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

Trying to draw a line under it…


Okay, so there is no easy way to summarise my feelings from the break up, or how I am feeling now. So I am not sure there is much point trying. I am doing my best, going to therapy, looking after myself, trying to plan new things, and focussing on my family, friends and the other positives in my life. However, it is hard to ignore and still a battle I am fighting each and every day to try and not let it overcome me.

I was finding it too hard to blog, because the breakup was so consuming that I didn’t know how to write about anything else, but now I look back and don’t want that to be a reason that I stop writing, not when this blog has meant so much to me in the past. So, I am back, and going to do my best!

I have a hospital appointment tomorrow morning to practice doing another test-  some kind of swallow-the-camera-in-a-pill (not sure that is the technical name!). And before you do the test you have to do a practice with a placebo pill to make sure it agrees with your system, so that is what I am going to be doing. Then on Wednesday for a check up, then hopefully it will go okay and I can crack on with getting the ACTUAL test done, finally. I am also hoping to do some blood tests tomorrow, or Wednesday, to keep on top of everything. Sometimes being in remission means its to easy to forget how bad everything can be. I have been through one of the most stressful times of my life, and I am feeling beyond grateful that my crohns (thus far) hasn’t been impacted by that!

I am working full time, by working 2 part time jobs, and loving them. Although I need something a bit more permanent! And hopefully better paid 😉

Anyway, that’s a mini update for now, and I hope to get back on track with the positivity and focus that this blog used to contain for me.

Big hugs

H x

Why the insecurities and the inability to cope?


Hey all,

It has been forever since I have posted, and for that I am sorry. I have got a little caught up in, well, life. So I will break this update down into a few sections, to try and make it less mind-numbingly boring to read.

 

Part 1 – The Title

So, I am just struggling with life a little at the moment. I have completed my masters, and am therefore awkwardly floating about in the realms of unemployment, volunteering and bankruptcy (perhaps a tad of an exaggeration, but my savings have definitely taken a toll!). It is hard to be positive when nothing appears right, and although on some days I feel confident and excited, others, like today, involve sitting alone in bed, undressed and unmoving until 1 in the afternoon. And nobody knows. and nobody cares. and it impacts nobody. and I am achieveing nothing. And it is all too depressing. I feel as though I may have an aim and a goal, but I am treading water unable to achieve them – and meanwhile being wasteful and unsuccessful and a general nonsense. Which, by the way, is not fun.

Part 2 – The title, again.

So the other part of the title to this blog was about the insecurities. Needless to say I am a very insecure person, and I think perhaps I do not value my own self worth. I am kind, and clever, strong and faithful, and, I like to think, bring support and laughter to those around me. But, it just doesnt seem enough sometimes. My relationship with my boyfriend is being negatively impacted because of it, because of a mixture of things but all of them are too much together. It is the hardest thing in the world to know your mentality is causing issues, but being utterly unable to change it, because it is you. My paranoia and my worrying is as much a part of my personality as my eye colour – and yet I need it to change, but I can’t change it, and that is frustrating and scary and worrying all at once.

 

The Job hunt

As metioned above, I finally finished my masters (yay) but am yet to get a job (boo). Which is an awkward phase. Am desperate to work within the museum sector, I think it is my calling! Unfortunately my calling is very much on the “please hold” tone – there is pretty much no availablility, and when there is a job I apply for, I am inevitably turned away. Not fun. I have given myself until christmas to try and work really hard on applications, at volunteering, and at building my CV and doing some part time work for money – but so far it is proving more than a little depressing, especially when everyone else in my life appears to be so successful.

 

The Crohns

This perhaps shouldnt have come last, but it isnt the most exciting topic to blog about – especially when it is being stressful! Okay, perhaps I should’t say stressful, given the issues it has caused in the past, but managing the hospital appointments is just not easy! I have one near the start of Novemeber, but due to the hospital messing up the forms I have been unable to go and get check up blood-tests, which I want, since I am feeling uber fatigued even having done nothing all day, which is clearly not normal. I also have been feeling a few familiar crohns signs again, and want to be on top of it; so the inability to get it tested as regurlarly as I should due to the hospital having incorrect paperwork – is REALLY annoying.

 

Sorry for the random nature of this post, I will try to be more ontop of posting again, and be more regular!

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

Pre-colonoscopy misery


Hi,

Me again – once again in a bad mood, feeling down due to tomorrow’s ordeal. Have ANOTHER colonoscopy- maybe my 4th or 5th one? I am only 22-  most of my friends don’t even know what one is, let alone are a regular at it. And that, is just depressing.

