lifes little lessons


this whole thing has taught me many lessons, although I’m not in unversity I seem to be learning new things every day.  This weeks lesson has been about myself.  Since 2009, when I began to feel ill, I’d picked up little tricks to hide how I really felt.  I only realise now how many tricks I’d picked up.  At school I would keep myself busy so I didn’t have to eat lunch.  I’d leave the house in the morning without eating breakfast, then I’d practice my violin, or go and see Matthew at lunch time, so no one had to see my eat.  I’d go to after school classes to keep my mind occupied and then go to the gym for an hour, and then go swimming for an hour, simply to keep my mind off of the pain.  I was so competely and utterly shattered, but it didn’t seem to matter.  Looking back on it now, I have no idea how I managed to keep it up!

I often wonder what those two/three years would have been like if I wasn’t so ill.  I look back on a few moments and I feel upset that I didn’t get to live them to their full potential.  My 6th year dance was wonderful, but it was tainted with pain.  I’d lost my sparkle and seemed to just blend into the background.  I smiled for the cameras, but when I look at my face in the pictures, I can see that I wasn’t completely happy. I look back at the little tricks that I had learned and wonder how I managed to get by!  At my 6th year dance, instead of joining in with the fun, I sat at the table and watched everyone.  I pushed my food around my plate and told everyone I didnt like what was on the menu.  When people offered to buy me drinks I’d kindly refuse and say I already had one, when really alcohol made my stomach ache, so i avoided it at all costs.  On the bus journey home, I remember feeling sad, all my friends looked beautiful, they were all happily intoxicated and singing songs and I was taking deep breathes, trying to conceal the pain I was in.  For the few of you who were in my higher psychology class, you will remember the day of our final exam, I was very ill. I’d spent the night in agony, and hadn’t eaten anything all day.  I remember that day so vividly, i was in so much pain. I raced through the exam and walked out 45 minutes early because I knew I was going to throw up.  After calling Matthew to pick me up, I went home and threw up, crawled into bed and went to sleep.  I have no idea how I managed to get a B in that exam.  One memory I wish I could re-live was a day trip my family and i took to Bruges.  It was a beautiful city with such an amazing history, but i can’t remember any of it, the only thing I remember is walking around behind my family, trying my hardest to hide the pain I was in.  I remember at one point bending over in the street to try and ease the pain, and Christy asked me what was wrong, this was the time that I now realise things were starting to get dangerous.

Another moment that is still quite raw for me even now, is my uncles wedding.  It was such a lovely time.  All our family were together, everyone looked beautiful and my baby cousins were so gorgeous, but again, it was tainted with how much pain I was in.  I remember waking up on the day and I knew it was going to be a sore day.  I didn’t eat breakfast, and had to sit down to put my dress on because my stomach was just consistently sore.  After the service we went to a little resturant near the sea front, and we went the wrong way and had to walk a little bit more, I walked the hole way in almost complete silence, begging my body not to throw up or pass out.  When we reached the venue, I immediatly walked straight to the toilets and threw up, baring in mind that I hadn’t eaten anything in almost three days, so I was now throwing up the water I was surviving on.  looking back now I don’t understand how I managed to go on for so long, but I’d found so many little tricks to help me get through the day.  

At work I had developed a routine; I’d make sure that everyone else had their lunch before me, so I could go last.  My boss is a lovely woman, who always made sure everyone had a break and had a sandwich, this was good for everyone else, but hell for me! How was I going to hide this!? So I devised a plan…I would tell people I wasn’t hungry, and make sure they had all had their lunch before me.  I tried to have my lunch as late in the day as I could, as I knew I was going to be in too much pain after eating, that I would be useless.  I’d then sit down and squish my sandwich with my fingers, to make it look like I’d eaten more than I had and I’d then put most of it in the bin.  When it came to the clean down, I’d ask to do the jobs that you could do by yourself.  I often offered to clean the conservatory because it only took one person, and when i swept the floor, I could bend over without it looking too odd. This was the only way I could get some sort of relief from the pain.  I can’t believe I just carried on with my life as best as I could, but hindsight is a great thing and at the time, it was the only way I could cope.

