A thousand thanks to everyone who donated, and to those who’ve been in touch with words of encouragement.

The situation feels overwhelming at present, with help so far away.

I came across this petition for the UK Government to provide care on the NHS for people in my situation. It sums up the state of things better than I could:

www.change.org/p/nhs-nhs-to-provide-cci-aai-chiari-surgery-in-the-uk-to-all-eds-patients

Note: I am hypermobile but don’t yet have an EDS diagnosis. EDS is a type of connective tissue disorder which means amongst other things that joints easily dislocate, including those joints in the spine and skull. It also effects major organs.

Here, my baseline breathing has become laboured. I can feel the muscles of my diaphragm and abdomen becoming weak and sore, which is very frightening.

I’ve acquired a Philadelphia collar which is a harder neck brace. With some modifications (a folded towel jammed under the back to provide a lift for my skull), I can just about make it to the bathroom unassisted, using my mobility cane.

Eating, washing, and brushing teeth take place lying down. The shower is a dream now.

I feel my body becoming weaker, my heart is struggling and I continue to lose weight rapidly as my system works to meet the energy demands of this crisis.

I am working round the clock to try to find solutions for myself from my bed. I know I should be resting and can see clearly that the cognitive exertion is speeding my decline, but I haven’t another solution but to fight.

I need my friends more than ever at present. If anyone is linked to anyone who is in a position to offer a one to one loan, which could be paid back over a longer time, please get in touch.

If you feel able and inclined to share this campaign on social media, many hands make light work. My resources are limited, and every action by a friend counts toward a positive outcome.

Thanks for reading.
With love,
Mika