Abcess 1, Me 0


Hey Guys,

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.

BLEUGH.

 

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)

 

H x

A dark day indeed..


So I hope you haven’t clicked on here today for a cheery read or a smile, because there is none of that around here for me today.

I felt really ill yesterday – I have had a sore throat for about 2 weeks now, but it just hasn’t been getting better. And I have this cut by my ear (have I mentioned that? Getting deja-vu writing about it so maybe!) which just wont heal, infact it is getting worse. I have put all this down to my shitty immune system, but yesterday just took the biscuit. I was so tired, and I had such a headache-  I felt like my head was full of pain, I felt dizzy and couldn’t concentrate, and everything just felt heavy and painful, and to add to that bundle of fun the bottom of my back was really sore, almost like period pain I guess but in the wrong place? Anyway, went to bed early and almost definitely had a temperature, had a combination of the hot sweats and freezing shivering, which combined with my uncomfortable back meant I hardly slept at all, and spent the night feeling isolated, ill and more than a little sad.

Anyway, woke up this morning and felt no better- and since everyone at my dads was out, I went over to mums for some company (and sympathy!). I slept on and off most of the morning, then managed to eat a sandwich and then just slept again before trying to crack on with my work – the pressures of getting these essays done are really hitting me now 😦

I get back to dads and my younger siblings break down into the BIGGEST meltdown over minecraft (of all things) whilst my dad was on a work call next door, so  I had to deal with that – trust me, no fun. Then this proceeded into having an argument with my dad, who came out the kitchen having said “your stepmum said you had to go to mums today because you were too ill to unload the dishwasher for her, guess it must be suuuuuper serious. so what was even wrong this time”

Needless to say maybe I didn’t handle it as well as I should have, bursting into tears and refusing to talk to him. I constantly feel like I have to defend the fact that I am ill, to prove to people I am not just faking it to get out of chores, or work, or helping someone – do you really think I fucking like being this broken aged 22? DO you think I wouldn’t prefer to unload the dishwasher 100 times over than not be able to recover from a cold in a few days and instead be stuck inside this shitty body that doesn’t do what its supposed to? So, an all out argument ensued. And yes, I could have handled it better. And yes, he said sorry. But that doesn’t make it different or better. Nor does the fact that he said (and he isn’t the first one): “Just go to the doctors with these new symptoms” and “your ill more than most people, so sorry that I didn’t take it that seriously, its just, your always ill so its not such a big thing when you say your feeling bad”

Excuse me? So because I have a crohnic illness and am on a lifetime of drugs which play havoc with the natural order of my body it doesn’t matter when I get ill? REALLY?! because in my book it should be the other way around. If I got ill twice a week, it should still matter just as much. And I KNOW I am being over dramatic, semi-taking it the wrong way and also being unfair to my dad, but I am fed up of people doubting me, and changing what I feel and say to suit them. I am fed upof going to the doctors and everyone being like “huh your not that ill” or the doctor going “theres nothing I can do, your immune system will sort this” YEAH RIGHT.

I just feel like I don’t fit in anywhere, I don’t belong anywhere. My boyfriend doesn’t want to live with me, my parents are sick of me and to be honest I just feel like I am in the way wherever I go. I am bored of being sick and of not having a way to get better, I am bored of constantly being ill or worried about if its just a cold or something more. I am bored of having 14 days at the most to count down between injection times, and dreading that moment more than anyone else will ever know. I am bored of trying so hard to get into a career I want, but knowing its not going to happen so having to give up. I am just bored, and fed up. I need a helping hand I think, but I fear I have none left to use.

H x

 

 

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

The quicker today ends the better 


I am having a serious bum of a day right now 

I guess it was fine, I just wish it would have been better. Enjoy a broken up, rambling post. Apologies. 
Have been SO tired all day, so so tired and struggling. It makes work harder and life harder and being happy harder. 

Here is my list of current problems: 

-it is my step mums birthday I got home and everyone has been out for the past hour and a bit, glad I rushed back

– was promised takeaway and now we aren’t having it (okay this is a spoilt cow kind of moan, but whilst I am moaning WHY NOT. After today I felt like I deserved one) 

– I am really tired, like really.

– I’m frustrated at people. At my boyfriend. At my friend. At people who sometimes don’t understand me 

– I’m so angry at my brother. I bought my step mums all her presents for her 40th, as of yet no offer to pay his half, he hasn’t wrapped them and he went to football instead of coming over so we could give them to her. What a selfish and arrogant move

-I found some stuff j didn’t want to, just a medical thing and nothing bad but fristrating. And since I have to keep working, then I can’t get the time off to sort it

-stressing about how to ask for yet more time off work 

– I feel like an absolute whale. I don’t know if it’s anything to do with my medication (or if that’s just me avoiding the fact) but I am constantly so hungry, and seen to be piling on the pounds even when i try to eat less. And j am going away in 10 days and am more stressed about looking awful than I have been in years. 

Eugh. I have ti wait for my step mum to get home, to say happy birthday. But all I want to do is get in my PJs, under my covers and not come out for a long time. 

SOS please?

H x

I’m too tired to think of a proper title 


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

H xx

decisions are not my friend…


Hi again,

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?

#disheartened

H x

I’m really struggling. Its, unfair.


I cant remember when I last posted, or what it was about – and so I apologise for any long gaps/ random jumps between posts.

This weekend my boyfriend got back from his 3 week trip around America, and it was soo lovely to see him and spend the weekend with him. I took Thursday and Friday off from work (did I mention I got a new job?!) and it was also his birthday on Thursday, and had the nicest time! We stayed the rest of the weekend at his house, and was so nice to see his family again too. Then on Monday another day off work for my graduation, which was quite stressful! But, ultimately, fun 🙂 and a proud moment indeed!  I was really nervous so couldn’t eat my lunch before (although managed to fore down a few bits of garlic bread 😉 ) but my throat was feeling sore, but put it down to nerves!

Anyway I woke up again today, ready for work. And felt so ill. A sore throat, hurting to swallow, a headache, a really “full” head (no other way to describe it) and being all clammy after having the sweats all night. I called NHS 111 and they advised not going to work and heading to the doctors ASAP, which is what I did.  He said my tonsils did have a coating, and were definitely not healthy even if they weren’t super inflamed and that he was concerned about my other symptoms. He took me through for an immediate emergency blood test, and should get the results back for Friday. I hope that they come back clear, but at the same time if they don’t then maybe they can fix the issues im feeling – the intense fatigue, the headaches etc.

On a side note, I was so angry with the hospital the other day. After doing another humira injection on sunday, I was concerned that after 3 months I haven’t heard anything from them, so I called them en route to my graduation. They said that it was my fault for missing several appointments – despite the fact they continually send the letters to my old university address, even though I have told them that I have moved back home twice! Anyway, it means I have had no blood tests or follow ups, and it means that Im not sure if I have any internal symptoms from the medication that I may not even know about.

I have a new job, a new job which I already have taken holiday from and am now taking sick days for an unknown amount of time. A job I’m not sure is my forever job. Decisions to make. Stresses to cope with.

It all feels a bit  much right now.

H x