3 ways I have succeeded despite Crohns…


  1. I am doing my masters.

This is something I didn’t think would be possible through the mid-point of my second year at Undergraduate. I couldn’t walk, I couldn’t eat, I couldn’t function on my own and totally relied on my friends to support me.  I was a walking, talking crohns-monster, and I am so thankful that through a combination of medication, operations, and love and support from my family and friends, that I have been able to emerge out the other side all the stronger for it. I am working hard, yes I am only in uni 3 days a week, but more because I can’t afford the train tickets than anything else! Yes, I am napping most days when I can. Yes, I am PILING on the weight because I am snacking more than ever just to get energy. Yes, I cry and feel defeated when it all gets too much, BUT it isn’t stopping me. I cant wait to hand in my dissertation, to crack on with the job hunt, and to walk down the dissertation aisle for the second time, head held high with my family around me, just to prove that I could. Coz Crohns ain’t stopping me.

 

2. I have a long-term boyfriend, and am managing semi-successfully

I know that doesn’t seem like it has anything to do with crohns for some of you, but that, probably, is because you don’t quite understand how it affects every single aspect of my life.  It affects my self esteem a lot, I think more than I realised. I don’t think I am good enough for him, I think he can do better, I get scared he will be bored of my medicine, and fatigue and general bad-days. I get worried he will get sick of my moaning. I fear he will out-grow me, and move onto someone less broken. But, so far, he hasn’t. And I pray to every god, or shooting star or lucky coin that he won’t, because as of right now he keeps me motivated and happy, and I couldn’t imagine my life without him. Thank you for being my best friend, my rock and my saviour 🙂

 

3. I am living a normal, ish, life

I have had quite a lot of stress in my life recently – my dad and stepmum split up, my boyfriend is moving out of his home into a new one, and I have realised my career prospects sseem pretty much 0. And yes, I have cried, and panicked, and hidden under the duvet to escape reality. But I made it out, I pulled the covers back and I am going on. I see my friends, I see my boyfriend, I see my family, I do my work, I plan events, I do everything I want to do (almost!). There are many things holding me back right now – job availability, money, etc, but my illness isn’t one of them. HELLS NO. On a trip with uni this weekend I told 2 people on my course about crohns – the first ones at this uni to know; and that had had no idea! And THAT is super exciting!

 

 

Maybe these things don’t sound like much, and maybe they aren’t. I hope this post wasn’t too self-indulgent. Maybe it is a way to boost my spirits before my impending colonscopy – number 4 at aged just 22, blooooody fantastic. Either way, everyone deserves a little self-congratulation once in a while. So, make sure you give yourself a pat on the back for all the good, and let the bad slide every now and again, cut yourself a break.

 

Be happy, be positive and keep fighting onwards,

H x

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Mixed Feelings today


Hey all,

I just thought I had better post, because its been a while since I have and I don’t want to get back out of the habit!

Today is a weird one (so strap in ready for a rollercoaster!).. its a mix of being satisfied, happy, miserable, lonesome, proud, determined, dis-heartened and loved. Not even sure if that’s possible, but there we go.

At the start of this week I felt sh*t, basically. I have this ear infection thing (not in my ear, but a cut under my ear which has now grown and got infected, and just can’t heal due to my immune system being weaker than a limp dandelion) and its been getting more sore, I had blood test results back with increased inflammation, I had a rash all over my chest and tummy and also..I was just so sad. For no reason. I have been struggling a lot lately with it and I don’t understand why. Anywaay, I don’t want to write too much about it because I can feel it making me sad again already- and this is NOT the aim of this post! So, I trundled off back to my third home, ie the doctors, and saw my favourite guy again who is so lovely and understanding! Anyway, the rash is just the after effects of being ill (apparently, although it still hasn’t gone) and I got some more tablets and a cream for my ear, and discussed the blood results and moving specialists for my crohns. I also then sucked it up and asked him about if there was potential for psychologists, and finding someone to talk to.  (you wouldn’t believe how many times I just typed that sentence and deleted it – I feel like I am going to be judged already, but whats the point in having this personal blog if I lie in it?!). A few members of my family have / had depression, and we talked about this and some other things such as trying to control my emotions better, and its something I have been working on but am definitely not there yet- and I want to get help to get there.  I think I just need help making myself happy, I rely too much on my boyfriend, friends and family, that I can be so happy when I am with them, but as soon as they leave its like the light leaves with them, and I get stuck in this shitty space on my own that I just can’t drag myself out of. Its too tricky to try to explain, so I won’t attempt it any more. But anyway ,I got a number to call and sort things out, and although I haven’t called it yet, its reassuring just to know I can – and I will, when I get more time!

 

So, a bit of a poo start to the week. And I am UBER stressed- so many essays to crack on with , notes to write, readings to do, presentations to make, projects to crack on with. But, that’s okay. I would prefer to be busy and doing things than not, so I have made an extra effort this week to plan lots of things and crack on with being busy. It is bith my parents birthdays this weekend and I still have to buy them presents – which is a little stressful too! Argh! But, I am sat here essay writing, and stressing, sat in bed (its my day off from uni) with the kitty on my feet and feeling…fine. Which in itself feels amazin, just to feel fine!

