For anyone who truly knows me, you will know that I find it very difficult to speak  about how I am feeling, how I really am and how I am coping with things day to day. I get myself worked up, cry, then still say it ‘doesn’t matter’ and carry on battling through alone. Having spoken to a few people about this, some have suggested that I try and write it all down to share instead; that this is how they deal with things and that to them it is a weight lifted from their shoulders not keeping it all in after being too anxious to openly speak out in person. That there is no shame. With ‘world mental health day’ also coming up tomorrow, Thursday 10th October 2019 – Now seems like a very good time. I know people who have shared their personal stories, for both mental and physical health…

So here I am, and I’m going to try this ‘writing a journal’ option too. With no shame. 

Maybe now is the time to speak about diseases that people are not openly aware of. Maybe now is the time to raise awareness for those of us with a chronic, “invisible” illness or functional disorder. Maybe now is the time to explain how not all of the most severe illnesses are in black and white and immediately staring you blank in the face. Maybe now is the time that I explain the hand in hand relationship, of M.E. & me…

M.E. stands for Myalgic Encephalomyelitis, and is also known as C.F.S, standing for Chronic Fatigue Syndrome. M.E. is a chronic, neuroimmune illness which effects the nervous and immune system. The symptoms you ask? Do you really want to know? I didn’t…

I was never ready to live my life with severe fatigue, extreme tiredness that will never go away, no matter how much you sleep or rest. No matter how exhausted you are, taking hours to fall asleep, yet seemingly drifting into a series of nightmares as soon as you close your eyes. Extreme confusion, difficulty remembering things or getting your head around the simplest of things (I have always been known as the ‘blonde one’ that everyone takes the mick out of anyway – at least we’ve had some laughs along the way!?)

Being unable to concentrate on any one thing for longer periods of time… Apart from the same, irritating clock ticking away each second when you’re lay within the same 4 walls at night. ‘What’s that mysterious ticking noise…’

What was I saying?

Headaches, dizziness, disorientation and nausea take over your life, almost as much as the excruciating pain in your whole body that you can never shift, no matter what you do. No matter how you lay down. No matter which medication you take. How long you soak in the bath or sit on the sofa. It DOES NOT go. The loss of mobility suddenly due to the pain and weakness you are going through. How would I describe such a pain you say? Well…

For all of you gym rats out there, imagine your hardest session to date and the DOMs you experience for the coming days after the session. Imagine if you will, multiplying the pain by 10 and adding a burning sensation & pins and needles on top of this. Every inch of your body… Every minute of the day… That is the most accurate description I can come up with. Horrible, right?

For you non-gym rats, I imagine it’s along the lines of being hit by a bus every day. Who knows…

If this isn’t enough, the mental health side of it knocks you around more than you can imagine. The anxiety, low mood, irritability and disinterest in the things you have always loved doing.

The impossibility of being able to go out, go to work… Basically being a hermit within the same 4 walls: Trust me; this is enough to make you start losing the plot. (Yes, I know I lost it a fair while ago now, that’s not the point)…

Now, my reason for writing this:

My ONLY aim from this other than allowing myself to speak out, is to raise awareness on M.E / C.F.S / Fibromyalgia and similar neuroimmune illnesses and functional disorders. “The ones with no specific cure”.

What I have experienced is the difficulty in speaking out and explaining how you are feeling, talking about your symptoms, explaining that you’re not ‘lazy’ or ‘can’t be bothered’; that you want nothing more than to resume your usual day to day life.

The difficulty in someone asking ‘how are you?’ & every time answering with the same, to be greeted with the response: ‘You’ll be back to yourself in no time’… The things we would do to resume to our “normal” self:- (

REALITY CHECK: This is normal for now… Things are different.

This will be a long and uphill battle for me and all I can say is I sympathise with EVERY SINGLE PERSON out there living with an “invisible” illness. To those of you who have been affected to the point of now being house/bed-bound, to those of you who may need a wheelchair or are limited to what you can do each day, and finally to those of you who can still live everyday life most of the time, then go plummeting into a relapse. I SYMPATHISE. I know how it feels to spiral in to this horrible state… I have not always lived my life like this.

Finally, I can’t explain the level of appreciation I have for my family and friends around me, the support I have received from everyone I have confided in and spoken to about this. My workplace and colleagues for their understanding and support. But very importantly: My appreciation toward the NHS staff. The Doctors, Nurses & HCA’s during my time in hospital, my GP, and finally to the specialist who has now finally concluded to M.E. / Functional Disorders & is supporting me and giving me the options for pain and management; arranging physiotherapy plans and offering advice on how to continue taking steps forward.

To anyone suffering, to anyone who wants to raise awareness, to anyone who even just wants to have a chat…

I AM HERE.

Whether you are experiencing a physical illness or an “invisible” illness. It is okay NOT TO BE okay. Do not suffer in silence. 

Thank you to everyone who got this far. I will continue to write fairly regularly as my journey continues…

<3 RAISING AWARENESS <3 https://www.meaction.net/about/what-is-me/