tick in the box for a Conservative candidate. I wouldn’t ever vote Tory. I have a long memory of the 1980s when they made decisions that were eviscerating for communities and individuals in the UK.
I also wouldn’t vote Tory because they were explicit about cuts that would come if they were returned to power.
Why is a Tory government so bad for sick, ill and disabled people in the UK?
In the Conservative manifesto it sets out a clear package of reforms to “Welfare.”
People like me who worked for a long time before becoming to sick to work can apply for Employment and Support Allowance or ESA. ESA is Sickness Benefit.
I’m a welfare benefit reliant disabled person
To be clear about what this means for me:
- Housing benefit pays my rent which keeps me housed
- I don’t pay council tax
- ESA means I can pay my household bills like electricity, water and broadband
- ESA pays for the food I eat
- ESA pays for the travel to my endless health appointments for treatment
Dirty benefit scrounger…
I so am! Banged to rights there. You’ve got me!
Let’s have a look at some of the front pages of newspapers that tell you what and who I am, shall we?
And I could do without memes like this in my sight line as well:
What’s your disability like?
Thank you for asking. It shows that people are really interested in what my health condition is like, rather than believing the narrative and rhetoric that is whipped up by the press and people who believe what the press say.
There are some nasty, bad and wrong opinions out there. I hear and see them every day.
Here’s some myth busting for you
I live a very restricted life. I am mostly house bound because my illness is made worse by exertion. It’s got the name CFSME here in the UK. In the USA they’ve proposed renaming it to Systemic Exertion Intolerance Disease or SEID. That describes it well.
I don’t spend all day watching daytime TV and popping down the pub for endless pints. I live a life of extreme austerity. Proper austerity. I don’t buy take aways or go on holiday. I last had my hair cut in 2013 – I can’t afford it.
The reality of living on benefits
I can’t afford to heat my home properly during winter because ESA doesn’t cover paying for that as the bill is very expensive. So during winter I wear a hat and gloves in my house and run the central heating once a day. I live out of one room, my living room. I sleep on my sofa and close all the doors and curtains during winter to keep the cold out.
I can’t get a council house because of the council housing crisis in London. I can’t move home because no landlord will accept tenants on benefits in my local area.
Once a week a family member gets my shopping for me. Luckily I have some shops over the road so I can get there and back for a pint of milk and essentials like loo paper. No Frills loo paper, of course. A packet of the stuff that has soft quilts seems as luxurious as a summer holiday for 2 weeks in Barbados.
A few times a week a good friend comes over and keeps me company. This is so important to me. Until you’ve been house bound you have no idea how having company at home can buoy you up and make the day complete.
Aside from those visits almost all of my entire social contact is electronic. Without broadband I’d be completely socially isolated. I really have understood how awful it is for the elderly and alone since I’ve been ill.
I don’t have cable TV it’s too expensive. I only run my hot water once a day to enable me to have a bath because the electricity heating bill is too much if I run it all the time.
And that’s not all…
How my disability affects me
I can’t tolerate physical or mental activity in the way non-ill people can.
Walking too far leaves me exhausted. A day of walking around my home, getting up, having a bath, cooking and clearing up will be enough for me to cope with.
I’m sometimes incapable of lifting myself out of a bath or off the sofa which is where I spend most of my time when I’m not sleeping.
On bad days I feel the need to sleep for more than 14 hours each day. It isn’t a good sleep, it’s a sleep that washes over me like an exhausted cloud, pulling me down and into it and leaving me needing more.
With it comes mental exhaustion. I forget words, appointments, names, dates, I once forgot how old I was. My mind was so clouded with something called brain fog that I told someone I was 2 years younger than I am. I wasn’t trying to get away with reducing my age, honestly, my brain malfunctioned.
I can laugh about that now, but at the time I couldn’t remember!
Writing this blog
I can only write this blog first thing in the morning straight after I wake up when I have some mental energy. I’m already feeling the familiar sensation of creeping exhaustion claiming me now I’ve written this much. I’ll have to stop soon or I won’t be able to speak, get up, think or do much more today.
If I do too many things, too much activity, I am floored by it for days. I feel like my body is on fire, I’m wracked by migraine headaches after walking too far, muscle pain or sore throats if I do too much.
If I push myself physically my brain, hormones and then my womb reacts. TMI warning: I bleed at the wrong times in thick, slow, blackish, gloopy blood. When I had this investigated the diagnosis said that it’s one of the things that MECFS is doing to my body.
Not much socialising either
I can’t talk to people for too long except through a computer because if I use my voice my throat gets very sore.
Think about it – think about talking – how many muscles do you use? Well talking requires your mind and body working in unison. Both have stopped working properly and so talking is another limitation.
Socialising with people really is draining. Even with people that I know, like and love. It takes it out of me and it takes a long time to recover from. I spend most of my time alone, at home, doing things to keep the worst of the symptoms under control.
People really don’t understand MECFS. There’s no identified cause yet although research is trickling through . In the UK there is no cure except for adapting to the limitations it brings.
There are no pills to take, no cure on the horizon. The only thing I can do is adapt and limit what I have to do daily.
My NI contributions should not pay off the deficit
I worked for over 25 years paying National Insurance contributions believing there was a welfare state and that I’d be supported if I ever needed to use it.
Before the last 2 years I’ve NEVER been on any benefits . When I worked, I worked in both the private and public sector. I’ve worked in the NHS, in the arts, as well as being an educator. I became a writer later on in life.
I passionately believe that our welfare system and the NHS must be there to help the poor, sick and the vulnerable.
I have a strong work ethic. If I could work, I would.
Dirty benefit scrounger? No
Unfit to work. Abso-bloody-lutely!
The news that I might be on the receiving end of Tory cuts has left me shocked, worried and horrified.
I was kept awake all night on Thursday because I was filled with adrenaline from profound shock at watching the country turn blue.
With it, my hope that there’d be a judicious approach to how sick and disabled people receive welfare trailed away like the confidence in the polls.
We now do not have a have a hung parliament that could oppose the worst of Tory cuts.
I appealed and won and I am now in the Support Group. That appeal took a year and profoundly affected my health while it happened.
And now I am told that with the majority the welfare reforms will go through as planned….
During one of the most famous times of austerity, during World War 2, an organisation called Mass-Observation asked people to keep a diary of their experiences. I’ve read extracts of these diaries in a book called We Are At War by Simon Garfield.
Their stories illuminate how real life was for people struggling throughout the war and it has inspired me to write my story.
This is my blog about what happens from now onwards.
I’ll try to write when I can.
Thank you for reading and following me.
© Lindy 2015