I’m Loula Cherry and I’ve been a plus size model for over 10 years doing fashion, artistic nude, lingerie, catwalk, figure drawing. I’ve been photographed and published in national and international magazines and newspapers, and have been on TV more than a few times. I’ve been extremely vocal about the difficulties, inequalities, and issues faced by plus sized women.
And, I’ve kept a secret. Something that can’t be seen easily from the outside.
I am disabled.
I have a have a genetic condition called Ehlers Danlos Syndrome, Hypermobility Type (EDS-HT). The collagen in my body doesn’t work in the way it should, that means that my muscles, ligaments, and tendons are damaged easily and they don’t hold my joints in place effectively. This causes repeated dislocations, subluxations (partial dislocations) and an awful lot of pain. As a result, I experience extremely severe fatigue and spend most of my time resting and recovering at home. I often use crutches, walking sticks, various supports, KT tape and some pretty heavy duty painkillers. I visit A&E more often than anyone I know. Having an invisible brings its own huge problems. People can’t immediately see my pain and can’t always understand why I can’t do the things they consider normal or the things they want me to do. It effects friendships, relationships and every other aspect of my life. It’s not the easiest thing to explain. Especially if the person you’re trying to explain it to hasn’t ever experienced prolonged pain or fatigue.
Two years ago I decided to limit the photoshoots to allow myself time to prepare and recover properly. It has really helped and it’s meant that I’ve been able to concentrate on the assignments that I am most interested in properly. I kept a diary during a week that I had a photoshoot to explain how I cope with being a working model and EDS-HT
Day 1 – Saturday.
I have a shoot booked for Tuesday evening. It’s a portfolio shoot, so I get to choose my own outfits from my extensive wardrobe around the theme of Alternative and Gothic. This morning I made a list of outfits. I need 3 and I have a short list of 6. This afternoon I’ll try everything on, check that the outfits work and that I can get them on and off easily. Reaching around to a zip can be enough to dislocate my shoulder, so I add ribbon to a zip on the back of a dress to make it easier to use. I can’t wear heels for more than 15 mins at a time, so I put together outfits that work well while I’m barefoot and pack the best-balanced pair of heels I have. I pick out any jewellery I need and pack it all into a small wheelie suitcase, along with my walking stick, painkillers and kinesiology tape, just in case I need it. I add a bottle of full sugar cola and some high protein snacks to help stave off fatigue on my way home from the shoot.
Putting all of that together has taken me 2 hours. That’s all the activity I can manage for today, so my husband cooks us dinner and we watch movies together. I rely a lot on my amazing patient husband.
Day 2 – Sunday.
Today I need to wash my hair. I have almost waist length wavy hair that goes frizzy very easily, so, to get it to behave, I need to wash it a few days before I plan to style it. My hair will keep curls for much longer if it’s a little bit dirty.
For most people, it’s a simple task that they probably don’t think about, for me, it’s a daunting one that will cause pain and fatigue. I can’t stand in the shower for more than a few minutes. I have POTS (Postural Orthostatic Tachycardia Syndrome which causes my blood pressure to be very low and raise sharply on standing. Being in the hot water causes me to get very dizzy and faint, so I have to sit down in the bottom of the bath. Raising my arms above my head for more than a few seconds puts a lot of pressure on my muscles as they work extra hard to keep my shoulders from dislocating. I must keep stopping and starting, so it takes me 20 mins to shampoo my hair. Once I’ve got the conditioner on I shave my legs being careful not to contort into any odd positions. If I do, my hips or my knees pop out of joint. After washing the conditioner out of my hair, I’ve been in the shower for 40 mins and I’m feeling extremely weak and tired.
My husband helps me out of the bath and I lay on my bed for an hour to gather enough energy to brush my hair. Brushing has the same problems as washing my hair and my right shoulder dislocates. My muscles are too tired to keep my joints in place. I put it back in place, take painkillers, wrap up warm and spend the rest of the day on my sofa with my dogs and my husband.
Day 3 – Monday.
My shoulder is still painful from dislocating it the day before. It made sleeping difficult and I woke up every time I rolled over.
Today I will do nothing. I put on warm pj’s, pull a blanket over myself on the sofa, and only move when I need to go to the bathroom. I only have pre-packaged food and drink until my husband comes home from work and cooks us dinner. I am storing up my energy because I know I will have to use so much more than usual tomorrow. It’s kinda like when your phone only has 30% battery, but you know it has to last for over 36 hours. So you only use it when you have to, you turn wifi off, you avoid Facebook and you only text the people you really have to.
I go to bed at 9pm. I need to try and get extra sleep tonight.
Day 4 – Tuesday. Shoot day.
I get up at 10am, I’ve spent 13 hours in bed sleeping and resting, conserving battery.
