Happy 4 years, little scar


OKAY, I KNOW I ALREADY POSTED TODAY.

But, I just realised, it was 4 years ago today, exactly, that I had my operation for Crohns!

How life has changed…goodness! And also just over 4 years that I have been blogging here, crazy to be able to look back over all my posts and see just how my life has progressed.  I went back and read my posts from every December over the past 4 years, just to see how different my life has become, and it is CRAZY.

So, in memory of my scar. And THAT day. Here are the things that stick in my mind from that time:

I remember going there, and waiting in my gown and stocking thinsg, and mum taking a photo and I looked about 12 – the combination of lack of makeup, being ill, and being terrified. The Anaesthetist was delayed, so we ended up waiting so long to go in, that my adrenaline kept fading away, then someone would walk past and it would go again. I remember I had just got my ears pierced and was so worried about taking the earrings out for the surgery (had to) and that they would heal over. I said to my mum when she saw me wheeled back she HAD to a) check if I had a stoma, and b) put my earrings back in! I remember walking down the corridor in my slippers and dressing gown when the time finally came. I remember ling on the bed and trying to be calm, but being so scared, and the whole thing feeling surreal. The nurse was talking to me, trying to be nice and calming and asking about my degree and my life, then feeling my limbs going heavy as the anaesthethic kicked in, and being outraged that they hadn’t asked me to count backwards from 10! And then, I remember waking up in this bed, with this lovely nurse with me – I just opened my eyes and was so tired and groggy and a bit tearful. He smiled, and said hi, and held my hand, and gave me the morphine button, and stroked my hair away that was stuck in my face, and I just slept, slept slept. I remember getting wheeled into a lift…and then seeing my mum. And sleeping. And hurting. And asking her to check if I had a stoma. And seeing my swollen, bruised, bloody and bandaged stomach (sounds dramatic) and just sleeping. And then the next few days are a bit of a blur!

 

I remember needing more morphine per dose. I remember being sick in the night. I remember that time lost its meaning  – there was no real day and night, I just slept and watched TV whenever, there was always nurses about and every few hours they did checks, so I never got fully to feel like there was a private night time. the only difference was when my family visited, in the day time. I remember having weird morphine induced phone calls (although they seemed normal at the time). I remember crying and calling my parents asking them to come and save me, and telling them what awful parents they were for abandoning me, those 2am times in pain and all alone, they werehard. But that Christmas day, when my mum decorated my room, and at 2am a different nice, bald nurse man sat with me and chatted. And he had an accent, although I cant remember what. And he was so nice, and talked to me for ages, and made me feel less lonely. Then all my family rotated through the hospital, and we played a game that made me laugh but that hurt my side so then I laughed more at the fact I couldn’t laugh! And I ate a chocolate pot for my Christmas lunch which was the biggest thing I had eaten in days. And I was able to show them how I could walk across the room. I remember my mum wheeling me about in a wheelchair, I remember being unable to walk to the chair let alone the window, I remember, so much. It is is so weird.

I am so proud of me, I was so strong. Not as much as others, I know, but , I was. For me. And I am proud of my family, and so amazed at the pain I was in, and what I overcame. And what I went through before that, to get to that point, and to get past that point. And obviously so much in my life has changed since then, but I am glad to report,  touch wood, that crohns is still one of them. I am, so far, still in remission (after another flare up post op) and I hope to goodness I never get put back into that situation.
I am sorry for the long ramble, entirely unexpected. but knowing what I was doing 4 years ago – lying in that bed, asleep, hurting, confused, with so much still to come…well, it deserves a bit of reflection.

 

H x

Happy Christmas!


I can’t believe how fast time has gone recently – and that it is nearly Christmas! HOW?!

I have been really busy recently, trying to make the most of my time at work, and maximising any potential opportunities I have left. At the end of January my maternity cover job ends (the one I love!) which has been two days per week for the last year. Trying not to get too emotional about it (and definitely not succeeding!) so struggling with the sadness that comes with leaving a great job and an even better team. This means that at the end of January I will only be working one day per week in a Volunteer Coordinator role (very cool) and then having a 0 hours contract in my other job, which is…difficult.

