The past few years have been filled with hospital admissions, medications, operations and one part of my body stopping working after another.

Around two years ago, I was diagnosed with Ehlers-Danlos Syndrome; a rare connective tissue disorder. I hadn't seen previous dislocations and problems as the start of it, and I thought just having to deal with Crohn's Disease was bad enough until the 'baggage' of the new diagnosis came along.

Due to EDS, I suffer from chronic pain, have frequent joint dislocations, my bladder doesn't work so I have to self-catheterise, my bowel doesn't work so I have to carry out irrigation whilst I wait for an ileostomy, my swallow function is deteriorating and I have suspected sleep apnoea. Secondary to EDS, I have Postural Orthostatic Tachycardia Syndrome (PoTS), a form of dysautomnia. This results in an inability to control my body temperature, fainting when I change posture, a breathing pattern disorder and numerous other symptoms which manifest themselves in a variety of ways.

These diagnoses have robbed me of my independence and any sense of normality in my life. To leave the house I have to use a wheelchair; I am unable to use a self-propelled chair as they cause my fingers/thumbs to dislocate and so I have to be pushed. I fought (with the help of my OT and physio) to have an assessment for a powerchair; after waiting for months and after various meetings, it was decided a power chair couldn't be provided as I'm unable to use it in the house due to the doorways not being wide enough, and the layout of our home means it cannot be adapted.

I opened up about the severe deterioration of my mental health since my physical health has declined and not being able to independently leave the house negatively impacts my wellbeing. At this stage, I am unable to get powerchair assistance from the local service, unable to adapt our house (even if we could afford to) and unable to even move myself any real distance in a manual chair. With a self-employed Dad who has had to take lots of time off to get me to appointments and hospitals, and a Mum who works part time as a TA in a school, we are not in a position to be able to fund a chair ourselves. I have written to an excess of 10 charities for support, but have only had rejections so far in view of them having an excessive number of applications. Just as I was at the end of my tether, it was kindly suggested that some fundraising may be able to be carried out to help towards the scooter I am hoping to purchase, which is £2,600. This will fit in my motability car, giving me the greatest scope of independence back I am able to have with my health in the state it is.

In addition to that, I'm needing to fund numerous other items such as a powerchair for use in the home and locally, a profiling bed and items to furnish our garage adaptation which has had to happen due to me no longer being able to walk up the stairs.

Thank you for reading about my situation - although things are pretty dire at the moment all I can do is hope for a turn in my fortunes and to a degree get some of the life of a twenty year old back.

Share this story