Monday, 25 October 2010

Shelley's Story

Things were promising when I was younger. Top of the class, I was studious, dedicated, motivated. I enjoyed music, singing, acting and dancing on stage, long-distance swimming, cycling and much more. On my 16th birthday I interviewed and was offered my first job, 20 hours a week on top of my 25 hours of school studying for my GCSEs.

When I was 17 it all came crashing down. Days after my 17th birthday I was told I needed surgery, an attempt to cure the extreme exhaustion I had been suffering for several years by this point. It didn’t help. Instead, the errors that occurred and multiple surgeries to repair damage and save my life left me bedbound and extremely unwell. Four months later I received the first of many diagnoses – this one in particular was ME/CFS.

I am now 29 years old. A single mother of a 3 year old. I have now also been diagnosed with Ehlers-Danlos Syndrome and Hashimoto’s Thyroidits. I have had severe migraines and sensorineural hearing loss as a result of having meningitis when I was 5. I am awaiting a cornea transplant - my vision is terrible due to the condition Pellucid Marginal Degeneration, and this week I finally have an appointment with a rheumatologist to assess me for Fibromyalgia. Each of these on their own is limiting, but all together they are serving to drag me down a little bit more each day.

So much so that in the days leading up to the announcement of the planned cuts, I came to realise that I need a lot more help than I have ever been willing to take. Always wanting to be seen as the best amongst my peers, to be successful, to be self-sufficient and independent, I have always steadfastly refused to take anything except the tax credits I am entitled to as a working mother.

But these days these are not enough. I live in one of the most expensive areas of the country outside London, and I have always rented privately. Currently my rent is more than I earn and private letting agents in my area all have a strict ‘No LHA’ rule. My parents pay my rent, eating into their retirement fund a little bit more each month, when they plan to retire in the next year or so.

Not to say money is the only issue. I am increasingly less able to work. Currently I am struggling to work 22.5 hours a week. I roll in late and I leave early. When I get home, instead of collecting my son straight from nursery, I sleep, and leave it until the last minute to collect him. I average 1 day a week sick each and every week. Sadly, this is the most hours I have ever worked. And it is killing me. Despite this, my need for money to house myself and my son is so great I am currently applying for full time work wherever I possibly can even though I know it will be beyond my capabilities. This has not been a successful endeavour. I do disclose my health status, and I never get anywhere. In fact, the only jobs I have ever successfully obtained have been when I do not disclose this information. Coincidence? Perhaps, but I am inclined to believe not.

In the last few weeks I have been coming to a point of acceptance in my life, that I am in fact disabled. In all these years I never wanted to admit it before. I did not want to think that I might never be fit enough to work the long draining hours of my dream profession – a Health Psychologist, despite the fact that I have the education to undertake this profession. I did not want to think of myself living in council accommodation. I referred to myself as, “scummy, chavvy, benefit scrounging.” Fully accepting and buying into the media stereotypes of both single mothers and the disabled. But now I am finally accepting my limitations, realising that the more and more I push myself the less of a mother I am becoming, because I work all week and then lose my weekends to migraines and excruciating pain. My parents come around and clean my house, feed and dress my son, and take him out on activities that I as his mother should be doing with him, whilst I lay in a darkened room wishing I was someone else.

The cuts to the benefits system scare me, because just as I am about to apply for them, they become increasingly unobtainable. Do I have the energy to fight at tribunals? Or the cognitive abilities? What happens should I become even less able to work? This week I have put my name on the housing register – will we even have a shot at a house now? Can I go through all this, or should I just have my son adopted now and lay down in the gutter to die?

The one glimmer of hope for me is my son. By being a single parent I have an elevated status, a privilege not afforded to childless disabled people my age. And I despise myself for thinking that way, for looking at my son and thinking “Thank goodness for you, you’re my work-around,” instead of “Thank goodness for you, you keep me going.”

The most heartbreaking thing is that in the past few weeks I’ve began to realise I need to get my son assessed for Ehlers-Danlos Syndrome too. He has begun to complain of pain in the same places as I experience it, crying out in pain when he gets out of bed in the morning, just as I used to before I learnt to bite my lip and hold back the tears that always come each morning. If he is also affected then these cuts will affect us even more. Not even necessarily on practical matters, but because of the knowledge that this government does not want to help the people who suffer. As a mother I don’t care what happens to me, but I care what happens to him. I care about the future of my happy, angelic, caring, clever, funny little boy.

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