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.