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

just keep swimming…just keep swimming…


  I highly doubt that it is only me that feels this way, in fact I have heard others express these feelings before – but maybe it does everybody good to know that others get stuck in this rut too? The one where you feel like you FINALLY have got things starting to move forward before one day, or one person, one word or one action, one thing or one look throws you back to square one and you just want to cry. I don’t understand how life can be this complicated! It is one thing to try to keep your chin up, to be positive, to wait for a better tomorrow – but sometimes it seems like I am stuck at not just a crossroads but a spiders web of paths none of which seem right but all of which seem just that little bit appealing. I don’t know which to take, which will make me and others happiest and lead to an end with the least regrets and the most giggles. How do you know? And how, when you start walking down one do you stop yourself from panicking and backtracking? Because that is what I keep doing, trying and trying and getting too scared and coming back to this madness point and I don’t understand how to choose. I have always been indecisive, but a new level of confusion is something else.

 

Depressing posts these last few times – not fun, eh! Apologies. Crohnies is alright at the moment, haven’t taken my tablets yet today since it is all still packed up from the move home after university, but going to have to dig them out tonight! I am still so scared for Friday the 13th (see the last post!) so we can see how that turns out. I think I just feel like I am juggling too many flaming knives, and that each time I have a near miss I come a little bit closer to being burned even worse. HOW DRAMATIC AM I. Apologies for the doom and gloom, I shall give myself a slap on the hand for wallowing, grab a bar of choc and head to the sun for some Vitamin D and to get over myself and move on. Or try to.

 

Enjoy the picture below – makes me smile!

 

H x

 

Image (Here’s Hoping. H x)

Up, Up and Awaaaaaaaaaaay :)


so excited

This is me right now 😀
(Actually that’s a lie..me right now is sat in leggings, a baggy top and a hoody in my room at my desk, procrastinating doing one of the many essays piling up infront of me…but you know what I mean 😛 )

I am having such a good, CROHNS FREE time at the moment, and I just cant get enough of it! I have been on my easter holidays back at home for about 10 days now (time flies!!) and have been having such a nice time 🙂 I have been working quite a lot on university work, which isn’t fun; but balancing out with plenty of other activities! I have been working quite a lot for my mum and auntie – who own their own business – because my mum hasn’t been well recently; and although the extra shifts were unplanned for and therefore impeding on my uni work time, they have given me the perfect opportunity to earn that little bit extra money, just what I needed! Aside from that I have been seeing a lot of my friends, we played some tennis and badminton, chatting, a cheeky McDonalds McFlurry run here and there!
This weekend I went into London with a few friends and we went on the Shoreditch pub crawl – which was hilarious and such a nice fun night out 🙂 We then stayed at his flat in London – which was gorrrrgeous! Although I ended up with literally the worlds biggest blisters on my feet, had to limp home and get mum to pop them for me (gross I know). Next week I am going away with my dad, stepmum, brother and half brother and sister for a week down on the south coast- which I am really looking forward to 🙂 Unfortunately taking work with me but there we go!

I am sorry that I have nothing that much of interest to share with you – no dramatic stories, no horrible tales; but I hope that for some of you who have been reading for a while, it will be nice to know that there is no more of that at the moment! As of right now, I am just revelling in my freedom and my ability to do what I want Crohns free! I worry about this blog -about boring people, about writing too much or too litte, about posting too often…but I am just going with what feels right- I still CANT BELIEVE how many of you out there read these warbles, and it truly warms my heart! Thank you, thank you, and thank you a few times more. You will never know how lovely it is 🙂

H x

DSA?


https://www.gov.uk/disabled-students-allowances-dsas/how-to-claim

 

Just been browsing around online and found that potentially I will be able to qualify for some DSA money  -its weird, I never considered myself eligible for a disability allowance. It kind of saddens me and brings home to me that just because I am feeling fine now, that fight is never over. Its a big burden to carry.

But, at least it is recognised. It has some (not many, not a lot, but some) support systems in place which is definitely reassuring. I wish I didn’t have to worry, I wish I knew that it was gone, I had my horrible lot but it is over – but its not and sometimes I forget that. I was told emphatically by my surgeon and doctor that diet will now have little effect on me, it is just a waiting game; touch wood all is going okay; but it is easy in these lull times when I feel fine to become blasé about my tablets. I am trying so hard not to though, so very hard – because I know they are pretty much the only thing that I can do help to reinforce this rest period between now and my next crohns attack; which if I have anything to do with it wont be for  a great number of years to come.

