So today Thursday 28th February 2019 is Rare Disease Day and although I may not suffer with a rare disease myself – my life is fully affected by someone I love very much having a rare disease.
If you hadn’t guessed it I am talking about Rachel who blogs at Rocking2Stomas. Her ileostomy “Bob the Knob” and her urostomy “Squirt” were created due to her autonomic neuropathy which was triggered by getting food poisoning at the young age of 21. Autonomic Neuropathy is another umbrella term and I bloody hate terms like that where you don’t really fit into one category or another and as with many other diseases that fall under the lovely umbrella you often get pushed from pillar to post. I don’t see the umbrella as one which has a different diagnosis hanging from the spokes but I view it as “it doesn’t just rain it pours” because these conditions interlink with so many others it can be a downpour rather than a drizzle when you are on a “good day”.
I have written in the past about how I felt and struggled to come to terms with the fact my best friend is terminal. The fact she has very little down days about her diagnosis is astounding at times – I do think that this is because she keeps herself busy; probably too busy at times and then gets run down easier.
She often gets hospitalised with Sepsis and her ileostomy is prolapsed by a good chunk which could be affected by her Elher Danlos Syndrome or EDS for short. EDS affects the connective tissues which are present in practically every part of your body; it causes them to become more elastic and not always snap back as easily. We both have different variants of EDS mine being more down the hypermobility line rather than the classic which is rarer.
It obviously affects Rachel in many ways which she both talks about openly and shuts down with. When I say shut down she tries to bury her head in as much work as she can to help raise awareness etc. However not everyone hears the pain in her voice when she is trying not to go into hospital and praying she doesn’t have sepsis again (which my GP said often goes hand in hand with POTs) not everyone panics that she is working herself too hard and opens her body up for infection and she gets normal person sick worse than I do.
Then again part of me has so much pride and love for everything she does to try and get the word out about urostomy awareness amongst so many other subjects. The fact she knows her time is somewhat limited which has got to come with its own issues since you are more aware of it rather than being hit by a bus tomorrow. She is on a mission and all I want to do is support and help her in any way possible so she gets her message out even if that means being the horrible sod that tells her to stop.
Her having a rare life limiting disease makes us both very aware on the fact she wants to meet my kids and my kids both love their Auntie Rachel so of course they want to meet her too. Them meeting would fill my heart with such joy and I worry so much that we won’t get the chance. In fact even though my life has been so enriched because of Rachel it is also full of worry. Worry when she doesn’t get back to me within 24 hrs of me ringing/texting her, worry that she isn’t taking enough time for her and worry about everyone whose lives she has touched.
Rachel if you read this you know I love you and I truly am honoured to have you in my life you definitely are as individual as your disease!