Anyway, below is a picture from Mount Vesuvious, which I climbed with my friends a few years ago – climbed may be a strong word, theres a path you walk up hah! But, I was in the middle of a flare, I had been sick the week before on my archaeology dig and fought through it. I was being sick in the toilets in the middle of the day, sweating it out and then carrying on digging all whilst being unable to stand straight at some times. I was with my friends though, doing what I loved, and that was okay. (this was all just a few months before my operation, though I didn’t know it at the time!). I climbed a VOLCANO. On a flare. I teared up a bit at the top, I had to stop a lot of times to double over, but I did it. So, a measly little essay and some school work should be fine, lets smash this (Y)

 

 

Side note – I would have used brackets but  think I used them too much this post, is there even such a thing?!) When I was flicking through my photos to find these ones, I saw this photo of a view from a harbour we walked along. What is interesting about this photo, and this view? I took it after literally being unable to walk anymore. We had walked along this harbour, and I could feel my stomach going, cramping, hurting. We were meant to be walking to a castle/ fort thing (which we did eventually get to!) but I literally couldn’t go on anymore, I was tearing up it hurt so much and was walking like the Hunchback of Notre Dame! My friends were the best, and we sat down for an ice cream / drink / crohns break for a while, but I remember a pure moment of desperation in that time, that I was letting them down, holding them back, stopping them enjoying it, that I just couldn’t get up and carry on. But, you know what? I Did. And that day was such a good day, and those times were such happy times.

 

Here is to many more times of feeling shit, overcoming desperation and getting on with the brilliant things that life may bring!

positive thoughts to you all  (and sorry this was so long!)

H x

An inspiration of mine


Okay, so plaster on those happy faces, stick those smiles on tight, fasten your metaphorical seatbelts and here we go.

I have SO much to tell you but before I get onto all my not-exciting general-nonsense-ness of my life; let me tell you the story I mentioned in my last post, the happy one. I am still feeling a little grumpy to be honest, and more than a little foreboding at this coming weekend (long story!) but that’s maybe even more reason than any to focus on the happy!

So, unfortunately this happy story, (well maybe happy is the wrong word, proud? inspirational? im not sure!) starts sad. So some of you who have been following my story for a few months (thank you, you crazy few!) may remember I lost two of my grandparents this last summer, both my mums parents passed away within a few weeks of each other. It was horrible, and one of the most heart wrenching times of my life. Am not going to say anymore on that now, else I will blubber away – already a bit teary eyed!- but that’s the starting point of this story.

Before my Granny passed away she had mobility issues. She was very overweight, and therefore struggled to get around; and as she got more ill then her muscles got weaker etc and it was a vicious cycle. We had to come to the devastating realisation she would never walk again, even though she spent months in hospital rehab centres coming oh so close! But anyway, my mum and auntie invested a lot of time and money in converting her whole bungalow to be wheel chair friendly, and also buying things such as scooters that could go offroad, (so she could walk her dogs) and a lift thing to get the scooter into the back of a van without having to drive up a ramp (she was not trusted to do this!)

Anyway, we obviously don’t need these things anymore, and most of her things have been given to charity to help others who may be in a similar situation, but we still had this one scooter. I am not sure why this one had such an emotional attachment to it, but it did. And nobody could quite bear to part with it.  This, in essence, is the story of what they did with that chair, and why I am so proud of them. (Bear with me, it isn’t as dull as it sounds!)

When she was alive my granny used to spend long hours at this vets, with her multiple dogs but also talking to the vets and nurses, all of whom liked her, respected her, talked to her, joked with her, told her off and cared about her. She was overweight, scruffy and a little bit crazy but not once did they treat her like she was worth any less because of it, not once did they make her feel anything less than welcome, and I am grateful to them for that.  So when my mum went down there the other week with the cats and realised something was different, she got involved (typical mum!). One of the nurses basically had got very ill, nearly died, been revived etc and had ended up losing all use of her legs due to infection, I’m not sure if they were amputated or if she just can’t use them. Anyway, she had recovered from all of this, was in a wheelchair and back at work, trying to move on with her life.

 

So, my mum and auntie decided to give her this chair. It specially adjusted to carry extra weight so she can carry things with her, and is off-roading meaning she will still be able to walk her dogs when she wants to. I know it may not sound like much, but this was an expensive scooter and something the nurse currently couldn’t afford, and was something that could so easily change her life. They also bought it down to her, helped her adjust it and show her how to drive it, and promised they would come down again if she ever needed any more help – infact she is going down again on Friday to just see how she is getting on and help her drive it in the car park to feel confident.  Not only that, but they also gave her the lift which gets the scooter into vans, and my mums boyfriend fixed the scooter up , changed the battery and gave it a mini MOT for free to ensure it was safe for her.  They also said, if this doesnt suit you, or you don’t like it, dont keep it. Don’t feel oblige to give it back or to charity; sell it and use the money for yourself and whatever makes you happy and helps you in your life. And all of this not for gratitude , thanks, or praise but just to help someone who needed it. I can’t think of anyone my granny would rather it to  have gone to, than for someone to walk their dogs and live their life to the full, doing what they, and she, loved.

