“clap along if you feel like a room without a roof…”


This song is just a feel-good song, I mean, you have to be having a REALLY bad day for this not to put a smile on your face!

I am sat here, at my window doing some work and watching the rain hammer down, and later am due to go swim some lengths with my friend at the uni gym- you know what that means? It means my scar is going to be out for everyone to see for the first time since the operation. Now that IS scary. That means that I wont be “introducing it” there will be no “yes, look here is my scar” it will just be me, walking in in a public place, in my bikini, and my scar will be there. People will see it, strangers who have no idea of the battle behind that scar, or of what it means to me, and trust me I am terrified. But, I don’t have a choice, I am not never going to wear a bikini again – and, as my friend said to me, if you can do it now when its at its most obvious, then it wont be an issue ever again. Wise words. She also promised to violently dunk someone if they dared stare for too long – which may have helped more than the wise words… 😉 But regardless, a day of facing fears. Wish me luck!

H x

Being comfortable in your own skin…


Being comfortable in your own skin...

…is a lot easier when your snuggled up in a onesie 😉 (check me ouuuttt! how cute do the little ears look?! Its my favourite one of about 5 😉 )

But it has a lot more to do with just accepting who you are, and what your doing. I love what I do, and my family and friends and everything that I have built up around me – but sometimes its hard to love my body when it keeps breaking, or letting me down. But that is now just a part of me, and one that I have to just get on with, although its obviously much easier to type that than to do.

My scar is looking so much better, and (as is obvious) has literally no impact on my life – how would a scar on my stomach make a difference in my lectures or my gym classes or chatting to my friends?! of course it doesn’t, of course; but thinking back to lying on that hospital bed I remember thinking nothing would be the same, dramatic? yes? morphine induced? probably. but still – the thought was there.

yesterday I was finishing unpacking all the stuff from home and I had accidently bought the bag with me from hospital, it had all my get well cards in and some Christmas decoratinos that my adorable Mum had bought in to cheer the room up – and it made me sad, and nostalgic (is that the right word here? I don’t know…) in a way I miss that time, but I don’t really understand why. I think the hospital room became my own weird little isolated world and cocoon, and although I have NO desire to return, I miss it in a weird way? now this red string of hearts is hanging off my pinboard at uni, and it use to hang under the TV at hospital – I held up a picture of it in hospital next to it in my room, its weird, but its a little link. a memory? a part of me 🙂

The literal most randomest warbliest post I have written in a while, apologies. Back to feeling happy with what your doing – you have made set decisions in life, accept them and live with them, and if they make you unhappy make new decisions that change your situation.
I am back at uni and loving this term so far, my lectures are really interesting (except the core one which so far isn’t so great) today my lecture was actually a third year module (yes, I’m keen 😉 ) and was all about computing in archaeology -really interesting stuff 🙂 very excited for the things to come and the opportunities to try things out and hopefully get some better and clearer ideas regarding my dissertation.

Hope you have all had a lovely January!

H x

Back to uni…


Sorry its been a while since my last post-  my parents very selfishly have their birthdays right after each other in January, which means that I have been mad present shopping, meal eating, birthday doing… if that makes sense!

I am hoping to go back to university tomorrow – and I am kind of scared! I haven’t been there for about 6 weeks now due to Christmas holidays, operation and recovery and it feels a bit weird heading back! Although don’t get me wrong I am really excited! Am hoping to get back on with uni life and stop being the ill one or the weaker one or whatever; and have planned to try lots of new activities whilst I am healthy and happy and try to make the most of what is on offer! I am nervous that I will get there and just be so exhausted I cant anything, but I guess we will cross that bridge when we come to it…

 

For now I am just hoping everything is okay, I have another blood test booked this week back at uni to help monitor the azathriaprine and check everything is okay. Aside from that my stomach has actually started to feel a bit weird today, and of course I am uber paranoid and on top of it, the operation was only a couple of weeks ago and I DESERVE a longer break than this! I think in fairness it was the over indulgence over the birthday period that may have caused the uncomfortableness I am now feeling, but we shall wait and see. What really stuck me earlier is that before the operation this would have been me on one of my best days, feeling pleased that it was under control and the like – but now it is not my norm, now I can tell that this isn’t okay or healthy, whereas before for me this was definitely good! Now I can tell that its sore, and that it has swollen up again and that something is not right, and that is reassuring to me because it means I hope I will catch anything as soon as it begins to flare again soon.

