A step towards a brighter future? Day 12, 2017

Okay, I know I missed two days, and they weren’t even a weekend- but they have been a bit of a rollercoaster, and I haven’t had my laptop with me and didn’t think that I could do them justice typing them out on my ever failing phone.

Today I went to therapy for the first time in years, maybe even a decade. I went when I was younger, but decided that the stresses and strains of my life currently are just a little too much to handle. I was so so nervous to go, and worried because it is expensive too, but I think for now it is an investment in myself that I deserve, and need, for a while at least. It was so nice to just talk, and have someone listen and not feel guilty for burdening them with my thoughts and stresses and worries, and I genuinely came out feeling a weight had been lifted- not because of any major breakthrough, but just being able to rant and talk and not feel like I am causing someone else stress because of it. And actually, when I listed everything that has happened to me in the last 18 months / 2 years, it really is a lot. And I really have done well to keep plodding on this far, and its no BLOODY WONDER that I am struggling now, I am carrying around a whole lot that I never give myself credit for.

 

So, today is a day of self appreciation I guess. She said something that made my insides smile, that I was a survivor, that I have done so well to plough on through everything I have; and you know what? SHES BLOODY RIGHT. So, well done me. Congratulations me. Hooray for H! Finally, I can see when I say it all outloud at once that yes, I bloody have done well to keep it together and keep going, and I am totally entitled to  need a bit of space to  let that all out. Now, I am not trying to elude to some big giant “issue” that has occurred, if you follow this blog you probably know most of what I mean, lots of little things added together, but there is more going on that is just a little too personal to write here, ( I know, shocker). I would write more about what was said, but I know that a few people who actually know me in the real world (HELLO FRIENDS) may read this, and that’s something that I want to be kept a bit more private, for now at least. There is no big dilemma, just the fact that I wanted some advice on how to cope with a few things, and coping strategies for when I cant. And its also so nice to be able to talk, and have someone listen, and just, free up your thoughts. I came out, got home and bawled for a while, and am now feeling like a tired and tearful zombie – but only because I haven’t said all that outloud at once before, and because I feel exposed and confused and sad, but also so free and relieved and happy, so I am excited. Now I just have to find a way to fund it!

 

One thing that was interesting, and maybe I should do a whole post on this tomorrow (or soon) is the way that Crohns came up, as something which causes stress in my life. I never really acknowledge to myself how scary crohns is. Because I know how debilitating it can be, and what a huge effect it can have on my life and on everyone around me – and that it can come back at any time, any day, for any length of time – and that level of uncertainty is very hard to deal with. And I didn’t realise quite how much it still impacted me, until she asked me more about it today. Normally I gloss over it, “oh I’m in remission now”, or “yes but I am just nervous about the doctors appointment” (which FYI I am, 25th January here I come…) but also ,maybe it does impact me more than I ever thought. hmm. something to ponder. Think maybe this is something that needs to be explored further on this blog, but not today. Too drained!

 

Be happy, Keep smiling, and Keep going!

H x

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

Guess who is baaaack?!

I am SO sorry for being so absentee recently, the longest I havent blogged in a long while!

The reason for this? So. much. work.

I have just been insanely busy – and no better excuse than that. I got the results of my colonoscopy, all good there (yay) and have since been back to the hospital for a general check up and discussion. I found out then that I was able to stop my humira (hells yesssss) because there was no sign of active crohns in me at the time. I have since done more bloods, had a few days of feeling ill but a lot of days of being happy – and been through a HUGE amount of university stress – nobody said a masters would be this hard 😉

So, adios…Humira. I have hated every single injection we have had together, and each time got myself into a panic and distress and generally tears followed. However, you did your job. In just a year it got rid of the signs of active crohns, and , admittedly made me feel so much better. So, thank you – you have been a worthy foe! 😉

 

Today I went through to get my administrative things sorted to start a volunteering job at one of the big heritage locations in London – exciting! I hope to start there soon – meet new people, get new skills, and build up my CV. I also have a job interview on Wednesday, but for something completely different! We will see how that goes! I think I just need to get myself out there, keep pushing and enjoying life whilst I can.

Apart from that, my boyfriend is fine, as are all my family. I am slowly coming to terms with the secondary divorce / “seperation”, although there are oh so MANY things I hate about it, but I guess that is life. My boyfriend has moved up to London, and settled in well – and is honestly one of the biggest blessings in my life. I pray hard that our future stays as bright together 🙂

 

So, nothing much of interest I am afraid, apart from an apology about the delay in posting, and a promisee to be me more consistent, and interesting, in the future!