It may not sound like a big thing, but it was for them, and I am incredibly proud of them.  I am SO SO sorry for such a long post, and congrats to any brave stragglers still reading this far – but I just wanted a bit of happy, and a bit of awe in this blog because sometimes I think its gets too focussed on me and my little bubble of boredom, but I wanted to remember, and to remind you – that ordinary people can do amazing things and change someones life.

 

So, chin up, think of something you can do today to help one other person around you, even in a small way.

Be happy and I will blog again soon (a lot shorter! – anyone here DEFS deserves a bourbon and a stiff drink!)

H x

What if I am just writing in circles?


What if I run out of things to say? I am worried my thoughts are all the same, mundane worries and fears, stupid self conscious and self deprivating thoughts as well as general despair about my future! Alongside obviously the ridiculous laughing fits, the happy photos, the loving cuddles – but these are things that maybe don’t come across so well in this blog. I am worried  about posting too much of the same, of being mundane, of being boring. I was so sure at the start of this that crohns would take over my life, and I would constantly have these horror stories to post and this would be my only place to vent truly – and sometimes it is – but crohns hasn’t changed me in the way I thought it would.

it has changed me, lets not beat around the bush here, it has. And I don’t like all those changes, and some days I hate them and resent them. But other days I accept them, and even am kind of proud of them. I hate the fact that I still cannot cope with my injections, that last night my boyfriend was out signing a new flat which he can  in with his friends, being sociable, being an adult, doing what I want to do – and where was I? Crying in bed having just done another humira injection, and trying not to be sick with the headache and shakes that it bought on. How is that fair?? I hate that it makes me feel so different sometimes. I hate that it made me bitter and kind of jealous of my boyfriend, in stead of being happy and celebrating for him, I hate that I only see the negatives sometimes, the fact that our lives will get more different and all I see is the negatives in my situation- I hate that it makes me feel those things – but maybe they were already n me, and this is just my way of rationalising it? But then, I am proud of myself for being a normal (ish!) person – for having to inject myself but not letting that stop me, not letting this disease control what I do. Infact just yesterday I got a letter saying that my most recent biopsies form the colonscopy came back clear WAHOOO. Helps to lighten the grump I was in about having to go get a flu jab this afternoon..i still hate needles!

I find that weird actually (side note) that doing my injections is getting harder. I thought I would be used to it, get less psyched out, be more able and ready to cope. And I am not, I am worse. I psych myself out more, I know the pain doesn’t get bearable, I know that pushing that button is going to inflict pain and in that moment the fact it is helping me be better doesn’t even reach my consciousness, no matter how man ytimes my mum says it! All I know is that when I push that button it is going to hurt, and I will hate it. Sometimes I do my count down and swear I move my thumb but it just refuses on its own! But that a whole other blog post 😉

Anyway, I am not really sure what the whole aim of this was, it was pretty rambling and more than a little confused, and I am sorry! It is an honest insight into the mses which is my head right now – enjoy 😉 I hope to keep posting regurlarly, and that means not making something more dramatic or ridiculous than it is, if my life is pretty quiet then so will my posts!

Hope you are all happy,

H x

First solo injection done…(Y)


so on Sunday was my first time doing my injections without the nurse..scary indeed! My dad got it out of the fridge for me and then he held my hands whilst I actually injected it. I panicked a little  not going to lie – and I’m only 90 certain I held it in for the full tome, but I’m proud of myself for doing it and for pushing through the fear; hopefully fr here on I it will only get easier! 

Got s few job interviews lined up this week, as well as going to see my boyfriend before he goes to America for a while – gonna feel a little lost without him and nothing to fill my days! So heads up for a lot of blog posts coming your way 😉 

Our cat of 19 years unfortunately passed away a few weeks ago , and I miss her so much- the house is so empty! But this evening we are off to visit some kittens, which is exciting 🙂 
Hope you are all well,

H xx

Humira loading dose done


so today I have had a massive hospital calling stress, an exam and my first 4 humira injections. Please just let it be over!  Think the exam went well, which is good because I really needed it too! The humira…haven’t been so scared in a long time. Had 4 injections as my loading dose, bless two of my housemates who were on call for hand holding and general questioning and support! Surprised by quite how much the injections hurt, seriously quite painful and me gasp out loud in shock and pain- but they are done, finally. I’m on the road I hope. God, it hurt. It really did, but at least it’s over quick! Haven’t had too many side effects at the moment, fingers crossed it doesn’t change!  Onwards and upwards  H xx

#getyourbellyout


#getyourbellyoutfinal

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 !