I have the quickest of quick showers, put some pj’s on and set up camp on the sofa. I have pre-packaged breakfast and lunch and I spend most of the afternoon very slowly putting my make up on. I do it slowly so that I can rest and not rush. Make up fixing spray is my best friend and it keeps my make up looking perfect right up to when I go to bed at 10pm.
I need to leave the house at 4.30. I have a taxi booked that will get me to the studio at 4.45, giving me 15 mins to sit down before the shoot begins. At 3.30 I curl my hair, being careful not to raise my arms over my head. It’s difficult, but I’ve perfected my technique over the years. I get dressed, grab my pre-packed suitcase and leave the house.
I meet the photographer there, we discuss the outfits I have, decide the order in which they will be shot, and I go to get changed as he sets up the lights. He knows me well and reminds me to tell him if I’m feeling bad or need to take a break. I sit down in the dressing room while getting changed and only stand up when I’m called in. Breathing techniques allow me to pose through the pain and I hold poses only for as long as necessary. I sit down while lights are being changed, I kick off my heels at every opportunity and only ask for a break once. I was getting a little shaky, so I went to the dressing room and had a snack and some of the cola I packed.
At the end of the shoot I call for a taxi and head home straight away. In the car I take painkillers and finish the cola. By the time I get home after 8pm I’m starving hungry and I can feel the fatigue hanging over me. My husband feeds me and we enjoy a few hours together before I go to bed. I’m still running on excitement and adrenaline, so the fatigue that I know is coming hasn’t quite hit me yet. Even though I’m absolutely shattered I can’t sleep. By midnight I’m reaching for the painkillers that I keep beside my bed. My legs are burning, by back is breaking and no matter what position I try I can’t get comfortable. Around 2am I finally fall asleep.
Day 4 – Wednesday.
I wake up at 9am after a horrible night’s sleep. I woke up every time I moved and had to take more painkillers at 4.30am. I feel like someone dropped a tonne of bricks on me. Every muscle is screaming and it takes me 2 hours, and more painkillers, to be able to get out of bed and head to the bathroom. I pull on a onesie and create a pillow and blanket fort on the sofa. My amazing husband has left me a sandwich and some Gregg’s giant jammy dodgers to enjoy. I only move from the sofa to go to the bathroom, and that 20 feet walk takes me over 5 mins each way. I can barely string a sentence together all day. Not only do I experience extreme fatigue and pain, but I get extreme cognitive fatigue as well.
I go to bed before 10pm and luckily fall asleep within an hour.
Day 5 – Thursday.
I yet again wake up feeling like someone took a club to my whole body. I eventually manage to get up, sort myself out and set up camp on the sofa again. I manage to make myself toast for lunch and reply to a few emails, they are my only achievements today and I crawl back into bed at 10pm.
Day 6 – Friday.
I slept heavily and I wake up feeling stiff but the pain has lessened. I get up, have a short shower, get dressed and do the washing up. I sit down with a coffee and the sandwich I’ve made myself for later. It might not seem like a lot of activity, but I’ve used up the energy reserve I’d managed to rebuild and I know I won’t be moving for the rest of the day. My cognitive fatigue is much better and I’m able to reply to more emails and start to write a new blog post. I’ve received some photos from Tuesdays shoot, so I post them on social media and spend the rest of the day texting my best friend as we plan her visit to stay with me at the end of the month.
My husband gets home and I talk to him in the kitchen while he cooks. We spend the evening watching movies. By 9pm I’m obviously too tired to stay awake and I push it until 10pm to get to the end of the movie. My bed is calling me!
Day 7 – Saturday.
We have a lie in and get up at 11am. My husband makes us coffee and brings me brunch while I’m showering and getting dressed. I won’t be able to go too far, but it’s nice to go out together, so we head to the market to get ingredients for one of his epic vats of chilli. We are out for around 2 hours, most of that is spent on the bus and in a coffee shop where I have to stop and rest. By the time I get home I need painkillers, my hip is slipping in the joint and the muscles are screaming at me. I sit and talk to my husband while he cooks. Going out wasn’t the best thing to do, but I needed to feel the sun on my face. It’s a fine line between doing too much and not doing enough to keep my mental health in a good place.
We spend the rest of the weekend eating insane amounts of chilli and corn bread whilst we binge watch a new TV series.
That was my week. Modelling, and the plus size fashion world, has been a passion of mine for a very long time. Invisible illness has not stopped me from enjoying it and being involved with it, and it won’t ever stop me, so long as I plan everything carefully. It’s like a military operation. I have to rest myself so as not to waste the energy in my battery and I have to look after my body afterwards to let it recover from the trauma that activity creates. Ignoring EDS-H or fighting against it, only makes it bite back worse than ever. It took a while for my husband to get used to my pace of life when we first got together. Luckily he’s as big of a TV, book and film fan as I am, so we enjoy our down time together. The trick is to make allowances for, and to live in harmony with, my illness.