This is Ruby.

Ruby is 40 years old and the daughter of my friend Kali.

She is fiercely loving and loyal, strikingly intelligent, hilarious, quirky and beautiful.

She is also completely bed-bound with ME/CFS (most commonly known as Chronic Fatigue Syndrome – Ruby’s condtion is extremely severe.).

For the past 3 years she has been confined to a completely dark room, barely able to tolerate even the slightest bit of light or noise.

She can have very quiet and slow conversations for up to 10 minutes on a good day. Some days she can walk the 10 steps to the toilet; most days not. She can’t listen to music or meditations.

She hasn’t seen the sky or most of her loved ones for 3 years.

Because ME/CFS is so misunderstood, medical and financial support is virtually non-existent.

Ruby receives 24/7 care from her extraordinary husband Jack and Mum Kali, along with some wonderful paid carers.

I know there are many people who love Ruby and like me, have felt completely helpless to do anything. That’s why I started this campaign.

Ruby spends 24 hours a day in bed, yet she is currently in a borrowed single electric bed.

As a minimum, I want to raise enough funds to purchase a Queen size electric bed so Ruby and Jack can at least lie next to each other sometimes. Ruby and Jack got married just 18 months before Ruby became unwell and needless to say, their current life together isn’t quite what they had planned.

The right bed will also make a big difference to managing Ruby’s back pain, increasing independence, and making life a bit easier for her carers.

All additional funds will be put toward helping Ruby and Jack move into a more suitable apartment and to replace furniture that is contaminated with black mould (including the washing machine, couch, and Jack’s bed). The mould they discovered under the carpet in the old apartment is thought to have worsened Ruby’s symptoms which is why they cannot take most things to their new place.

Instead of the flowers, chocolate, books etc you would normally give to someone who is sick you can now help Ruby this way.

Thank you for your generosity and compassion and please remember to say hello to the sky for Ruby!

For anyone who would like to know more about this awful illness, this video gives a good explanation: video from Channel 4 explaining ME/CFS