Thursday 18 January 2018

What I miss from before I got ill


This is quite a sad post as it's about loss and what I have lost to illness. Illness has take a lot away from me and although I have gained so much since becoming ill there is still a lot of loss.

I miss he freedom of dance. Now every step is cautiously calculated, my balance off kilter, not longer the flexible self I use to be instead my hypermobile joints just sublux, dislocate and cause pain rather than grace and beauty.

I miss horse riding and the exhilaration of being in the saddle and taking brave new steps like jumping over a new height and being at one with the horse - even just spending time with horses, grooming them and putting on their rugs (or pj's as I called them).

I miss my independence; now being alone causes anxiety and fear. I used to get on the train to see friends and volunteer in different parts of the country. Now I'm reliant upon having someone with me to ensure I'm safe.

I miss University; studying to be a nurse; having a purpose and goal in life. Now I'm the one being cared for and having little reason to get up in the morning. 

I miss being able to read books, even ones in adjusted text; now i can barely make it through a few pages without loosing concentration and forgetting what it is I'm reading.

I miss volunteering and feeling like I'm making a difference in the world. I used to do so much work - travelling down to London for meeting, conducting research, pilot projects. I did recently start volunteering at the local hospice, but my seizures put a hold on that.

I miss going to the gym. I do physio but I'm limited to what I can do at the home. To go to the gym would mean having to pay for a carer to accompany me and that's a financial pressure as I have to pay for my own care currently and although I get disability benefits (PIP) it doesn't come close enough to coving the full cost of having a disability.

 (one of my favourite ballet films)

The #MillionsMissing campaign aims to raise awareness for those with M.E. missing from the world due to their illness. Its is a campaign to raise better awareness and treatment for the with M.E.