H x

3 Things never to say to a Crohn’s sufferer

1. ” I know what you mean, I had the worst tummy ache last Friday. Just take a paracetmol”

No. No. No no no. No no. Just no. It is NOT a tummy ache. It is not a little cramp. It is a life changing disease which can massively impact every single aspect of your life. I understand, and appreciate, that your often trying to how empathy, but it just sounds patronising and makes it sound like how we are feeling is stupid, and we are being hypochondriacs. Please, just ask what you can do to help rather than telling.

 

2. “Just have a coke, that will buck you up. I only got 5 hours sleep last night and I’m going out, so you have no excuse!”

Being tired and having fatigue is very different. Whole worlds apart. What is difficult, to be honest, is that you can never feel what everyone else feeling, never compare one persons “tiredness” to another, but I can compare my own tiredness to my own fatigue, and let me tell you – months worth of sleep wouldn’t be enough.

 

3.  ” You look fine”

HELLS NO. I may look fine to you, but inside I am in so. much. pain. But inside my own body is fighting itself. People can have physical changes from crohns, others don’t – but that’s beside the point, we don’t need you, or anyone else, to make our illness seem less painful just because of what you think you see

 

That’s just a few. And I know they are cliché. And if you ever read anything about crohns, you will have heard them all before. I don’t mean to talk so much in the “me” the “you” and the “us” – we are not separate, we are not “us with crohns” and “you normal people”, but I didn’t know what other way to describe it. We are all the same, we are all people trying to get on with life.  I am sorry if I am unoriginal, maybe that is just my way of venting my frustrations, feeling annoyed at people not taking me seriously. Although, I am lucky that it doesn’t happen very often to me, I have good people fighting in my corner and that helps me a lot, but sometimes it annoys me. I told the nurses I want my next colonoscopy moved forward as close as possible, because I was worried and I am having weird cramps, and I am sure something is up – however their reply was disappointing. When I asked about tiredness, I was dismissed. Bleugh. I know what I am feeling, I just want to feel like someone can help me with it.

Fingers crossed, eh?

 

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

Very close to a tantrum

so. 

I have to quit my job tomorrow. And I know o show focus on the exciting masters that is in my future. And I know I should focus on all the opportunities . But all I can think about is how am I meant to have that awkward conversation? How am I meant to tell them then work my notice? Gulp. Help! 

My colonoscopy just got moved from Tuesday to the week after. I organised lifts, time off work, sorted the diet things. I want to cry. I don’t feel great (I don’t feel bad. I just don’t feel 100%) and I hate the procedure but had psyched myself up for it and planned my weekend accordingly and now it was for nothing! I want it to be done, I want to know the results, I want it to be over. 

I think the stress is contributing to me feeling ill? Or not great. I don’t want to use the word ill or say I’m feeling bad when I’m not really I guess. I’m just not good.

I have my next humira in Sunday and ta already making me feel a bit sick to just think of it. God I hate those things. I hate how childlike and fearful they make me. How j can’t control it!
It’s not fair. I feel scared and a little lonely taking this leap of faith. I wish I had just one thing that was a bit more secure in my life. (Sorry for the dramatic over indulgences of a spoilt child – of course I am lucky in so many ways but sometimes it is hard to see. Which makes me even angrier sometimes – why oh why do I find r so much harder than everyone else to focus on the good?!) 
I am shattered. As per. I spend my life being tired and worrying. I can’t even enjoy weekends because I’m ferrying round between home and my boyfriends and friends, not getting enough time to see any of them properly. 

Please let this period of indecision and change be over soon.

H x

through the video camera

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

H xx

8 ways to cope with some of the stresses of Crohns…

1. Cry  

Okay, technically this isn’t the best “coping” method, but it is something that I have done a lot. a lot. and it is something that I am sure most of us have done at times. It is probably a little depressing that it is the first thing that came to mind when I thought of this title, but it is a way to release some of the built up stress and emotion and theres nothing wrong with a little cry from time to time. Let it out, suck it up, move on. That’s the way forward.

2. Laugh

Literally the complete opposite to number 1, I know. But that’s good – you have to be able to laugh at both yourself and the situation you are in sometimes, because you have to remember; it wasn’t your fault! This disease isn’t something that is self inflicted, but something that you are unlucky enough to get. So, just try to smile through the times that are happy or funny or ridiculous, because you need that laughter in your life!

