😶


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

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Update…


I have literally 0 energy left to think of an even semi imaginative title, sorry. 

So went to doctors today because I have the worst sore throat, is really affecting me and now waking me up at night, as is the cough that accompanies it. This is not only wearing me down – alongside the headaches too- but is just adding to my general stress and anti-wellbeing. It also means I’m not / can’t take my humira injections whilst I’m ill, which means fatigue is currently kicking my ass and I’m feeling generally worse 😦 anyway I explained all this to the doctor who booked me in for bloods next week, and gave me some antibiotics for my throat in a attempt to get it sorted quicker. 

I am FED UP of being tired. Bored of being ill. Done with crohns and all its side effects. I have been at uni for just a few goes today and I’m done in, how am I meant to cope with a job and a social life? 

Needing a little boost today 😦 

H x

A little update from a very tired someone


Ciao amigos,

 

I went down to Southampton for another check up with my specialist- involved waking up at 6.15, driving for 2 hours and then a 15 minute chat before another repeat; in total I was out the house nearly 5 hours and its completely wiped me out for the rest of the day!

He in essence said:

– CArry on with both Humira and Aza because although I probably only need one, because signs came back so quickly both is advisable

-Stay on them both until at least the end of my masters, to try and stop any disruptions affecting my work

-If the tiredness gets worse it may be due to things like “the part of me that got removed is meant to soak up and re-cycle bile but because its AWOL there may be excess bile which could lead to some of my discomfort and the grumbling noises” so this could be treated

– Get blood tests every 3 months for check up and monitoring

-Going to transfer doctors to one right by my uni so wait to hear from them (Unlikely that’s going to happen any time soon, lets be honest!) which is exciting but im worried to leave him behind, he is the best doctor I have ever had!

-Go see the dentist with regards to my teeth / gums which keep bleeding 😦

 

 

Anyway, I am not zoned in enough to type anything else. I am feeling a little sorry for myself, tired and a bit fed up (whats new?!) so I will stop now rather than fill this post with moaning!

 

be Happy

H x

 

Humira’s a b*tch 


I try so hard not to swear, but I literally have 0 other way of describing it. 
WHY AM I SO RUBBISH AT IT. Actually, seriously, why? 

Still results in a crying mess, shaking and feeling ill. Still can’t just “get it over with”. Still feel like a stupid baby afterwards. 

This post has literally 0 meaning aside from a good old fashioned sulk. It’s not fair, why should I have to do that? I don’t want to do it 😡 I want to be one of those people who can just pop and inject, smile for the camera and move on with their day. Unfortunately I am a massive baby and thus far incapable of that. 

I guess it has got a little easier now having had colonoscopy results and knowing that it’s working..so I guess I now know it’s worth the pain! But also grumpy because it means there’s little chance of me stopping it anytime soon haha- double edged sword for sure 😆

Anyway, sorry about the lack of insight and just a general sulk. I just really thought I would be better by now, and I’m dossapointed by what a baby I still am about it! 

Ahh well, plenty more times to try and get better I suppose!

H x

What if I am just writing in circles?


What if I run out of things to say? I am worried my thoughts are all the same, mundane worries and fears, stupid self conscious and self deprivating thoughts as well as general despair about my future! Alongside obviously the ridiculous laughing fits, the happy photos, the loving cuddles – but these are things that maybe don’t come across so well in this blog. I am worried  about posting too much of the same, of being mundane, of being boring. I was so sure at the start of this that crohns would take over my life, and I would constantly have these horror stories to post and this would be my only place to vent truly – and sometimes it is – but crohns hasn’t changed me in the way I thought it would.

it has changed me, lets not beat around the bush here, it has. And I don’t like all those changes, and some days I hate them and resent them. But other days I accept them, and even am kind of proud of them. I hate the fact that I still cannot cope with my injections, that last night my boyfriend was out signing a new flat which he can  in with his friends, being sociable, being an adult, doing what I want to do – and where was I? Crying in bed having just done another humira injection, and trying not to be sick with the headache and shakes that it bought on. How is that fair?? I hate that it makes me feel so different sometimes. I hate that it made me bitter and kind of jealous of my boyfriend, in stead of being happy and celebrating for him, I hate that I only see the negatives sometimes, the fact that our lives will get more different and all I see is the negatives in my situation- I hate that it makes me feel those things – but maybe they were already n me, and this is just my way of rationalising it? But then, I am proud of myself for being a normal (ish!) person – for having to inject myself but not letting that stop me, not letting this disease control what I do. Infact just yesterday I got a letter saying that my most recent biopsies form the colonscopy came back clear WAHOOO. Helps to lighten the grump I was in about having to go get a flu jab this afternoon..i still hate needles!

I find that weird actually (side note) that doing my injections is getting harder. I thought I would be used to it, get less psyched out, be more able and ready to cope. And I am not, I am worse. I psych myself out more, I know the pain doesn’t get bearable, I know that pushing that button is going to inflict pain and in that moment the fact it is helping me be better doesn’t even reach my consciousness, no matter how man ytimes my mum says it! All I know is that when I push that button it is going to hurt, and I will hate it. Sometimes I do my count down and swear I move my thumb but it just refuses on its own! But that a whole other blog post 😉

Anyway, I am not really sure what the whole aim of this was, it was pretty rambling and more than a little confused, and I am sorry! It is an honest insight into the mses which is my head right now – enjoy 😉 I hope to keep posting regurlarly, and that means not making something more dramatic or ridiculous than it is, if my life is pretty quiet then so will my posts!

Hope you are all happy,

H x

Guess who’s back?! 


Sorry for the break since my last post (or maybe you all are welcoming the peace and quiet?!) but I am back and back with a vengeance 😉 I have just been so busy recently and everytime I have thought about posting I chicken out, it’s tiring to put yourself out there and open yourself up to the world sometimes! 

Anyway, where am I now? Sat in the cafe opposite UCL Archaeology Building waiting to go for my next lecture,  because yes I AM A MASTERS STUDENT awahhooooo. Very exciting but also tiring and slightly stressful! I am enjoying it but it is all a lot f pressure and quite scary!

Things with my boyfriend are…good. We had a bit of a rough patch which is hard and scary, but we are also (I think) having some of the best times together. I found out yesterday he has read part of this blog (hey if one day you read this!) and it felt pretty damn weird. I ha said I wouldn’t mind but since I didn’t know he was it felt a bit like snooping I guess. I asked what he thought, although I was dreading the answer. I was worried he would think “moany” “grumpy” “pathetic” “weird” and the like; and all he was actually saying was that I should never stop. Never change what I write, to keep being honest and truthful and leaking anything I need to to make myself feel better. All he was worried about what that I found out he read this and that it would change what or how I wrote. And maybe it will. And I am sad about that. But I am also pleased and feel even closer to him. I am proud I am dating someone who is so kind that that is all he worries about, not the manic moaning and weird whining that he read. So, if you ever read this- thank you. X

Have had such a lovely weekend, although q few ups and downs, and am already counting down the days until the next one- y life seems spent waiting for something else to happen, which isn’t how I want it to be! 

I am scared about the future and how much everything is going to be changing for me. And how o hope that I can hold on to some things that I have now, and it will slip away. I hope it doesn’t. I am so so happy, and those times when i feel sad I can cope. And that feels good.
Wish me luck with yet another humira injection tonight. Sob.

H x

Colonoscopy #4 done and dusted


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.

H x