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

 

 

 

 

Looking down from above?

Hey,

I think I mention quite a lot my granddad in these posts, and how I miss him. He was larger than life, absolutely insane, supportive, crazy, funny and genuinely one of the nicest people I have ever known. I am so proud to have his blood running in my veins, and I just wish I could have had longer with him, he was taken far too young. I have hundreds of stories about him, and just thinking about him makes me cry – I can’t believe I will never hear his ridiculous accent again, or laugh with him, or even show him how far I have come in my life, and how far I know I have yet to go. And that makes me sad. But, that is life I guess, and he wouldn’t for a minute want sadness in my life because of his loss. I think of him a lot, and I miss him greatly. But, I also miss my granny – although I rarely talk of her, and sometimes I think I miss her less- which makes me feel awful just to write. This is because in her last years she was only ever in hospital, or the care home. She wasn’t herself, and maybe I already got used to her not being an active part of my life long before she passed. She placed a lot of strain on my mum and auntie, and everyone, in caring for her, and sometimes I was even angry at how little she seemed to be fighting. But, I loved her. Oh, so much. And I just found some old emails between us, and the tears are flowing! Maybe I don’t miss her so much because she stopped being herself some time before? But I sure as hell miss the granny she used to be to me. And I wish I could hear her laugh just one more time. So, this is a short, open letter to her. I hope that somehow, somewhere she knows that I love her and miss her dearly, and today of all days- this beautiful blue sunny day, I know she would have given anything to be out in the woods with the dogs today. So, this is for her:

 

I don’t know how to start this letter, or how its going to go. I am just going to talk to you, like I always used to. I am sorry about how things were for you over the last few years, I think you gave up on yourself, but I want you to know that none of us ever did. Even in your darkest time, there were still glimmers of you in there-  and that is what kept us all going. Your wit, laughter and love will never be forgotten. And we miss you, all of us. Mum and Ruth miss you more than you will ever know, and there is a DG shaped hole in all of our lives, and there will be forever more.

I was looking back at some emails, the ones we sent abo9ut the K99K and how you were saying I need to make sure I finish the walk and raise the money, and that it doesn’t matter how short my legs are, the main thing is I have feet to walk on. And your right, it doesn’t matter how long it takes me to do things, as long as I don’t stop trying. I know your not one for open sentiment, so maybe its a good thing you cant reply to this 😉 I used the money I got from your will to pay for my masters, I hope you would be proud of that. I am enjoying every day of it, (almost!) although im not sure what I will do afterwards. I wish I could tell you about all the new things I am learning, and talk to you about it, because those were some of my favourite conversations.

I got a new camera not too long ago, and I only just about remember to charge it up and use it sometimes, and only then for things like holiday snaps, nothing more. But every now and again I head to the woods, and walk and snap and think of the times we did that together. I remember when me and Els came over and did a “photo competition” in your garden, and that you were so involved and active and happy. I loved that house, and I wish you could have got yourself home to see all the work that they did on it for you, it would have been perfect for you. But its somebody elses home now. Puzzle and Herbert had to go live with someone else, mum was never a dog person and although we had them for ages, we couldn’t keep them, and I miss them so much. They always made me laugh. On the last day we had them me and Ben took them for a walk, and puzzle freaked out and stopped halfway through a stream so Ben had to carry her – they always could make a sad situation funny! Anyway, they went to a young couple who had had vallhunds before, and they live in the middle of the countryside and they sent us a photo at Xmas of them looking goofy, so I am sure they are happy.

I miss you, so much. I read over those emails which were maybe a mistake because I am now writing this instead of working, but I still read them and hear your voice in my head. I miss you so much, and they make me both laugh and cry at the same time. Thank you for being you, and for being in my life.

We all miss you down here, and we think of you often. I don’t know how to end this note, because its not even close to everything I would want to say to you. So as I sit here with tears on my face, just know they are at least half happy, to have known you and loved you. And that the thing I remember most are those days I came round and we just did things, just you and I. And that right now I can remember the sound of your laugh in my mind.

Love you forever,

H xx

😶

No title, no words, just a face! 

I want to give you guys an update after my relatively dramatic last post- but didn’t know what to say, or how to say it. So, Imma bullet point everything going on, rather than trying (and failing) to write a coherent post! 

-I’m so freaking tired its unreal. How can I do so little, and be tired so often? 

-I’m excited but nervous to see my new consultant next Wednesday – should be interesting! I forget how nerve racking it can be to see the new guy- especially because I think crohns is grumbling again. I need the loo more, I get tired more, I have tummy aches more – no good signs! 

-I am doing pretty well at uni so far, which is nice 🙂 I have been getting good grades though hit a bit of a block in terms of knowing what to do for my next essays and dissertation which is scary! I have spoken to my friend about moving out with her in around August, which should be fun – although it adds stress and pressure with finances to get a good enough job to support that while also getting my dissertation done! 

-having a bit of a confusing time with my mum- who’s taken the car back in protest of “bad behaviour” and arguing (as ridiculous as that sounds) but has had it for months, for no good reason. It’s causing tension and anger – which is ironic because apart fro that we are getting on better than ever! I don’t understand how she can be so nice and kind for some things ,but so cruel for others. For example, as you may know from my last post – dad and my step mum are seperating and she wouldn’t even let us use he car to help them move furniture, or to drive to go visit my own siblings. Which I just don’t understands, and then she’s so supportive in other Ways?!

-my injections never got delivered! Just to add to the fun I’m now behind on humira too. Yay. 

-my boyfriend is incredible. I love him so much, and that’s so cliche and embarassing but it’s true. He supports me and loves me through the madness that is my life, whilst somehow inspiring me to be a better and kinder person at the same time – how can one person be so incredible?! Although him being out and so successful and working and moving out does just highlight how crap I am doing at life at the moment – so that’s tricky. I’m ill, hormonal, insecure and a little crazy; and all of that makes it tricky. We keep arguing too, due to over stubbornness – but I still wouldn’t trade him for anything. He’s is my absolute rock, and I have to say all this mushy crap here because there’s no where else I can say it without annoying people 😉 at least here you guys can escape! 

-and finally, the seperation. Tonight is the first night the kids and my step mum will be in their new house, although dad wanted to be alone so I am at mum house anyway, but it still feels weird – especially with so mc stuff missing around dads house. I’m so sad it’s happening, I want my family to stay together not fall apart further! We went to center parcs this weekend with dad to give my step mum time to move out, and we had a really sweet weekend despite the emotional side of it all. It did unfortunately combine with period weekend- resulting I me crying over a cupcake! But that’s another story 😉 
I’m feeling a little dented and battered in, but I’m soldiering on 🙂 

Keep your head highs up 

Hx