 

Its hard, living with the paranoia and instant suspicion as soon as something feels weird in my tummy. Do you guys feel it too? Over the back of your shoulder, even on the very best of days, it can make you nervous…I hope to live a long time without it actually returning and that this is just a one off bad day. I hope. Fingers crossed. It would crush me if it is anything more, It would be just too unfair.  Keep an eye on this space to see I guess!

 

Might be a while before I post again, because of being thrown back into uni! But I hope you are all happy and healthy 🙂

 

H x

one month ago today


I might do a longer post later, I’m not sure.

But, 20/12/2013 I had my operation, one month ago today. I cant believe it, seems so long ago, another lifetime that I was waiting in that hospital ward holding my mums hand and watching the minute on the clock tick by and waiting, waiting. I remember waking up in recovery. I remember being given my morphine button. I remember getting wheeled back to my room – we had to go in a lift and the bed bumped in and out of the lift doors. I remember seeing my mum for the first time. I remember asking if I got a stoma bag. I remember it. But it feels so long ago.

 

Im nostalgic about it in a weird way I guess, I feel like a big thing that was in my life is over, in terms of the operation. A huge step in my life has been taken, forwards I hope; and of course I am glad, but it is a weird feeling. I hope that, in a weird selfish way, my scar remains visible for a while longer (which I know it will) but because I get caught in this weird place – one where I am stuck between not wanting people to treat me differently and treat me ill, but also wanting them to know I am ill (or was ill – hopefully its mainly in the past) and accept that fact when I have a bad day and not just think I am moaning. With the hospital and the surgery and the scar I was no longer in that place, I was accepted as having been ill and weaker and needing to recover, and I am not trying to say I want that, or need it in my life; but it felt good to have proof and to not be constantly trying to justify how I felt when I was down. Its the weirdest feeling, and one I never thought I would have, or struggle so much in expressing. It seems an almost childish desire in a way; a need to be recognised and supported with sympathy when I need it, but not to be pandered to when I don’t… is that possible? I hope to find that balance.

 

Maybe I wont need another post later…I hope that those ramblings make some sense to some of you, I never feel like I write in an eloquent fashion compared to many bloggers out there, but my aim is more to get honest thoughts and feelings out onto this space, as opposed to well written ones with good sentence structure!

 

One month can change a lifetime.

 

H x

Scars, Siblings and Smiling


My scar is looking brilliant, considering it is less than a month old! (see my older post: https://livingmylifewithcrohns.wordpress.com/2014/01/12/the-greatest-healing-therapy-is-friendship-and-love/ for a picture a few days ago) Although, to be fair I have never had an operation before, or even a proper scar, so I actually have very little idea about how it should be healing / looking like 3 and a half weeks in – but regardless I am very proud of my little body soldiering on through and fixing itself…well, it does owe me, its not like it normally works properly!

ANYWAYYY I am back home and am loving catching up on some missed family time, and enjoying the feeling of getting healthier and stronger again. My little siblings (a brother aged 2 and a sister aged 6…also a younger brother aged 18 but he isn’t really involved in this story 😉 ) LOVE looking at my scar, they find it hilarious. Most days when I get back into the house my youngest brother goes “me see your tummy tunnel, tummy tunnel!!!” which also involves squirming around and trying to pull my top up, no matter who else is in the room..awks. He loves it, he thinks its so weird, as soon as I show him he always looks shocked and goes “it very big” and then poddles off! My sister takes it one step further, this was our conversation yesterday:

