A little ponder deeper… Day 13,2017


So, this is a bit of a follow up from yesterdays post, and I will try to keep it concise because nobody can be bothered to read my rambles (including me!) , so here goes…

 

This blog is called “Living my life with Crohns” – but actually, maybe I don’t write enough about that. I write about my life, and I have crohns, and the trials and tribulations I face. But I don’t think I have ever written about what it is actually like. And that’s probably because I had never properly thought of it before my therapy session yesterday. And also because, well, it IS my life – its just what I know, and what I deal with everyday, and sometimes I forget that maybe everyone else doesn’t too.  (I know, I used the word AND way too many times, even to start sentances, which normally I hate, but here it is meant to be dramatic, so bear with me 😉 ). And, also, maybe I don’t sit and think about this side of things too much – which is probably a good thing, because it would be depressing and morbid if I did, but perhaps sometimes it is good to say these things.

 

It is SCARY living with Crohns. Maybe not day to day – right now I am in remission, and that generally means that it has a minimal impact on my life (touch wood). But it does mean I have to make quick trips to the bathroom – I refuse to put myself in a situation where I don’t know where one is. It doesn’t have to be a big deal, but wherever I go, I like to know there is a loo nearby! Also, I get very tired quite a lot – not necessarily after doing anything, but just being worn out. Sometimes this is just tiredness,sometimes it is fatigue, and they ARE different things. But generally, crohns is okay right now in my daily life, it just means taking a few tablets for me at the moment, and the odd hospital trip, but daily, it doesn’t impact me much more than that at the moment.

Crohns is scary. Because I have been there. I have been bent over double in pain, throwing up, unable to eat, crying out because I literally cant hold in how much it hurts. I have been unable to walk, and to dress myself after my operation, I have lost a huge amount of weight, I have been very sick. And it is terrifying to know that that came from within me, and that it could happen again. And that although I am doing everything I can to prevent it, and stop it, that ultimately I don’t have a say in that. It just might happen.

And that’s probably the second scariest bit, not just the potential pain that I know comes with it. But the fact that it might happen, but it might not. That it might start tomorrow, or in a year, or 5, or 35. I have no bloody clue. It could be fine and one day not be, and I would have no warning or no knowledge or no control over that happening. I wouldn’t be able to stop it. It may be bad or it may not be, but either way I will have no idea when it is about to happen and how bad it is about to be. And that, subconsciously I think, brings a lot of uncertainty to my life. It is scary that I could get a job, settle in and in 2 years be bought back down to nothing, because there is no way I could carry on with a job in the state that I was previously in, no way at all. I don’t think about that very often, but it is a thought that I have had, and realistically need to have, but that is terrifying.

The way I think of it is a little monster in my body, he may be hibernating now, and he may stay that way forever, but probably not. He will probably wake up again, and I have no control over when that is , or how bad it is, or how long it will last. Nothing. No say. This little creature (  I know it isn’t really, but that’s how it feels. A part of me I have no control over) can take over my life with  no say so from me, and the fact that is is MY body doing it kinda makes it worse, and so frustrating, and scary.

 

So, that is what it is like living with crohns. Or at least partly. It isn’t always like that, and it isn’t always so scary, and I don’t often think of it that way. But that’s realistic, and true. And terrifying.

 

I have now scared myself and need to stop writing before I spiral! Positive thoughts for now, and hope for a long and strong remission.

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

😓


Ffs.

I just have such an over whelming urge to cry- what’s wrong with me?!

Today I left my boyfriends and went to visit my cousins in London and it was lovely, we had lunch and saw part of the Notting Hill Carnival and then I came home. I’m so tired. I’m so sad. WHAT IS WRONG WITH ME.

I miss my boyfriend. I want to go back to him. Why am i so reliant on him? Why can’t I just be more like my old self and confident and self assured? I love him so much and love being in a relstionsship but sometimes it makes me a bit pathetic and needy. 😔But i hate myself for missing him so much! (Okay that doesn’t all make sense, sorry. But had to vent it!)
Anyway. I have to do my humira injection today, and it’s 7.45 and I can’t stop postponing it. I feel sick and shake whenever u think about just doing it. I don’t want to. It hurts. 

I think I want to do my masters, but it doesn’t seem like there is any funding. So I am not sure I can do it, and that is so frustrating! 

On yet another boyfriend note (sorry please don’t be too bored) I told him about this blog. The first person in my life who knows. Although I didn’t show him any. So he may not know it all! But you know what he said when I asked if he wanted to see any? “Maybe one day, if it’s your thing and your way to vent then that’s good enough for me”. I don’t know how I ended up with such a kind and gentle soul, and I truly don’t know why he has stuck with me! 

I am feeling like I need to rebuild myself a bit, make myself me. I need to be stronger alone, which I think will make my relationship even stronger. It is hard to be strong though, especially when physically I feel so weak and that comfort helps me through. I need to be able to do things alone, I hate feeling like a burden.

