The word that is heard perishes, but the letter that is written remains

This is going to be a slightly longer post than normal so I hope you’re sitting comfortably. I promise I’ll get to the point as quickly as possible but I need to spend a little time giving you the background and the reason for a post that could generate some negativity for a cause that I have so passionately backed for the last year. Here we go……

When I was diagnosed with crohn’s 11 years ago I knew nothing about the illness. I had no idea how different my life would become or how devastating the effects would be. I was given no support, minimal information and I knew no one who would fully understand. It took me a long time, 10 years in fact, to come to terms with it and feel comfortable letting people in on my ongoing battle. When I did finally accept the diagnosis and shake off the overwhelming sense of embarrassment I started a blog. The very one you’re reading now!

Whilst writing my first post I couldn’t help but vividly remember the loneliness, fear and complete disbelief I felt upon hearing those results. I was now a crohn’s patient. This was not a passing illness with a cure. What’s funny is that when I was given the diagnosis I suddenly remembered seeing a lady sitting in the hospital waiting area selling greeting cards. She was a volunteer selling cards for the NACC – the national association of crohn’s and colitis. I had noticed her every time I had been at the hospital having various tests and appointments. I even looked at the cards a couple of times and wondered what those illnesses were. Now, not only did I know what it was (well kind of) but I was someone who had it! When I came out of this appointment she was gone. That’s why when I went to my next one, my very first as a fully certified crohn’s sufferer, I really hoped she would be there again.

Luckily for me she was. We had a chat and she told me she spent every Monday in the hospital selling these cards as this was the day of the weekly IBD clinic. She was really informative and understanding. She gave me lots of literature that she had from the NACC. She also told me about their website which offered support and lots more information. I kept this literature and occasionally visited the website over the years. I never bought any cards from her but I made sure I had some cash for every hospital appointment to put in her collection pot. Visiting this website occasionally was the closest I came to accepting my diagnosis but within a few months I put it to the back of my mind – much like the crohn’s itself.

Sometime over the next few years the NACC changed its name to crohn’s and colitis UK. They also updated their very tired and complicated website. I actually only paid any attention to this whilst writing the first post on my blog. Once I published it I also took the step of signing up and paying for a years membership with them. I love everything this charity is working towards – they aim to improve life for everyone affected by inflammatory bowel disease, the main forms being Crohn’s disease and ulcerative colitis. It was the kindness of the lady volunteer in the hospital all those years ago that really made me want to help others the way she unknowingly helped me.

So at the same time as becoming a member I set myself a challenge of raising as much money as possible for crohn’s and colitis uk. I hate the thought of anyone feeling as alone and frightened as I did. Over the last 13 months I’m proud to say I’ve raised £3,153 for this charity that seems to feel as passionately as I do about helping people with these horrible illnesses. However, with a busy end to 2014 I completely forgot to renew my membership – despite the reminder letter they sent me at the end of October. It wasn’t only Christmas that distracted me, I had a long awaited operation towards the end of November so my mind was elsewhere.

In January I received a second ‘reminder’ letter from them. It’s this letter than has prompted me to air my annoyance at their approach to the renewal of membership. The reason I want to highlight it is that I feel a little let down by a charity that I had been so proud to back. And also asked my friends to. It begins with:

‘I wrote to you recently to let you know that your Crohn’s and Colitis UK membership was due to be renewed on 1st November 2014. I am sure this is just an oversight and look forward to receiving your cheque shortly.’

Straight away this put my back up. It’s not only the very presumptive language used at this point that frustrated me but the use of bold text too! Yes it was ‘just an oversight’ but to to go straight in with a bold sentence like that I felt it was too forceful. It goes on:

‘However, we are aware that some members may be on very low incomes. If you are in this situation and cannot afford your Crohn’s and Colitis UK subscription, but would still like to continue your membership, please write to the St Albans office briefly explaining your situation. We would be happy to offer free membership for this year in such circumstances’

Now this is a lovely thing to offer and definitely something I would take advantage of if I was in that situation. However, I’m not – as I said before it was just an ‘oversight’.

