The ‘New Normal’

I started off this blog being inspired generally by beauty bloggers and general bloggers and I became encouraged to start my own platform.

I find it hard speaking about myself and my experiences and emotions. A few blog posts later, and changing websites 3 times, I want to talk about something which is very personal to me and the more I think about it, the more I believe that talking about issues that I struggle with will mean that I grow from them, rather than sit them inside and let my anxiety and stress build up and thus, make me feel worse.

Before I start I just would like to say that I am very much someone who does not like to publish problems and struggles. I still to this day haven’t really accepted the ‘new normal’ for myself.

I can remember growing up being this very individual, confident, loud, bubbly character and in many ways I still am that person. I was not afraid of anything, I was obsessed with sports, did gymnastics and competed for a very long time, I did dance, cheerleading, ballet, netball, participated in so many things. I felt invincible to the world.

I was recently diagnosed with Hypermobility Syndrome with secondary Fibromyalgia after nearly 6 years of regular hospital/doctors appointments, a range of tests (including brain MRIs, etc.). Hypermobility, reasonably, I can deal with, as I have spent my life with this condition and one of the reasons I was so good at gymnastics! Fibro, on the other hand, is another story.

Fibromyalgia is a neurological and rheumatic condition that causes widespread pain throughout the body. It is hard to diagnose firstly because it is unknown where this conditions starts, ends and even to diagnose. It took me 6 years to gather a diagnosis.

The way I describe Fibro is being hypersensitive, my body is literally on red-alert 24/7, ready to attack any thing wrong in my body. I literally fight before I need to, which is great for things such as cuts, bruises, illnesses etc. because I am consistently prepared for bad to happen. However, one little injury or cut, bruises, illness again, shuts me down, causing me to feel ‘flu-like symptoms’, as my body goes into overdrive to prepare to fight them.

There are so many different symptoms of Fibromyalgia, and it varies from person to person, however the main symptoms of Fibro include, chronic widespread pain and increased sensitivity to pain, chronic fatigue with sleep disturbance, “fibro-fog” and problems concentrating/remembering things, muscle stiffness, cramp, spasms, pins and needles, intense itching, swelling and general sensitivity, digestive issues including IBS and headaches. Also, anxiety and depression are common in those with Fibromyalgia through many factors.

It is an invisible illness and, much like most invisible illnesses, because it is so hard to diagnose and understand, many doctors and individuals do not believe it to be ‘real’. It can be triggered by a range of things, including injury, already established illness/contracted illness or traumatic events. I suffer with Hypermobility Syndrome with secondary Fibromyalgia, triggered through already having Hypermobility.

The facts

Anyone of all ages can be affected by Fibro. I am often told it is ‘for older people’ or that I am ‘too young’ but that is uneducation. Listen to your body, you know when something is wrong. I have had Fibro for a very long time, and I am only 20! It can occur at any point in your life.

It affects every individual in a different way. Some individuals have Fibromyalgia take over their entire body, not being able to move or really do anything at all. I am very lucky in that I have good and bad days.

It is not degenerative. Some days are worse than others, especially when having flare ups, but luckily it does not damage your body in any way.

People will not believe you. I am telling you, there will always be one or two who don’t really see that anything is wrong, especially because you are up and about, going to places, you have friends, a social life, you go to work and get good grades at University. You have a laugh and have a good sense of humour. Better yet, you don’t look ill! You are fine! Right?! Wrong. Please don’t judge a book by its’ cover.

To name a few symptoms, it causes me to be chronically fatigued almost everyday, I am in pain that comes in forms of aches, pins and needles, shooting pain, burning pain, sharp prodding pain, and feelings that I’ve pulled or strained muscles. I lose concentration, I dip in and out of daydreams, I struggle to remember things sometimes such as words or phrases or even conversations I have had (This has been the weird one because I have always had an extremely strong memory, remembering things from a very young age, even ages 1 and 2). For the past 2 years I have suffered from mild anxiety – I experience panic attacks, low moods, fear of irrational things. I get obsessive when I’m tired, anxious and/or stressed which means that I become slightly ‘OCD’ some would say and order things to perfection with fear that something bad will happen. Some days I could eat for England, other days I can’t think of consuming even water.