A few days ago I was having a bad day.  I was in a lot of pain, even tramadol wasn’t touching it and I was missing Matthew like crazy.  I felt useless, jobless, I couldn’t go to uni…I was bored, sore and missing my man, so I did what my body was telling me to do.  I had a good old cry.  All these old feelings came rushing out, I realised I needed to stop hiding how I really felt, if I was sad, I was going to have a good old cry! For once in almost three years, I didn’t have to hide how I really felt any more.  I texted a few close friends and told them I needed them, which was extremely hard for me, but very theraputic and I realised it was what I’d been needing the whole time.  As I said previously, I’m learning something new every day, and this weeks lesson has been that it is okay to be sad.  It is okay to feel sorry for yourself and it’s okay to just have a day in your pyjamas feeling awful, but it’s how you go about changing that feeling that matters the most.  For three years of my life I was terrified of showing my loved ones how vulnerable I felt, so now I knew what I had to do…mid sob I texted them telling them I was terrifed to ask for their help, even though I needed it.  Pressing send took me about half an hour, but it was like a weight was lifted off my shoulders.  I know now that your true friends are there to share your happiness but also to hold you and comfort you when you’re at your saddest.  I will always be so grateful to the people that have opened their arms for me. They have helped me realise what truely matters in life.

 

“crying doesn’t show someone who is weak, but someone who has been strong for too long.”

Today!


Today, a lovely thing happened: Mum took me through to Dundee for a shop, and when we were in tk maxx, I was stopped by a family friend. She told me that she was so proud of me after reading my blog, and she was almost crying! It was so touching to know that my story, and my writing can move someone to tears, and for someone to stop me in the shops was even more lovely! I have an appointment for my stoma referral next week, as I’m still having stomach cramps and I’m not sure if that’s normal! It’s 10 weeks today since my operation! It’s really odd to think that at 2.30 this morning, 10 weeks ago I was being wrapped up and pushed into an ambulance panicking, not knowing what was going to happen to me. It’s been a wild ten weeks, but I’ve found out so much about myself 🙂
Sally has also been a little rascal, today when I was trying on a pair of shoes, just as I lifted my leg up to pull the shoe off, she let out a little squeaky one! The woman beside me looked at me and went to her boyfriend in the next isle and said “that girl just farted!” it’s amazing to see how quick people are to judge, especially when you step out of disabled toilets! I often use the disabled toilets as they are more spacious and more often they have a unit or shelf that you can put your stoma products on if you need to. But the dirty looks you get when you walk out of them are incredible! Another lesson I’ve learnt through all of this is; don’t be too quick to judge. I have an illness that is pretty much invisible unless you’re lucky enough to have seen my in my knickers! 😉 which most people have, if they have my Facebook! Haha 🙂
I had an amazing time out yesterday, I drove in by myself, which was great on the way there, but I was having cramps on the way back! And cramping and trying to concentrate on a roundabout at rush hour is pretttttty difficult! My friends had bought me a little cupcake money bank, with money in it! Which was so lovely 🙂 we had lunch at the old bank bar, and then went to a gorgeous little cafe for a cup of peppermint tea 🙂 it was so nice to see my friends again, and even though Sally was farting away, they didn’t bat an eyelid, they asked loads of questions and made me feel totally normal 🙂 they were great! I’m still taking it day by day, I still get a bit frightened when my cramps get really bad, but my mum and dad are always there to give me a reassuring hug! And to take me into a&e if I feel it’s getting too bad. Everything is going good though, I’ll carry on updating for all those that are interested! Thank you again for reading! Lotsa love – SallyStoma.

Today’s update


Today has been both a good and a bad day. I didn’t have a very good start to the day, as I woke up having very bad stomach cramps again. I was tossing and turning and couldn’t get comfy at all! But after laying still for 10 minutes I decided to get up and was greeted by our gorgeous new puppy, Paddy! He immediately put me in a good mood and I forgot that I’d only gotten about 2 hours sleep. As soon as I stood up, Sally started working over time! With in 30 minutes my bag had filled up 3 times! When Sally works this much, I have to watch out I don’t get dehydrated. With having a stoma, you’re advised to drink 1 litre above the normal as the food and liquid doesn’t reach your large intestine, and you don’t absorb as much of the vitamins as you would if you had a normal working bowel. I also managed 12 lengths of the pool tonight which made me feel great! I’m going to venture into Dundee by myself tomorrow to meet my friends for lunch, which I’m oddly excited about! I’ve not really been completely by myself for almost 9 weeks! So driving on my own will be a lovely new challenge 🙂
Again, I’m just taking every day as it comes, I can wake up one morning and feel full of energy, and the next day I can barely open my eyes. It’s oddly wonderful feeling the different emotions every day. When I was so ill for the two years previous all my energy was spent keeping myself awake. I was eating as little as I could and working as much as I could, so my loved ones couldn’t see me not eating anything. I didn’t have the energy to feel anything other than pain. It consumed me. But now I have the energy to feel other things! I’ve felt anger, sadness and completely overwhelmed. But I’ve also felt like a new person. so, so happy and last but not least, I’ve felt hunger! Which has been wonderful 🙂 Everday is new, and I’m learning and loving every bit of it!

to all my friends.


