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

Remembering New Year.  

This time three years ago was my last New Years out on the town. A teeny size eight I slipped on my favourite dress and sky scraper heels. My eyes were smoky and my hair was done with a swoosh of product through the funky style I was rocking at the time. Looking at photos I can honestly say I don’t recognise myself. I looked a million dollars, and a million miles from the way I look today. 


I remember that night so clearly. I remember people complimenting me. Women liked my dress, my hair, my heels. Men buoyed with drink liked the way my dress sat just below the crease of my ass, showing off the only pair of tights I had on hand at short notice of a night out. You know the type? They look like stockings… I remember the smiles, the selfies and the shots. Kissing a stranger at midnight. Singing along to the music. 


Fast forward to tonight and my New Year was spent very differently. Tonight I had a take out for my tea. I showered and then I watched a film in bed. Sounds boring right?? Wrong. For me, it was absolutely perfect. 

To understand why, you might need to look a little deeper into my New Year three years ago. My night out was last minute because a friend convinced me to leave my doldrums and head to town. She was worried about me being alone. When I say alone, I don’t just mean for New Year. I mean totally and utterly. I was estranged from my entire biological family. The person who had been stringing me along for the entire year had also chosen this time to cut me loose. My daughter was staying at her dads and I had little in the way of close friendships. Well, except for one. One who convinced me to get out and feel better. My body was a size eight because the intense stress I was under had caused a flare up of a condition which makes my body completely unable to process food. Weight was dropping off me at an alarming rate. My funky hair? I had that done after a close family member passed away. I don’t know why. I just needed to do something, and chopping all my hair off was it. 

So I went. I slapped on the makeup, painted on my smile and toddled off up to town. 

I remember that night so clearly because I was in a place I’d been frequenting for over ten years. Surrounded by faces I recognised and many I knew well. I was smiling and singing and playing along. But I had never ever felt more alone and miserable in my life. Never.

Just after midnight I had a lift pick me up and fetch me home. I took one last ‘happy’ picture before bed, then I cried myself to sleep. My makeup staining the pillow with a blurry reminder of my pathetic (to me) existence. 


The next day, as I languished in bed watching the hours tick by, I decided I had to make some changes. 2013, and the years leading up to it, had seriously brought me to my knees. Now was time to get back up. 

I decided to start putting myself first, and saying no to people. If they only wanted me around because of what I could do for them then why did I want them in my life? The same went for men. No more men who thought they were doing me a favour by spending time with me. No more men who treat me badly. No more being used. I would rather be single and happy than in love with the wrong person. 

For the first time ever, I stuck to my New Years resolutions. I fought hard for myself. I put myself first. I ‘found’ myself, and my smile, again. Not long after I found my husband. The man who had been right under my nose all along. I always knew he’d treat me well, and that we had a connection; but I pushed him away. I see now that it was because I was afraid. Afraid of falling too hard and getting hurt. Afraid that he’d realise he deserved better. Afraid of losing him before we even tried. 

But try we did, in late February of 2014 we started dating. At Easter we were engaged. Our wedding was September first. Some thought it was too fast, but we knew it was right. I knew it was right. Why wait? 

So here I am. In my bed. Writing this blog. On one of the biggest party nights of the year. Gone is the size eight body and funky hairdo. Gone are the sky high heels and skimpy dresses. The makeup very rarely adorns my face. But what I have instead is so much better. 

I have peace, in my life and in myself. I have a daughter with a step daddy who adores her. A step son whom I feel lucky to have in my life every single day.  My sweet baby boy, who lights up the room with his smile. I have my husband, my partner, my best friend and my soulmate all rolled into one. We get on each other’s nerves, we argue and we grump. But we tell each other we love each other more times than I can count in a day. We are there for each other through thick and thin. We love each other. I have a love in my life. The love of my life. I have made and kept a select few real friends who treat me well and I endeavour to do the same for them. Finally, possibly most surprising of all to the me of 2013, I have worked hard on rebuilding a relationship with someone very important to me. They have worked hard too and we seem to be doing great. That too makes me happy. 

So you can keep your parties, your nights out, your drink and dance. That’s not what matters. It might entertain a person, but ultimately happiness isn’t what you find in a bar. Happiness is being content in your own skin. Happiness is love. Be it for yourself, or for others. Happiness always starts with love. 

So, if you have one New Years resolution that you plan on keeping, let it be to love yourself. Because if you love yourself, others really will follow. The right ones will remain even during the times that love for yourself is a little bit lost, and they’ll love you that little bit extra. 
HAPPY NEW YEAR EVERYONE!! 

Where’s my spoons?!

Where’s my spoons?!

Many people with disabilities which affect evergy levels have adopted the Spoon Theory as their mantra. Indeed when I first read it the words they struck a chord with me. So much so I posted them on social media and asked friends and family to take a look. I wanted them to better understand me. That may have been a mistake. You see, I’ve come to the conclusion that the Spoon Theory doesn’t fit my life. 

Firstly, for those not in the know I shall give a brief description. The Spoon Theory is a concept whereby energy is equated to spoons. Basically as a chronically ill person I would have a finite amount of spoons per day. Each activity I do would remove some spoons until eventually I had none left. The point of it is that we don’t have endless reserves of energy/spoons. 

This is very very true. In basic terms the Spoon Theory is an excellent way of describing life with a chronic condition. However I find I just can’t embrace it. 

One reason is on a given day I have no clue how many spoons I will have any given day. For me there is no set amount to wake up with. I cannot bank on having six or twelve or even one spoon. The theory states that going over your energy reserves on Monday, will take away from Tuesday. This is certainly true. But I can have a completely restfull day, and still have nothing in the tank for the next day. Until I open my eyes and take that first wakeful breath, I have no idea what kind of day it will be. Even then, I can never be sure. 


Often I wake in a morning and think ‘Yes! Today is a good day!’. Then, within hours, or even minutes, the tides have turned. Maybe my spoons are ninjas? Maybe the borrowers have been rifling through my stash? Whatever it is, I can go from having just enough energy to less than zero quicker than a scrambling fighter jet. Sometimes it’s due to a weather change, sometimes it’s stress. Often I have no clue whatsoever what’s happened. 

On top of this. The amount of energy activities take changes on a day to day basis. I cannot plan my day around how much energy things will take from me. Because I do not know. A shower may be doable on Monday. On Wednesday it may feel like bricks are pummelling me rather than water. My joints may feel stiff and rusty. Everything could take ten times more energy. I cannot count on being able to do tomorrow what I managed to day. 

Finally there’s another complicating factor. Pain. Let me tell you now, you can have all the energy in the world, but if you feel like someone just drove a dumper truck over you you’re not going anywhere! Pain entwines through my entire body in a daily basis. I never know how tightly it will grip. On a good day I can hide it. On a bad day it consumes me. 

So yes. The Spoon Theory is fantastic. But unfortunately it gave people the wrong idea. They thought if I rested I could then plan activities. If I worked my day so I didn’t have more than one thing on, then I could do that one thing. They had the impression that I had some vestige of control. I do not. I try. I try not to let my health rule me. But at best, I’m flying by the seat of my pants through an ever changing roller coaster of pain and fatigue. At worst I’m being pulverised by a Hulk type monster with PMT. Either way, it’s a whole lot more complicated than simply rationing my Spoons. 
PS The original Spoon Theory can be found here http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ 

Though I’ve come to realise it doesn’t fit me, it’s still worth a read!