Hi, My name is Jo Moss, I’m 46, and I live in Norwich. But you won’t see me walking the streets of this fine City, because I am one of the Millions Missing.
Like millions of others – I live my life from one darkened room, I rely on carers for even my basic needs and I feel isolated from the outside world.
I have a severe form of a condition called Myalgic Encephalomyelitis – ME. ME is a severe, complex and devastating neurological disease that affects all body systems.
There is currently no cure or effective treatment for ME, and patients like myself are often abandoned by the medical profession, and left to fend for ourselves.
Before I became sick I had a full time job and a very active social life. I loved going to gigs with friends. And I loved to travel.
But ME has robbed me of everything I love.
This is my reality now;
- I live my life from one darkened room and rely on carers for even my basic needs.
- I’m confined to my bed due to severe fatigue, weakness and chronic pain.
- I’m alone for long periods of time because social interaction is exhausting and painful. Some days I struggle to communicate due to exhaustion and cognitive problems caused by ME.
- Noise and light cause me pain so I am forced to wear sunglasses and ear defenders.
- I only leave my home for hospital visits and it takes me weeks to recover.
- I used to have very long hair but I had no alternative but to shave it off because I couldn’t manage washing and drying it myself.
- Even the slightest activity causes my symptoms to worsen. This means, if I choose to spend a few minutes talking to a friend I’m likely to ‘pay’ for it for days afterwards.
- A common myth about ME is that we sleep 24/7 but this isn’t always the case. Even though I’m exhausted all the time I struggle to sleep or even rest due to pain, muscle spasms, dizziness and palpitations. I constantly feel agitated – in a state of unrest.
- ME is not just fatigue. It is a debilitating illness with a myriad of symptoms including: pain, dizziness, flu like symptoms, Post-exertional malaise (PEM), hypersensitivity to noise, touch, light etc, muscle spasms, cognitive problems (brain fog), sleep disturbances, weakness, tremors, headaches & migraines.
ME has stolen so much from me but the most frustrating part about this illness is not being believed, and not having a voice. We are not just ‘missing’ – we are ‘forgotten’
The lack of belief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide.
ME affects an estimated 65 million people worldwide yet there has been very little funding for biomedical research.
This has to change. We deserve more – our lives depend on it.
Please watch this video, share and help me raise awareness. Thank you
For more personal stories, reviews, news, inspirational quotes and in-depth discussion, please head over to my Facebook page.
If you would like to find out more about what it’s like to live with ME from fellow sufferers, please read: What we wish people knew about ME. #MEwishes Campaign. Each Wish represents a life devastated by this illness.