It seems that everything I do in my life I ‘pay’ for. If I have a day that I have done too much or have pushed myself too hard, then I suffer the consequences of feeling achy or poorly. These days I call my ‘bad’ days – the days where life feels way too hard.

Good day

A typical good day for me is having relatively little pain, and a long period of time without feeling too tired. I can function ok and I can think straight, I am in a good mood and I am motivated and ready for the day. I eat well and I feel excited and want to do things to make up for the time of having a bad day.

Bad day

A bad day is every few days when I have done too much the night before or had a stressful or busy week and I become very drowsy, tired, agitated and uncomfortable. I feel fluey, headachy, tired and teary and too weak to bring myself to do anything. I can’t think straight and everything is uncomfortable, my clothes are bothering me, my hair, my makeup. I am itchy and tense, but I cannot sleep because I will feel worse, or even worse, not be able to sleep at night and let the symptoms last longer into the next day.

I am hard on myself sometimes. But then I remind myself well why should I be? It is something I have grown up with, something I have evolved with, something that eats at myself. It is something that I haven’t come to terms with yet, admittedly, because my mind and brain are ready for the world but my body and my anxious side get the better of me, and my conscious mind just can’t understand why I can’t do the things I used to be able to do.

But in many ways I am very ‘normal’ because of the nature of invisible illnesses – I look, act, and think ‘normally’. To others.

I can become frustrated with people, even my parents or my boyfriend, who forget that some days I can’t just do simple things. Sometimes, they think I’m being lazy, or complain that I’m being moody or quiet but people don’t see that in my mind I have a million things – pains, stressors, anxious thoughts, foggy brain – flying around.

I try and hide most of my pains, though when I do try to explain, it is hard for someone to understand that even the smallest thing such as having the heating on or it raining or just eating something that my body doesn’t respond to will cause me to feel things x100.

Plus, being ill ontop of being ‘ill’ makes me some sort of drama queen – a simple common cold feels like the flu. A chesty cough feels like my neck, back and chest feels is crumbling. A headache becomes neck pain, eye strain and fatigue. Even things that pop up around my body, or pains that I am not used to, I am unsure of being ‘serious’ things that I need to get checked, or simply down to my strange invisible illness that doesn’t make sense to myself, let alone the doctors who are trying to help.

I have also had people saying to me that I am ‘attention seeking’, that it ‘isn’t real’, or that it ‘isn’t as bad as I’m making it out to be.’  I’ve had some so called ‘friends’ laughing about it to others or commenting on things that I can’t control. I have even had a doctor telling me that he ‘can’t find anything wrong with me’ and to ‘go get some exercise’. For a while I did have thoughts that my body was probably all in my head, maybe I am over-reacting. Maybe it isn’t even real.

But how can I make up these symptoms and emotions, when I compare myself from before and after? I am not ‘weak’ – I am petite build, but my muscles are there, I can lift and hold and carry. I just hurt. I am not ‘small minded’ or ‘hormonal’ – my anxiety is real, my panics are real, my worrying about the world and irrational fears are very very real to me. And I am in pain, I am tired all the time. I struggle. And if anything it is harder to admit how hard I find simple tasks sometimes than it is admitting that I hurt.

I am very lucky in that, nowadays, I have extremely supportive people around me. My parents and gymnastics I owe to my incredibly positive outlook on life and the attitude I have that is so disciplined that I will not let my ‘illness’ – whatever it may be – stop me from just living.  My boyfriend is my ultimate rock and looks after me in every single way possible. I owe my heart and life to these people.

Because of this attitude I have obtained, I am able to go out with friends, I even party, I try and make lectures and have a reasonably active social life. I have a part time job and I work really really hard. My life is typical, on the outside.

But most people never see the ‘real’ me, who cries because I am in so much pain or that suddenly comes over with the worst tiredness and just fall asleep, or stay in bed for hours on end because I can’t bring myself to even go to the toilet, brush my hair, or get food, let alone go outside.

I don’t know what I want to gain from this post. I doubt anyone will even really acknowledge or see it. But I’m not really writing it for others to read. I am writing it for myself, to keep up with myself, to learn that everything is ok and that sometimes you just need to breathe. Sometimes writing about it is the best form of therapy.

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