‘We also operate a direct debit scheme to collect membership subscriptions and donations, which you can pay by instalments if required. Please telephone if you would like more information’

Again, a great thing to offer but I can’t help that feel the £15 membership would soon be swallowed by all the additional processing and charges this option would require. I may be wrong – maybe charities don’t have to pay charges for this option.

‘Finally, if you have decided not to renew your membership, but would like to make a donation to Crohn’s and Colitis UK, please use the form below’

This parting line is the one that I found the most frustrating. When I signed up last year I was asked to tell them why I was signing up. I of course picked the option that explained I was, myself, a sufferer of crohn’s. This means that I am one of the many people’s lives that they are aiming to improve. That sounds really self important but I certainly don’t mean it to. My point is that if I, a target beneficiary of this charity, no longer want to be a member then why would they not be interested in any feedback from me? Surely if I had decided not to renew they should want to know why?! If I felt that there was in fact no benefit to being a member then clearly they are not achieving their very aim?!

I should point out that I absolutely do value this charity and enjoy receiving their newsletters. They are a positive, informative and enjoyable read. I know more about this illness as a result of them, I feel less alone and I know that there is a number I could call for a supportive chat at any time. I might not have ever used this before but I appreciate it being there and I am sure that many people have, and will continue to, benefit hugely from this. I have taken part in every study they have asked for people to partake in which I know will help towards better treatment and maybe even a cure one day!

I will be renewing my membership in spite of this poorly put together letter as I still whole heartedly believe in them, support them and want to help fellow sufferers. I know I’m not a professional writer and maybe I am reading too much into this – pun intended. However, I do think that any correspondence is extremely important – especially when it is asking for money. Luckily for them, I’m not put off by it but I do know that if I wasn’t quite so passionate about the topic I certainly would be.

Life is like a box of chocolates, you never know what you’re gonna get

Picking up my notebook (iPad) to start a post is always really difficult. I never know where to start or where it’s going to go. It’s become my way of thinking things through, off loading my frustration and ‘coming to terms’ with everything I live through. What I didn’t realise is how hard it would be to write a post when I’m feeling indifferent. I’ve said it before and I’ll say it again – misery really is my muse for this thing. Reading back over some of my posts I realise that I’ve been in some pretty dark places over the last year or so. I know there will be times when I’ll go there again but I also know that I’ll come out the other side…… AGAIN. I guess I have this blog and the incredible support from everyone who reads it to thank for that.

2014 has been a pretty good year for me. I’ve only had two small operations which is definitely a win. It’s very rare that I can say I’m winning so I have to take it where I can! I finally had the abscess(es) operated on at the end of November after putting it off for many reasons. The main reason was of course the half marathon that I completed in October. I still can’t believe I actually completed it. I did a half marathon and it only took me 2 hours 45 mins. Ok, so I know the time wasn’t great but I did it and that’s enough for me. It was hard. Really hard. In fact for the first ten minutes afterwards I’m fairly confident the only words I managed through the tears were “it was so hard”.

The thing is, I was in pain before we even set off. I had only just finished some antibiotics and I knew the abscess was still lurking. I also knew that there was no way I wouldn’t drag my arse to that start line. I had doubts as to whether or not I would get it to the finish line but the start line wasn’t in question. Painkillers are always my friend but this time they were my saviour. Waiting to get going was torture. Even though I hadn’t managed to eat anything my stomach felt like it was going to explode. Through all the training I’ve found running a great distraction from life in general, especially the crohns. But on the day itself I was suddenly very aware as to why I was doing this. I’ll never be able to explain the overwhelming emotion that stayed with me through all 13 miles. Against all the odds I was taking part in a half marathon. Raising money AND awareness for something that I, like so many others, have no choice but to live with.

Thankfully I had two great friends running with me who wouldn’t let me pull out. Despite lots of begging from me they forced me to carry on. They reminded me why I was doing this and helped me to focus on just getting through it. They carried my water to make sure I always had some, they talked to me to distract me, they made me laugh but most importantly they made me cross the finish line. Thank you somehow doesn’t seem enough. So far we’ve raised £855 and I am so grateful to everyone who donated, shared or read my story. I would still love to get it to £1,000 though so I will be thinking of ways to add to this in the new year. Who doesn’t love a good cake sale?!

