I have recently been diagnosed with a very rare, disabling vasculitis that is affecting my whole body. There is no cure. I have gone from being an outgoing woman with a wonderful little family, planning my wedding at the end of the year to someone who is in immense pain, struggling to do simple tasks and wondering what is coming next.

I have been lucky enough to get an appointment with specialists at Addenbrokes in Cambridge, at the end of April, but this comes at a cost. We are just a normal family with no reserves.

Living with disability has financial challenges that I hadn’t even considered. There are obvious things for this appointment, like the the train fare and accommodation. There are other more day to day costs, like having to get more pre prepared meals because I cant‘t manage to make meals any longer, increase in taxi fares because I can’t always drive, having to buy a walking stick, a medical alert bracelet, heat blankets and heat pads etc to name a few.

Applying for the little help that there is out there takes time, and if you normally work and get by ok, the help just isn‘t there.

My trips across the country will more than likely be fairly regular, and I need to come up with a long term plan. In the meantime I just need to get there at the end of the month.

Thank you for taking the time to read my story.