Hi, im Carli - firstly thank you for taking the time to read my story. About 7yrs ago, i started to notice i was feeling exhausted but put it down to stress & just carried on.

In 2012 i was diagnosed with Chronic Fatigue Syndrome/ME - i became unable to work & was so unwell i was often in bed unwell for weeks but i was too afraid to mention anything to my friends & family about it as its an often misunderstood but can be extremely debilitatiing

From then onwards the diagnoses kept coming & my health spiralled out of control. Six days before my 30th birthday i had problems with my legs & went into A&E- i came out on crutches and within 6 months i was relying on a powered wheelchair- unable to self propel due to the severity of my conditions. I was sent to the top hospitaks in the UK & am currently under the care of the top consultants at Kings College; Univeristy College Hospital London; Guys & St Thomas’; Eastbourne, Maidstone & Tunbridge Wells hospitals for my varying multiple conditions.

After 5-6yrs of tests; and suffering from Two “Invisible Ilnesses” as well as severe Psoriatic Arthritis, HyperLordosis, severe Synovitis & Osteoperosis- i inject 20mg subcutaneous Methotrexate every Tuesday as it is the only medication that can help with my arthtitis

Unfortunately there is no cure & very limited treatments & little understanding of Ehlers Danlos Syndrome - i have Type III (Hypermobile) although i also have symptoms of several other types including Classical & Vascular

All different types of EDS are caused by faults in certain genes that make connective tissue (basically everything apart from bones) weaker. The faulty gene may be inherited from one parent or both- sometimes it can occur in someone for the 1st time. EDS can affect everybody in different ways from relatively mild, some disabled & in rarer cases life threatening. I fall into the middle category - however the top EDS specialist in the UK has seen me & considers me a “complex case”

I have joint hypermobility, loose unstable joints that dislocate easily, extreme fatigue, skin that bruises easily, digestive problems (i also have severe Bowel problems & am under a top consultant bowel surgeon at St Thomas’) Dizziness & increased heart rate after standing up (I also have the heart condition Postural Orthostatic Tachycardia Syndrome which im on meds for) I hadnt heard of EDS until i was diagnosed with it & as part of my journey i would like to raise awareness of this condition so that more research can be done to better help others with the varying types of these conditions

Unfortunately, every condition i have is progressive; degenerative & incurable

There is very little that can be done to help me medically anymore, and my health is getting worse & worse- including my mental health

Ive been housebound and basically bedbound for the last 6yrs- even though i still do more every day than im supposed to to push myself & push my limits rather than give into my fate.

I love life & all i want to do is live every day like its my last & make the very most of every monent as i take none of them for granted

I want to start a Youtube channel & document my entire journey in the hopes of showing others that if i can do it- anybody can & to try to be as entertaining for those who find it difficult to leave the house due to physical or mental health reasons

Ive never asked anyone for any help, and have spent years raising money for other charities - but as im starting to struggle more; im increasingly aware that there is a time limit

ive missed out on so much- i just want to get out into the world & try to find my place in it- and if there is no place for me- then lets carve one together ;)

All im asking is would you buy me a drink on a night out? If you could spare anything from a couple of quid to £10 it can make a world of difference to me

There are no treatments, or cures for me; and i accept that- but i truly feel like i need to do this for ME for the first time in my life

Thank You from the bottom of my heart for taking the time to read my story & if youre able to contribute in any way- im eternally grateful 🙏🏼😘💯♿️💜✌🏼🌟🎶🌈🦄✨

All My Love Always Carli x