Fom sad to happy all in one call


CHEESE ALERT RIGHT HERE

I am way too quick to blog when I am sad, but this has to be the biggest shoutout to my favourite person, my boyfriend is incredible. I know like  90% of people will have just stopped reading, and to those of you powering on – thank you. (Side note: does it count as a shoutout when you are anonymous, you don’t mention any names and you have no intention of telling said person you wrote about them? Perhaps not…but you all get the gist 😉 )

 

Today is sunday, and I had a fab time with my family yesterday but was feeling the guilt for not working. So the plan was to get up and go to Santas grotto with the kids (my half brother and sister aged 8 and 4) then go for lunch together before coming home for the afternoon and I had planned to work. It is now 1pm and my stepmum earlier decided to go out shopping with my sister, and they have just not come back. It now means we aren’t going out for lunch because we have no time, I wont be able to see the kids meet santa because I have to work this afternoon, I feel like I wasted my morning and my work is going sh*t so I was having a bit of a feel sorry for myself. I had a little text-y moan to my boyfriend, sulked up back to my laptop and proceeded to eat a large handful of chocolate maltester things (which although delicious I now feel guilty for, considering I am more representing a whole pod of whales than a single human being at the moment. FML)

Anyway, we all have those times, but I think I let them get to  me more. I over think things, I feel sad, I feel tired, I let it all get on top of me. I  forget to think about the good and how lucky I am, and instead feel sad for no reason and then spiral – many a good day have I ruined in such a way. Anyway, I sent my boyfriend a snapchat of me eating the maltester things- since he had bought them for me last week or so; and he called me. He called me just to say he loved me. Just to say keep going with the work, just to say he missed me. And I of course promptly burst into tears – great work me. I honestly don’t deserve him. We are having a weekend away to have some space, so I can work and see family and so he can relax with his too – and its weird and I am not sure I like it, but at the same time I am enjoying it – but what I mean is, I am not his problem this weekend, he has no obligation (aside from being my boyfriend haha) to be looking after me, and yet he still is. He is fantastic and lovely and kind and sweet and I don’t know what I would do without him.

I realise this is one of the worst-written most cliché posts I have done (or if there are others worse than this, apologies!) but I had to type it, I had to say it, I want to shout it from the rooftops. I feel happy, pushed back up, lucky and determined. I think having so many shit days with my illness, I am used to just crying to myself, putting on a smile and faking being okay for so long; and now I have someone that I don’t have to fake it with, and who doesn’t care that I screw up probably more than I get it right, and that, THAT is something incredible.

 

On a side note – its 2 years today since I ended up in an ambulance and en route to A and E for 12 hours, how time has changed. Feeling so grateful that I have come so far from there, and so hopeful things never go back. Also a memory of my best friend from uni, who took perfect care of me, called the emergency services, helped me get dressed, held my hand, stayed with me, everything. I really am lucky. Friday 13th of 2013 was a bad day for me indeed, but Sunday 13th of 2015 is a day of reflection and of trying to be more grateful for everything I have.

H x

Thank you, I needed this one


Hi all,

A bit more of a positive post today, albeit a random one.
As you may remember I had 4 days off work last week due to having a throat infection, and being on humira and trying to sort out hospital appointments and blood tests etc. Nothing funn! Anyway, back at work now and I had to have a meeting with my manager yesterday, which I was clearly very nervous about – having spent 50% of my employment on leave for graduation or sick…and I was half expecting them to say that if it happened again (or there were too many doctors appointments) they would just have to give in, because im only on a 6 month contract, they don’t know me that well yet, and you know…its a big hassle for them to cover and deal with someone who is unpredictably so ill. But , my manager was so fantastic. He took me into a meeting room and basically asked me what had happened last week, and asked me what was crohns, and humira, and how long am I on it, and what are the symptoms, and how does it affect me, and what do I think for the future, and …so many questions. But I am happy to talk about it, I am happy to be open and honest about it – saying how it hasn’t affected me like that for so long, saying how this is a side effect of the drug not my disease.