“I want to see too if he gets to” Me : “Okay, look, its the same as yesterday.”
“Hmm…Its quite scratchy like isn’t it”
Me: “What…?”
“Well, it looks like a big scratch, but not a very good one because its a teeny weeny bit wiggly if you look really close. And my scratches are never wiggly like that.”
Me: “Oh. I know, it looks pretty weird, but it looks so much better than it used to, I think in the future we will hardly be able to see it”
“REALLY?!?! Well I don’t know it at the start because you had a big plaster on and wouldn’t let me see. remember?! Even though I showed you my wobbly tooth straight away”
Me:”Sorry. The doctor said I had to!”
“I think your doctor might not be very good. He made your tummy worse – now it has a big hole in and a weird scratch!”
Me: “No, he was making it better I feel…..right everyone left the room. good”

They make me laugh, blatant honesty is all you can expect and I love the fact that she still sees my illness as worse now than before because of my “wonky scratch”, what an innocent way to view it all, I love it!
Aside from that my recovery is continuing slowly, I am hoping to return to university next weekend – fingers crossed! I am so sick of being the ill kid and missing out on all the fun and everything involved with being there! I have missed all my exams and coursework deadlines – so have been busily filling out lots of paperwork, forms “evidence sheets” and the like to submit to my university so that they can grant me special considerations and then allow me to retake / re submit later in the year. FINGERS CROSSED. Well, not fingers crossed, if they decline it I have failed the semester and will be kicking up one hell of a fuss, since this is what I was told to do! Anyway, that rant is for another day 😉

I have been busy this morning ringing around the hospital and insurance companies, in an attempt to square everything out, because my organisational skills went downhill fast with the operation, I just had too much else on my mind! BLEUGH. I am having such bad sleep at the moment, I don’t manage to fall asleep until something crazy like 3am most days, even though I am in bed from about 11.30; too much on my mind I think .I am making list after list on my phone of things to do, and then slowly trying to work through them the next day…what an exciting life I lead!

Anyway, just thought my scar anecdote might bring a smile to a few of your faces. Apologies for the rest of the ramble! Just remember, as long as your smiling, you will be okay! Whether you have your own wonky scratch as a physical reminder of your disease or not; find something about the situation that will make you smile when things get tough, its the best medicine!

H x

Now I know my ABC’s…


Now I know my ABC's...

So, along my lines of being more positive, this is the next happy post!

I have always LOVED taking pictures, and so today (having got very bored of sitting around doing nothing at home still in recovery from my operation) I decided to get on with doing something productive and a little more fun! I decided to start on my first photography project, and my brother joined in for some of the shots too. Then I uploaded them and edited a few version, one the original, one all black and white and one in coloured filters – the one I attached to this post. What do you all think?

I had had a falling out with my brother earlier – he had refused to drive me to the doctors to sign up for a repeat prescription when I still cant walk that far on my own; and it all descended badly. It was so frustrating, I hate the fact that I am not back to being independent. Then I ended up arguing with my mum about her having to get off work to come take me…the texting ended up something like this:

” I don’t want you to take me. forget it. I have done NOTHING wrong. It is not my fault that I need this medication. It is not my fault that I needed an operation and still cant drive or walk that far. It is not my fault my brother refuses to take me or help me when I need it. None of that is my fault, but its what I have and I cant help it. You have already helped me 50 million times over and I get that, but this is not. my. fault”

Yeah…so that happened. Maybe it wasn’t fair, but it was so frustrating – I hate the fact that Crohns put me in these situations, and puts others around me out because of it, but I just cant help it.

SO I decided to make a bad day into a good one, and take up the camera! And it worked, I had such a lovely time taking them and really am proud of them 🙂 And Editing them all took most of the afternoon, and it meant that I didn’t get so bored!

LOVE LOVE LOVE

It’s Dino Time


dino

I know, I know.. I already posted today, and I am probably boring your socks off…BUT STILL

This blog is meant to be my way to vent my thoughts and feelings about my experience with Crohns and how it affects my life; but more importantly my aim when I started was to prove that I DO still have a life, that I am getting on with it and that it doesn’t define everything about me. Or at least, I try not to let it!