My other job has actually given me a lot of hours ( all weekend based, sigh) for January, so at least my pay check shouldn’t suffer TOO much…but I am definitely feeling the stress/ misery / heart break at having to start the job hunt again. ITS TOO SOON I feel like screaming! But, alas, it has to be. The job I am doing that is on 0 hours is frustrating – I like the role and am good at it, I just got given a kinda of promotion ( in title only) to be coordinating the volunteer team there too – meaning more responsibility, recruitment, creating and running training programs, trips, scheduling new training, bringing in new opportunities for current volunteers etc – so much opportunity and flexibility to bring in new initiatives and really revitalise and improve the existing program, and I am SO excited about it. But, they aren’t giving me enough hours to do the work. Leaving me with the dilemma of not doing enough or not doing it well enough, or having to do work unpaid from home. Neither of which is really an option. Its one of those awkward growing-pains type stages- if you get what I mean? I just feel a little in limbo. Almost settled, but also definitely not. Almost stable, but nowhere near. Almost ready to move out and be a grown up, but with no stability I am also not. Its hard. Hard to keep plodding on sometimes when you think you are going forward but then end up just as far back as before.

 

Something I am really struggling with at the moment is to not compare myself to others – either my peers, or my work colleagues, or just some randomer on the train. I feel like I am not doing well enough at work, or I should have a better job, or I should get better paid, or have a boyfriend, or be going on more dates, or have moved out, or be investing in a house, or be going out drinking more, or be hitting the gym and losing weight, or have better eyebrows or WHATEVER the situation is, I just am feeling a lot like I am not good enough. I have some incredible friends and family, and am really trying hard to absorb the mantra, and remind myself, that we aren’t all living in one path -there may be a beginning and an end for everyone, but (cliché as it sounds) the journey between the two really is a rollercoaster, with a million pit stops along the way, which are different for every person. I can even have the exact same goals as the person sat next to me, but I can reach them in my own time, following my own journey along the way. And even typing this makes me want to vomit in my mouth, it so cliché and over-motivational, but it is also true. I can write all this, and know it to be true, but that doesn’t mean I know how to implement that in my daily life. but, I am trying. And I will keep trying.

I want to get to the stage where I am just, happy with myself. With how I look, and how I act, how I am working, how I feel about myself, all of it. And I am sure that I will get there, I hope I will, but I sure as hell am not there yet.

I hope you all have a lovely Christmas and new year, if I don’t get around to posting between now and then (possible)

H x

Next interview down. Confusion levels up. Day 5, 2017


Me again.

Okay, so I didn’t manage to write a post yesterday – but that was just because everything went a bit mad with the job things, and I had to do interview prep and basically am just making excuses for failing at day 4 of my “post-a-day”. But, I am back online and at it again – so if it is just one day here or there, I will cut myself some slack!

Today I had an interview with a recruitment company, which is something I am considering going to work in, although I have no experience in it before – the money and career progression, and ability to work hard and earn more really appeals to me, that bit more control over my work. Plus, I always work hard and try to over-achieve, so I may as well get paid extra for it! I was really nervous but the interviewer was lovely, she really put me at ease and I think it went really well; and hopefully my answers were good. I will be interested to see if she thought the same and I get invited back again! However, the hours (12 hours days!) is something that really made me pause for that. Do I really want that? Is the money worth it? Do I care enough? And also…could my body take it? Because I don’t think so. Often a half day is enough to wipe me out, I am genuinely not sure that my fatigued, crohns- ridden little body could cope. So, a consideration. And potentially not the job for me, but good practice.

Currently I am in the midst of trying to get hold of one of the recruiters helping me, who wants to fire me off to more interviews tomorrow, but I am pushing back to try and just set them up for next week – 10am tomorrow is not enough time to prepare, not feel focussed and ready. However my recruiter, who I am sure is awesome at his job, is very pushy and doesn’t like taking no for an answer!

 

I am still stuck in the midst of a conundrum (great word, well used me) of what to do. I don’t want to feel like a failure, like I gave up to early, like I didn’t try hard enough for museums. But. I just want to move on, to succeed in something, to move out, to earn money, to feel like I accomplishing something genuine and real and tangible. And to move to London. To live in one place full time. And join a gym, and a dance club and so much more. To get back so many aspects of my life that I just don’t feel that I have right now in this perpetually “paused” state that my life seems to have undertaken. It is a big decision, and a scary one, and maybe neither answer will feel right, so I just have to do my best. Like always.