I need to make the times I’ve cried 3 now.  I posted this blog yesterday mainly for myself, I needed an outlet to talk about what had happened, I’ve read a gazzilion pages on the internet, that say this is a part of grieving that is completely normal; to want to talk and talk about what has happened. They say that I need to grieve for the loss that I’ve had.  But I don’t see it as a loss, yes, I’ve had 20cm of my bowel removed, and I’ve had to defer this year at university. BUT I’ve gained a freakin’ awesome scar, a new (pain free (almost)) shot at life! and it’s made me really appreciate the little things.  Reading the response I’m getting by simply telling my story is overwhelming.  I’m sitting in the living room, reading the incredible things people are writing, and I just had a good old cry! I am so touched that you have all taken the time out to read my story, and even more time to write a message to me, thank you so much. 

If I’ve learned one thing from this whole experience it’s to not sweat the small stuff:

1. If you’re having a fight with someone you love, forgive them! Not many things can be so awful that you can’t forgive the people you love, because if you were to ever lose them you’d never forgive yourself, and that’s a whole lot worse. 

2.  Take 10 minutes out of each day completely and utterly for yourself, NO facebook, NO mobile phones. Just completely and utterly alone, it feels so healthy.

3. Look out for the little things and smile.  I was in the pool last week and a little boy splashed me, instead of getting angry, I splashed him back.  When the annoying old people are walking too slowly in front of you, notice them holding hands and take a minute to think “that could be me some day” and more than anything, when you feel yourself getting angry at stupid little things, just stop. Life is far too short. 🙂

I’m taking everything in one day at a time since my operation.  Sometimes I wake up in the morning and think “eughhh, I can’t be bothered empyting my bag!!!!” But it has just become a part of my day. I was in the lift at uni a few weeks ago, and Sally let out a MASSIVE fart and it made me laugh so much. I must have looked like a complete and utter nut, farting away in the corner of a lift and then snorting with laughter. The poor woman I was in the lift with couldn’t get out quick enough.  But you’ve just got to take it in your stride! One minute my bag will be completely empty, and the next it will be completely full.  I always have to know where the nearest toilet is, and I carry around a spare set of clothes just in case Sally desides to freak out and expell everything I’ve eaten in the past day in a nanosecond.  But that’s just part of me, and all you can do is accept it and move on.  🙂

If anyone has any questions about living with a stoma, or how to use the bags, how to clean it, PLEASE just ask, I won’t be offended and no question is too silly! I would love to help.

not to forget my parents!


Of course I couldn’t have done any of this without my parents.  They have been there through it all, from the tears we all cried with frustration, when, sitting at the dinner table, I wasn’t eating anything. To waking up in recovery and seeing my poor, tired, frightened parents faces. 

I want to point out that having a stoma doesn’t just affect you,  It includes your whole family.  The day I woke up in H.D.U, my parents were both there, right beside me.  My mum harrassed the nurses to let her sleep beside me, and my dad sneaked me in chocolate buttons when I was starving and was supposed to be on a liquid diet! (melted chocolate is liquid, right!?) They were there for every new step.  The first time I saw Sally (my stoma) tears were streaming down my face, I clung to my dad’s hand and looked away, I couldn’t face it all. But he was there to help me.  The first time I had to change my bag my hear was racing, I was petrified, but my mum understood.  She sprayed some perfume on her scarf and wrapped it around my nose so I couldn’t smell it, and she gently changed my bag for me, and when I was ready to do it myself, she stood firmly beside me and I knew she was going to help me whenever I needed it.

When I left the hospital, my dad wheeled my gently from ward 8 to the car, he helped me into my seat, and pulled the seatbelt across me, all the time making sure I was comfortable and not in any pain. When I got home, my brothers were there to greet me, and to help me with simple things like lifting the kettle or getting something from the top shelf. (the benefits of having a brother over 6 foot tall are endless!)

When I got home, I didn’t realise how difficult certain things would be.  I couldn’t bend over, so pulling up trousers and tights was like solving a rubix cube blindfolded! But bam! there was magic mum, ready to help me with anything I needed.  and lets not get me started on having a shower! I braved it one day, but didn’t realise my bandage wasn’t waterproof, so it fell off.  To my horror, I looked at my scar, and it had popped open, I gently put my jimjams back on and shouted for dad, who took one look at my belly and exclaimed “oh…thats not right!” and took me down the doctors.

My parents have been completely and utterly amazing, I will never forget their loving words, much needed cuddles and constant encouragement.  Every day is a new day, and I am constantly doing more and more, but like a baby taking its first steps, right behind me, there are two sets of eager eyes, making sure their baby doesn’t fall.

