To Live Is The Rarest Thing In The World, Most People Just Exist

Shit. Have I seriously not written since the Summer? How bad am I? Especially when I said I would try to be more consistent.

There isn't a cat in hells chance I can give you three months of updates, plus you'd be pretty fucking bored by the times I got to the end of September!! So I'll give you some 'highlights' then add the pretty pictures at the end just because I really can't be arsed to set it all out properly with it being the middle of the night and all.

We are ten months into living in our own home, my nephew Beau, is ten months old & walking! I would say I proberly am the healthiest PHYSICALLY (I would never say mentally because lets face facts I'm always going to be a total fuck up) I have been in the last 15 years of my life.

I had a recent trip to Harefield & my consultant was over the moon at my progress since my last visit. The TPN treatment that I started back in march seems to have done wonders for my body, with me actually absorbing all the vitamins & electrodes I so desperately craved. I have gained weight (which I am personally finding hard to accept) & have also kept any chest bugs at bay. I was told that I am looking incredibly healthy & not as fragile as I used to look which is of course nice to hear... I do have my CF clinic in Exeter first thing tomorrow morning so that's proberly why I am struggling with sleep tonight, I am not concerned anything bad will be said, but you do get bogged down with it all the constant blah.

I am back & forth to Torbay stoma clinic at the moment for treatments because the skin has become incredibly sore & broken down around Steve & I still have the ongoing issues of severe dehydration & blockages but I am here, I am doing what I can & the recent good reports suggest I should keep doing what I am doing!

So what have I been up to lately? Still enjoying the zoo on my Thursdays, long as I haven't had a bad night or the weather isn't completely shite... I have signed up to be an elf again during the Grotto season & am looking forward to all the festivities that go alongside ....

We have celebrated birthdays, big and small. Meals out, cosy nights in & even a wedding thrown into the mix.

Stefan surprised me with a trip to Crocodiles of the World again but this time I got to feed the Nile female crocodiles which was an awesome experience & one on my 'bucket' list that I have created as I wanted to really make some memories & tick off things that realistically I could do.

Stefan & I were invited & attended a ball with some very dear friends & it was all in aid of Harefield Hospital & the British Heart Foundation. It really gave us the chance to get out of our comfort zone & dress to the nines for a good cause & it was such a special evening, we won't soon forget. Stef himself has been doing brilliantly on his fitness & bodybuilding, he even got the title of 'Member of the Month' at his gym & is looking forward to more opportunities next year.

I have had some really nice trips out to the cinema with good friends, light lunches, & just quiet time in front of the TV with my sister & a mug of tea & chocolate.

I am really excited for the next few weeks & all the Christmas build up, Bristol & Bath Market, Christmas parties, The Holly Ball, lunches & lights. Watching my squish Beau enjoying it all for the first time is just insane & I don't think I even mentioned that I am going to be an Auntie again to his sister Madison, due in February! Very crazy times for everyone right now I imagine with 2019 drawing to a close...

One positive thing I can say for not writing in so long is not because I don't have the energy, it's because I am actually living. I take each day as it comes and yes I still get those where I can't even get out of bed & function let alone step outside the front door, but I have come on wonders in the last few months as have some special relationships & I am extremely grateful for that. I will leave you to those photo's now & update just before the big day to wish you all a Happy Holiday....

Thank you as always for reading, truly thankful xxx   

Summer, Summer, Summer Time

I am really not doing so well at this am I?! It does prove one thing however & that life is busy!!

Birthday Claws

Italiano

Things have been crazy over the last eight weeks or so & full of celebrations. Other than a few blips, I have been really enjoying the days that have so quickly passed us by.

We celebrated Stefan's 30th Birthday back in June, with a meal with his family & bowling & then a BBQ at my mums. He even had two cakes which he devoured...

One of Stef's Cake!

Auntie Sue From Sussex

Progress!

Our eight year wedding anniversary was next & we went to see the new Marvel Spiderman movie. I then pretty much had a week long celebration of my 36th birthday with several close friends & family.

I had Birthday pancakes, a Birthday dinner, Birthday drinks with my zoomies, (zoo mates) lunch with my squish, Beau & his Grandma, an Italian dinner with my family & a BBQ with my in-laws. So basically, I just ate. The thing that I am most good at in life! 

Getting involved! 31st July 2019

Roise & I

Summer Mood

My Older Brother, Leigh

Stef treated me to a new tattoo as well as other bits & pieces & I've been busy seeing friends on a regular basis to keep my spirits up. 

Squish is now crawling!!

<3

Ironman Zombie Ink from Spiderman Far From Home

Zoomies out to celebrate my Birthday xxx

I'm really enjoying the Zoo at the moment, the peak season has got a bit crazy, but with the nice weather, it's been lovely to spend a day there most weeks & talk to visitors. I also helped out with the Penguin & Prosecco event night at Living Coasts & was just in the procession for the annual Paignton Carnival handing out goodies from the zoo with other volunteers & staff. A laugh as always.

We have got a new bike... The 750 was sold & Stef now has his dream Suzuki GSXR 1000 K7 that he is putting his own stamp on over the coming months with help from our brother in law Pete. He is also doing incredibly well with his training at the gym with his PT Ben & has come on leaps & bounds in just a couple months to almost comp ready. I love to eat so it doesn't really appeal to me, especially as I struggle to put weight on, but I am very proud of his sheer determination & dedication to get to where he wants in life. 

