I am beyond sick of people telling me I am young and can stay up late and how it’s uncool of me to be going to bed at 10. I’m sorry do you think I don’t know that? Do you think I’m not aware that everyone else my age can handle this better than I can? Do you think It isn’t obvious to me that this is just another thing crohns is robbing me of?
Thanks for the reminder.
im done with all the nice talks and the motivational posts, they are not okay for today.
Just finished university forever yesterday- happy days! Went out last night and woke up this morning with crohns pains live and kicking ; and for anybody reading who thinks I’m overreacting with a hangover you have quite clearly never experienced the discomfort and quite specific painful feeling to which I am now referring. I don’t know if this is linked to starting Humira, or if it is because of the stress of exams or what- all I do know is it is shit and so freaking unfair.
My best friends birthday is tomorrow and our mutual French friend is over visiting so I made a massive effort to come home early to see her but felt so nauseous, shaky and fatigued that I didn’t even make the whole walk into town and have spent the afternoon alone and crying, in the bathroom and snuggled up and generally feeling more than a little sorry for myself. How am I meant to do the next two birthday nights? I got tired just walking upstairs to get a pillow.
Life feels so so so unfair right now and I’m not okay with this. I have too much on and I can’t cope with it all. I can’t. It’s not fair. I want someone to help me. Do this with me. Apparently any writing ability I may once have possessed left me in my anger because this post is just a repetitive scrambled up mess – but then maybe that pretty accurately represents my life.
Could do with some serious hugs and TLC right now
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.
I know self pity isn’t a pretty look, but it’s stuck on me right now. Sorry.
Having a down one today, as the title might suggest!
I am just feeling like life is SO unfair, and I needed a moan. Why is it that I cannot sort out my future, my job, my place to live? why is it that this stresses me out so much? Why is it that I have exams that run on so late? Why is it that I have to feel shit whilst I am working? Why is it that Crohns is affecting me now, I needed a longer break. Why is it that because of being ill I have extra work to do, like special considerations? Why is it that I am somehow meant to come to terms with my new medication, with injecting myself all whilst completing my third and final year and somehow do it all with a smile on my face.
The Humia arrives on Tuesday, and the nurse should come before Thursday. That makes it less than a week today, right on exam season. I cant cope, its not fair. I am tired, I cant work, and all I want to do is cry. I have so much on in my life, and nobody has thought about all the other things that come with it . I am tired and scared and feeling sorry for myself, I just want a hug and to be wrapped up in a blanket and forget all of this.
Just. So. Tired. All. The. Time
had 10 hours sleep last night, been awake for just under 2 and my eyes are already so heavy I am struggling to concentrate and my body feels like it has been filled with sand and therefore weighs ten time more.
I woke up this morning so positive, so confident that I need to stop wallowin and push forward and crack on with my revision and beat this disease and get on with my work – and already I am faltering. I am struggling to stay away and its really getting me down, how can it be this badly affecting me already?!
From one tired and angry little person,
Got told on Tuesday that my Crohns is almost definitely officially back. The pain, the tiredness, the bathroom trips, the blood results…all adding up to some “not good news” as everyone refers to it. Your bloody right its not good news. I could write an entire essay rambling away about how unfair I find life right now, how I only got a year, how I want more time without having hospitals back in my life, how its unfair that blood tests and hospitals and medicines are a part of my daily life aged 21, how I am scared about my future health, how I don’t know how this will affect my relationship and friendships, how I am scared and so, so much more. But I won’t. Because, whats the point?
I have an emergency colonoscopy booked for tomorrow, so busy with the picolax (grim) , so hoping to at least find out whats going on in there by tomorrow. Got back a second set of blood test results from Tuesday which have come in as normal – woo – which is something at least! But I guess it could just mean that the flare that I was in has died down, but im worried- will this still show in my colonoscopy? How do I know?
In the meeting with my specialist he talked through some options for if it is back, including going back onto a steroid or using Humira or Infliximab (spelling is awful, sorry) and both of those sound scary and horrible and medical and I don’t want to have to face reality and think about them and the consequences. I want to go back to when my scar was just a reminder of those old days, when it was nothing more than a story I used to tell people who asked. I have so many lovely, caring amazing people in my life and all around me – all of whom are already rallying around to help me shoulder the burden of this disease; but do they really know what it will be like? how can they sit and tell me it will be okay, when they have no idea, none of us do. I am scared. And that’s not a nice feeling. Its weird how you can feel so isolated surrounded by people who love you. I want someone to be able to tell me how my future will be, that this will all work out okay in the end, please?
Depressing post, sorry. Hoping your run up to Easter period is going better than mine 🙂
So, since my last post everything has shifted a little, with having to consider crohns back in my life again.
Am having to work very hard not to throw a massive tantrum and sulk about how unfair this turn of events is, but so far I’m trying to crack on with life.
Had some tests done to see if it the results could be linked to a urine infection or some other illness I was fighting off, but they all came back clear and normal this morning. Normally thays something I would be happy about, but not this time because it leave just crohns.