I love them more than they will ever know.

post surgery + a thank you to Matthew.


It’s now 9 weeks since my first surgery, 7 weeks since my scar popped open and 3 weeks since my second little operation.  I’m still in daily pain, and I’ve had to give up university for this year.  I’m on painkillers everyday, but I’m making slow and steady progress.  I managed to go swimming twice this week, and managed 10 lengths of the pool each time.  Having something like this happen to you makes you appreciate the small things in life.  Doing 10 lengths of the pool feels like a marathon, and I still get a bit panicky if I’m away from my parents for a long time, but I’m doing well.  I’ve taken having a stoma in my stride, it feels like I’ve always had it!  Her name is Sally, and she’s become my friend. 🙂 for two years I couldn’t eat without being in pain, and having an ileostomy has allowed me to live a different life! 
 
Having such major surgery forces you to change the way you live, and I’d like to think I’ve taken it in my stride.  There are only two time I can think of that I’ve really cried my eyes out, and I rarely cry! 
 
The first time was when I was browsing Facebook, and realised that whilst my friends were out partying, and complaining about having hangovers, I was on the sofa, applying for disability benefits, and struggling to walk 20 metres.  Never mind worrying about what drink I was going to buy for tonights shenanigans!  But then I took the time out to realise something…I was alive.  Well and truly alive. Yes, I’d had a hard 8 weeks, but in the long run, 8 weeks is hardly anything.  I had the ability to live my life, and boy was I going to live it! At that moment I told myself I was only going to look at this positively. 
 
The second time I cried to the point of wanting to throw up was when I saw Matthew for the first time after a month. (He’s had to move to England for work for 6 months.) Matthew is my best friend, he’s the only friend who has been consistent throughout this whole ordeal, albeit I’ve become massively closer to a few other people during this time.  But I’ve been with Matthew for 4 years, so he’s seen it all.  When I first started getting ill, he was the only person to continuously believe me.  He would rub my back for hours on end when I was in agony, he would cuddle me when I had no energy to move.  He would leave parties early when he could see I was struggling, he would text me every day and make sure I was okay.  He would bring my sweeties and presents to try and make me feel better, and he didn’t once doubt that I was ill.  He came to the hospital with me, and held my hand when I felt completely alone.  He has been more than a friend and more than a boyfriend to me.  For two years he was practically my carer, and I will be eternally grateful to him.  He is a unique and incredible human being and I am so so proud of his gentle nature and beautiful personality.  I will love him forever.

waking up.


I woke up in recovery, with my parents by my side and there were tubes everywhere! I had lines coming from both arms, one in each wrist, and a main line coming from my neck. I had a catheter in, a tube down my nose into my stomach, and an oxygen mask on.  I must have looked terrifying! But I was still feeling the effects of the general anesthetic and fell in and out of sleep.  I woke up next in the high dependency unit.  I was hooked up to loads of different machines and drips and an oxygen tube, and on top of all of this, I had an 11 inch scar up my stomach, and my insides were now on my outsides! I was completely and utterly overwhelmed.  I think I pretty much just slept for the next few days, but then I started to become determined.  I was going to get better! 
 
I started to harass the staff, asking them to take out this tube and that tube! I must have been a right pest! The first thing to go was the oxygen, I took off the mask and said to the nurse “Look, I can breathe fine!” So she let me take the mask off.  Next I set to work on the catheter, I said I promised I’d inform them in plenty of time when I needed the toilet, so they could get me the commode, as I was hooked up to so many machines that I couldn’t really move.  So they agreed, and out came that tube.  Next was the tube down my nose.  It was EXTREMELY annoying, and hurt whenever I swallowed, I told the nurses this and this was then literally WHIPPED out my nose,  I felt it coming out all of the way from my stomach, it was disgusting, but so relieving to get it out! 
 
After these I just seemed to keep improving, I was moved back up to the surgical ward, and given more and more independence every day 🙂 More tubes came out, and soon I was walking around, It was like taking baby steps again, but when something like this happens to you, you find some sort of new MEGA patience, and you can tolerate a lot more than you thought! I was out in no time, well…10 days. 
 
But of course, nothing pans out that simply.  When I returned to the hospital to get my staples out, I found out my scar was infected, and after I had the staples removed, my scar got infected and popped right open.  I had to get  it packed with this sea weed stuff every day for almost a month.  After my scar healed I started to have stomach cramps again, and found out my bowel and become restricted, and I needed a bowel dilatation.  This was just a small operation, and I was out of hospital after another 8 day stay.  That was two weeks ago, and here we are today! I’m taking every thing day by day, and making baby steps back to being well again 🙂