My Health Demon

Hi, my name is Chants. I’m 28 years old and I have a chronic illness that makes me feel like I’m an OAP (Old Age Pensioner). And what is the name of this evil thing, I hear you ask? My demon is called Fibromyalgia, and there is no known cure, and it only gets worse.

Fibro was an unknown to me for years. I have been in almost constant pain for a long time, but finally being told what it was that was wrong with me was like having the weight of my little world lifted. It meant that I finally had validation for all of the things that I have wrong with me, but more importantly, it meant that I wasn’t going in the head like my old GP thought. There are more than 200 symptoms and crossover problems for Fibromyalgia, and the test to check that you have it when other things have been ruled out; a pain clinic doctor checking the eighteen trigger points on your body and if more than ten are painful during the test...

Welcome to the fibro world, my friend. Pull up a seat and prepare for nothing to be the same again. In the space of 18 months, I’ve gone from being fairly mobile, even if it was as painful as hell, to having to use a rollator outside the home and crutches at home. The worst thing to me about the fibro isn’t the constant pain or the millions of tablets that I have to take every day to be even semi-normal, the worst thing is the fact that people look at me sometimes as if to say: "You look normal so why are you using that for? Why are you making excuses to not do anything with us? Just tell the truth, you can’t be arsed!" And that is the most hurtful and annoying thing about all of this; I miss being able to go to town on my own without having a complete anxiety breakdown or go food shopping on my own. One of the first times I went with my dad to Asda (there are other supermarkets :P ), he left me on my own for less than a minute and I went into a complete meltdown and my dad, bless him, didn’t know how to help me, as I always relied on my mum in situations like that. Even if she was only a voice on the other end of the phone, she had the knack of being able to get me moving to the door of the shop so that I could breathe and have a ciggie. But this was the first time I’d been shopping since she’d died, and it was chaos in there. Soon after that, I discovered I had developed an irrational fear of big dogs, especially if they were black after a labradoodle escaped and started attacking me and my dad when we were walking our dog. Big dogs made me nervous before that, but just for a second, imagine that you’re minding your own business out walking your dog with someone for the first time in a month, and this huge black dog just comes leaping over a four foot fence going for your little cairn terrier (other breeds are available :P) and the person you’re with, and you, too. What would your reaction be when you know that: A. you have no chance of outrunning the labradoodle without plunging yourself into a world of pain and injury, and B. knowing that, if you try to run, the dog will chase after you like prey and bite you? And I still cannot go up that little road even in the car without panicking. Stupid. Hey, I never said that Fibro makes sense, did I?

I could list the 200+ symptoms, but that would just put you to sleep. For me, the symptoms I hate the most are the neurological ones which I feel have changed me the most. I have speech problems, memory blanks, headaches that just keep getting worse, and the fact that there feels like there is a disconnect between my brain and every other part of my body. The speech problems can last from just a few hours to a whole month. I often tell people who give me the old up-down look and sneer, “I haven’t lost my brain, you know, it’s not contagious either!” But on the days I am having a neuro flare, I do wonder if I am telling the truth with that comment. I can no longer walk around town or do a food shop with someone. I have to use a mobility scooter on the bad days, which I hated at first and would panic about, especially when I used one at Weston-Super-Mare because: A. it was practically brand new and expensive, B. the little road pathways are about as level as a kick in the head, and C. because I thought everyone was staring and judging me. Although I did love zooming up and down the seafront at top speed, weaving in and out of groups of people up to a special spot for my family, it was hilarious because my dad has always walked really fast, but for once, he was having to jog to keep up with me. I found it hilarious, shouting at a bloke to leave a bunch of flowers that my dad had put down on the beach alone. I told him to get up here where I can run him over if he didn’t leave them flowers alone and to show a bit of respect. This shocked my dad as I was acting like I used to; bolshie and feisty; take no prisoners, and always up for a fight, even if I knew I had no chance in hell of winning.

I was quite understandably in fits of laughter at this point, as I finally realised people will only stare and judge if I act like I do not know what I’m doing or don’t have what I call my “Perma-Grin” on my face. I have mastered a new mask to cover up the pain and anxieties, and it is not the new one people have got called "resting bitch face." Mine is a semi-normal person face so that only friends and family can see beneath it to the pain I hide underneath. And when people do the judgmental up-down look, I just do the same back, or arch a brow and ask if they’ve got a question or if they know me. Which generally leaves them speechless.