Its a glorious day outside, and I have massive deadlines due tomorrow as well (such great timing) but instead of being out in London, in meetings, working and enjoying the weather with my friends – I am at home, in my PJs, in bed, with the worst headache, no food at all for the rest of the day and only a glass of water and a snoring cat to keep me company. I am miserable. I wish this wasn’t what I had to go through, I am terrified about what the results will be – is it getting better? has it got worse? do I need new medicines? Which one? Do I have to keep self-injecting the humira? please, no. I don’t even know what to expect – I have had feelings recently that it may be playing up again, but what do I know, eh.

 

I hate this prep, I am not sure what I can and cant drink, I am not sure what counts as solid food, I am not sure if I have the preparation that literally makes me gag so hard I want to vomit whilst I drink it or the other one which I can cope with – that will be a fun surprise for me at 2pm. I am sat here, failing to do my work, all alone and feeling like absolute misery.

Recently I thought I was more ontop of this illness, but no. Apparently not. Crohns has a way of popping up and reminding you that you will never be fully incontrol, and its stupid to think you would be. I don’t need this crap right now.

So, 1-0 to Crohns for today.

 

Hope your having better days than me so far

 

H x

I’m too tired to think of a proper title 


I do normally try with my titles – to think of something funny or interesting or relevant, but this morning having already been up for an hour (it’s now 7.45) and already at the station waiting to fight for a seat on the train; and I just can’t be bothered. I am so tired. And so fatigued. There is a difference between being tired and feeling like this, and I just wish I knew a way to make it go away
Anyway, this is an update about hospital on Friday, sorry for the slow blog been busy LIVING MY LIFE and having the most amazing weekend with my favourite person, who I still can’t believe is crazy enough to want to date me! so hospital was fine, overall. So no big change or not drama, but it was still important to me. we had to leave really early to get to Southampton, and it is such a pain going back, but I really like and trust my specialist so it is worth it! 
The appt was standard, get weighed (depressingly fat right now) and have a chat about how I am feeling and hoe it is going etc. I was proud of how I spoke and handled this, because I wanted to be clear that I was both feeling better and not so good; and that j was both happy and unhappy ; and that isn’t always an easy thing, let alone when you are trying to say all this without sounding accusatory! So I said I am feeling a million times better than I was when I was ill, that I am so much more able in my everyday life and that I am getting used to the humira injections. But that I feel I have been thrown in at the deep end and left, that I am getting headaches and the fatigue is whooping my ass, that I am scared abou the side effects of hunira and the lack of monitoring. That I basically want to know if it’s working and then I can gauge if it’s worth continuing. It scares me to have to be only 21 (MY BIRTHDAY IN 5 DAYS) and be pumping a drug into my body which has unknown long term side effects, and not knowing what it could do to me, or when it would happen. 
So I think he didn’t get me to start with, but he did get it at the end. He said he had found a department in London he would be happy to transfer me to, which is so amazing; but it just wasn’t something I wanted right now. I mean I do want it but I don’t want to be moved and fall through the cracks and never get the answer to those questions! So I asked to stay, he took a whole set of bloods, testing everything! And I also gave an extra vial to a DNA analysis test which can be linked to crohns and seeing how it works and if there is any link (FYI I think that’s so important, keep trying to help them understand because one day it may help you, but also- don’t you wish someone earlier had done th same to help you? So you should help others and the general understanding of this misunderstood disease) 

He also has scheduled a colonoscopy for a month, so that we can see how actual crohns is doing.  It makes me sad I am not that surprised and that I will be 22 and having yet another one when most of my friends don’t even know what it is. #lifeofacrohnie
So much going on in the life of just one little person

H xx

decisions are not my friend…


Hi again,

I know I only posted a pretty miserable post yesterday, and I am sure the last thing you want to hear about is all the same crap again…but here it is. sorry. (promise to try to be a little more upbeat next time!)

So a review of my current situation:

I am at home, in my PJS having been off sick from work for the second day in a row. After having only been in for 8 days. By Friday I will have been out of offie for 50% of the time they have employed me. So I am not sure how much longer that will go on….

I am stressed about work. about them understanding that I am not faking this illness, about them not firing me. But then I don’t LOVE the job. I took it in haste to earn money, but now I think it may be a mistake, that maybe I should have held out longer for a job I actually really enjoyed. Should I quit? should I do a masters? Or a PGCE? I know where I want to be, but at the moment I cant quite get there. I want to move to London because my boyfriend is heading there. But should I live outside of London with a friend (but it will be expensive and still a commute, and in a small and quiet town) or should I just randomly flat share with strangers to get closer to London…but that means I have to keep the job because I need a definite way of paying rent.

I have tried to volunteer in so many museums, but to no avail. so how can I move out if I cant even secure a volunteering space?

I want my blood test results back. I am worried about being ill. I am angry that my hospital hasn’t monitored me, so I cannot be sure that it isn’t something more serious.

I am stressed about what job decision to make.

I am scared of getting left behind in my friends lives

I am scared of being ill again, and im paranoid that just a sore throat has knocked me off work for two days with emergency blood tests and panics. How does anyone live a ormal life like this ?