I understand I put / am putting him in a tricky situation, and so he deserves my honesty and to answer any questions he has as honestly and truthfully as I can. I explained everything, I said how I would need a few hours every now and again for bloods or doctors meetings, and that to be honest that illness could happen again where I would need a few days off. And then I sat. And waited.  Then he spoke. He said that they understand it must be a difficult time for me too (and that is important to me to, its not just about work, its nice to be acknowledged as a person) he said that he would try and support me as much as possible. I really appreciate him trying to understand it, which made me feel he was taking it seriously. They said it will only become a real issue for work if that began happening really regurlarly, or if I wasn’t doing my best to manage my condition – for example if the doctor said alcohol makes it worse and I was binge drinking every week…but that makes total sense to me. He said if something else like that happened there is the chance I could work from home for a few days to sort it out, he asked that I keep him in the loop with the doctors in terms of updating him and making sure he understands the situation as it is. It really meant a lot to me that they were going to do their best to support me, as much as they can, YAY

Now I know this post is already super long and boring, but there are two more small things I wanted to write about.

1) I am getting fat. How depressing. I think that it could be linked to the medicine, but that could be an excuse. I need to eat less, go on a diet. and I AM trying, but I am constantly hungry! I don’t feel like I am getting all the nutrients I need – I just don’t feel full or satisfied.  Anyone else?!

2) I know this blog can feel a little boring, long blocks of text and limited pictures and never any of me. Well, there is a reason for that – I am not just lazy!  for a reason I don’t want to be definitively linked to this blog, which is why it is anonomous. I don’t want to be judged on what I write, or feel like I have to edit what I say. I don’t want people to know about my inner thoughts and struggles before they know me. I want this to be private, until I choose to share it. So, apologies if it is a little bland or “impersonal” compared to other selfie-filled blogs. But please, stick with me. It doesn’t make it any less raw or truthful, not to me anyway. Hope you understand

H x

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.

Get it out…..your belly I mean…


#GYBO

I am sure a lot of you might have seen or heard of this campaign – especially if you are a fellow sufferer. And I know I have mentioned it before, but just thought I would drop another quick line about it. (sorry, second post of the day – promise this one will be short 😉   ) I have joined the facebook group, along with about 2500 others who are either affected or live with those affected or the like. I am yet to post on the wall, for several reasons; but every day try to keep roughly up to date with the stories, comments, jokes, pictures, videos and sometimes cries for help or advice that are appearing there every day.

As such a large group there are of course troubles, there are sometimes little virtual skirmishes when people leave or have disagreeing views – but this is only to be expected, in the real world if you put 2500 people in a room and asked them to discuss a topic so close to their heart there would always be disagreements! I like this group, because it gives a (hopefully) safe place for people to vent, chat, meet and support each other who are all going through similar hardships. I like the fact that all the grisly details are mentioned and nobody bats an eyelid, we have all been there. I like the fact that people meet and go and support each other. I like the fact that people talk about totally unrelated topics – there is a lot more to each of us than simply being a sufferer.

If you are suffering from Crohns, IBD, or UC it might be an idea to check it out (:

H x

Thats what friends are for!


friendship

So, as you may have noticed I have been going through a rough time these past few months – it has not been a summer of fun! In fairness that is a sweeping statement, there have been days or weeks of fun with my friends and family; such as a 3 week stint in Montreal with 3 of my best friends, and then a 4 day stint to New York for 4th of July, and not forgetting my 21st birthday, and my French friend turning up as a surprise, and those days of shopping and laughing; and much more.

But over summer I have had to complete 4 large pieces of coursework, resit 2 exams all because of missing the deadlines due to being in hospital recovering from a Crohns-related operation. I have had to accept  being behind on my dissertation already. I lost two grandparents in 10 weeks, and have had a few minor  symptoms which are making me paranoid about Crohns returning.

In summary it has been a summer of both extreme highs and lows – maybe they work to counteracting each other?

The point of this post was yesterday after spending the day with one of my oldest and bestest friends (so far we have racked up 11 years of friendship, which is over half of our lifetime!) I realised that no matter how bad things get in my life, I will always have people around me to make me smile and laugh – and that is what life is about. Life goes on, people move on, we have to keep strong and keep moving and these are the people around me who will always help me to do that.  In return she knows that I will always be only a phone call away.

This post is kind of pointless I guess – but I want to get back in to the habit of posting because I have been a little lazy recently.  Just an update and a happy thought – keep friends and family close because they are the ones that will always be there for you and pick you up when you think you don’t have enough strength left to do it yourself!

H x