Today for me the sun shining where I live. I live at the seaside and the RNLI hovercraft has just gone out and done a rescue.
After a very long long unpleasant health journey I have now being diagnosed with RD to add to my list. My story is too long and full of too many negatives , but every body has a story unique to them and I want to find the positives in mine. Life is too short to relive the negative and lets all look forward to the nice things we do have.
So what is good?
Being Diagnosed,....Scary, gloomy, looking at everybody in a chair and motor scooter thinking is this going to be me next week? Ok, so what, its not nice and despite it feeling like the end of the world to me now their are people worse off than me.
Medication......from watching all your comments over the last few weeks when I found this site, it has been intimidating to start treatment, ( now week 3 MTX) but at least I am getting treatment after three years of waiting. The side effects so far are moderate but at least the doctors are doing something now.
Sunshine.......I love the sun. This week I discovered that Medication does not. Sunburn that wont heal and skin that hurts all over that has been exposed to sun. So slapped on the sunblock, dark glasses got a good book, sat on the sea front and asked a 70 year old women to help me up from my seat. She was glad to help and feel needed that was my good turn for the day.
I am only 51.......long long time in front of me on medication, doom and gloom. Decreasing ability! cant do much now so how much can it change....( dont answer that). I HAVE been worse and seen that side. So what if I go back to being completely bed bound having all my functions done for me. I am not there now can do some things for myself that I couldn't before.
New friends.......ok, so I cant compete competitively at ten pin bowling any more, but I now have time to get to know the people who come along and support that I never bothered with before. The hospital said welcome to the department when I was diagnosed 3 months ago. So I have deliberately made pleasant conversation with all my health professionals. They have to look after me for a long time now so I had better be nice to them and not grumble. I have discovered how many nice people sit on benches around town that now keep me company during my rests. For so many of them it there is their only point of contact from living on their own and nobody to talk to. So I have done another good turn.
True friends.....dont ask me how I am. They speak to me not the disease. I am not an illness. They make fun of me in public as they cut my food, people are staring anyway so we give them something to stare at. When we stand in the que at the self service canteen they mock loudly " spose you want me to carry this for you, what did you last slave die of?"
For the last few months I have been self obsessed, I threw a pity party with myself, wo is me and sat in a bubble. RD is favourite topic on google and must have searched so many sites, to learn and understand an additional diagnosis. It was lonely in my little bubble and I was missing what was going on outside. That was then this is now.
Sorry about the ramble, hope my anecdotes have made some of you smile. I am off now to laugh with my 4 children.
I hope to read positive anecdotes in replies. Sympathy not allowed in this post.
and completely agree with you. We all have our down times and of course it is a complete shock when you are first diagnosed. I think we are all allowed a little pity time!!
Just got to keep going.....
People's kindness
RD can so often be invisible to our nearest and dearest
My poor fingers
Post holiday......