So tomorrow, back for a blood test to monitor my inflammation levels, and then off to see my specialist in the eve. Just what I need. Maybe I am wallowing a little in self pity, like my housemate said it’s not lile I never thought it would be back, I’m still taking medication every day; it won’t make much difference to my everyday life. But psychologically it will and I know that’s ridiculous, but it’s true
Plus just to add ti my pile of self pity, tomorrow would have been my grandads birthday, and I miss him, so much more than I ever thought . So I’m feeling more than a little sorry for myself.
Hope everyone else is doing better than this!
Maybe I am being dramatic, some people will say I am being an attention seeker, but as of 9am this morning when I found out my exam dates these are some of the things on my to do list, and I am stressing the hell out:
-send all coursework recorded delivery to university by deadline, that I know arent as good as they could be because I haven’t done the module in 9 months, thanks Crohns.
-2 exams in the next week, no revision done for either as only told dates today
-find out what is in the exam due to be 9 months ago but not, thanks Crohns
-revise for exams whilst trying not to panic
-find out if still covered on Dads medical insurance since my stomach is really making me paranoid, thanks Crohns
– try to book to see doctors all of which are refusing to answer their phones
-try and get my prescription sorted because I need it to stay healthy or else I could crash and burn like last time; which is harder than it sounds because of re-registering to different doctors, and receptionists who refuse to listen to what I am trying to tell them, thanks Crohns
– Book colonoscopies, blood tests and a test to check my Vit D level because I haven’t had them in months as there is no co-ordination between the doctors I am seeing.
Feel like my whole life is out of control, I cant keep everything together. And all of it seems to be rooted in Crohns, I hate this thing so much sometimes I cant do anything but cry in frustration. WHY.
Its such a dramatic post I know, but some of you will be able to relate to the bursts of anger you get at how unfair all of this is, as well as the illness itself there is all the admin and organisation and burden that comes with it and sometimes it feels impossible.
I will climb this mountain, I know I will. I have no choice. But right now, sitting at base camp at the bottom of the climb it feels a little bit impossible.
I highly doubt that it is only me that feels this way, in fact I have heard others express these feelings before – but maybe it does everybody good to know that others get stuck in this rut too? The one where you feel like you FINALLY have got things starting to move forward before one day, or one person, one word or one action, one thing or one look throws you back to square one and you just want to cry. I don’t understand how life can be this complicated! It is one thing to try to keep your chin up, to be positive, to wait for a better tomorrow – but sometimes it seems like I am stuck at not just a crossroads but a spiders web of paths none of which seem right but all of which seem just that little bit appealing. I don’t know which to take, which will make me and others happiest and lead to an end with the least regrets and the most giggles. How do you know? And how, when you start walking down one do you stop yourself from panicking and backtracking? Because that is what I keep doing, trying and trying and getting too scared and coming back to this madness point and I don’t understand how to choose. I have always been indecisive, but a new level of confusion is something else.
Depressing posts these last few times – not fun, eh! Apologies. Crohnies is alright at the moment, haven’t taken my tablets yet today since it is all still packed up from the move home after university, but going to have to dig them out tonight! I am still so scared for Friday the 13th (see the last post!) so we can see how that turns out. I think I just feel like I am juggling too many flaming knives, and that each time I have a near miss I come a little bit closer to being burned even worse. HOW DRAMATIC AM I. Apologies for the doom and gloom, I shall give myself a slap on the hand for wallowing, grab a bar of choc and head to the sun for some Vitamin D and to get over myself and move on. Or try to.
Enjoy the picture below – makes me smile!
(Here’s Hoping. H x)
And it strikes again…
Spotted this as I was scrolling through the news earlier today – always alert for Crohns-related articles! (How sad does that make me sound!)
I don’t know if it is just the fact that I am really tired (and yes, a little hungover still) but it really annoyed me how the article made Crohns Disease out to be not a big deal:
“Whatever I have, the doctors have told me it’s treatable and the worst-case scenario is I’d have to make some changes to my diet. It might even just be a really nasty virus.”
I completely understand that this was before the final diagnosis was made, but what makes it kind of sad for me is that this article is highlighted on the news because of WHO it is about, and not WHAT. Don’t get me wrong I would never wish Crohns on anyone, and I feel bad for Sam joining the ranks of us who know the battles that are probably coming her way – but in my humble opinion the article could have been used a bit more as an informative platform about the disease, as a way to spread awareness. It is an embarrassing and hard to broach subject, so those celebrities that are in the spotlight that can shed light on the issues that many of us face could be a perfect way to increase knowledge and perhaps funding in the area. My thoughts are with her in the scary time of just being diagnosed, and I hope that she recovers back to her new normal as soon as possible; but I do feel like if anything the article makes the disease out to be an easily resolved solution – a bit of soup for a while, some rest and then diet changes with this disease that according to them is treatable…treatable?! I would love to meet the (ahem) qualified doctor behind those remarks- because out of all the specialist I have ever met they have not said that. No, unfair maybe – they say the symptoms can be managed and try to reinstate a normality into my life, but “treatable” to me is often inter changed with “curable” and that is not the case. Maybe I am being moany, maybe I am being unfair (please, tell me if I am!) But I really think the article makes it off to be too light hearted and missed a brilliant opportunity to make her a figurehead or spokesperson for the disease. I wish I had a way to talk to her, to a wider community of others even further than this blog.
Let me know what you all think