Exmouth, Seven Years Post Transplant 26/07/2019

I have just celebrated my 7th year post double lung transplant. Stef took me to Exmouth for the evening where we had a three course meal, stroll on the beach, a decent nights sleep! & breakfast in the morning... I was also taken aback with an insane huge ceramic bulldog head he got for me which is sat proud of place in our house. (you CANNOT miss it!)

I do feel I have been thoroughly spoilt by everyone special to me over the last month, it has been one of the best Summers I have had in a long time. All spent in our amazing own home of course! 

Made By My Hayley

New Bike, Black, in front of Old....

  

After the move I hadn't concentrated on breeding this season as wanted to give my snakes & myself a well earned break. I have however, had two clutches & the first hatched a week ago - just six eggs, but absolutely stunning little babies which has got me all excited for the following season in 2020...

Now there has been some downfalls in the mist of all the excitement. I am now completely exhausted & having real trouble with staying hydrated. I am still on my TPN treatment & with recent results, it does look like this will be here to stay for the unforeseen future. I struggle when I disconnect at the weekends with cramps & thirst & I just don't think my body will be able to cope without it now. This will be decided by the team in early September. 

My amazing lung anniversary gift

I don't feel all that body confident these days, the stoma is being a pain my ass (literally) my hair is falling out more, my eyes pop often (blood shot red) with the pressure my kidneys are under & I feel like a big bloaty water blob, full of fluid, lumps & bumps everywhere & very sore / bruised to the touch. Not much I can do about this but suck it up. I wouldn't be me without the journey I have been through, so no regrets, just sometimes a silent whisper of why me...

August is ALOT quieter, so I am going to take time out to rest, recoup & catch up with people I don't get to see very often.

Until next time guys, I hope you enjoy the Summer holidays & take care of each other!

3rd August 2019

 Thank you for reading, understanding & all your support as always. xxxx

Groundhog Days.... Are Still Worth It

I am so crap at updating this for you, life is going by so quickly these days I just don't know what day we are in most of the time.

I am still on the TPN treatment, two months down the line & although frustrating at times, it has just become another daily routine in order for me to be around on this planet... I saw the specialist a fortnight ago & he wants me on it until September before we decide if it will be a permanent medicine regime. My cramps have improved, but my kidneys, surprisingly remain the same which I think they are disappointed with. (As am I)

Kaos' has come on leaps & bounds with his protocol. We have been able to have at least four complete strangers (to him) visit the house using his training technique & he has welcomed them with loving paws & his backside for you to rub after a few minutes.... I am so bloody proud of him. They have both settled in perfectly now & you can see they see the place as their forever home. We have already been here for four months but it just feels like it has always been our home. It's really weird that I don't miss the house that I lived for in eleven years, but the honest truth is that I haven't thought about it once... 

This little princess just turned two !

We have been up to a fair few things over the last few weeks.

Bmad (Charity bike event) has been & gone, which I attended on both days & the bike nights have started now throughout the Summer so Stef & I will be out with our brother in law for some rides, you won't be able to miss my Venom helmet! (Or nails...)

We went to Stefan's brothers fight night for support which he totally smashed, that was enjoyable to get dressed up & be out with all the family as we had VIP tables & it was the first time i had personally been to see Shane fight.

We've just celebrated my brothers 30th Birthday with a surprise BBQ (that went down well!) & of course I have been making some memories with good friends on days that I don't end up in A&E ;)

Random yoga sessions, pictures in a rapeseed field, watching my nephew & niece grow up, arcades & cream teas in the sunshine. 

I am really hoping the weather improves over the next few weeks before the all important events come up .... Stefan will be turning 30 years old in June, it'll be our 8 year wedding anniversary, I will hit the ripe old age of 36 & my lungs will be 7 towards the end of July! I say it all the time, but it never becomes any less significant. I cannot believe the extra time I have had here with all my family & friends. After all the problems with my stoma & kidneys I thought it may well be time to give up, but despite my resting bitch face & intolerable moods, I still cherish every living moment. To think within that 7 years we have our own little family (they maybe dogs, & skunks!) but animals are family too - Stefan has a great job, I have a very supportive hospital team, we both have incredible family members & friends & now we own our very own house. It is something that I never would have imagined for us a few years ago, but we made it. 

Cookie hit the media again....

Bane in the Rain...

Life isn't fucking easy either, there are times I wake up & think, not today, Stef has bad days, we don't talk, we yell, we take shit out on other people & have fall outs but we are extremely lucky at the end of the day & we work hard for what we have. No one can say otherwise. I battle every day to see the morning of the next day, I'd only need to stop one of my daily treatments to say goodbye, it really could be that easy. I see people struggle, especially more recently & it makes me fight all the more to want to carry on. I want BBQ's in our garden, trick or treaters at Halloween & to have the cosiest of Christmas's - I want that for years & years to come, but it can't be promised. Who knows what could happen around the corner... Until then I am just thankful I'll see tomorrow. 

 

Thank you for reading, understanding & all your support as always,

xxxxx