 

Another day, another ramble.

Until next time,

H x

Too much confusion, too few plans. Day 2, 2017


Afternoon All,

So, here we are determined with my second consecutive post (been a while since this has happened!) and not really sure what to say. thus far, I have had a lazy morning, and a brilliant lunch and afternoon talking and laughing with two of my besties, one of whom went home to Belgium today, and the other who will be emigrating in just a few weeks. So, squeezing in a many laughs as possible today.

But, that isn’t of much interest. So, I thought I would revert to using this blog as how I originally intended it – to thrash out my fears and stresses, and hope that somehow that helps me towards a conclusion, a decision, a bit of peace of mind. Buckle up, here we go.

In essence, there is so much insecurity and change in my life right now, and I am not very good at coping with it all . Here is a cheeky list (if you don’t like lists, what is wrong with you?!) of the things buzzing around in my head now:

  • JOB. or Lack of it. EUGH. I know what I want to do, but it just isn’t happening, and that is bloody hard. Maybe any job is better than none. It is easy for everyone to say keep going for that one job, but like 3 months in and nothing except a huge dent in my savings, confidence and ability to start my life.
  • HOUSE. Currently living at home with my parents, which is kind and I love being home, but I am ready to move on and start my life, of my own. I have the option to move in with my boyfriend, which I think I would live, finally having a place of my own! But I don’t think he is ready, yet instead of deciding he is dragging the conversation and decision out, which is really stressing me out. I just want to know my options!
  • FRIENDS. Where are they all going?! Everyone is growing up, moving on and moving away, and it is so hard to keep in contact with all of them, I wish I could just keep everyone I love by my side all the time!
  • CROHNS. Well, lets be honest, I couldn’t write a blog post without a mention. I have an appointment at the end of January to discuss medication options and future plans. I don’t think anything will change, but its still nerve wracking to consider.

Okay, before this blog posts becomes an essay I am going to stop. I know it may seem that I am starting this year off on a negative, and maybe I am a little – but I guess that also means that I have the potential to overcome all these issues in 2017, and have a fantastic year.

 

Be happy and positive

H x

Masters Mayhem


So, I am officially useless at blogging. I used to be really good at keeping you up-to-date, but now my crohns is in remission (touch wood!) it seems there is a lot less worth writing about. Sorry!

So, my 23rd birthday is in 10 days (gulp, I feel so old writing that) – and I am not exactly where I thought I would be by now. I feel way too old to still be at university, to be living at home, to not have a job…but still too young to spend all day every day in an office churning out some inevitably boring nonsense which I couldn’t care less about. So my current dilemma is balancing money, friends, family, work, boyfriend, masters dissertation and the job hunt – all to try and figure out where I want to be, and how I want to get there. Its a tricky one indeed.

My masters is due 6 weeks today, which makes me feel more than a little queasy, and i have currently lost 100% of my motivation and ability to work. I spend my days procrastinating and then feeling horribly guilty about my lack of work – not a productive or healthy way to be spending my time. I am hoping to just push through, crack on and force myself to work; because getting a good grade in this dissertation is hugely important to my overall masters, and it seems wasteful to just be giving up at the end.

On the job front. hmm. So I still want to work within museums and heritage, but it seems so bloody difficult. If I keep trying, theres a chance I will get lucky, find a break, a way in; but realistically it is looking less and less plausible. Only the odd volunteer role comes my way, which isnt going to be enough to pay my bills and let me live the life I want. But then, I am too young (I think) to just be doing a job I hate, for the sake of money. So; the dilemma. How long to keep waiting, to keep hoping, before just going for something else? And before everyone rushes in with “dont give up on your dreams, it will be worth it in the end blah b lah” – try living on pretty much no money, with all your friends moving out and upwards, and being stuck in the same cycle you were in aged 15. Theres a limit to how long you can wait, trust me.

 

The crohns front, my old friend, seems to be happy resting its ugly head for now, thank god. I am struggling a bit with being overly tired at the moment, but I guess the general stress factor can be thanked for that, although I do have a tendency to blame everything bad on crohns – its caused enough trouble :p

Anyway, apologies for the long ramble full of nothing-ness, will try to keep you all more up to date.

H

x

Guess who is baaaack?!


I am SO sorry for being so absentee recently, the longest I havent blogged in a long while!