Unfortunately this last month or so it kinda has, but theres nothing that I could have done about that. Sometimes you do need to accept a minor defeat I think, and I did. But I am on my way back up and thought a cheery post about something not related to the disease is just what was in order. I shall be trying to make sure I stay on track and post a few more of these, to give a bit more balanced view I guess!

So, this is a picture of an origami dinosaur me and my little sister and cousin made, they were hilarious! My cousin bought over some funny arts and crafts stuff to do, the first time she has visited since my op and it was so nice of her to come all the way down for the day. Now, I know doing origami doesn’t exactly prove I am living my life to the full, but it was just a picture that makes me smile and thought it might do the same for all of you guys.

RAWR

H x

“The greatest healing therapy is friendship and love”


scar

title quote from Hubert H Humphrey

This is my scar as of yesterday, and yes, finally I see progress! Maybe that is a little Melodramatic, but I can finally begin to accept that this scar is mine now, I claim it as my own and move on and get on with it. I don’t need to check it every hour, its still there, its still “ugly” but its fading and healing and one day I will have to point it out to people who will squint at my stomach and dismiss it as not much. I look forward to that day – ironically I guess I am going to miss it. It is pretty much the only physical reminder I have of my Crohns, and as such it is something I can show people to prove I was ill. If my stomach hurts, I can show my scar, if I am feeling too tired and drained from being ill, I can show them my scar; but in the future the scar is going to fade and I guess I am scared that with it too will fade peoples belief in my illness. On the other hand, I am hoping that the Crohns is going to be in remission for a while now (touch wood) because of the operation and the medicines I continue to take, but who knows…

This post started as something quite jolly – my scar is fading and it was a bit of good news to update you all with…but somehow it turned a little bit sour when I started writing. You know that feeling when your typing and more thoughts just flow into your head and change the direction of the sentence? That’s what just happened here, that little revelation struck me that actually (loathe as I am to admit it) I guess in a weird kind of way I am going to grow attached to my scar, my little battle wound as it were.

Moving on, the reason I picked that quote as the title to the post is because at the moment I am feeling positive and happy, I have a lot of stresses and pressures on me, and I am feeling a bit bogged down with it all – but I keep being reminded of what amazing friends and family I have all around me, and they buoy me up on my bad days. I am so grateful to every single one of them.

Hoping that you are all having a lovely weekend

H x

Am I In the Wizrd of Oz?


The road I am on now isnt quite as exciting as the yellow brick road that dorothy got to follow, but I feel as if I am on my own road to discovery along the way to getting better. Just like dorothy along the way I have met different people and challenges, and each have changed me in some way and helped me towards my end goal of good health!

 

I met with my surgeon yesterday for a post-operative catch up, and he was very pleased with my progress. He says that I can eat as normal, and I had a blood test to check all my levels now, especially since i started back on Azathriaprine a week or so ago.I now dont have to see him again, I just will meet back with my consultant at the end of January when I am aiming to return to university. He explained that the main long term potential impact of the surgery is that the area removed in the operation is the one responsible in the body for the absorption of B12, which can cause anemia and illness if you do not have enough in your body. I have already been told I was slightly anemic, but that due to larger issues I may as well ignore it as it has little effect on me, so this is something else to watch. Apparently our bodies have a reserve, so I will not see in blood tests for a few months if this will have an impact on me, and if so I can either take supplement tablets or have injections every few months to give my body enough to be healthy. The surgeon also explained to me, in great detail and very patiently, that at the moment I have no symptons and there is really very little that i can do to prevent crohns coming back, I have to just cross my fingers, touch wood, wish on a star, and everything else under the sun and wait…and hope. Apparently there is little diet-related control that will help, and he truly believes stress has little impact. He basically said go, live your life as much as you can and we will deal with it if and when it reoccurs. He was very honest, saying because of how young I am there is a good chance that it will re-occur in my lifetime.

