On the outside I look like a perfectly normal young woman. I'm 5ft10in, overweight, decently dressed with bright lipstick and curled hair most days. When I present myself outside I look normal but I don't feel well. I am in constant and consistent pain that is managed mostly by strong painkillers that I have to have blood tests with to check they aren't damaging my liver. I have Fibromyalgia and the reality of life with it is not what it seems.
So before I go into my experience with Fibromyalgia you may want to know what it is. It's described as a long term chronic condition which causes pain all over the body. Symptoms of Fibromyalgia alongside the widespread pain include muscle stiffness, irritable bowel syndrome, difficulty sleeping, headaches and 'Fibro fog' which is when your brain basically goes to pot - kettle in the fridge kind of issues.
I've had widespread pain for around ten years. As a teenager I was described as lazy as I often didn't get out of bed until midday missing school as my mother worked in the mornings or laying in bed until the afternoon on weekends. My parents dismissed it as laziness coupled with generally being a teenager. I was diagnosed with Fibromyalgia when I was 20 - six years after developing the symptoms and refusal from the doctor to refer me to a Rheumatologist. When I fell pregnant the pain seemed to ease up and I was told that often pregnancy can cause Fibromyalgia (FM as we shall now call it) to go into remission. As soon as I stopped breast feeding the pain came back and oh, it came back with a vengeance.
That was four years ago and since then I've been living on a cocktail of sixteen pills per day, keeping a sleep diary, keeping a food diary and limiting my intake of foods, cutting out certain food groups for periods to see if it helps, exercising moderately to keep active but nothing happens. Nothing takes away the pain. The doctors say to exercise but on a bad day I can barely walk five steps without needing to sit down. Today I took a bath and needed to sit down after sitting in the bath. I have no energy. I have burning pain in most of my muscles when I'm sitting, standing, walking, eating; it doesn't stop, it's just varying degrees of pain and reliance on pain management.
I try not to talk about it too much as it seems like I'm moaning. Which I am, of course I am, but nobody likes a moaner. So I get on with it as best I can. I stand up and say to myself that I can totally do this and even if I have to limit my activity for the day I will be productive. I may struggle to dress myself but I will bear the pain to dress my daughters. I may struggle to lift a pan of water some days but I have an amazing supportive partner who does it for me.
Which brings me to this part - the boyfriend. He deserves a paragraph of his own because he is an absolute gem. He takes the pressure off me to do everything, he'll massage me if I'm well enough to take it, he'll spur me on and help me out of the bath. He is there for me to whine to, to cry on, to laugh with, to shake off the dust of the day and say "Love, we'll start again tomorrow". He doesn't fully understand the illness. He doesn't understand why it's so variable and why nobody can cure it. He gets frustrated and angry at the situation and I can completely see why. It may be difficult for me but I have the pain to focus on getting through, a boyfriend, daughters...I have motivation. He only has love for me to help. He can't take the pain away or force me to do something. He can't lead a normal life in the weeks I have a flare up as he becomes the head of the house overseeing everything. I love him for all that he does and he loves me for trying.
I hate this illness. I hate forgetting things I just said or getting confused mid conversation because my mind has been covered in a 'fog'. I hate waking up feeling like what I imagine someone would feel at 90. I'm 24 years old, I will live my life but living with FM is not pleasant. It is difficult and painful and tiring (God, exhausting) yet I will continue to try to make friends with the indecipherable beast. I will stand side by side with it and we'll do this together seemingly in pain or not at all. I may have to live with this but I won't let it run my life.
* I can click pretty much every joint in my body thanks to this too. Freaky party trick but at least I have one.