Wednesdays are a different day from the rest of my week because my 75 year old Dad comes to visit me at home.
I cook homemade vegetable soup for our lunch – it’s cheap and he likes it – and I listen to him talking about all the things that have happened since last week and what his new interests are.
Dad’s one of those silver surfers who is a poster boy for how to enjoy your retirement.
I could have never predicted that I’d have ME to make this lunch date possible for both him and me. At our respective ages I should be at work on a Wednesday. Until 2 years ago I would be at work on a Wednesday.
Every week before he arrives it is added pressure; I have to make sure I get up early, I have to cook in advance, often he sees me when I haven’t had a shower because I’ve not got up early enough and I rush around making sure the flat is clean and presentable.
Despite this usually afterwards I feel changed, filled up and different for his Wednesday visit.
It divides the week up making the hours alone resting and being quiet in the days around it less onerous and when he leaves at about 2 o’ clock I feel frazzled and tired, but that it’s been worth it.
Living alone and being unwell is an exercise in how to keep yourself fulfilled and sane
I don’t know how people did this before social media. It must be so painful to be ill and alone with no way of reaching out to people.
ME makes you so sensitive to sound, noise, exertion and expectation. Of course I do get lonely and want to see people but I have to limit that because I don’t have the energy to cope with sustained socialising.
I see people who I know well and won’t make my symptoms worse. Yes, I’ve lost friends too. It’s all been part of it.
Using social media is one of the main ways I survive. I need people as much as anyone does, but it happens in a different way now – it just has to. So having a visitor once a week is a big deal.
Election results – “Trust them”
Eventually the conversation with Dad worked it’s way around to the election results. He’d been keeping off it because he knew how shocked I’ve been and worried I am. Also, he voted Tory.
It went something like this:
“The thing is, Dad, they’ve promised welfare reforms and this does directly threaten my life as it stands at the moment.”
He says: “There needs to be change to the welfare budget. Far too many people are claiming who could work..”
“Look, Dad, I’m all for saying that people shouldn’t automatically be given welfare benefits but this idea that it’s an easy process is….well it’s crap. You don’t know because I haven’t told you, but the process of being assessed for ESA is so, so wrong.
“That assessment you and Mum drove me to that day, it was the worst experience I had and I was so ill at the time. They lied about things that I’d said during the assessment and if I hadn’t been the sort of person who stands up for themselves and knows how to fight a corner and had been forced back to work… I ….well I think…..I’d probably be in the severe ME group today.
“It took SO long to appeal and I had to do on my own and with no help and no support – because they’ve cut that too – it made me so ill while it was going on. The system is terrible. Unless they address the system those words mean nothing. ”
Dad says kindly: “Dear, you have to trust them. They said they would protect people who really deserve and need it.”
“Trust them! That’s PR and spin! They already don’t protect people who deserve and need it! Have you read about people who have died after being assessed as fit to work, people who have died as a result of benefit sanctions? Food banks, Dad. There’s one on every corner…”
“Yes, that’s concerning, but you have to trust them..”
“How do we know exactly what they mean by “people who deserve it?” There are people who have severe learning difficulties that have been told they are fit to work, people with cancer who’ve been told the same.
“On good days and for short periods of time I come across as perfectly well but I’m not. It’s the system that isn’t to be trusted – their comments do nothing at all to reassure me. I’ll believe it when I see it.”
I pause and consider the difference between him and me. He gets me, he’s my father after all, but he doesn’t get “it.”
He has a state and occupational pension which is protected. He has a house which he owns. He has a bank account with an overdraft. At the end of his life he’s exactly where he should be and why not – he worked extremely hard in the public sector for years.
I don’t talk to him about how much I struggle to pay the bills and how bad my illness is most of the time or how much the fight to retain my independence has cost me mentally and physically over the last 2 years.
This conversation brings it home how much having my own space is an essential part of keeping well but then again at the same time it’s making me unwell because it’s so cold and damp during winter.
After he leaves I do a mould patrol. I find more of it in my bathroom, up the sides of a cabinet in the kitchen – which has no central heating in it – and I notice it on the back of a wicker basket that I keep medication in.
I tip everything out the basket and spray bleach all over the inside and outside. It’s not an option to throw it away and buy a new one, I have to make to and mend. I leave it outside to dry in the sun.
Then I check the weather forecast for Thursday. If it’s sunny that makes me feel less unwell because I’m so sensitive to the cold. My living room where I sleep and spend most of my time indoors is cold, even in blazing hot weather.
If it’s sunny I can go outdoors and rest and sleep on the sun lounger. When it rains even at this time of year the damp starts growing again around the door and window frames. It happens quite quickly so the regular mould patrol is necessary.
I have a bottle of mould nuking stuff and although it makes me feel unwell and dizzy using it, it’s better than having it everywhere – the smell gets into my clothes and furniture when it’s damp too.
Putting the heating on during winter would solve half of this problem but as I’ve said before, it’s electrical heating and I can’t afford it running for more than 1 hour a day.
This is why my home costs under the current housing benefit cap of £879.00 pcm. I didn’t know it would be this bad when I rented it, but I was desperate and I had no other option.
© Lindy 2015