3. Surround yourself with friends and family who will stick by you through all the shit times

(Get it,…little crohns toilet humour there, I know, hilarious) But its so true- sometimes the only thing that used to get me through my bad days was knowing that there were people around me who cared, who I could whine to and cry to and who would put up with it all, get me a chocolate and send me back on my way. They are there for all th bad times and the hard times, but remember to share the good with them too. Don’t try to hide your pain or act normal if you aren’t feeling it, be honest with them and they will be able to help you all the more for it

4. Research and understand as much as you can

This will men that you understand things when the doctors are talking to you, and you can ask things of your own from research you have looked at online, or get peace of mind about some of the things you have been reading. It means that when eople (who I am sure are trying to be helpful) come up to you offering some ridiculous theory about how you could cure your crohns by simply eating something like a grapefruit a week, then you can tell them politely that they are wrong and you don’t panic yourself. It means you understand this disease and what it can do to you. It means you will understand what symptoms to look for. It means you can know what is happening to your body and ways to minimise the change. Ie means you are in control as you can be. So, do that homework.

5. Forget most of what you read in number 4

That sounds crazy, I know. But its true – most of what you will read will be horror stories, scare stories and these things can only add to the panic and paranoia you feel. Try to read it, understand it but then forget it, or put it to one side at least. Don’t let the internet scare you – remember if you have any big questions the doctors are always there for you.

6. Find a support group

This is one that I personally haven’t got around to in terms of joining a physical meeting group – so please don’t think I am too hypocritical, but it is something I would recommend if you can. I am struggling in terms of lack of access to transport, and alos timings and money to get there!Instead I am currently a member of the facebook group #Getyourbellyout and I recommend it – I have ever posted, but just seeing the community there for support and knowing I have the ability to write things there and get support and advice from others in a similar situation is enough for now. Also, I couldn’t count the number of times people have asked questions I have been thinking of, and its so reassuring! So, join something. Talk to people.

7. Get a diary

You need to be organised to fight this disease. You will have doctors appointments, blood tests, organising presscriptions, hospital appointments, follow ups, etc. You need to be on top of all of these and be sure to attend them all and get every check done necessary. Give yourself and your body the best chance.

8. Find some self confidence and keep a tight hold on it

You need to believe that you can beat this disease. You need to not let it get you down. You need to do all the above steps, and anything else that helps you to keep your e head up and keep above the water. This disease can be beaten and you can stop it controlling your life, just control it first. Keep belief that you can get through it even when you are in your darkest days.

Why does life hit you all at once?

Maybe I am being dramatic, some people will say I am being an attention seeker, but as of 9am this morning when I found out my exam dates these are some of the things on my to do list, and I am stressing the hell out:

-finish coursework
-send all coursework recorded delivery to university by deadline, that I know arent as good as they could be because I haven’t done the module in 9 months, thanks Crohns.
-2 exams in the next week, no revision done for either as only told dates today
-find out what is in the exam due to be 9 months ago but not, thanks Crohns
-revise for exams whilst trying not to panic
-find out if still covered on Dads medical insurance since my stomach is really making me paranoid, thanks Crohns
– try to book to see doctors all of which are refusing to answer their phones
-try and get my prescription sorted because I need it to stay healthy or else I could crash and burn like last time; which is harder than it sounds because of re-registering to different doctors, and receptionists who refuse to listen to what I am trying to tell them, thanks Crohns
– Book colonoscopies, blood tests and a test to check my Vit D level because I haven’t had them in months as there is no co-ordination between the doctors I am seeing.

THANKS CROHNS.

Feel like my whole life is out of control, I cant keep everything together. And all of it seems to be rooted in Crohns, I hate this thing so much sometimes I cant do anything but cry in frustration. WHY.

Its such a dramatic post I know, but some of you will be able to relate to the bursts of anger you get at how unfair all of this is, as well as the illness itself there is all the admin and organisation and burden that comes with it and sometimes it feels impossible.

I will climb this mountain, I know I will. I have no choice. But right now, sitting at base camp at the bottom of the climb it feels a little bit impossible.

H x

#getyourbellyout

I know I have posted about this already, but just wanted you to know – I did it. I made the jump. I posted this on my social media sites – facebook and instagram are now up to date 😉 it was a big decision for me to put it onto facebook, now everybody knows. I don’t want judgements, or pity; I don’t want sympathy or revulsion – I just want to spread awareness. I don’t expect any big revolution to come from it, I know all that will happen is a few likes or comments. But to me, its one of the biggest steps I have taken. Its out there now, lets embrace it.

H x

PS – it has already got a comment from a girl I used to be in halls with saying how she suffers from IBD too, and that thank you for pointing it out and how she never knew etc, I guess there are people everywhere going through the same thing, but we just need to put it out there loud and proud until everyone does it. I always felt so isolated embarrassed and alone – but seeing all these other people gave me the push to do it. I hope that I can push others too as well !