But even picking a laptop is awkward and a challenge. I had to get a new one last year, and I tried my local Curry's and was treated like a freak and a cheapskate when I said that I had a £300 limit. My dad and I took the plunge and went to the Curry's PC world megastore at Cribb's Causeway in Bristol, and I can honestly say that I have never been treated better by shop staff and, even mid neuro flare, I wasn’t treated like a freak when I couldn’t get words out. They actually sat me down and asked me what was wrong and if I was alright, at which point I nearly burst into tears because I was hyper-emotional because of everything, and my Dad and I explained briefly what had happened at the two local stores, and they carried on being great. And they accepted my laptop challenge, too; not too heavy, at least 32GB hard drive, no bigger than 12” screen and it had to have insurance on it in case on a bad day I accidentally dropped it or split something on it, and oh, yeah the final part of the challenge: it couldn’t be a dull normal boring colour. Because to me and my train of thinking, if people are going to stare at me, give them a valid reason to. Oh, and I don’t like normal (Even my rollator isn’t the normal bulky OAP type one it is an X-fold lightweight one which I jazz up with different scarves every other week on the backrest because why not? Like I said, let’s just give people a valid reason to stare at me, hey?!? ), but shop staff being nice and helpful and genuine is something of an oddity to me unless they work at the local Asda and have known me for years. And because of that, I found my day starting to get a bit brighter than the sun was already making it. I have just gotten so used to being the village/town freak and oddity that it was a complete shocker, it even shocked my dad, as I think he has gotten used to acting as a bit of a dad/bodyguard combo.

My main reason for writing this wasn’t to just drone on about me, which I kind of have done. My main reason for writing this was to cast a light on Fibromyalgia and other silent illnesses that don’t have any outwardly obvious symptoms. Fibro has always felt like a bit of a curse or punishment due to the constant pain, be it muscle and joint pain to the horrendous nerve pain that is more debilitating that the other pain, and the brain fogs and sensory overloads which cause me to all but shut down. The fogs are when the brain will not cooperate and do what you tell it to and doesn’t retain anything during the fog and you can end up looking like a zombie as you are trying internally to fight it back, and it takes a while for it to sink in that you can’t actually do that, you just have to let it play out and hope for the best. But the pain can make you feel like you are black and blue with bruises, but when you look at yourself, there is nothing there. So don’t think someone is okay just because they look it on the outside. Look at their eyes and the little lines around the mouth from where they are quite literally putting on a brave façade. Don’t disbelieve them if they say that they can’t go somewhere or do something; sometimes it takes all of our energy to just get up and out of bed on a morning and that’s before we are even ready to go out the front door. Put yourself in our shoes and imagine needles keeping on stabbing you on your arms repeatedly never stopping, a deep-seated dull ache every time you even move even the smallest, most minute movement, and not being able to lift a bottle of milk, not able to even turn the lid without being certain that it is not going to go over you if your hand goes. Just imagine that for a few minutes, and then you have the smallest snippet of what people with fibromyalgia go through every day without fail, and also having to deal with depression, IBS, panic, costochondritis (which feels like someone squeezing your heart repeatedly), balance issues, migraines, lung function issues, and lots more.

But a person with fibro will have to quickly accept that, one day, the pain and other symptoms won’t be able to be controlled by anything, as eventually your body becomes used to them; not even morphine will work to even take the edge off of the pain. And being able to move without screaming in pain will become your normal, and the days like today will be nothing more than a fading memory being wiped away by the pain. So next time you see someone on a mobility scooter or using a rollator that does not look old enough, don’t pre-judge or look them up and down, and please don’t pity us, because this illness has just started to make us stronger than we thought we could ever be, even if we do forget on the bad days and ask if there is a way out that we can take. We don’t want your pity, we just want just a smidgen of understanding and empathy. We are becoming just like butterflies in the sense that even the lightest touch can be excruciatingly painful, or think of us as Swarovski crystal; ornaments easily damaged. Some days, even the lightest touch can feel like a punch and still be aching hours later.

So, yeah, my name is Chantelle. I’m 28. I live in England and I have a chronic illness of widespread pain that has no cure and makes me feel like I’m 68 and not 28. I have Fibromyalgia. I am a Fibro warrior. I am still the person you used to know a few years ago, I am just a little bit more fragile than I was back then. I am just a special edition Chants that has a few more issues underneath than she used to.

CHANTS XOXOXO