I thought it might be a bad idea to write this blog when I was angry and fed up. I didn’t publish it straight away. Now I have read it back it starts off sounding like I’m saying “life isn’t fair, boohoo.” If I was being brutal I could say the same for most of my blog entries. I know life isn’t fair and I accept that. As I’ve said before the blog allows me to “get things off my chest.” Like other entries I think that there are others out there who might be experiencing the same problems and it’s sometimes reassuring to know that you aren’t alone. Sadly it doesn’t fix anything. We each have to find our own way to manage but maybe in sharing it helps other people a little.
The summer is rushing by and I am sitting in my home, drinking a healthy smoothie and feeling poor. I have not been able to work for some time now and the effect of being out of work is beginning to take hold. Savings are disappearing in order to pay for everyday bills and the insufficiency of welfare benefits is becoming more apparent every day.
We live in a three bedroom bungalow. I chose to move to this house just over 14 months ago because I knew my mobility would soon be compromised and I would not be able to manage climbing stairs. The children are getting older and need their own space and privacy so separate rooms are a good idea. This house also has a separate en suite bathroom, this has been a boon because when I’ve been ill I couldn’t manage to walk any distance so having a bathroom right next to the bed was a godsend. We’re lucky and have more than a lot of people. I know many families that have to endure horrible living conditions. I have been lucky enough to find a home like this but now I am out of work it’s hard to pay the rent. It is difficult to pay the council tax. I am being penalised for living in a house that meets my families needs.
I don’t live a luxurious lifestyle. I don’t have many expensive possessions because I don’t care about things. Toys and baubles are of little interest to me. The vast majority of my clothes are second hand from charity shops or bought on eBay. Why would I pay the full price for a brand new jacket when I can buy one for a fraction of the price that has been worn but is still in great condition? I see no reason. My eating habits are frugal. I don’t dine on lobster every night. I don’t smoke. My alcohol consumption costs about £5 a week.
I have a subscription to Amazon Prime, which I bought 10 months ago and costs the equivalent of £5 a month and Netflix which is about £6. I cancelled my Sky TV subscription, because it is too expensive. My mobile phone is second hand and I am tied to a tariff for another 6 months. My broadband costs £7 a month. I am tight-fisted by nature.
I have booked a holiday abroad this summer. That money came out of my savings. It is a luxury, I admit. Lets face it I don’t know how long I have left on the clock and I’d like to see some other parts of this beautiful world before I check out.
So aside from booking a holiday I live a fairly frugal lifestyle. Yet I feel as though I am being squeezed by the authorities to scale back further. A couple of weeks ago we received some extra tax credit support because I am not able to work and they took that back by reducing the housing benefit and council tax benefit I’m entitled to. What is given with one hand is taken with the other. It is like a backstreet con trick. While I am watching the cups being switched around, hiding the one elusive ball, the conjurer is removing my watch and wallet.
I feel fine right now. I am not receiving treatment for AS and my phantom pain is manageable. I know that I am likely to start treatment for AS again in August, just a few weeks away. I would like to go back into work so I could take this financial worry into my own hands and solve the problem. However I won’t be able to work if I restart chemotherapy and/or become more sick and a new job will not afford me the benefit of paid sick leave. Therefore I will be in a worse financial situation.
I have been in constant employment for 17 years with different employers. I feel as though I am failing my family. I could have chosen a different career path, one that paid better so I could have saved more money. I could have bought a house, when I was able to get a mortgage, so I could at least ensure my family had somewhere secure to live. (I lay in bed awake last night worrying and fantasising about winning the lottery and buying a house.) Instead I chose a career path that satisfied my soul. I chose to work with people that are often marginalised and have to work harder than most to achieve what most of us take for granted i.e. independence, their own home, the right to have a relationship, a job, enough money to live on, acceptance and support. So despite feeling regret for wasting money and not having saved enough, I don’t regret my choice of career. Like most men I have this deep seated need to provide for my family. When things go awry I feel guilty for not meeting this need. Things have gone awry and I cannot provide.
This isn’t a cry for help or a plea for someone to crowdfund on my behalf. Anyone who knows me doesn’t need me to say that. This is an annoying and frustrating by-product of being sick. I wish things were different but wishing doesn’t change things, however there is always a plan b and if that doesn’t work there are 24 more letters in the alphabet to try. Nothing I’ve experienced has overwhelmed me yet, I don’t think some money trouble is going to. As a friend once told me “cut your cloth according to your means.” So it’s back to the drawing board to find another way.
I’m going to pop a poem here by Erin Hanson.
What if the grass is greener on the other side,
Because it’s always raining there,
Where the ones who never fail to give,
Hardly have enough to spare,
Where the people with the broadest smiles,
Have pillows filled with tears,
And the bravest ones you’ve ever known,
Are crippled by their fears,
It’s filled with lonely people,
But they’re never seen alone,
Where those that lack real shelter,
Make you feel the most at home,
Maybe their grass looks greener,
Because they’ve painted on it’s hue,
Just remember from the other side,
Your grass looks greener too.