 

Mixed feelings in terms of this post content. Just remembered quite what I am fighting against, although all the past pain seems a bit surreal at the moment. My mum once said to me that she forgot the pain of childbirth until she was in labour again with my brother ,and that its probably part of human instinct to supress the pain and blur it in our memory – and I think I have something similar. I remember exactly that I was in agony and so upset, I remember being stuck throwing up by my loo, I remember crying and calling my parenst from uni, I remember being unable to walk around, I remember doubling over with agonising cramps – but I don’t really remember the pain. I just remember that I must have been in a lot of it. I hope that it stays that way, and that it is not for a long time I feel the cruel clutches of Crohns back at me again, for it will be a sad day indeed for me!

 

I know, pretty deep thoughts coming from me, eh?

 

Hope your all having a cheerier evening wherever you are, chin up!

 

H x

A week from Hell…and it goes on


Friday before Christmas? Means family, food and festivities right?
Not for me. I am going in for 7.30 in the morning for my operation. Terrified? YES. more than I thought possible

On Tuesday I had my meeting with my consultant who decided that the best thing to do was to have the operation ASAP, and although I was given the choice between this week and immediately after Christmas I was persuaded to go ahead this week – because I didn’t want it hanging over me for Christmas, and that I would be eating only a liquid diet anyway, so that would ruin a lot of the Christmas joy! But, it means that theres a high chance im going to be in over Christmas. in a hospital, in pain, on medicine, etc. I am beyond gutted, and although I am going to do everything I am physically able to, to come out to be with my family – I have to accept theres a good chance it wont happen, and that is so miserable for me, so miserable. Christmas is my favourite time of the year, but no, Crohns took that too! My family and friends have been as supportive as they possibly could be, and even if I am in hospital I wont spend all of Christmas day alone, but it doesn’t make the prospect much less appealing.

So, Wednesday I went back to Oxford (where I am going to have the surgery) and had all my pre-operation assessments. The nurses were amazing in giving me so much information, and taking the time to look after me etc, I saw the nurse a doctor a stoma nurse and more – it was really helpful and reassuring that they would take that time. The amount of information was brilliant, however it was also scary ; it meant that I knew everything that was happening, all of the terrifying tubes and instruments im going to be strung up to…and the potential of having a stoma when I wake up. It would only be temporary, for about 3 months, but that is probably my biggest fear right now.

I am sat here typing this feeling pretty much normal, aside from the growing hunger! I am waiting to go in for an operation at 9.30 tomorrow morning, and although I am trying to stay calm and ignore it the panic is slowly growing…EUGHHH. I haven’t eaten properly since the trip to A and E on Friday, had about half a bread roll a day, if that. Anyway since tueday he said liquid diet only, that’s just soup. BORING. Aside from that my appetite has now refurned fully, I am starvinggg! But as of today I cant eat anything and can only drink clear liquids, and all I have had today is 3 small jellies. SO HUNGRY.

I am trying to remain calm and to accept that it is going to happen, whether I spend the time crying and moaning and shaking, or if I sit here calmly and blog. So I am kind of going for a mixture, trying to ignore it and stay calm, whist shaking and panicking alongside that! I have had continuous phone calls and support from my family, and it makes me grateful. It has all happened so fast, too fast, never enough to get my head around.

I will keep you up to date as I can, I hope the rest of you have a brilliant Christmas, and I hope to write again soon. Keep Smiling, and I hope to see you all on the other side!

H x

Cheesy Inspirational Post


Crohns makes me sad, mad, angry, hurt, lonely, cry, isolated, scared..and much more
But it also made me grow as a person, I understand others pain, I am more organised, more efficient, I appreciate the days in my life when I can walk to town and get lunch with my friends, I know and love my friends and family more for their help, I am a stronger person than I thought.

Soppy? Yes. But true. Sometimes we need to recognise the good, and congratule ourselves. So here it is.. I am proud of myself and of how I handle this disease. Sometimes it gets the better of me, but I will make sure that happens less and less, I will beat this disease into remission.