I know I have been uber rubbish about blogging recently – mainly for the simple reason of lack of time and motivation. I am feeling super crap about myself at the moment, the way I look, my insecurities, my total inability to do something which at all seems productive.
I had a big project due on Saturday, which involved helping to plan a festival (of LEARNING before anyone gets any funny ideas about my course 😉 ) and despite the stress that actually really helped to keep me focussed and motivated, and something to do everyday, with people to see. Now, not so much. Plus, I recently found a hard lump, which the doctor said was the start of an abcess, and that proceeded to pop on Saturday night- which was just massively embarassing and inconvenient seeing as I was at my boyfriends, and had no idea what was going on. It ended in a situation I never want repeated, with him having to help me clean up, not something I am proud of , and in that moment I really felt the crushing huge-ness of this disease, and everything that comes with it. Whatever, turns out he is stronger and better than I am (which i already knew, obviously!) and took it all in his stride, and I guess onwards and upwards!
Just a post to say, I am still here I guess- and I rpomise to get better at writing, and keeping you up to date. Currently, I am trying to write a dissertation which is just not coming together, trying to find a job in a market with none, and balance general feelings of invisibility and usefulness, and my personal insecurities. So, all the fun is being had over here.
Chin up, stay strong, we can get through these times (y)
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
I am so fed up right now.
I feel like no job wants me, I have no money to move out, my family is falling apart like theres no tomorrow and to top it off?
I FOUND STRETCH MARKS ON MY THIGH. So I am fucking fat too. Great. Sorry for swearing, I try not too, but tbh I couldn’t care less right now.
I feel useless, and fat, and tired, and emotional. I have so much going on in my life, so much scary change – and yet also no change at all. Scary that everyone else is changing and moving on and getting better, and fucking depressing that, once again, my life is moving nowhere; aside from my waistline moving outwards.
I tried to fucking hard to diet and be healthy, and it just got me tired and so shit feeling and stressed that my crohns messed me about. So whats my options here?!
Initiating day 1 of “eat nothing, be miserable and try and just get through the shit wishing I was someone else” can start tomorrow. Woop-de-fucking-do.
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.
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?
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 🙂
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 think, I have a gut feeling, that its back.
I hope its not, I hope I am wrong, I hope I am being paranoid. All through this process whenever I was given options – for example “we are starting this medicine theres a 70% chance it will work, but if not we can up the dose” I needed the raised dose. “We probably can just do a scan, if not we can do a colonoscopy” I needed a colonscopy. “only as a last resort do people need an operation, its rare”…well guess who needed the op? I know. I know, its moaning and self -pitying to write like that, and for the first time in a long time I am sat here pouring out fears in a way that probably makes no sense; I am writing for the sake of spilling my feelings as opposed to trying to write a good post, necessarily. I am writing because I am scared and I need to blurt it out, not because I have an interesting thought I wanted to share.
My colonoscopy has been moved to Friday the 13th June… I know. Guess what that day is? it will mark exactly 6 months TO THE DAY that I ended up in an ambulance into A and E because of a crohns attack. I guess it must be fate? I hope that it is the neat end to a full circle, from a rapid deterioration to a recovery and confirmation of being all clear. I hope so. But I am worried its just a sign that I had my 6 months circle, lets begin again.
I am being selfish I know, it returning will not be the end of the world – worst things happen. I will get over it. I will. I just don’t want to have to get over it…I want to be able to be lazy in terms of not having to fight my body to function normally and eat what I want and do what I want. I want it to just work, to keep enjoying this freedom and happiness I have found since the operation. It wouldn’t be fair. But then, life isn’t fair….gulp..
Sorry, for the deterioration in post quality! Sorry for the rant, but thank you for being the outlet to the rant, it was needed
Hope your days are going better than mine