The reason for this? So. much. work.

I have just been insanely busy – and no better excuse than that. I got the results of my colonoscopy, all good there (yay) and have since been back to the hospital for a general check up and discussion. I found out then that I was able to stop my humira (hells yesssss) because there was no sign of active crohns in me at the time. I have since done more bloods, had a few days of feeling ill but a lot of days of being happy – and been through a HUGE amount of university stress – nobody said a masters would be this hard 😉

So, adios…Humira. I have hated every single injection we have had together, and each time got myself into a panic and distress and generally tears followed. However, you did your job. In just a year it got rid of the signs of active crohns, and , admittedly made me feel so much better. So, thank you – you have been a worthy foe! 😉

 

Today I went through to get my administrative things sorted to start a volunteering job at one of the big heritage locations in London – exciting! I hope to start there soon – meet new people, get new skills, and build up my CV. I also have a job interview on Wednesday, but for something completely different! We will see how that goes! I think I just need to get myself out there, keep pushing and enjoying life whilst I can.

Apart from that, my boyfriend is fine, as are all my family. I am slowly coming to terms with the secondary divorce / “seperation”, although there are oh so MANY things I hate about it, but I guess that is life. My boyfriend has moved up to London, and settled in well – and is honestly one of the biggest blessings in my life. I pray hard that our future stays as bright together 🙂

 

So, nothing much of interest I am afraid, apart from an apology about the delay in posting, and a promisee to be me more consistent, and interesting, in the future!

H x

3 ways I have succeeded despite Crohns…


  1. I am doing my masters.

This is something I didn’t think would be possible through the mid-point of my second year at Undergraduate. I couldn’t walk, I couldn’t eat, I couldn’t function on my own and totally relied on my friends to support me.  I was a walking, talking crohns-monster, and I am so thankful that through a combination of medication, operations, and love and support from my family and friends, that I have been able to emerge out the other side all the stronger for it. I am working hard, yes I am only in uni 3 days a week, but more because I can’t afford the train tickets than anything else! Yes, I am napping most days when I can. Yes, I am PILING on the weight because I am snacking more than ever just to get energy. Yes, I cry and feel defeated when it all gets too much, BUT it isn’t stopping me. I cant wait to hand in my dissertation, to crack on with the job hunt, and to walk down the dissertation aisle for the second time, head held high with my family around me, just to prove that I could. Coz Crohns ain’t stopping me.

 

2. I have a long-term boyfriend, and am managing semi-successfully

I know that doesn’t seem like it has anything to do with crohns for some of you, but that, probably, is because you don’t quite understand how it affects every single aspect of my life.  It affects my self esteem a lot, I think more than I realised. I don’t think I am good enough for him, I think he can do better, I get scared he will be bored of my medicine, and fatigue and general bad-days. I get worried he will get sick of my moaning. I fear he will out-grow me, and move onto someone less broken. But, so far, he hasn’t. And I pray to every god, or shooting star or lucky coin that he won’t, because as of right now he keeps me motivated and happy, and I couldn’t imagine my life without him. Thank you for being my best friend, my rock and my saviour 🙂

 

3. I am living a normal, ish, life

I have had quite a lot of stress in my life recently – my dad and stepmum split up, my boyfriend is moving out of his home into a new one, and I have realised my career prospects sseem pretty much 0. And yes, I have cried, and panicked, and hidden under the duvet to escape reality. But I made it out, I pulled the covers back and I am going on. I see my friends, I see my boyfriend, I see my family, I do my work, I plan events, I do everything I want to do (almost!). There are many things holding me back right now – job availability, money, etc, but my illness isn’t one of them. HELLS NO. On a trip with uni this weekend I told 2 people on my course about crohns – the first ones at this uni to know; and that had had no idea! And THAT is super exciting!

 

 

Maybe these things don’t sound like much, and maybe they aren’t. I hope this post wasn’t too self-indulgent. Maybe it is a way to boost my spirits before my impending colonscopy – number 4 at aged just 22, blooooody fantastic. Either way, everyone deserves a little self-congratulation once in a while. So, make sure you give yourself a pat on the back for all the good, and let the bad slide every now and again, cut yourself a break.

 

Be happy, be positive and keep fighting onwards,

H x

😶


No title, no words, just a face! 

