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

 

 

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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

Back to my natural stalking ground…the hospital


Hi all, hope you are well! 

I have no drama to fill you in on, no big change; just my daily life – me living my life with crohns. (My phone just autocorrected that to “loving” my life with crohns – the irony!) .

 I am currently still working in London (on my morning train ride now) and the job is getting better in terms of I get along a little more with the people, and I understand the work and am busy, so the day goes faster.  Just still feel like there are so many big decisions I have to make abojt my future in the next month or so, and that is so scary! :/ do I take on my masters if I get offered the place? Do I stay working instead? Do I move out and if so who with? How do I manage my weekend time so I can see my boyfriend but also my family? So much is changing all at the same time that it is tricky to understand it all at once! 
Anyway back to the doctors tomorrow morning, have to leave at 6am to get there in time! Luckily my boss said I can work from home tomorrow afterwards, just got to figure out how I’m getting back! I am nervous about what he is going to say, or what tests he is going to ask me to do – I haven’t been monitored once while being on hunira and am obviously oberdue, am just nervous as to what it may be! 

I think the biggest issue I am facing at the moment is the fatigue. The heavy limbs. The exhaustion. And the fact everyone thinks I am just tired and a good nights sleep will make it better; I am sick of explaining its not the same kind of tiredness, so now I nod along and smile and get to bed early. I just wish it was that easy.  
H xx

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

Crohns is back and fighting, but so am I…


Hi all,

So sorry for the dramatic last post and then lack of follow up – to say that this Easter has been hectic for me is an understatement! I have had the hospital filled first week, and then since then I have had to complete three 2000 word essays, my dissertation and prepare for two exams – all of which happen within 3 weeks of each other. Stressed doesn’t even cover it!

Writing this quickly just as an update, before packing up and heading back to university for the final push! Cant believe I have nearly finished, so much has changed…but that’s a post for another day!

With regards to my crohns the colonoscopy was grim (aren’t they always?!) and they confirmed that there is ulceration indicating that Crohns is back, which is very disappointing; but luckily it isn’t as bad as was expected, it currently isn’t too aggressive – which is something positive! I have only upped my current medication by 25mg a day, which isn’t even an extra tablet, so so far it is all under control. As it stands now though, I haven’t been told to d anything really, just to wait..just to see what happens and THAT my friends is a little terrifying. Now as if I don’t have enough on my plate, I was told to meet my specialist when I get back to university to discuss future treatments and the future in general – but to do this my private health care has to approve the meeting, and they wont do so at the moment because I fear I have reached my maximum usage. They need to review my case files and assess how much, if any, more support thye can provide. This is SUPER stressful, it not only requires so much more of my time to fill in forms and chase secretaries to follow up to allow this assessment to take place, it also means that there is the chance they will not approve for me to go back – just cut me off as it were. My parents have said they will pay for me to have one last meeting with my consultant to arrange a future health plan if thi s occurs, but I like my doctor and want to stay with someone I have finally found who I trust and like – ARGH!

But, I have to remember how much I did with my crohns – and that was when I was really, really ill. I went to Rome, I excavated an archeological site for three weeks, I travelled to Naples and Pompeii. I climbed Mount Vesuvious – actually did this during a flare and was nearly crying at the top- but I did it. I climbed it. I conquered it!  This is what I need to remember, I was a lot more ill last time, and I still managed to achieve so much. now I know what is happening, I know what I am fighting and I have help and support from the start – I am stronger and wise and better, which means I can achieve even more than last time – right? It means I shouldn’t let it get me down and should just keep fighting for what I want to do in life, and Crohns can come along for the ride if it wants, but it is NOT in charge.

Sometimes a cheesy self -motivation speech is just what you need.

Chins up,

H xx

Birthdays, Cake and Itching


So I went home for this weekend for one of my little brothers birthdays – he was 3 on sunday, and literally adorable! We had such a lovely weekend in the sun, and my other brother was home too which was really nice 🙂 had  a family filled weekend, and it was just what I needed! Ate way too much birthday cake, laughed pretty much the whole time and had a massive catch up with them all, just perfect!

 

Anyway I drove back to uni yesterday and had a pretty standard day in lectures; and went to trampolining in the evening from 8-10 which was such good fun!  I used to do it back at school, but haven’t done it in years so was so nice to be bouncing again! It was a bit scary and I need to re-learn some of the moves I used to be able to do, but HEY I can jump around, lift things all after eating whatever I wanted and why is that I hear you ask? Because I am still feeling so great health – crohns- wise. WOO.

 

On a slightly more sour health note woke up today and got a massive VERY itchy rash all over my arms and slightly onto my shoulders. Out of coincidence I was seeing the doctor today anyway and she said she thought it was just a reaction to something my skin didn’t like, but that if it persists or gets worse to get a blood test done as it could be a reaction to the Azthripaarine I am taking. As I type this I can feel the rash spreading, I cant focus on anything without itching – but I cant tell how much of that is just in my head. BLEUGH. any advice on relieving some of the scratch-factor would be greatly appreciated!

 

Hope you are all well

 

H x

I wish I could help you…


…my best friend is ill, really, quite ill.

It started a month or so ago and she got shaky hands, and just felt ill, heavy legs, dizzy and tired a lot. At first there were the usual hangover jokes, the being lazy, but then it became clear that she was ill. She went to the uni doctors last week and since then we have been to the hospital for blood tests, the doctors, more appointments, the works. She has been told it was several different things, only to start to come to terms with it and then be told it was something else entirely. She still doesn’t know – fingers crossed by the end of today she will know. As if that wasn’t bad enough –  She has a university trip coming up next week and isn’t sure if she can go.

 

Its weird – I know what shes going through. yes, a different pain, different circumstances, different person. But still, the hurt and the not knowing and my heart goes out to her, its horrible and I can only guess at what is to come. She supported me best as she could, and came to A and E with me and everything- and I will do everything and anything in my power to help her with whatever, and she knows it. But it is so hard to know what is coming and not be able to help or shield her. Or to be able to make her feel better..or anything. I have always been that ill person this last year, and its almost easier. You can be angry or upset or emotional and you just accept what is happening; but to be on the other side and see someone ill with literally nothing you can do is so hard. And you don’t have the..’excuse’… to be angry or upset because you have to be rational and supportive. I hope to god that it is something easy to sort, something that will be gone soon enough. Heres hoping.

 

On another illness note I am back to the doctors next Tuesday for blood test check ups and also I want some testing to be done on my heart, I keep getting a slight ache on the left side of my chest and when I was in hospital I had a very high pulse even at resting, something my dad calls “my hamster heart” (thanks, dad) and I want to get it all checked out; as well as ask a few more questions about my medication for my Crohnies.

So, a bit of an emotional rollercoaster at the moment, its hard to get the balance right between reassuring her and chatting about my own experiences with being patronising about having done it before. Everything is different for everyone and I want to find the right balance. I have a weekend at home to look forward to – for my brothers 3rd birthday, so it will be a nice break and a chance to see my fam-a-lam again, who I am really missing since being so close to them all over operation-gate at Christmas.

 

Sigh, life sure knows how to throw a curve ball.

H x