I’m currently signed off sick because of this condition (amongst others). And I am practically tearing my hair out. I can’t stand lying down and doing nothing. I like to be out of the house. I need to be constantly mentally stimulated. That’s why I work both a 9-5 and my career…

Now I’m grown, I don’t like to stop. Because stopping means sitting down and thinking about everything. It means feeling all of the pains, rather than focusing and ignoring them. But, even my GP (who only sees me once every month or two) can see I just can’t right now. I’m a mess.

My joints are so stiff and swollen that if I shift them slightly, they lock up agonisingly and I either fall over or experience screaming pain. Knees that look like two swollen, pink elephants… Brain fog so thick that I can’t remember what someone said to me a couple of minutes ago. Heart palpitations causing me to sweat and flush bright red, then two minutes later shiver, freezing cold and unable to warm up! Panic. Just absolute panic, over everything. Panicked and very low thoughts, setting it all off worse again including the additional fibro-nerve pain which is triggered by trauma, stress and poor mental health and feels either like you have the flu, you’re burning, or you’re being stabbed everywhere. Stabbing migraine that feels like I’ve got a screwdriver jammed above my left ear, it’s been so long (I think this is day 8? I’ve lost focus. It might be longer.) that brings on sickness, dizziness and a complete lack of depth perception. I’ve walked into door frames four times today…

Last week I completely blacked out and fell dangerously. This is just freaking reality for so many of those of us with invisible illness. And it’s exhausting. So exhausting that we think about giving up so many times a day, just because we just can’t do it anymore. Even small amounts of pain can be tiring, living in constant pain is heart-shattering and soul-sucking. I feel for everyone who is battling inner demons, mental and physical. Even more, I feel for those who love us and have to watch us go through a constant struggle every damned day. I feel for those amazing partners, parents and friends who care for us, support us and enable us to be able to live our life in some way. It effects everyone around us in some way.

And yet – as we spread awareness of these problems, our chances of life improving increase. More awareness, more recognition, more persons who are aware of what’s going on – the more funding, the more research and the more support will be put into helping those who need it. The more you share your stories, your family’s stories – the more people will know, understand and want to help. The incidents of discrimination will begin to wane. There will be less explaining of why you need a wheelchair or walking aids under 30, and more support and understanding. So keep going, and keep sharing. #InvisibleIllnessAwareness #ArthiritisAwareness #FibromyalgiaAwareness #MentalHealthAwareness

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