Fibromyalgia || My Story

5/21/2016


My name is Anne, well, Rebecca-Anne but I prefer Anne. At this particular moment in time, I'm 19 years old. I'm a Gemini. I was born and raised in North Wales by my mother. I can barely speak a word of Welsh. I've been in love twice, and am unashamed to have belief that it's possible to love at a young age. I care far too much about what people think of me - both loved ones and strangers. I dismiss my passions too easily, as I lack confidence in almost everything I do. I'm a cat person. I enjoy the atmosphere of a moment more than the occasion that brought it on. I hate opening presents in front of people. I volunteer when I can as I enjoy the freedom it offers. I want short hair but always chicken out. I dress up when it's unnecessary as I think that people who are looking at your clothes, aren't looking at you. If you passed me by on the street, you wouldn't bat an eye. I look like your average young girl, with what you might assume to be a bright future at her feet. I look like I have my life together, and people often compliment my mother on just that. I dress smartly, have good manners to those who speak with me, I smile as though it's always the simplest of things. But I'm not that girl.

Fibromyalgia is found under the category of "invisible illnesses". It's something that sounds made-up when you list the symptoms, as it seems unlikely that so many things can affect one human being without driving them insane. I was officially diagnosed at 16, but had been to countless appointments about my odd variety of complaints since I was 12. Three years I have "officially" had this illness and the doctors have offered therapy, physiotherapy, hydrotherapy, pain clinics, short term medications.. but they can't offer a long term solution. They can instead only offer temporary band aids to cover the parts that are screaming at that particular moment in time. Barring the pain clinic - which I'll be starting at the beginning of next month, I have done them all. So far, nothing has helped or offered relief.

Like most illnesses, each individual's symptoms differ. Mine include widespread pain after what my body classes as strenuous activity (grocery shopping, walking the dog, cleaning my bedroom, sleeping too long), inflammation of the joints, joint stiffness, skin sensitivity, insomnia, migraines, fatigue, nausea, loss of eye-sight, muscle spasms, bruising, inability to concentrate, and low blood pressure. Sounds made up, right? You can't see it show up on any medical chart, nor can you get a 100% accurate diagnosis from blood work. It's instead like a game of Tetris. All the symptoms acting as the colourful blocks until ding, ding, ding you've reached the top and are officially a Fibro victim. Much like the game, reaching the top means you lost. That's a terrible analogy and I'm pretty sure there aren't any dings in Tetris, but I hope you see what I meant.

Fibromyalgia is supposedly triggered by some life changing tragic event - whether on your body or in your life. I wouldn't say I have had either so I cannot relate to that, but know of many who have connected an event to their diagnosis. I simply began to experience abnormal pains at a young age. 

I haven't found a magical cure yet, nor have I found anything that really soothes the pain. My mother continues to push a hot water bottle at me when my back is aching, but it doesn't help. Just makes me sweaty. It's rather bitter-sweet - family and friends. I spent the first half of today, or rather, yesterday, running a temperature in my bed with a banging headache, sick at the back of my throat, and pain shooting up and down my spine. I took some painkillers and lay there for 2 hours until eventually drifting back off. My mother was in the next room and my boyfriend was a phone call away, but I didn't see the point in telling anyone. They can't do anything and in honesty, I'm sick of telling people what hurts when I'm unable to show them evidence of it. I sometimes wish there was a thick gash on my arm with blood pooling around my bed, as I would then feel better in going "Hey, hi, yeah. I'm in pain here. Mind keeping me company until it stops?" It isn't even a matter of feeling as though I'm burdening them, or feeling like they don't care. As neither of those are true. It's simply a matter of feeling as though it would be pointless. A waste of breath when I can lay there and wait for it to ease all by myself. 

As you may of seen from my previous (and future, it's coming, I promise) Scotland post, I went on a little vacation with my partner. And my body didn't react well to it at all. I spent one night in Edinburgh literally shaking for a solid 3 hours - making me wish I was spineless in the process, and unable to stand without falling right back down. It was the first time this illness has terrified me. When I could barely muster the strength to grip the edge of the bed to pull myself up, and to then experience the sensation of my knees and ankles giving out from under me.. It was indescribable. I'm a 19 year old girl and my joints felt as though they were those of a 90 year old. My partner had to help me to the bathroom (which he thankfully doesn't remember. Let's all take a moment of gratitude for sleepy brains.), and I spilt water down my front as I couldn't hold the glass steady enough to bring it to my lips. The following day I felt as though I was hit by a bus. We took it easy and did a small walk down the town, which was torture. Every breath hurt like hell, my sides and back felt as though they were covered in dark ugly bruises. The pain was close to unbearable. I fell asleep at 07:30pm. I'm a young adult, I was in a city I had never been to, and I was fast asleep by 8pm because my body didn't have the strength to hold it together for a couple more hours. I was ashamed of my health, and still am. 

There is no direction for this post, nor is there a reason for my writing it. It's 06:19am and I'm at a loss. I've spent half the night worrying over the future - my future. My back is throbbing like it has been for the past few days, and my leg continues to give me a good ol' sharp pain when I straighten it, all because I was stupid and did some yoga as a Instagram post made me feel like crap for not working out. (Social Media is a wonderful thing, but acts as the devil for anyone who is either lonely or stuck in the house.) 

I'm, ironically, a carer for my mum. I don't study as I haven't the funds for online education, and my health wouldn't handle going to an actual college. I can't get a part-time job due to Fibro. I'm uncertain as to whether I can will myself to have children, knowing that they may inherit this and/or the Porphyria gene - the kidney disease that is the reason behind my being a carer. As mentioned above, I volunteer when I can but that is becoming increasingly less due to the pain. I write for fun, but struggle as my wrists begin to ache and creak. It feels like every good thing has a flip side - that side constantly being pain.

I take Circadin to help me sleep, Dihydrocodeine on the bad days, Cyclizine for the nausea, Ibroprofen in hopes that they might miraculously help, and something for the inflammation (which also doubles as a stronger painkiller when mixed with Ibroprofen), but I can't find the box and haven't the faintest chance of knowing what they're called. I've tried the bath salts, oils, gels, creams, but alas, I sit here today with no recommendations to you on what could help anyone who is going through this. I'd like to say I've come to terms with that, but I haven't, I still have those days where it gets a little too much. I'm a part of this lovely little community on Facebook that was made for people with these types of illnesses and although I act more as a bystander and watch/read what others have to say without contributing much - I find it interesting how most are upset by their stories (though I entirely understand why). I'm more fearful. Of what I'll be feeling in another 5 years time, - how I'll cope. I can't concentrate on the now as I fear I'll implode at the situation I'm in. 

People look at me with disgust when they see my Grandma carrying two shopping bags and my hands are empty. People expect me to able to lift boxes or move things as I'm "a strong young woman". People don't understand and I can't expect them to, as I barely understand myself - both theoretically and literally speaking. It's consuming but sometimes too easy to forget. It's my life but isn't what should dominate it. I struggle to find a balance, and I imagine many who walk in similar shoes will understand that. You can't allow an illness to control you, but it's difficult to follow that rule when every move you make in life will trigger said illness. Mind boggling. 

I'm just a girl and the world I have at my feet is seeming smaller by the day. I have it better than most, I don't doubt that and I'm thankful for the life I have been given, even during the bad days. My life will be okay, no matter where it leads. I'll aim for great but am willing to settle for okay. The bad days pass, whether after 24 hours or a longer period of time. We all find our good days again. Much like a storm, you just have to wait somewhere safe until it passes. Thankfully I'm also the type of person who finds rain beautiful. 

- Anne x

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