Dear Claire, in just over 6 months time you'll be getting married.. Everything is working out, well, organised and paid for (for the most part). Those weird aches and pains have been diagnosed for nearly a year now, something linked to lupus. You haven't done much research into into though have you? Been looking after yourself? No ? what's new there then. It might be a good time to read up on it a little, perhaps so you are aware of anything unusual. Ignore the advice of the rheumatologist who told you 'don't google lupus you'll scare yourself stupid' Now is the time to perhaps shit yourself just a little, it'll be good for you in the long run. Those blood tests you just had done in November because you were feeling extra tired, it might be an idea to chase them up or request a kidney function test… not sure if that was included at the time.. it could have been, they just have forgotten to tell you or it could be that not much has shown up. Yet.
Now over the next few weeks things are going to start get really tough, so brace yourself and be prepared. First you'll start to get really really tired and a bit nauseous but you won't pay much attention to that, you're always tired. But when your eyes look puffy and swollen it's not a antihistamine you need it's a Doctor. You shouldn't wait a second longer.
What will follow you would never have imagined in your whole lifetime, but yet it will be feel like a lifetime, but it will all be ok and you will be well enough to get married at the end.
There will be lots of tears, and that's fine, because it is all so grossly unfair, not just to happen at all but to happen six months before a wedding you've waited a decade for.
On the flip side there are a couple of things that will keep you going over the next six months and you will laugh at times.
1. Ginger nuts - will help with the nausea but avoid the lucozade, it makes your empty stomach (trust me it will be very empty) sound like a 30 year old boiler warming up for winter.
2. Egg sandwiches - not until you get the top notch anti-sickness drugs, Mum will cut them into triangles for you, Mark will cut them into squares.
3. Pancake day laughter - Mark trying to flip pancakes for you and burning himself
4. Domino's in CCU - Mum, a Domino's pizza and some jealous CCU nurses.
5. Tramadol dreams - will help you sleep at least two days away from the hellishly long days, a sleepy holiday away from the reality of the time.
But no matter how hard it gets, know this. You will be looked after, you will be loved and you will get better.
to be continued…
read part one here.
Wednesday 22 January 2014
Tuesday 7 January 2014
Plagued by illness
I know from personal experience, that when you suffer from a chronic or rare condition, you are faced with questions, challenges and comments about your illness and your capabilities on a daily basis, be it by those generally interested, making sense of all the information or by misplaced sentiment. At the other end of the spectrum you are faced with those who simply avoid any association with you, or someone else who is ill or suffering.
Wednesday 1 January 2014
New Resolve
“We will open the book. Its pages are blank. We are going to put words on them ourselves. The book is called Opportunity and its first chapter is New Year’s Day.” - Edith Lovejoy Pierce
This year it's thirteen years since I met the boy that would be the man I married, twelve years since our first date, six years since we moved in together and five years since we got engaged, got a cat and I got my first borderline diagnosis (2009 was a busy year). Now three years a Boardman family member and hopefully by the end of it a first time buyer and homeowner.