High up in the clouds

Dear world,

I’m currently writing this 35,000ft over the Atlantic, according to the flight path we are flying over Porcupine Plain (who comes up with these names?!). We have 6 hours 13 minutes left before we land in Orlando and we are travelling at 563mph. So that’s the interesting stuff done with! (Technically as I'm posting this I am now sunning myself in our very own private villa, it's about 32 degrees and not even lunchtime yet! Such a tease aren't I whilst you all endure the UK winter) 

The last month or so feels like I’ve been at the fairground and struggling to get off the Ferris wheel. It’s been a constant cycle of drama that I just can’t seem to shrug off. Take me back to the normal days when I could just get through the day without ending up at A&E; or seeing some kind of health professional; or seeing more blood than I should ever see in my lifetime let alone in 6 weeks. I feel since I started this blog that I have had more drama than normal and there was me worrying that I wouldn’t have enough to write about! I hope I haven’t jinxed myself by starting this blog that now my life feels to take on more drama.

I have come to realise since having PH that normal stuff that had no negative effect on me before seems to these days cause me so many more complications. I have always been allergic to penicillin since I was little but as I am on sildenafil for my PH (more commonly known as the little blue pill, Viagra) it turns out it doesn’t like me to be on any other antibiotics. So after I had the flu and pneumonia jab I noticed my arm was starting to really ache and I could barely move it, 24 hours later I ended up in out of hours surgery to be told I had an infection from the jab and needed to be prescribed antibiotics. I wished the doctor luck with this as I knew this wasn’t an easy task to do!

Last year I had my wisdom teeth out and got a really bad infection and at that time they prescribed me erythromycin which I quickly learnt I was allergic to. So knowing I had limited options she suggested a tablet, doxycycline. I must admit in the last 18 months I have become very weary of any medical professional who don’t know about PH. Not because I don’t value their opinion, but as it is such a rare, unknown disease, I don’t need anymore added complications thrown in by someone treating me who doesn’t understand my condition. You probably think I sound like a right spoilt brat, “oh she won’t be treated by me as I’m not good enough for her” but at the best of times I struggle to have little control of my PH that to add someone in who isn’t an expert in it just makes me question them. Anyway I digress as always! So I waited to take my prescription until I had phoned my pharmacist at Sheffield just to check that I was always ok to take this. He confirmed I was fine to take it and that it shouldn’t interact with my PH medication. I take it and 48 hours later having not stopped being sick from the tablet I ended up back in A&E, this time the infection had turned into cellulitis. Turns out I’m also now allergic to doxycycline! Told you more drama! My arm was badly swollen, ridiculously hot and I was in a lot of pain with it. So the hospital started me on IV treatment for 4 days and then a course of oral tablets 12 a day for a week. Pleased to say the IV worked and now the infection has disappeared.

Me whilst on IV drug. The squiggly line shoes where the infection was spreading. 

It was during this week in hospital that it was my PH friend Sarah’s funeral. I had hoped to make it but due to issues internally at the hospital I didn’t make it so my dad went in my place. He brought me the order of service back to me at the hospital and even though I wasn’t there it was nice to read the programme and feel like I was there in spirit. There was a reading at the back of it which hit a chord with me. It reminded me life can be so short, whether short or long, you must live it. I’ve copied below as it summed up Sarah’s attitude to life and one that I think since being diagnosed with PH that I follow the same mantra.

The Dash

I read of a man who stood to speak at the funeral of a friend.

He referred to the dates on her tombstone from the beginning to the end.

He noted that first came the date of her birth

and spoke the following date with tears,

But he said what mattered most of all was the dash between those years.

For that dash represents all the time that she spent alive on earth

And now only those who loved her know what that little line is worth.

For it matters not how much we own, the cars, the house, the cash.

What matters is how we live and love and how we spend our dash.

So think about this long and hard; are there things you’d like to change?

For you never know how much time is left that can still be rearranged.

If we could just slow down enough to consider what’s true and real

And always try to understand the way other people feel.

And be less quick to anger and show appreciation more

And love the people in our lives like we’ve never loved before.

If we treat each other with respect and more often wear a smile.

Remembering that this special dash might only last a little while.

So when your eulogy is being read with your life’s actions to rehash

Would you be proud of the things they say about how you spent your dash?

This reading really resonates with me.  I have always been a magpie as Andy will confirm, loving everything sparkly and shiny that I can get my hands on! But since being diagnosed it’s only now I realise how much before I used to take my health for granted. I always thought I would be like everyone else, be able to have my own family, become a Grandma, live to be old age with Andy, we would be the old couple at the beach holding hands eating our fish and chips (gluten free of course) and if I was to get ill it would be when I was old and grey not still in my early 30s.

Whether you have an illness or you drop dead tomorrow with no warning you need to live life as though today is the last. Don’t have any regrets. Make up with people you fall out with. Have a smile on your face even when life takes you through the shit times. Most of us who will read this live in a far better place than other people we see on the tele most days, who are fleeing from their countries due to poverty, rape, war, terrorists. Whilst we all have our own bad days and worries, you only get one life.

Make it count.

As always thanks for reading.

Lots of Love,

Gem xx