Walk in my shoes for a day in the life of fibromyalgia. They have to be flat shoes, no laces though, I can’t do laces and when I try, they fall out. I can’t wear heels either. So now you’re wearing my shoes, but….they’re 2 sizes too small for you. No, I don’t wear shoes too small! But, as my toes and feet are so sore, the only way you can feel what my feet are like is by wearing shoes 2 sizes too small. Oh, and when you walk, you have to walk on the sides of your feet. Not because I walk on the sides of mine, but after a few minutes, you’ll feel the same aches and pain I feel, even just walking to the front door. But you have to walk like that all day. Oh, and the shoes have a lining full of ice, so your feet are extra sore with being cold. That’s my feet 24 hours a day – right up to my knees! This is me.
Ok, now you have my shoes on, and it’s not comfortable. Walking on the sides of your feet is hurting your feet, knees and hips. That’s because you’re not walking with your usual posture. Now I want you to tie hot water bottle (filled with hot water) to your knees. But you have to keep re-filling it with hot water! The heat is how my knees feel and the aches from the pressure of carrying full hot water bottles is just like the swollen feeling I have in my knees. This is me.
Now you’re going to wear a special ‘hipster’, which will demonstrate how my hips feel. The hipster will fix around your hip joint and groin area (sorry, no fashionable hipster jeans!). The hipster is designed so that there are rocks placed on either side, which are pressing into your hips, while a special machine will also put pressure on your hips, pushing them outwards. This pain in and around the hip and groin area is what I have all day every day. Along with the special machine pushing your hips outwards (you will now be feeling like your hips are trying to explode out the sockets – just like when you snap the chickens wishbone!), you are going to be feeling very very uncomfortable and sore. This is me.
I have made a drink for you. It’s a laxative drink. Your stomach will feel like a washing machine on a fast spin, along with the awful cramps, and that desperate urge to run to the loo. But you can’t run! Wearing my shoes, and with my special hipster on, you can only hobble as quickly as you can, praying you reach the loo in time! This is what Irritable Bowel Syndrome is like for me.
Now you’re starting to feel a little of what I feel, but that’s only a part of it. You’re wearing a fibrosplint on your hands. It has fingers on it, so now you can’t bend your fingers nor your wrists like you could yesterday. So how you going to open those buttons on your trendy jeans to get to the toilet in time? It’s form of art, being able to manage buttons and zips when you have fibromyalgia! Sadly, I haven’t got a degree in it yet. You have weights attached to your elbows, and it’s pulling on them, and it’s really uncomfortable. You can’t fully bend your elbow, but you can’t fully straighten it either. So, with the splints on your hands and the weights on your elbows restricting your every move, how will you make the evening meal, how will you make a cup of coffee, how will you do anything? With a lot of difficulty, and by taking a lot of time, you might be able to do a few things. This is me.
You’ve spent the last 2 days with your arms strapped along the length of a broom handle, and now I’ve cut the straps. You can’t bear moving your arms, you can’t lift them up, the pain and stiffness is like torture. And to make things worse, I’ve now added shoulder-pad weights. This is me every day.
Your neck muscles are in knots. Your head feels too heavy for your neck to support it, and you have a tension headache at the base of your skull. The pain is going down into your spine, and along your shoulder blades. It feels like it’s frozen as though you’ve been numbed at the dentist, but the pain also feels like a red hot spear being rammed into your shoulder blades and neck and spine. Nothing can ease it and it’s unbearable. This is me.
You had no sleep for 2 days, so I let you sleep for an hour or two before you stepped into my shoes. You have no energy, you feel like you have the worst hangover in history but you haven’t had a drink for months, perhaps years. You struggle to speak clearly, your eyes are heavy and the pain behind them is unbearable, You feel sick, because you have pains in your head like a claw hammer has been battered into your skull. Your skin is itchy all over, and your face feels like you have been slapped and there’s electric shocks going down one side of your face. You have a thirst as though you have spent the last week in the desert. You feel very depressed, but that’s caused by the pain and tiredness you’re experiencing. This is me.
Then you realise, you have to get dressed and the clothes rub on your already painful skin. You want a shower, but think it’s better to have one before bed. Now you have to try to get the kids to school, go to work, pick the kids up, make the evening meal, do some housework. Your shoes now have lead weights in them, making it difficult to even lift your feet up to take a step and you have no energy left, but all these things need doing. You get the kids to bed, and you just want to go to bed as well, but you can’t. You have to get things ready for tomorrow. You try to read the paper, or write an email, but all you see or type is dkjebfUEFBUkjfgkir. Then you stand under the shower for half an hour, hoping the heat will warm you up and ease the pain and stiffness. But it doesn’t. Then you suddenly remember something you should have done today, yesterday or last week, it’s important, so how did you forget? This is me.
You go to bed, but it takes an hour before you drift off to sleep. Your feet belong in the morgue they are so cold! But you wake up frequently, because someone has put little spikes in your bed. The weights placed on your body are hurting as well. So, even though you are exhausted, you do not sleep all night. When the alarm goes off in the morning, you are shattered, and feel like you have slept for just an hour but you have to go through the same as you did yesterday, and you’ll go through it again tomorrow. This is me.
My shoes are not your shoes. I want to change my shoes, but I can’t. These are my shoes, every day, all day. When you have walked in my shoes, you will be desperate to hand them back. But I can’t hand them back. My shoes are what life has given me. You have had a taste of what it’s like wearing my shoes, but nobody can see the weights, nobody can see the spikes in bed, nobody can see what my shoes are like. You do not want my shoes, I do not want your pity, but I want you to try to understand and I want you to imagine what it’s like wearing my shoes. Because……
THIS IS ME.
(By Linda. To try to explain what fibro is like to people who don’t know and can’t imagine it. feel free to copy