Who’s Watching You?

Who’s Watching You?

Hi folks. I don’t know if anyone even reads this anymore, it’s been such a long time since I wrote anything on here. Serious health decline is my excuse, but that’s not the real reason. The real reason is somewhat more personal.

You see I started getting comments on blog posts. Personal ones. Talking about my life and saying I’m faking my illness. They even commented on how often we got take away delivered to my house! This continued to escalate. So called friends and family who never actually see me as they live at a distance started with similar diatribe. How I’m always moaning but theirs clearly little wrong with me. I need to try harder. Push further. Put up and shut up.

I felt like judgement and accusations were coming at me from all angles. That I couldn’t talk about any aspect of my life anymore. If I have a good day and do something, I’m a faker. If I have a bad day and talk about it, I’m an attention seeker. I couldn’t win.. everyone was forcing down my throat that I’m a loser.

This culminated in someone reporting me for benefits fraud. Why? Because I was taken to Florida with my family and my daughter went on a slide that apparently had 216 steps. (Ironically this was on one of the days I was in and out of sleep in the hotel. Crying about the fact that even with a scooter I couldn’t keep up with the rest of the family and I was letting the kids down. Upset that I was spoiling the holiday for everyone and believing I should have stayed home. I forget which of those days she went to that water park, there were a few where my body gave out on me.) They must have overheard her talking about it and assumed I went up them too seeing as the exact number of steps were reported.

I was completely truthful. I told the lady I had been to Florida. I hoped to save up over the years and go again, at my own pace rather than trying to keep up with everyone else. So my kids don’t see me left behind. So we can do all the things we missed. So they can actually get to see the fireworks. I told her about my scooter and the lifts to any ride I did manage to go on. How my neck issues are a new development and I haven’t even reported them as I would be entitled to higher carers and that would mean they’d use the opportunity to swap me to PIP. Stress I don’t need right now. With POTS and my other problems I’m allowed on rollercoasters!

I told her how I felt watched. How I have to try my best not to wear my collar and I’m judged if I leave the house without it. I told her that if I’m having a good day I will continue to go to the park with my kids. If I can manage it I’ll take my son down the slide. I’m going to grab every opportunity to do everything I can with my children when I can, because too much of my life is either in bed or in hospital. Do you know what she said?

She said ‘Good for you!’ She told me it was clearly a malicious report and they see it a lot when people have unseen disabilities. She told me I have to ‘stuff the lot of them’ and live my life as best as I can. If I want to save and go on holidays (Not that I actually can right now, but the hope is there) do it. If I want to go to the park. Do it. Live my life as best I can and don’t apologise for it.

So this is me saying a big fat F YOU to all the people who have tried to drag me down this year; the hardest year of my life. I will keep fighting for my health, I will keep resting when I need, I will also keep going out and enjoying precious moments with my family when I can. I’m not just disabled, I’m a mother, wife, lover, friend, woman.

I’m disabled, not dead and I have as much right to living my best life as any of you! I will not apologise. I will not explain. I will continue to paint a smile on my face whenever I can. Myself, my Doctors and my husband and kids know I’m no liar. That’s enough for me.

PS. Comments will be switched off on this page from now on due to people hiding behind anonymous comments on here to give me abuse. If you would like to comment on this piece please feel free to do so on Facebook where I shall be posting it on my page: This Little Life of Mine

Such a Scrounger…

Don’t get me wrong, I’m incredibly grateful for the benefits system here in the UK. Without it, I honestly don’t know where I’d be. (Yes I do, on the streets.) But what I hate, is the stigma attached.

So here it is. I’m 28 and I claim benefits. I’m probably never going to work again. At the moment my other half is also claiming benefits. Why? So he can look after me. Previous to that he had a well paid, full time, job. Now he’s stuck with my label of ‘Scrounger’.

Firstly, I’d like to address my husband (and anyone else on carers allowance). I’d like you to adjust your thinking a little here. If my husband wore a uniform and went round to a lovely old dears house five times a week, bringing home a nice little wage, he’d be employed. But because he lives with the person he’s looking after and gets paid by the government he’s a Scrounger? I think not. My partner works just as hard, if not harder, than anyone else. He is here for me 24/7 and the pay is a pittance. Honestly, life would be easier for him if he worked. He’s given up a career he loved, and most of his social life, to do this. So think about that when you assume someone who is a carer has the easy option.

Secondly, there’s me. I don’t work. I can’t work, and I’m not going to apologise for it. Why? Because it’s not my fault. It’s taken me a good few years to appreciate that I cannot control my health. I used to work. I had to leave when it was getting to the point I was collapsing in the workplace and unable to function at home. Even after that point I continued to try. I would volunteer at my daughters school so at least I felt I was giving something back. But one afternoon in school meant the rest of the week in bed. I couldn’t wash or feed myself. I couldn’t look after my child (who incidentally I had before becoming ill, but having a child whilst on benefits is a whole other debate), in order to function I had no choice but to give it up.

So now I don’t work. But, believe you me, it’s no picnic. Yes, I spend many days in bed. But it’s because I’m in incredible pain and sapped of every bit of my energy. Some days I make it out. But even then, with a smile on my face, I’m dizzy and in pain. (Which is best case scenario). Just because I don’t work doesn’t mean I have an easy life. I’d LOVE to work. I went to university. I was supposed to have a career. I wasn’t supposed to be a burden on society. I had a plan!

But the thing is, life happens. Health issues don’t care about your plans. So please, have compassion for those of us in genuine need of benefits. I can guarantee you won’t think worse of us than we have if ourselves. I wouldn’t wish my problems on anyone, but remember, disability can happen to anyone. Even people who think everyone on benefits are scrounging scum.