I want to give you guys an update after my relatively dramatic last post- but didn’t know what to say, or how to say it. So, Imma bullet point everything going on, rather than trying (and failing) to write a coherent post! 

-I’m so freaking tired its unreal. How can I do so little, and be tired so often? 

-I’m excited but nervous to see my new consultant next Wednesday – should be interesting! I forget how nerve racking it can be to see the new guy- especially because I think crohns is grumbling again. I need the loo more, I get tired more, I have tummy aches more – no good signs! 

-I am doing pretty well at uni so far, which is nice 🙂 I have been getting good grades though hit a bit of a block in terms of knowing what to do for my next essays and dissertation which is scary! I have spoken to my friend about moving out with her in around August, which should be fun – although it adds stress and pressure with finances to get a good enough job to support that while also getting my dissertation done! 

-having a bit of a confusing time with my mum- who’s taken the car back in protest of “bad behaviour” and arguing (as ridiculous as that sounds) but has had it for months, for no good reason. It’s causing tension and anger – which is ironic because apart fro that we are getting on better than ever! I don’t understand how she can be so nice and kind for some things ,but so cruel for others. For example, as you may know from my last post – dad and my step mum are seperating and she wouldn’t even let us use he car to help them move furniture, or to drive to go visit my own siblings. Which I just don’t understands, and then she’s so supportive in other Ways?!

-my injections never got delivered! Just to add to the fun I’m now behind on humira too. Yay. 

-my boyfriend is incredible. I love him so much, and that’s so cliche and embarassing but it’s true. He supports me and loves me through the madness that is my life, whilst somehow inspiring me to be a better and kinder person at the same time – how can one person be so incredible?! Although him being out and so successful and working and moving out does just highlight how crap I am doing at life at the moment – so that’s tricky. I’m ill, hormonal, insecure and a little crazy; and all of that makes it tricky. We keep arguing too, due to over stubbornness – but I still wouldn’t trade him for anything. He’s is my absolute rock, and I have to say all this mushy crap here because there’s no where else I can say it without annoying people 😉 at least here you guys can escape! 

-and finally, the seperation. Tonight is the first night the kids and my step mum will be in their new house, although dad wanted to be alone so I am at mum house anyway, but it still feels weird – especially with so mc stuff missing around dads house. I’m so sad it’s happening, I want my family to stay together not fall apart further! We went to center parcs this weekend with dad to give my step mum time to move out, and we had a really sweet weekend despite the emotional side of it all. It did unfortunately combine with period weekend- resulting I me crying over a cupcake! But that’s another story 😉 
I’m feeling a little dented and battered in, but I’m soldiering on 🙂 

Keep your head highs up 

Hx

Going through my second divorce in 15 years…aged 22


And no, they weren’t my marriages. They were my mum and dads, and just now – as announced less than 48 hours ago, my dad and step mums. Well, this is for now just a “separation”, moving apart, with my half-siblings going to live in the next town along with their mum (my stepmum), but it is unlikely to end in a reconciliation.

This blog is everything person to me, I don’t hold back. But this isn’t just about me, it affects some of the people I love most in this world, and therefore it isn’t my place to be giving information online, and so I won’t. But I can’t lie and write posts without mentioning it.

It is affecting me, stress makes crohns worse and I foresee that happening.

It is making me an emotional crybaby, and I cant ignore that.

It is going to change the way I live my life for the next few months, and there is no getting around that.

And it could change the rest of my future, and my relationship with my siblings, and I am terrified of that.

 

 

Dad and my stepmum told my brother and I the other day, but we have had to keep it a secret until now when they are about to tell my younger half-siblings. And I am terrified. I feel physically sick, I have sweaty palms and I am shaking – and I have had to come hide in my room because I cant face seeing their innocent happy faces when I know how much their world is about to change. My brother and I said we would stay when they get told, to support them and show them we love them; I cant bear that this little family is going to change, that my brother and I have to go through this again, that my little siblings are going to have to endure the shit that comes with not having your parents together again, and it breaks my hard for my dad (and stepmum too) that this has happened. I love them all. I want them together under one roof, I cant deal with splitting my life and time between so many people in so many places and still feeling satisfied and as if I have a life of my own. I cant cope with the thought of coming to this house and those little smiley faces not being there to greet me. I cant cope with the thought that my youngest brother probably wont remember all these happy years together, and wont remember growing up like this; neither me or my brother remember our parents together.