Such a rambling post. Sorry! 

Keep your head up and strong, and we will a get to where we need to be eventually 

H x

I’m sad and I’m scared…so obviously I’m blogging!


ciao,

I have just today got back from such a fab holiday with my family and my boyfriend in the south of France; and I wish I was back there so badly! It was so lovely to be in the sun and be free from stress and know all those days were dedicated to just sun and swimming and happiness! Although I genuinely felt like a whale for a long time and it’s making me feel very self conscious of my already imperfect body; but I get so tired and a cheeky sugary snack pushes me to where I need to be! An excuse? Yeah maybe. But true. 

My boyfriend got ill when we were there, nothing super serious but enough to knock him out for a few days – and I have never seen him quite like that! It most definitely bought out my inner protective side,  I hated seeing him so ill and down and not himself! Had to be careful what with sharing a bed etc not to catch anything off him (and let’s be honest I still won’t know for a few days I guess) but so far feelin okay! 
I am KNACKERED. We got home at like 3? Maybe earlier; and I just slept. I had fatigue hit me hard and I think it is a combination of travel stress plus being up early plus fear for the next few days, which is most definitely a factor.

 When that plane touched down now only we were plunged into a literal downpour of mass rain, but that pretty much reflected me feelings. Tomorrow I have my grabdads stone setting ceremony (a Jewish tradition a year after the funeral to end the mourning time and celebrate their life); and I know it isn’t meant to be a sad occasion but I haven’t had the stomach to go back there since the funeral and just thinking about losing him makes me tear up every time, so I am no sure how tomorrow   will go. That stresses me out. I have to face my injection again on Sunday, and if you saw one of my previous posts you will know that this went to shit last time, and I am genuinely scared I won’t be able to do it, the pain and the inner strength needed to press that clicker – I am not sure I have it left anymore. Ouch. I have to decide about my future, about my masters or not and my job or not and who i would live with or not. So much pressure on one little person, and I am not sure how to cope. This obviously makes my stomach play up more. Waa. 
   
 
I have included these two photos from the Abbvie care magazine that I just received; both of these seem so relevant to me. I feel like I am moaning and boring and crohns sucks away the essence of me; that I become miserable and no fun and I want that spark that was me to shine through the shit ness and give happiness back to those who light up my life, but I don’t think I am doiggood right now.

I want to share this blog with my boyfriend (if you are reading this then hi, you wonderful amazing person you! 😉 ) but I am scared that I would lose my secret moaning space. scared I would feel I would be restricted in my moaning here, as I am in real life. Yet another decision! 
I can feel myself drowning in feeling over whelmed, and I am tearing up as we speak. So I need to get my ass away from this phone, slap a bit of eyeliner on and a fake smile on my face for this evening and an evening meal with my family. Hopefully their madness puts a smile back on my face
H x

Addicted to blogging? Maybe…


Okay, So I know this is my SECOND blog of the day, and each of these are probably as boring as the last. And the poor fools of you who are following me and getting spammed by these emails are probably hoping against hope that I lose internet connection and am unable to carry on with these nonsense fllled posts- and get ready to celebrate the fact I go on holiday in a day or so and you will get a weeks freedom!  However, I think I am addicted to blogging. You know when you get that feeling, any feeling ready and you want to moan and rant or laugh or cry or share your revelation; well now I turn to here when I get that.

Right now, I may be home and enjoying the freedom and the knowledge that I don’t have to attend work again for a while, but I am also concerned about the uncomfortable and weird feelings going on in my stomach. I am up to date on my tablets (naughty me for missing a  few previously), and the injections (apart from my mishap this weekend) so why does it feel weird? why? thats UNFAIR. I have a colonscopy in a month, but it doesn’t seem soon enough to put my mind at risk.

I can’t cope with being ill. I am already back to feeling the cramps and having to run to the bathroom. To feeling sick for no real reason, to being paranoid about what I eat – as well as all the normal twenty year old fears such as being fat (which in my case is becoming worryingly real!)  I don’t want to be ill again, and it scares me. And I can’t say this to other people, because how can I say the same fears every other day when they have no answers to give me, and I know that. How can I keep telling them the same thing, when they have no  real reassurances to give? I have to blog here because I can’t keep it in or I would go crazy.  I can’t pretend I don’t think about it at least an hour of every day of my life, and I can’t pretend that the future doesn’t scare me. But for now, al lI have is this…this outlet of my fear. I hope it shows other people, maybe just one other person; that being scared is okay. And being paranoid is justified when you have been through what we go through.

Is is the stress of my life at the moment that is going on? Is it the worry about going away, or the stress of work and the big decisions i have to make? Is it the nervousness of going to my grandad’s stone setting funeral? I miss him, and I am scared of missing him even more, or having to acknowledge the gap that his passing has left in my life. As well as many others.

