Leigh and I are BOTH chronically ill. Leigh has many disabilities/illnesses (mainly EDS) that have made her very sick indeed. All of which are incurable. In Leigh’s case, it is life-limiting. Leigh has multiple organ failure. She is TPN dependant which means she has nurses come in twice a day to connect/disconnect her feed up to her hickman line. The line goes through her chest into a vein in her heart so the nutrition gets pumped round her body, missing out the whole digestive system. Without this Leigh would, to put it quite simply, die. She cannot eat anything and anything she drinks does not get absorbed as she has a drainage tube in her tummy (a PEG) to drain out stomach contents. Even when she does drink water she feels sick.Leigh also has district nurses come once a day to change the medicine in her syringe driver. This is a machine that slowly pushes the syringe - giving Leigh 24 hour anti-sickness through a butterfly needle in her leg. Unfortunately this is getting trickier and trickier as it is all scar tissue and hurts her so much. Even with this medicine she is physically sick daily.Leigh’s joints are dislocating constantly, causing her agonising pain. She is wheelchair bound and uses a hoist system to get out of bed into her powerchair or her specialised lounge chair. She self catheterises. She gets infections constantly. We spend 90% of our time in bed.

DESPITE ALL THIS AND MORE Leigh remains INCREDIBLY positive.I am also very poorly with multiple chronic illnesses, but am very lucky they are not life-limiting, just incurable. I am also mainly wheelchair dependent as I can only walk the smallest amount, and not at all without support. Our one dream is to get married to eachother. We want to do this as soon as possible before Leigh deteriorates even more.

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