Goodbye 2014...

I'm sat on the toilet with crippling stomach pains listening to the parties in the houses nearby and the fireworks that have been going off even though it's only 10pm. I should have been on the M1, nearly home but I overdid it today shopping with the kids, my mum and my sister in the city centre so needed to rest. Plus I hadn't packed a thing and was in no fit state to try when I got back from shopping so our going home was delayed (much to my parents delight- one more night with the grandkids!) The plan is to get up early, have breakfast and then hit the motorway while everyone else is at home sleeping off their hangovers. 

Earlier tonight I was sat in the lounge discussing the last year with my parents. They said that they thought that 2014 was easier than 2013 but Hubby and I disagreed. We knew that 2013 would involve a big operation for me and I spent a lot of time getting my head around that fact (and a lot of money on the weekly therapy sessions to help me prepare emotionally for another trip into hospital and another big operation!) But 2014 caught us off guard. I was supposed to go into hospital early January, have the operation to take down the Stoma and get better. 

But if didn't happen. 

I wasn't supposed to need fluids through the Hickman line anymore. But I still did and now I've progressed onto needing feed. I wasn't even supposed to need a Hickman line by the end of this year but now I can't see a time without it because my bowel just doesn't work properly and I need the IV fluids/feed. I was supposed to be able to eat normally. And we all know that hasn't happened! I was supposed to be able to go to the toilet normally but instead I've found myself using catheters and irrigation to try and empty my pouch as it only has 10% function which is shit. Literally! I was supposed to go back to work but instead I've found myself unemployed and on benefits. I was supposed to be at home, getting the kids back into a routine, feeding them dinners that didn't involve chicken dippers, fish fingers or pizza. But I've yo-yoed in and out of hospital and left Hubby to cope all on his own. Again. 

But do you know what? Even amongst all the tears and ambulance trips to hospital and line infections it's not been that bad. I have to look for the silver linings and though they've been threadbare at times they have been there.  

For example, I've made amazing friends in hospital who provide me with support, a place to vent and we can share poo stories and bad day tales and we all just get it, no explanations or apologies required. I wish I had met you guys under different circumstances but I'm very lucky to have you in my life. Let's hope we see more of each other in clothes in 2015 and not in pjs in hospital!! 

Then there's the doctors and nurses who have basically kept me alive. Without them I would be buggered. They work so hard and are not paid their worth. They've looked after me when I've been in hospital and done their best to keep me well and at home. The team at St Marks in particular are very special and Dr7 and Dr8 are very dedicated to both their patients and the work that the hospital does. I really enjoyed going to the St Marks gala dinner and am hoping that if we do some more fundraing in 2015 we might get another invite!

I've managed to get away on holiday. Twice. A long weekend to the Isle of Wight with my parents, Hubby and the kids (albeit delayed by a blocked Hickman line) and 2 weeks in Devon/Cornwall in the summer which was glorious. Lots of happy memories were made and the holidays gave me something to look forward to and a reason to keep going, to keep fighting. 

I'm very lucky to have family support. My parents think nothing of coming down to help us at a moments notice (infact they keep a bag packed at all times so no matter what time of the day of night we call they can just jump in the car and be on the road within 5 minutes of hanging up!). They've had time off work, sometimes unpaid and their bosses are understanding which is lucky otherwise it could be a complete nightmare for them. At times they've practically lived with us for weeks on end, propping us up as a family and holding everything together at home. My sister saved some of her annual leave incase I was ill and we needed her help, which we did. Hubby's family have come down too to help and his sister even spent one half term with us to help me during the day with kids when Hubby was out at work. 

And talking of Hubby...well what can I say? He's amazing. He's my rock. There's not many men (or women) that could cope with what he's had to cope with and not once complain or feel hard done to. He's never once made me feel guilty for what this illness has done to our family. He's not perfect, don't get me wrong. He snores, he can only cook pizza and pasta and thinks a fairy comes to clean the toilet but you know what? I can live with that! I love him so much and I hope that 2015 is better because he deserves it to be as much as I do. 