Anyway, whatever it is, I hope that it goes. I hope that my stomach puts up with what is coming its way; I hope that it is nothing and just a bit of tummy ache. Please. And thanks!

If I don’t post in the next few days, then then be happy that I am on holiday and going problem free!

Enjoy the good weather

H x

The scroll of sadness 


(Not a literal scroll…like a scrolling action…in this case down Instagram!) 

Just a quick update of what happens when you search humira , you get reminded that you are not alone and not the only one that finds it hard; but it also makes me a little sad because there are no positive faces; every one of us knows we are on this for a reason; but that doesn’t make plunging a needle into yourself much easier. Or not for me. Not yet…
My stomach is starting to feel weird again, and as I am due to go on holiday in two days I just have everything crossed that it behaves! 

Sending positive vibes! 

H x

  

Higher than high and lower than low 


Hi guys,

The last like 48 hours have been the perfect example of crohns; I have flown higher than high and felt so happy I was crying with laughter; and so low I question how I am meant to keep doing this, and how this hurts. It also showed me that although a lot of this blog and this illness is about me, the way that it affects me also depends on how those around me act and cope with it. When you get scared and you need someone else to be brave for you, or when you get tired and need someone to say that it’s okay. 

I don’t have any aim for this post, I don’t really know what I wanted to say; I just wanted to say something. I am officially 22; and can’t believe how old I am haha! I finished work o n Friday and got home as quick as I could to get changed and ready to go meet my friends for a birthday dinner. It was so so lovely, I had some of my closest friends with me (some couldn’t make it , but enough to did and it was lovely!) and I got to spend time with people that make me laugh and happy and it was so nice to have my boyfriend and uni friends and home friends all together and happy and …it was lovey! We had dinner then went to the pub and had one of those slow drinking nights bumping into old friends and crying with laughter at old stories and new friendships until the early hours! And then I got to go home and wake up the next day on my birthday with my best friend beside me, and my boyfriend stayed the whole day and night and it made my birthday just that bit better! 

So for my birthday we did some presents and hung out with my dad and the kids. We had breakfast and went bowling and went for lunch- and it was so happy and nice; in part because I was insane at bowling and won by a long time haha! Then in the afternoon I came to see mum and hang out at home with my autie and uncle and brother (and the boyf) and played some games and ate some pizza and it was s chilled and lovely! 

My stomach did start to play up a little, I was hit by a few waves of nausea and the odd cramping but it wasn’t enough to put a damper on my evening, and was never going to brig me down! Today though, today was the downside. I slept for ages, maybe 10 hours and still am knackered at just 3.30. I had to get up several times in the night from not feeling great; which eas the first time in ages my stomach has woken me up 😦 but it was alright. Today I had to do my injections and I had planned to take photos for this blog post, but I couldn’t. I panicked and got scared. 

Humira. Injections. Needles. Pain. I have got so much better at doing it, all I need is my tissue for any bleeding, the injection and a hand to hold tight and I just line it up and get in with it! You know it is going to hurt but you can hold your breath and get it done and know that it will be oaky after. But it is scary and noisy and painful and unpleasant. And I get scared everytime.

Today, it hurt so badly. Honestly, I couldn’t. I psyched myself out so badly, I got my thing all lined up and ready to go I did my countdown, my boyfriend did the countdown, but my thumb just wouldn’t work. It hurts. And when I finally pressed that button and heard that god forsaken click, it hurt so badly. I swear it hurt more than before, I can’t explain that pain and then that panic that followed. I cried, and it hurt and the pain was horrible and .,..and apparently I have lost the ability to articulate but that pain and that fear and that panic is indescribable. And that self control to hold the needle in knowing that it is hurting. It is the hardest mix ever. 

I finally heard the click and took he needle out; just to see a dribble of liquid come out down my side, and bubble by the injection point. That meant is didn’t go back in properly. That means I didn’t get my full dose. I hurt myself so badly but it seems like it was for nothing because it didn’t even all go in. What am I going to do? Will it still be effective?  Please, please don’t have them say I have to do anther injection. I just cried. My poor boyfriend, he is beyond amazing at it, he has such a needle phobia but still stoutly sits there every time and holds my hands and comforts me, and I can never say thank you enough. But still, it crushed me. How can I still not get it right- what did I do wrong? The pain was so much worse than normal did I pull it out too early? Did I not press hard enough? How , HOW am I going to get myself to do that again in two weeks? I have read so many things about people having panic attacks before hand, and I thought I was doing well and had it under control, but I don’t I am scared; so so scared. And now I am sat under a blanket trying to pretend I never have to do it again, so tired out both physically and emotionally and just wishing that these injections weren’t a part of my life. 

It’s been a roller coaster! 

I just want the next few days to be sorb so I can go on holiday and enjoy the time I have off. I still need to figure out the whole sun / sun cream thing. Need to figure out how to get over this fear and so much more. 

So overwhelmed 😦 

H x