And yet I still love them, I have had a brilliant childhood and I love both my parents and they could not have done a better job given the circumstances – and I have every faith that this time will be the same. But life seems unfair, and hard. But I am determined to make it as easy and fun and exciting for my siblings as I can. They need to know all the good things that can come out of it too. That their life is changing, not ending. I remember hearing this conversation the first time with my parents, and I must have been about 5. And yet it stuck with me, and I know that my sister at least will understand the implications. I just hope I am strong enough and brave enough to hold her hand and help her through the next few months, years, as well as keeping myself together

Life is tough, but family is important, even if it isn’t structured in a traditional way. As long as you have people that love you, that’s what counts. And I am going to try and remember that in the next few months of change.

H x

A dark day indeed..


So I hope you haven’t clicked on here today for a cheery read or a smile, because there is none of that around here for me today.

I felt really ill yesterday – I have had a sore throat for about 2 weeks now, but it just hasn’t been getting better. And I have this cut by my ear (have I mentioned that? Getting deja-vu writing about it so maybe!) which just wont heal, infact it is getting worse. I have put all this down to my shitty immune system, but yesterday just took the biscuit. I was so tired, and I had such a headache-  I felt like my head was full of pain, I felt dizzy and couldn’t concentrate, and everything just felt heavy and painful, and to add to that bundle of fun the bottom of my back was really sore, almost like period pain I guess but in the wrong place? Anyway, went to bed early and almost definitely had a temperature, had a combination of the hot sweats and freezing shivering, which combined with my uncomfortable back meant I hardly slept at all, and spent the night feeling isolated, ill and more than a little sad.

Anyway, woke up this morning and felt no better- and since everyone at my dads was out, I went over to mums for some company (and sympathy!). I slept on and off most of the morning, then managed to eat a sandwich and then just slept again before trying to crack on with my work – the pressures of getting these essays done are really hitting me now 😦

I get back to dads and my younger siblings break down into the BIGGEST meltdown over minecraft (of all things) whilst my dad was on a work call next door, so  I had to deal with that – trust me, no fun. Then this proceeded into having an argument with my dad, who came out the kitchen having said “your stepmum said you had to go to mums today because you were too ill to unload the dishwasher for her, guess it must be suuuuuper serious. so what was even wrong this time”

Needless to say maybe I didn’t handle it as well as I should have, bursting into tears and refusing to talk to him. I constantly feel like I have to defend the fact that I am ill, to prove to people I am not just faking it to get out of chores, or work, or helping someone – do you really think I fucking like being this broken aged 22? DO you think I wouldn’t prefer to unload the dishwasher 100 times over than not be able to recover from a cold in a few days and instead be stuck inside this shitty body that doesn’t do what its supposed to? So, an all out argument ensued. And yes, I could have handled it better. And yes, he said sorry. But that doesn’t make it different or better. Nor does the fact that he said (and he isn’t the first one): “Just go to the doctors with these new symptoms” and “your ill more than most people, so sorry that I didn’t take it that seriously, its just, your always ill so its not such a big thing when you say your feeling bad”

Excuse me? So because I have a crohnic illness and am on a lifetime of drugs which play havoc with the natural order of my body it doesn’t matter when I get ill? REALLY?! because in my book it should be the other way around. If I got ill twice a week, it should still matter just as much. And I KNOW I am being over dramatic, semi-taking it the wrong way and also being unfair to my dad, but I am fed up of people doubting me, and changing what I feel and say to suit them. I am fed upof going to the doctors and everyone being like “huh your not that ill” or the doctor going “theres nothing I can do, your immune system will sort this” YEAH RIGHT.

I just feel like I don’t fit in anywhere, I don’t belong anywhere. My boyfriend doesn’t want to live with me, my parents are sick of me and to be honest I just feel like I am in the way wherever I go. I am bored of being sick and of not having a way to get better, I am bored of constantly being ill or worried about if its just a cold or something more. I am bored of having 14 days at the most to count down between injection times, and dreading that moment more than anyone else will ever know. I am bored of trying so hard to get into a career I want, but knowing its not going to happen so having to give up. I am just bored, and fed up. I need a helping hand I think, but I fear I have none left to use.

H x