I have spent lots of time with friends in 2014. Some of it's been while I'm hospital, which although not ideal is still as good a place as any for a coffee and a catch up. Thank you to all the people that did come to visit me, especially when I've been in St Marks which isn't exactly round the corner. Having visitors makes such a difference and can change your whole mood. I could go from being really down in the dumps and lonely to feeling more positive just from an hours visit from someone. 

I would like to make a special mention to one friend who got everyone to change their Facebook profile pictures to this picture. 

On that particular day I had had enough. I felt like all the fight in me had gone and that I just couldn't do it anymore. But seeing those pictures as I scrolled through Facebook gave me the boost I needed. It was something so simple, but so effective. Thank you. I'm not sure you realise how much of an impact that had on me but it was massive. It put the fight back in me. 

I could write all day about the friends that helped me through the year. The school mums have taken the kids to school and dropped them home, or kept them for tea. They've taken pictures for me when I've not made it to the assembly or the football match or text to remind me it's non uniform day. They've hugged me in the car park and taken me on trips out to the shops or to the doctors. And whilst they're all great there are a couple of particularly special people, ones that you can call at any time of the day or night. Ones that come and clean sick off the mattress, or can take one look at me and know whether an ambulance is needed or are great at 'care in the community'. You know who you are. Thank you lovely ladies (and menfolk). Same again in 2015? 😉 

I've got lots of friends that aren't local and don't see first hand how my illness affects me. They rely on this blog to keep up to date and we use texts and what's app plus FaceTime to keep in touch. Technology has helped so much. I can't imagine going through all of this say 10 years ago. Imagine how isolated I would be. I have a friend who lives in Germany who has helped with the kids, facetimed and kept in touch. Then there's my 'Dead Trampeh' friends, who are friends from school. There's been 2 babies born this last year and wedding invites too so lots of things there to make me smile. We even managed a day in London with me in a wheelchair! There was no way I was going to miss seeing The Bodyguard in the west end! 

 

Then there's my coffee group- my core support network. They've never left me out of anything, not deserted me like so many women tell me in hospital that their friends have done. Our Christmas night out was even tailored to meet my needs! Thanks guys. But it's been a year of change too; one friend left for Devon, there's been a new baby and talk of some more to follow in 2015 (hopefully- more cuddles for me). But without you guys I would be lost. 2015 marks our 10 year anniversary so we have to do something special for that. Best get onto the coffee group events coordinator...

And then there's Bestie. The big sister I don't have by blood. She's the ying to my yang, the butter to my bread, my other partner in crime! Other than Hubby she's the person who knows me the best, has witnessed the full extent of my illness, seen the good and the bad. She's stripped me off and put me to bed when I'm on the point of collapse and can't do it myself. She's googled my illness, trawling the chat rooms and internet sites for ideas that might help with the pain, new treatments and so that she can understand it better. She's taken me to the shops, the doctors, the hospital, wherever I've needed to go, whenever I've needed to go. She's looked after my kids as if they were her own and nothing, and I mean nothing is too much trouble.  She's amazing and thank you is not enough. 

So while 2014 has not been the best of years, looking back it could have been worse. There are plenty of occasions where I could have been a lot more unwell, or been in hospital longer and there was that emergency surgery in January that I escaped by the skin of my teeth. Without going too religious and at the risk of sounding like a preacher, I think that the power of prayer has a lot to do with my recovery and I'm thankful for all the masses that have been offered for me and all the times someone had lit a candle for me or included me in their prayers. 

So what does 2015 hold? I'm hoping a year of better health with less time spent in hospital and more time at home where I belong. I want to be able to give back to my friends instead of always being the one asking for a favour. I want family to visit us 'just because' and not because there's an emergency. I'm hoping this will be the year where I get to get the house straight and decluttered (although I'm not sure that will ever happen to tell you the truth!) So while I'm making wishes, I want to lose that last stone and get back to my goal weight and into my thin clothes! 

There's lots of happy events to look forward to: a new baby, weddings, special birthdays, a holiday, the Take That  tour... And I'm hoping to be able to tick a few more things off my bucket list, maybe even the skydive if my health improves enough. 

So Happy New Year to you all. I hope you have a happy and healthy 2015 and the chance to make lots of happy memories with friends and family.

NB x