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
abd at age 22 as well, it isn’t fair.
I’m back at work today and so shattered and tired and shaky I could cry. It took all my energy to get me here and I can’t cope with actually working and the thought of physically trying to get myself home again makes me feel ill.
I really struggled doing the picolax prep this time around, feeling dizzy and sick and helpless and more than anything terrified about the future. But it came anyway, the big day I was both dreading and wanting to avoid and the day I wanted to arrive quickly so I could better understand my insides.
It went well and awful at th same time: the end result is that the humira is working, I did it. I got rid of the ulcers that had re arrived. They took biopsies to check at a cellular level , but otherwise it’s a thumbs up! I know I will be more pleased a out this when I feel better, but right now I’m struggling to even hold my hand up to type let alone think about future implications.
However, it hurt. I felt the drug go straight to my head and welcomed it, the colonoscopy had hurt before so I was happy for any relief. But it was nothing like this, it was so painful and uncomfortable and make me hurt and cry, and it scared me. Apparently my bowel kept stretching or something which made it painful for the camera to come around. The weird thing is I am still struggling with things like fatigue, so am going to experiment with my medication (my doctors trcommendation) to look at seeing if I can get rid of his fatigue. I hope to god it works.
I am so tired and so shattered and I just need a day off. I need a day where someone just cares for me and hugs me and looks after me. I need a recovery day. And I don’t get one, and that is terrifying. Although, my boyfriend has been amazing. He came down both days to be wit me before and after work and put up with my awful company just because he knew it would make me feel better. He can’t even know how much that meant, what a difference it makes when so often with this disease you feel alone.
I am sat here trying not to cry. I just want to go home and have a day to get myself together. I don’t know how to get through today. I am not strong enough o my own.
fatigue can p*ss right off.
I am always hesitant to say that that is what I am suffering from because sometimes I’m just normal tired. And that’s fine. But I felt so exhausted yesterday but still went down to Southampton on a girls road trip to see our old house mate and go shopping; and I am so so glad I did- it was such a happy lovely day. But I got tired at about 5, and I mean struggling to open my eyes tired, not haut a bit sleepy
Now it’s nearly 1pm and I can’t get out of bed. I haven’t eaten or drunk, I just don’t want to move. I am fatigued and my limbs are heavy and my eyes feels like lead and I just never want to move again. But I have so much on in my life what with boyfriend, and not seeing family and trying to split time between mums and dads and trying to decide in a masters and to tidy my room and sort my washing for work next week- but I just can’t face any of it. Add it in the random bouts of unnecessary crying and the slight feeling of self disgust I am having about my looks / self confidence right now all in all it isn’t a good day.
I have my colonoscopy next week so am looking forward to getting some answers! I have been feeling a bit sick after eating recently, so I am hoping that is just bad luck and not anything more – but I will just be glad To know!
Hope your all having happier weekends than me
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
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, last week I had to do a group presentation for one of my modules – and we only had two weeks to compile and get the abstract approved, and create and practice the project on a topic which was entirely out of my comfort zone; sustainability.
It was interesting for me to work with entirely new people all of which were differing ages and from different disciplines to my own, and although at time it was challenging, it was an experience I relished. I got my grade back yesterday and came away with a first for that part of my course- YES! I couldn’t have got a better grade, and presenting is what I generally see as one of my weaker points..I was so happy! It was this presentation that I wanted to consider though…because we were filmed doing it.
I have just found it online, and watched myself present (it is meant to be an exercise to see any “ticks” or obscurities that you carry across whilst presenting, and then to be able to correct these and improve yourself for the future) but I just looked at myself and was proud. THat sounds ridiculous, and smug – but its true. Whilst presenting I had my little notecards, I had practised enough but I stood there and I was nervous and I made one or two awkward mistakes where my voice broke or something ridiculous – but I laughed it off and carried on. I look up at the aurdience, I made contact with them. When it was the question session I could laugh and be serious, I could encourage people in my team and answer questions – and I looked confident. I watched myself and thought, I’m not too bad. And you know what? When I was presenting I felt it too – a surge of confidence which said yeah, look at me. I know what I am talking about, ask me questions, I will know the answer. I worked hard on this and I am proud of it and It really made all the difference.
I know that sounds so up myself, and like a post that was purely to brag – and maybe it was a tiny bit of self indulgence to write this. And if so, I am sorry. But it was amazing for me to see myself standing infront of a group and talking and laughing and being normal and strong and confident, succesding in my studies at least in this area. BEcause it was only 10 months ago I started this blog, and less than that that I was rushed to hospital in an ambulance, and less that that again that I was lying in my hospital bed feeling alone and demoralised and unable to see myself getting back on track at university. For so much of second year I shied away from the spotlight because of Crohns and the awkward rumblings and the insecurities and everything else that came with it// But know I have beaten that.
Just on a side note (and I cant believe I didn’t post about it!) I GOT RESULTS BACK FROM A COLONOSOPY LAST WEEK AND I AM OFFICIALLY CROHNS FREE. sorry, don’t mind me while I victory dance away in this corner *woop*
Flying high guys, up in the clouds today…hope you are all up here with me 🙂
Happy days indeed
Just an add-on to yesterdays post, this is my right arm yesterday with the cannula in – the first in my left was unsuccessful and is still painful today
I sent this as a snapchat to a few of my friends who wanted updates on how yesterday went and I was too shaky, nervous or sedated to type properly – so a quick snap was perfect!
Something that made me sad, but also made me laugh ; was that so many of my friends were grossed out ir shocked by how medical it looks- in a hospital gown and bed with needles taped into your arm. Yes jt isn’t the nicest sight, and Im not exactly the biggest fan of it- but I am so used to it now, so used to hospitals and the procedures and the rest that it seems not so bad to me. It saddens me that my life is just that little bit different to all my friends in that this scene is a part of my life and one that is still so alien to them. This “casual-ness” (sorry no idea of a better word ahha) on my part towards the procedures backfired a little bit yesterday when I acted fine but then reality hit me about two hours before the colonoscopy and I felt so sick and shaky- putting on a brave face is fine but I need to remember to allow myself a panic and time to prepare!