“To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.”

“To succeed… you need to find something to hold on to, something to motivate you, something to inspire you.”

I was never sure what I wanted to do when I was growing up.  Many of my friends had obvious interests or skills which led to a clear career path.  But I wasn’t particularly good at anything at school.  I was okay at English, okay at IT.  I was appalling at art, and told basically to just stop, which is funny because I can be creative, but not in the very narrow way they wanted me to be.

I picked my A Levels based on enjoying English and IT, and quite liking the teachers I spoke to who taught Psychology and Politics at the college.  I then found I really enjoyed Politics, and found a kind of passion in it, which then encouraged me to do a degree in the subject.  Many people see it as a staid, dull subject, full of middle class white men arguing and waving their fists at each other.

In reality, that’s a tiny part of what politics is.  Politics is everything.  It’s the area you live in, the roads you drive on, the places you visit, your income and the way we as society treat each other.

One thing I picked up on quite early was how housing can have such a profound effect on your life.  Housing has a direct impact on your education (how can you study without a quiet, safe environment?), your health – (can you be truly healthy in a cold, damp property, or with stressful neighbours or landlord, or with expensive repairs hanging over you) and even your life chances.  Have you ever pulled a face, or immediately judged someone based on the area they live?  Employers certainly have.  It can decide just how safe you feel depending on crime in the area.  It can decide the catchment area of your school – good or poor, which can then have a direct link to whether you go on to university.

flatsHigh Rise flats vs posh househouse

While I was at university, I chose to take a lot of modules based around social policy and housing policy as I found it so interesting.  Then, during a summer break, an opportunity came up at a local charity that worked in the housing sector.  Their aim was to assist older and disabled people to stay in their homes via adaptations, grants and advice.  The job on offer was to set up a gardening service was a subsidy for people on low incomes.

I loved it.  I started the service from scratch, and decided how it would all work.  It took awhile to get going, but it became a thriving service.  Many people see a gardening scheme as cutting grass and pulling up weeds.  But it was so much more than that.  For many of my customers the gardener was the only person they saw all week.  For many others, they’d lost their partner who used to look after the garden, and seeing it become a jungle was soul destroying.  Others were housebound and the garden was their only view to the world.  It made me realise how a service, even one perceived as small, could make such a positive impact on people’s lives.

My job role expanded to take on new services, and I was given the opportunity to write the business plan for the agency, along with the marketing and fundraising strategy.  We began to prepare to expand all of our services, and bring new ones on board.  I began to coordinate staff, and recruited new ones.  My job role was sent to head office in order to change my job title and wage to reflect all my new responsibilities.

We then received the devastating news that the company had decided to close down their charitable wing.  We were informed they were trying to find alternative organisations who may be interested in taking the agencies on.  It then got a little complicated –  one construction agency agreed to take on agencies across the country as long as they had a reasonable contract left.  We didn’t.  They requested our contract with a council to be extended, but they refused, which meant we were given redundancy notices.  There were months of turmoil, one minute being told we were okay, the next that we’d be let go.

It was a difficult time, because I was really worried about finding employment with my disability.  I had some job interviews, but didn’t get anywhere.  However, eventually the contracts were reoffered and three organisations applied.  Two I’d heard of and was hoping one of them would win as I liked their ethos.  I hadn’t heard of the third.   The council kept dragging their heels, however, and we were told by our existing company we’d be kept on for one more month but then they would have no choice but to let us go.  At this point they’d given notice 18 months previously they wanted to leave, and given a date to leave.  It was six months past that date, and they’d continued to keep us on – while trying to compromise with the council over and over.  The council knew they had a month deadline, but waited until the end of the final week to finally announce the third company I hadn’t heard of had won the contract.

It was hard to even feel relieved at this point.  I felt battered and bruised.  Over and over we’d been told we were out the door, and then safe, and then back to being goners.  My stress levels were very high by that point, and my worries turned to the new company.  My current manager had been very supportive over my condition, having suffered from chronic pain in the past herself.  We’d worked together to put in place reasonable adjustments around working from home, equipment, flexible working and more.  I never had to work consecutive days, something I found impossible.  My manager understood my worries about going into the new organisation, and so requested an urgent meeting to start the ball rolling and put my mind at rest.

The words ‘it was all downhill from there’ seem very apt at this point.  The story continues in the post “Any organisation is like a septic tank. The really big chunks rise to the top.”

Overview of The Spoon Theory

Overview of The Spoon Theory

The Spoon Theory was written some years ago by Christine Miserandino in regards to a conversation she’d had with her friend to try to explain what it’s like to live with a chronic illness and it’s an excellent read I like to share with people.

Her friend asked her what it was like living with Lupus every day.  Christine picked up a handful of spoons, and gave them to her friend, declaring she now had Lupus, and this was her allowance of spoons for the day.  A normal, healthy person has limitless spoons and can pretty much do what they want, but someone unwell wakes with a limit of spoons and has to carefully ‘spend’ them and compromise on which task they need to do.  Each spoon represents a task needed to get through the day i.e. a shower, getting dressed, making lunch.  Each task costs her a spoon.  When the spoons run out, that’s it.  She can’t do anything else.

So she has to think about what she does, and use her spoons carefully to get her through the day.  Someday she wakes

English: A set of six Apostle spoons.

Counting Spoons. (Photo credit: Wikipedia)

up with less spoons than other days, and sometimes she can rest the day before and save a few more up.  Sometimes she goes into minus spoons and it causes a massive problem.  Sometimes you have an event you have to go to and it will cost you an enormous amount of spoons, but you don’t really have a choice (such as a family wedding).

Those with chronic illnesses often call themselves ‘Spoonies’ because of this.

It’s very hard to understand what it’s like living like this each day and really no one can until you’ve walked in their shoes, but it’s an excellent analogy that hopefully everyone can picture.

You can read The Spoon Theory here.

Respite Care

Respite Care

This blog post ‘I have sent my child to stay with strangers’ by Scottish Mum gives an excellent account of what it’s like to have a non-neurotypical child.

Some respite allowed her a time out from a very exhausting life.  Giving her and others like her a regular time out allows families to rest and recuperate, and the ene

rgy to deal with day-to-day life.  It’s invaluable.

"Under the horse chestnut tree", 1 p...

Mother and Child. “Under the horse chestnut tree” (Photo credit: Wikipedia)

It underlines the importance of how you react to a parent dealing with a tantruming child.  I remember babysitting my cousin, who had a tantrum in a busy shop as two year olds are wont to do.  I particularly remember the embarrassment and the looks people gave me.  Imagine the looks a parent of an older child gets, never a thought to why, or how the parent is doing – just judgement.