Fibromyalgia Awareness Day 2016

I have an invisible illness, one which should I have chosen not to share with you, to look at me, you would never have guessed. Perhaps to the eagle eye, you would pick up on the way that I flinch when I pick up the children in a certain way, the way that I stand, with my hand kneading away at the base of my spine, or the pained look on my face when I am experiencing an excruciating headache. You may think that I seem distant, that I am repeating myself or that my words are a little jumbled, but unless you knew, unless you know, you would never think that for as far back as I can remember, I have lived with the chronic illness, Fibromyalgia.

According to Google, Fibromyalgia is

“a rheumatic condition characterized by muscular or musculoskeletal pain with stiffness and localized tenderness at specific points on the body.”

Symptoms are too many to list, but include –

*widespread pain
*extreme tiredness (fatigue)
*sleep disturbance
*tingling, numbness, swelling
*Headaches
*Irritability/depression
*Poor circulation
*Digestive issues/IBS
*Cognitive impairment
*Burning, stinging, stabbing sensations
*TMJ disfunction
*Neuralgia
*Sensitivity to noise, light, chemicals, food.
*Vision disurbances
*Dizziness

My symtoms started as a young child, when aches and pains would wake me in the middle of the night and I would complain of strange sensations in my body, ailments which I had wrongly assumed were normal. By my teens I began the first of many visits to the doctor, continuously complaining about wide spread pain, to be told that it was most likely growing pains and would improve with age.

By my early twenties I was experiencing massive flare ups, times where I was so exhausted that I could barely climb out of bed, days where I would take pain killers back to back just to ease the constant pain throughout my body. Eventually my doctor agreed that this needed investigating, and through an extensive process of elimination, spanning across several years, the end diagnosis was indeed that of Fibromyalgia.

As a young adult I struggled massively with my diagnosis, having heard nothing previously about this condition and knowing no-one who suffered. It was very difficult to accept that I had a condition that not only impacted on my daily life then, but would impact on my future. The prospect of living my whole life feeling that way was very daunting.

I think that the hardest part for me, and still is to some degree, was the fact that Fibromyalgia, along with the majority of chronic illnesses, are so widely misunderstood. To look at me, I look well. I have become very clever at hiding my pain, putting on a brave face and laughing and joking as though I don’t have a care in the world. When asked, “How are you doing?”, I will always reply, “Great! Couldn’t be better!” rather than admitting that I am struggling, rather than telling the truth.

And the truth is this. Some days I am in so much pain that just the feel of my clothes against my skin is unbearable. Lifting the children brings tears to my eyes, kneeling down on the floor and playing with them will mean that the following day, I am unable to walk. I don’t sleep, not at all some nights, and in stops and starts on others. I experience aches, pains, as we all do, but also stabbing, shooting pains, across the whole of my body, crippling headaches, agonising pain in my joints, my jaw, through to the backs of my eyes. I experience digestive issues, acid reflux, stomach pains and cramps which can hit at any time. I’ve had pins and needles in all four limbs for two years straight, numbness in my face, vision distubances, chest pain. I’ve lost count of the number of times I have been in hospital this last few years, the number of specialists I have seen, the number of times I have sat in my doctors surgery and cried.

I take heavy medication, twenty two tablets each day, to simply be able to function as a parent, as a wife, as a human being.  With the medication comes the side effects, the grogginess, the confusion, the racing heart, dry mouth, itching skin. And yet each day I push myself to keep moving, to power through the pain so that my childrens lives are affected as little as possible, so that I can try my hardest to be the parent that they need me to be.

And I won’t lie to you, it is hard, indescribably hard infact, particularly as a mother of four children, three of whom are still so young. I alternate between the part of me that needs to fight back and not allow this condition to win, and the part of me that admits defeat, that is desperate for someone to see how much I am struggling and offer a hand. I find it very difficut to ask for help, I am hugely stubborn by nature, and allowing the Fibro to win feels very much like I am failing. I would rather exert myself to the point where I am lay in bed, sobbing in pain, rather than give in and admit defeat. But even then, there are times, particularly over these last two years when I was then diagnosed with ME (chronic fatigue syndrome) on top, when I haven’t had a choice, where Fibromyalgia has stolen so much of my life and ultimately, I have been too unwell to fight back.

And I hear quite often people saying, “Oh I know someone with Fibromyalgia!” or infact claim to have it themselves, and they throw it around in the same way that you would claim to have a headache, or a few aches and pains. The truth is, a large number of people claiming to have Fibromyalgia in this country, have no official diagnosis. They have never seen a specialist or endured the long, exhausting process of elimination. It has simply been something that their doctor may have thrown out there, an option to consider, an avenue to explore at a later date, a last bid attempt to label symptoms for which they cannot find a root cause. There are people who scoff when I tell them that I also have ME, that despite months of investigations, MRIs and specialists, they say, “ME? Never heard of it!”. “Chronic fatigue? Aren’t we all a little tired? And those people are the ones who make this even more difficult for us, those people are the ones that make others so ignorant to the severity of this condition.

I’m not writing this for sympathy, although I am sure many of you will sympathise emphatically, I am writing it because it is so important to be aware that just because somebody doesn’t look sick, doesn’t mean that they are not. We have had to become fantastic actors, compulsive liars, experts at smiling and gritting our teeth. I have hidden the severity of Fibro from so many people, not through deliberate deception, but simply because sometimes we are even trying to fool ourselves.

Fibromyalgia can be a debilitating, excruciating, exhausting and life changing condition. It can be different from one day to the next, one person to the next, and there is no way of knowing when the next attack will happen. It’s simply a case of trying to figure out our individual triggers. For me, cold, wet weather always coincides with a flare, as does being tired, over exerting myself, through times of stress and anxiety. A simple cold will floor me for weeks, a gentle bump or bang can trigger a flare that will escalate for months. And then there are days where I will experience a flare from absolutely nowhere, in the depths of a blazing hot summer, on a holiday when I am rested and relaxed, at a time when I am feeling okay, when I have dared to take my eye off the ball and I wake up one morning and wham, back to reality.

Today, on Fibromyalgia Awareness day, I want to tell you this. Just because I am capable of going about my daily life today does not mean that I am capable of the same tomorrow. When you see me laughing and smiling please don’t assume that I am “better”, just know that I am doing the best I can at that present time. When I cancel plans last minute, please don’t call me a let down, or stop asking me out in the future, just know that right then, in that moment, I am in too much pain to join you. When I am enjoying a day out with my family, spending time with the children, don’t assume that I am no longer in pain, just know that the next day, when I lie in bed hurting, it will be worth it for every moment of hearing their laughter. When I smile and tell you that I’m doing well, that I feel great, know that I have probably been awake half the night, that I am probably popping pain killers left, right and centre. When you see me out walking with the buggy, swinging the kids around in the park, remember that you wouldn’t ever see me on a bad day, those are the days when we don’t even leave the house. When you tell me that it could be worse, that your Mother, your Grandma, your neighbour is fighting a much more serious illness, please know that I am sorry about that, that I sympathise whole heartedly, but that for me, right here and now, it is hard to imagine a time when I could feel worse, when my degree of pain could be greater.

When you tell me that I seem well, that there doesn’t look to be anything wrong with me, remember that just because you cannot see it, does not mean that I do not suffer.