The waiting game is telling on me now. It’s so frustrating to go week after week with the same problems, the same hazards to my help, and know that all I can do is sit tight and carry on as I am, waiting for the appointment where I might start to get some help. It’s made worse by the fact I don’t particularly expect that appointment to change anything overnight for me. Apart from surgery (which isn’t an option for me) nothing can change your epilepsy overnight. Certainly not in a good way, at any rate.
What’s possibly the most frustrating thing is how my health directly impacts how my whole family lives. Because I cannot work due to my epilepsy, it is also not safe for me to be at home alone with O and M. That means that W cannot work either. Well, okay, he does work. He gets a princely £55 a week for working 24/7 as my carer. Thanks, The Government. That’ll keep us going.
We survive because of the welfare state. Housing Benefit, Child Tax Credits, Child Benefits, DLA and ESA, for which I am in the “Limited Capacity to Work” category. Apparently ATOS thinks there is something I can do, and okay, at the time I had the interview there was. It’s just that my health has gotten a lot worse since then but I can’t face the additional health interviews which would result from me telling them. Likewise, I should probably have informed the department in charge of the DLA, but I figure that not telling them things are worse is better than telling them things are worse, and then having to go through all the hassle again when they fix it and put me back where I was when I started getting DLA in the first place. All that paperwork really stresses me out, and is only likely to make me have more seizures anyway.
So we are stuck. We started renting our house when we were both working and I was pregnant with O. So it’s a two-bedroom house, quite small. Now we have M as well, and they will have to share a room soon; M currently has her cot squeezed in next to our bed. Neither situation is ideal. O is a heavy sleeper, but still wakes in the night, and makes noise when he does. M sleeps through, but gets woken by noise and still doesn’t settle herself back to sleep. When she wakes, it’s for at least half an hour. Nor O’s room a good size and shape for two children and their things.
We can’t move, either. Now that we receive that nice list of benefits, most of the landlords and agencies around here don’t want to know. And I’m not well enough to trawl around them all proving that I’m a nice person really, not one of those nasty “benefit cheats” that everyone knows cheat their landlords and trash houses, while filling them with large televisions. The negative stereotyping everywhere gets me down, frequently.
Still, I refuse to be ashamed of my life. I refuse to hide from the fact that no, I am not working, and yes, W is at home during the day as well, since he is a full-time carer earning a fraction of the minimum wage. Personally, I don’t think being ill or disabled is something you should have to be ashamed of. And, given the amount of stress and pressure that W is under, and the absence of any real time off he has, I think people who are carers should be lauded from here to eternity, and not suffer the implication that the people they look after are feckless scroungers.
I find myself defiantly holding my head high. Something completely beyond my control has put me in this position, and I refuse to allow it to beat me. I will get better, however long it takes. I will find a job somewhere, and I will not let it crush my spirit.