This one’s going to be quite tough for me to write and even harder to post publicly.
I’ve been feeling really emotional lately, teary, ragey, sad and frustrated. And therapy today helped me get to the bottom of it, and my therapist asked whether it would be so bad for me to let myself feel how I’m feeling, and let other people see that too. The answer was that I’m scared if I let myself feel it, it’ll be all consuming. And if other people heard it, they may think I’m attention seeking or that I just need to lighten up.
I mask a lot, but for the most part I can be accepting of my limitations and situation now. That doesn’t make it any easier, it just means I use less energy fighting it. But often I mask and tell people I’m fine or coping well. I’ve always done that.
My situation is shit.
Everything is hard, whether that’s getting up in the mornings, having a bath, playing with Riley, or just trying to get through the day. Right now, I’m sick to fucking death of everything being so hard.
I’m sick of needing help, I’m sick of fighting my inner turmoil to try and accept help, I’m sick of it all.
Saturday mum and I popped out for a few bits. The main reason was to go to curry’s to look at some tall fridge freezers to see what would be easier for me, because our under counter fridge and chest freezer are becoming more challenging for me to access. Veg drawer – too low now. Freezer – can barely lift the baskets to access everything underneath, also can’t reach down to most of it without difficulty. I hate that this is my reality, but it is. After we decided to have a little look in TK Maxx. I haven’t been out for a while and just fancied a mooch.
Back in December, I sent a letter of complaint to TK Maxx for how inaccessible their Trowbridge store is and they assured me they’d forward it to their manager to reassess the store. That, quite clearly, hasn’t happened. In my chair, I can’t turn in the aisles, and some of them aren’t big enough for me and someone else to pass. Added to that, some people are just cunts. So I might be near the end of an aisle, that fits both of us, and they ignore me when I ask them to let me pass. This means I then have to reverse, not being able to see behind me and trying get out backwards. But of course, someone else might come down the end of that aisle I’m trying to escape from and then I’m trapped. Purely because some people are massive twats and the store isn’t really accessible for wheelchairs. They also love to stack baskets in the middle of aisles.
I left feeling like an inconvenience, like I just wasn’t welcome. A complete hindrance to everyone else’s shopping experience. I still needed to go to the garden centre to get Riley some more balls, and we said we’d grab a coffee there. Feeling hugely embarrassed by being an inconvenience to others I used just my stick, despite the fact my legs were buggered. We got to the cafe and mum necked her coffee, then said she would leave me there and have a quick look at the flowers outside.
Overwhelmed by my limitations and cunty people in TK Maxx, I burst into tears. I wanted to look round the flowers too. Mum ran to the car and got my chair and we made sure I didn’t go home feeling unwelcome in the world. We spent an absolute fortune and Sunday I made sure to totally fuck my body by planting them all.
The result being I got stuck on the ground in the garden, after my body collapsed on me, and we spent the next 20 minutes trying to lift me off the floor while in complete hysterics. I did this, because what I needed was to feel like I could do something. I had to plant that planter and I didn’t want help because I needed the sense of achievement. I needed that boost. The caveat is that I’m in more agony than usual and can barely move. There’s always a consequence, even if I don’t push that hard.
The reality is that everything is hard in one way or another, and every single day I find something I can’t do. I’ve been fiercely independent my whole life, so to need help is incredibly uncomfortable. I’ve always been the one that helped everyone else, the one my family didn’t have to worry about. But I can’t be her anymore, my body won’t allow it. But I hate asking for or accepting help still. I hate being seen to not be capable.
I also feel left behind. Not that people make me feel left behind, but that I’m coming up to 33 years old and I don’t have a career, a home, or a partner and realistically I don’t see those things on the horizon.
Yet, I spend my days dreaming about having my own bungalow where I can have people over for bbqs and games nights, where I can play Auntie Chlo and have the kids in my life come make a mess of my kitchen with cupcakes and crafts. Where I can build a life of my own, independently, around my limitations. A life filled with love and mess and joy. A life I know I can never access without the ability to work or afford a home of my own.
This brings me round to the other reason I mask, to the reason I don’t really let my friends see me like how I was today in therapy. I’ve never said this to anyone until therapy. My biggest fear, aside from spiders because who needs that many legs, is that people will see me how I see myself.
I’ve spent my whole life hating my body, I never felt at home in it. In fact, more often than not, my body disgusted me no matter what size I was. Until I started powerlifting, and the last few years before getting sick I can wholeheartedly say that I loved my body. It showed in the way I took care of it, in the genuine smile I’d have, in the photos I’d willingly take and post. I finally felt like me and my body was so strong and capable. I felt so connected to every fibre, cell and muscle.
Now, I’m back to hating my body; hating how it looks, hating how it betrays me and hating how it makes me feel ashamed to be seen (along with being ashamed to be seen as disabled). I’ve always had a body dysmorphia issue, and now it feels more vicious than ever.
Fat and vulnerable. That’s how I see myself now, and I don’t want to see myself that way. And I really don’t want others to view me that way. So I go out with a heavy dose of anxiety that I might bump into someone who knew me before, and that this will be how they see me. But really, I know there’s nothing worse than the fact that I see myself this way.
I know my friends and family don’t view me that way, they’re far too bloody amazing to do that. But it’s the fear about it coming true, and then the looks of pity. Because I pity myself enough already, and I hate how I view myself already. I couldn’t cope if others viewed me that way.
Truly the idea of posting this is terrifying but I also think I have to. I’m not letting people in, I’m holding on to that mask; the brave face and words of platitude. All so people don’t know just how fucking hard every day and every task is, so they don’t know how much I resent that, how much I sometimes envy them and that ultimately there’s a part of me that just hates myself and my body.
That’s a brutal thing to admit, and, unsurprisingly, it makes me feel very vulnerable. But right now the bucket is overflowing and I can’t keep filling it up by not being willing to face these feelings and thoughts. I’ll be ok again, and I will feel genuine acceptance of my current situation again. But right now, I just have to be honest with myself, let myself cry, let people in to this dark reality and empty the overflowing bucket of emotions.
If you’ve got this far, thank you and I hope this hasn’t been too hard to read, or triggered any feelings of pity that I won’t know how to handle. I appreciate everyone who reads this little blog of mine, and I do have some appointment updates to write about. But this one had to take priority, or I’d have put the mask back up and carried on like I’m not ready to scream or cry at a moments notice.