Downstairs, my two-year-old son, Lucas, is playing. He’s a beautiful, clever and sweet little boy who lights up my entire world.

Upstairs, I lie in a single bed, trapped in the shell of a body; bedridden permanently and suffering dozens of symptoms that mean that on most days the most I can do is crawl to the commode just a metre away.

Because of ME, I can only imagine being the mum that others get to be. I can’t hold, touch, speak or hear him as the sensitivity has an unbearable effect on me.

Yet, some people – even doctors – refuse to accept ME exists. They say it’s all in the mind and that I can wish myself better. I’ve lost friends and some of my family also think that it’s just sheer laziness.

I have been suffering ME since I was 10, but I was mild up until I was 19.

I got much worse when I was pregnant and after I had given birth it was all put down to pregnancy and childbirth and I had to wait months before a diagnosis was made. 

I was diagnosed at the age of 21, in October 2017, but it was too late – I was already very severely affected. 

I am bedridden permanently, wheelchair-bound and suffer severe exhaustion.

There’s paralysis, torturous pain, swallowing difficulties, double-vision, constantly feeling like I have full-blown flu, and migraines that are worse than you could ever imagine.

My entire body feels like it’s on fire and my head feels like it’s ready to explode on a continuous basis and I feel permanently poisoned.

I am suffering so much more than is able to be described:

• I am hypersensitive, suffering light, sound, touch, smell, motion and vibration sensitivities

• I am in a completely darkened room

 

 

• I am so weak, I cannot even feed, wash, clothe and care for myself in every way 

• I have to wear two eye-masks, earplugs, dark sunglasses and ear defenders  because I cannot tolerate much, if any, light and sound;

I have black card taped to my entire window, because light can cause terrible harm to my body and I will crash hard through simply through hearing loud voices. 

My disabled fiancé, Phil, cares for the entire household, but I can’t even sleep in the same room as him. I haven’t been able to in months.

I lost my career and passion of photography, animals and travel because of deterioration, and I’ve also lost most of my family and friends because they disbelieve that I’m truly sick. 

I have been told I am lazy, not fighting it, not trying to get better and that I need a kick up the arse. 

This disease is so poorly and has so much stigma, abuse, neglect, misunderstanding and mistreatment surrounding it, that I have now became an advocate.

When I am able to use my phone, I help others the best I can with my disease, and will fight to my death to get it the recognition it deserves.

My disease does not only leave sufferers bed-bound for weeks and months, but leaves them incapacitated for years and decades.

Several quality of life research studies have shown that the level of disability in ME can be just as great than many other serious medical conditions, including cancer and multiple sclerosis.

Phil and I were hoping to be married in July 2020 but I have yet not been able to plan a thing, I have been unable to do so, so our plans are currently on hold.

 

It is not only myself who suffers, but it is those who care for me too.

I cannot see the outside world and I cannot be involved when Lucas is laughing downstairs.

I cannot comfort him when he hurts himself or cries, I am not able hold, touch, speak and hear him as it is unbearable.

I just want nothing more than to be able to see him and some days I cannot see him at all.

Lucas does not understand with being so young, that he cannot be with his mum.

Given our circumstances, he is extremely bright and happy.

If I had not got this disease, I would never have realised how many people were suffering so terribly, and advocating has given me a purpose.

I spent so much time researching and talking to many sufferers of this disease.

Without the help of the ME Association, I would never have fulfilled this purpose of raising as much awareness as possible and I wouldn’t be where I am now.

This Living Death Disease torments every single aspect of my entire life. This 7ft by 6ft room is my world.