It’s not over, until I say it’s over!

‘Happiness is being at peace with what is. It is trusting that your past was, your present is, and your future will be.’

When I woke up this morning it was almost 5am. Naturally I turned to my left and lying right beside me was…him. He stretched his arm towards the alarm and immediately dismissed it. He then turned to the right and kissed me on the head.

‘Time for work baby, You go back to sleep’.

I pulled the duvet up to my chin and watched as he pulled on his jumper and high visibility jacket. Next he checked for his lunch money and packed all his possessions into his rucksack. Then I smiled as I knew the next part was the best, (and worst) part of my day. He gave me a massive cuddle and I clung to him, as I always do.

‘Don’t go, I don’t want you to leave’

‘I have to go, but I will text you when I get to work’.

With that he silently leaves, and I listen out for the click of the lock… – he’s gone.

That is my typical morning. My beautiful, normal week day morning. Everyday in which I wake in this manner, I am already thankful for the day. No matter how I feel, or how much I achieve that day, I have woken up at 5am, with my fella and with so much love.

I think that this is the point really. Life isn’t one big marching band of excitement. Life isn’t waking up to a champagne lifestyle or to the highest paid job, with a huge “social status”. It’s about the little things, the ‘auto-pilot’ things people take for granted, it’s about being at peace with what you have, and most importantly who you are.

As always, I have had my fair share of IV medication this year and it has taken its toll. I completed a whole two week course of home IVs, only to then catch a chest infection and be an inpatient again a few days later. Then 3 weeks later I need IVs again. The last stint happened to be 1 month prior to a two week holiday we had booked to Kos, a wonderful Greek Island. Understandably I was panicked. As you can imagine I had already been through the ringer, and I felt like Robin Deakin going back for more (sorry mate ha). My weight had not recovered at all since the last set of IVs, so I was swimming in dangerous waters. Unfortunately, my SATS were under 90 so I had to go ahead with treatment. Same old shit, different week as terms of care. I had to go through A & E, then spend a night on MAU then I was transferred to the respiratory ward. I had to put up with a cannula, until they could find a single soul to fit my portacath. 48 hours in, and I had to refuse continuing medication until my portacath was accessed. I was not prepared to have another cannula. Especially with the strength and regularity of my medications. When access was gained I was away! I always refuse to buy tv in hospital for the first 3-4 days because I am too ill to concentrate on it, therefore, 4 walls become my entertainment… let the boredom begin.

4 days in and the whole respiratory ward had come down with Nora Virus. A self centred visitor came in infected and it spread like wild fire. I was in segregated facilities as always, which means I am isolated from every other patient. That made no baring on my catching the bugger! I was sick and in the bathroom more than I was out. Then came phase 2 – Dehydration. Bags of fluid on permanently and holding absolutely nothing in in terms of food. Well, although I was concerned about my Holiday, I had much bigger issues. My weight plummeted to a measly 5 stone 13. And then came Nasal Gastro feeds. Most CF’s have these, but not me! I am a giant wimp. Well after trying to shove that ridiculous tube down my nose and back my throat, my body was having none of it. I kept rejecting it. Now it was time for some serious hard work. I had 10 days left until I had to board my flight, 10 days to get some food down me to just be able to fly.

So I ate. And for everybody who thinks this is easy… you are very wrong!! My day went like this:

Wake up to a cooked breakfast or large sandwiches, plus calorie shot supplement and calorie yogurt supplement.

Mid morning – calorie yogurt supplement with brazil and peanuts.

Lunch time – cooked meal with calorie shot supplement and dessert.

Mid Afternoon – Angel Delight with full fat cream, milk and calorie supplement added.

Dinner Time – Cooked meal, calorie shot supplement and dessert.

Supper – Brazil nuts, peanuts and cereal bar.

This all had to be consumed after eating virtually nothing for 7 weeks. I looked pregnant all the time and the pain was excruciating. There were so many tears, but I never gave up, the holiday was in my sights. Baths were painful as all my bones dug into the bottom, but showers are a no, as fainting is so easy from weakness. I walked the stairs to gain strength. I forced myself out to get exercise. My man took me for meals and to McDonalds as much as I could stand. And nobody would put doubt in my mind that I could not do it. I ended up with an acute pneumothorax and another horrible batch of lung bleed. This happened days before my flight, but I was determined. Not to mention I had liver functions which were so abnormal, my hospital were going to pull the plug on my holiday, the weekend before. No way though, I was going – and I think they were very sympathetic to my situation, and an inactive, poolside holiday was agreed (with good travel insurance, of course).

The day arrived and I woke up feeling like I’d be run over with a steam roller. I felt horrendous, but I was overwhelmed with happiness. I pulled it out of the bag. With extreme hard work and dedication, not just from me, my whole family. I went on holiday for two weeks with over 50 co-codomol tablets and packets of paracetamol. I can assure you, not a single one returned. The medications I was taking could have knocked out a small horse, which meant alcohol was almost off limits (besides a few cheeky cocktails), but whatever the circumstances I had the best two weeks of my life. We had beautiful weather and went to beautiful places. We even hired a buggy and toured the Island. We went up into the mountains of Zia, and watched the sunset from a roof top Taverna. We even went on a boat trip to Turkey, and spent the day shopping and enjoying the sun. We enjoyed beautiful food, met some wonderful people and I even played table tennis & boules! It was the perfect medication and the most beautiful resort.

(In case, you perhaps fancy a trip to the Greek Island Kos, our hotel was ‘Hotel Platanista’ it is a 4* plus. It came under the Thomson Platinum selection and is a splendid choice.)

None of the holiday would have been possible without the patience and dedication of my man. He understood I couldn’t run around and therefore nothing was too much trouble. When I couldn’t get a drink, he brought one to me, When I could no longer walk, he carried me, and he dished out all of my medications, did all the shop runs, and even gave me his extra pillow! He is the most supportive and wonderful human being I have ever met. And I truly believe, the happiness he has given me has reflected in my health.

I have learned this year, that to be happy it is about being at peace with what is and like I have suggested, who you are. I will probably never finish my degree, or become a Teacher like I always planned. I probably will never have children, or go Travelling. I will never climb Everest or run the London Marathon, but does that make my life less happy than others? I may have moved in a different direction to what I once planned, but I am beyond happy. I am surrounded by love, my head is full of plans and excitement. My life is not what I expected, but I am glad. I am not sure if I believe in fate, but I suppose what is meant to be, will be. I am now almost 11 weeks IV free, and touch wood, this will continue as long as possible. I have gained a stone in 11 weeks, but not without hard work!

It is never over, until you say it’s over!