So many decisions. so many big questions, and all need answers relatively quick. and I have none of them. Someone, help me?

#disheartened

H x

:'(


got a call from the hospital to say my TB results were inconclusive, most likely ‘because of the steroids I’m on’ although I haven’t been on any for 18 months or so….so they actually have no idea why it didn’t work. So. Great. 

Back to the hospital on Monday for more blood tests. And in all day Tuesday to wait for Humira and then again on Thursday to learn how to inject myself. Great. Don’t forget the exam on Fridat and then Wednesday, all amongst revision, filling out special applications form and trying to cope with everydayife.

I feel crap. Life is unfair. Lying in bed crying and ready to sleep. I’m sad. I want my body to work. Please. Just for a little bit.

Eugh. 

I know self pity isn’t a pretty look, but it’s stuck on me right now. Sorry. 

H x

Hello Humira…and a whole lot of fear :S


Hi all,

So I got my blood results back and they were basically normal – yay. But then on Monday I was feeling really bad, my stomach was sore and sensitive and I felt so sick; not a good day at all. Unfortunately struck at the worse time, what with dissertation panic and all my other university work. I had to retire to bed for the evening and call upon my lovely boyfriend to come down for the night for get-better-soon-snuggles and a quiet night of TV in bed. Luckily it made me feel better by Tuesday, and I just felt a little sorry for myself and sore the rest of the week, and if im honest a little shaken – it was the first time I have actually felt, really, “crohns ill” since my operation, the first time I can definitively say YES. that was crohns. And that my friends, is more than a little scary.

I went ahead with my appointment with my specialist on Friday (god, was it only yesterday?!) but been in denial about blogging the results – infact I refused to fill my mum in on any more than the basic details because I cannot face going over them repeatedly – passed her questions on to dad for answering! In essence, Crohns is most definitely back and unfortunately I am starting to feel its effects, and this means It is probably only going to get worse. Luckily this time round it has been detected and understood  a lot quicker (through the colonoscopy, seeing a specialist and my own understanding and experiences) which means we have time to act quicker before scar tissue forms as it did before. My doctor is AMAZING or at least I think so – and he wants me to not go back to having “duvet days” but to carry on living a daily life which is normal, and as he put it in- not just look at the cost on my body of having this illness, but the cost on my life. Those experiences you miss when you are ill or cannot enjoy – and he wants to stop this happening again, which I agree is a fantastic aim; I am just in denial about needing a step up with my medication.

I currently take 150mg of Aathiaprine a day, and am now commencing the pre-test to begin Humira (spelling?!) which is something I have wanted to avoid. Both Humira and Infliximab with their injections / infusions seems a lot more serious, more scary, more like I am ill. and I have TO INJECT MYSELF. I hate needles and injections enough to begin with – what if I cant do it?! what if it hurts too much? what if I do it wrong? ….what if it doesn’t work and this is just a crash and burn back to being so ill like I was last year. What if nothing I do changes that? I am terrified. and scared. and I know one injection every two weeks is worth it, if it can stop crohns then that is amazing- but what if it cant? what if its back forever and maliciously?

I know that seems over the top, and I needed to get that out but I also need to focus and BE STRONG. be strong! I have so many amazing people in my life that can help me, and for that I am grateful!  For now I need to focs on the blood test, and chest scans etc and get it organised – and RESEARCH RESEARCH RESEARCH. I think it is so important to understand what you are pputting into your body! So…here begins my journey of Humira. I will keep you updated as I go ; heaven knows I wish I could follow someones story who has been through this already – so maybe I can provide that for other people . Fingers crossed

From one very very scared person

H xx

Pot Luck


This illness of mine, its a fickle beast.

Sometimes it strikes hard and fast, a crippling blow to the body and soul; and in others it just kind of drifts around the peripherals of your life, always there but not always being felt. I am one of the lucky ones right now, I am in remission and loving it. But I see and hear of so many people who have it so much worse, whose bodies are still being ravaged by the disease and who are unable to continue to live their daily lives. I guess I was lucky that my Crohns got so bad so quickly, it was within a year of diagnosis that I had to have an operation. From going to just having really loud tummy rumbles to being unable to walk and being half carried into an ambulance due to pain – that’s drastic. My life changed and switched upside down, nothing was the same – but it did happen so fast that drastic action was taken and quickly, my operation that changed everything happened so fast. I am grateful that it got so bad so fast, that it was sorted so quickly. And quite a bit f that may have been to do with the fact I was on private healthcare due to my dads work – but regardless I would have been put in for an operation after my A and E visit.

I guess this post is a rambler, sorry – it just struck me again the other da how much stuff has changed for me in this past year, and how a year ago I would never have seen myself here, ever. Aside from that, I guess I am one of the lucky ones. Its important to remember that sometimes I think

H xx