 

It is weird, in some ways I am glad that there is very little I can do to prevent Crohns returning ( I am expecting some flare ups, but I hope it will never become so long term again). THe biggest thing is to not smoke, which is fine –  I never have done and never intend to. It is weird, on one hand I can go, live my life and “ignore it” so far as possible and just wait, maybe I will be lucky maybe I wont, I ont have to drastically change my lifestyle or not eat certain things..but on the other I wish in a way they said “if you never eat steak again you will have a much better chance of not having it strike” at least then i feel as though I have a bit more control. It is like, in my head, how my friend views taking the Pill – it is her reponsibility and her control, she knows she takes the tablet at the correct time every day she knows what to do if she misses one, she gets more everytime she runs low and understands the risks and can control her birth control that way – I know that sounds like a weird comparison to make, but I wish I had that element of control over myself and my life and my health, but I have to accept that I just dont, and I cant. Scary, huh?

On a more positive note I am feeling much more human and better, and am able to eat more and walk about more. My biggest issue is just being drained of any energy very quickly, but I am learning to accept that and embrace it nap and relax, soon enough I am determined to be back on top and better.

I am afraid this post has little direction, apologies. I think it is important to air your thoughts, and right now mine are twirling round in endless circles, especially regarding the lack of control I feel in my life, its not an easy thing to swallow. Aside from that I am marching determinedly down my personal yellow brick road, with my friends and family around me. Yes, some days I get sidetracked and sit on the virtual kerb for a cry and a bit of a tantrum at the unfairness of it all, but soon enough I will be back on track and closer to my goal. 

 

H x

New Years Resolutions?


New Years Resolutions?

I don’t often make any New Years Resolutions…they are the usual “go to the gym” “be healthy” “pass my exams”… and this year it wasn’t until I was reading around on wordpress about all the resolutions everyone else has made that I decided to make some myself…yes I am 3 days late but SHH…lets ignore that 😉

I spent a chilled out New Years Eve with my auntie and almost-uncle (her boyfriend of over 10 years), due to just getting out of hospital I wasn’t up for much but we just ate some dinner, played a board game and watched a film then some of the new years programs – nothing mind blowing but nice, safe, relaxed and easy. Just what I needed! At the time all I was thinking about was wishing that 2014 would bring me better health than 2013, and that the only way was upwards; but I think in retrospect a resolution has to be something that we can influence, something we can do to make a positive difference to our own lives, and my Crohns is actually something I have very little control over. It is all very well wishing and hoping that this year brings me some relief from the disease, and I will do so until I am blue in the face- but realistically there is a limited amount of control I have. So, I need to make some other resolutions that I can keep, and can motivate myself to do. So here they are:

– I aim to continue to be consistent and thorough in beating Crohns in whatever way I can, be it taking all the medicine regurlarly, making all the blood tests, and general organisational skills

– I aim to not let Crohns get me down any more. If I am having a bad day then fine, wallow, get it out my system; but I will not lose sight of all the positives that I have in my life, and I will focus on getting back into my routine and being happy. Crohns will not bring me down!

– I will try to keep this blog up and active, and aim to increase the numbers of followers, readers and commenters – the more the merrier, and not only do I feel like I can spread awareness, but it makes me more positive and gives me a focus.

– I will try to raise money for Crohns disease research, heaven knows we need more awareness, support and money placed into researching the causes and solutions.

– Pass my exams, and my coursework and do not get demotivated, keep working through it! Find a topic for my dissertation!

– maybe most importantly of all? appreciate the friends and family I have around me, and work to keep all those relations as they are, or improve them. Crohns doesn’t define me, it is simply one small part of me – and I do not want to let it take over the rest of me. It can stay in its little box whilst I get on with my life.

Im not sure if they are practical, or if they are what some people would consider “real” resolutions, but for me they are a lot, they are enough, they are good to aim for. This post has turned out a bit… I don’t know what the word is, but a bit..pompous? a bit too “I am going to aim perfection I can achieve anything if I believe” which I know as well as the next person just isn’t true. Sometimes though, on a good day, you need to aim high and far, in an attempt to keep your chin above the water, and give yourself some positive aims for the future, and that’s just what I have done 🙂

Hope you guys all had a lovely New Years, and are looking forward to a positive 2014!

H x