I have Severe ME which leaves me completely bedridden and reliant on my Husband, when Our Daughter is home she helps to care for me too.

When I was first diagnosed with Myalgic Encephalomyelitis I went through a dark time. Having to come to terms with a life-altering illness hit me hard. I was left to grieve for my old life while learning to accept the limitations of my new life.

It’s not just been hard for me it’s been really hard for my Husband and Daughter too.

My Husband can be up all night with me on a bad night, he will always be by my side on the occasions that the pain is too severe to manage even if that means I need an ambulance to take me to the hospital. Yet he still manages to make it to work the next day.

Our Daughter has been remarkable and will still FaceTime every day while she is starting her life on her own terms after graduating from The University of Carlisle.

Throughout her university life, she sacrificed a lot and came home once or twice each month to help with my care as well as give some much needed relief to my Husband

I know how lucky I am to have them as unfortunately, not all families with such a drastic shift can save what they had.

While friends and family tried to be supportive they had to go on living their lives, unfortunately, that has left me with very few people in my life from the days before Myalgic Encephalomyelitis.

The worse my condition got the smaller my circle of support became which was when I started to find others online who also had Myalgic Encephalomyelitis, the more people I met the more apparent it was that every single one of us no matter the location in the world had all been let down by our public health systems.

We all had in common, feelings of loneliness, confusion and an absence of hope.

Friends & families didn’t understand our illness and what it was doing to destroy our lives. They just went on living their lives as they should, after all, there are only so many times they can agree to rain check on your pre-made plans before they give up.

Myalgic Encephalomyelitis is misunderstood and hearing advice like “Just put on your makeup and you will feel better about yourself” or “Once you get out of bed and start moving about you will be ok.”, as you can imagine this leaves ME Sufferers feeling like we are talking but no one is listening.

My body may be completely useless but my mind is still firing on all cylinders.

I was determined from the very start, that if I had this god-awful illness I had to do something or make an effort to help others.

I want people to see us again, maybe even see a glance at the people we were before we had our illnesses or disabilities.