I’m never going to be a natural runner but I have carried on pounding the streets. Not the distances I was covering during training but it’s amazing how half an hour out there clears the head. And melts the pounds. Out there I’m just another person running to lose weight. I can forget the constant fear, worry, uncertainty, and pain that I endure every day. And if I happen to accidentally find myself signed up to another event or two along the way I’ll know that for now, I’m still very much winning.

There are some things you just can’t run away from

Sometimes, just sometimes, I imagine I am someone else. No one specific necessarily, (alright, Cheryl Cole sometimes) but just someone who doesn’t have to live a life filled with Crohn’s. And by filled I really do mean filled. Every day I am reminded of it – taking tablets, feeling tired, having stomach ache, rushing to the toilet, injecting myself, getting an infection, taking more tablets, feeling more tired. I could go on but I’m worried you’ll stop reading. I can’t remember what it feels like to not have Crohn’s. I can’t properly remember the carefree teenager who was replaced so suddenly and so wholly by a Crohn’s sufferer. There must have been a time when I didn’t have to worry about where the nearest toilet was, whether I had enough pain killers in my handbag, whether I would pick up yet another infection, get another abscess. And somewhere along the way that, and a great deal more, has become my life.

Most of the time I am able to count myself lucky. I own a home, I have a wonderful boyfriend, a few amazing friends, two incredible sisters, a good job, a car and money in my purse. I know that’s an awful lot more than some people and I am, and always will be, grateful for that. But one thing that I don’t have is the luxury of planning. You might remember from my last post that I very nearly missed out on my holiday a couple of months ago thanks to an abscess. Luckily I was able to go with some antibiotics and a view that I will inevitably need an operation. Since then I have been living on a high of adrenaline. The abscess has remained at bay and I have been training hard for the half marathon. Last week I completed 9 miles and I could still feel my legs. It finally started to feel like I might actually be able to complete this thing that I have trained so hard for – through flare ups, infections and all the other stuff that I’m sure you’re bored of hearing about.

So why the miserable post? Well yesterday, 16 days until the run, I developed an abscess! And not just an uncomfortable one – an agonisingly aggressive one. I could be paranoid but I don’t think it’s forgiven me for going on holiday. Whilst I was sipping on cocktails, getting a tan and generally living in paradise, it was being slowly killed (I like to imagine suffocated) by some strong ass antibiotics. They say revenge is a dish best served cold and right now I feel like I’ve had it served on ice. In an igloo. In the arctic.

I don’t know for sure yet what this means. My surgeon wasn’t in yesterday so I have some antibiotics to see me through the weekend until I can speak to him on Monday. I have no idea whether I’ll recover enough to do the run in two weeks. I might get taken in to surgery once I’ve seen him. The antibiotics may be enough to keep me out of theatre for long enough for me to complete it. I wish I knew. One thing I do know is that this time the pain is too much to train through. That means there will be no run this weekend. I am forced to realise that yet again my Crohn’s is in control. If I do recover enough, in time, I am unlikely to be able to give it my last two weeks of training. If I don’t recover and have surgery I will be forced to pull out. Neither one of these options are ideal but I’m willing the antibiotics to kick in and get me there on the day.

I don’t want to even think about this option but I do think it’s important that people know that IF I am unable to take part your donations will not have been for nothing. My incredibly amazing boyfriend and equally amazing friend have told me that they would like to take over my fundraising. They will both be running the event even if I am unable to and they would like you to continue donating. I don’t know what I’ve done to deserve such special people in my life but I do know that I will forever be in their debt if they have to do this without me. Please donate whatever you are able to help me show both Matt and Amanda just how amazing they are: justgiving

I’m keeping my fingers crossed that I can put my trainers on in time for the big day. I’m also keeping a big box of tissues (and one of chocolates) at the ready should I not get the news I hope for on Monday.

Winner winner Turkey dinner

I have started so many posts over the last few months but none of them have made the published list. Today I am determined to see one through to the end. I’ve done so much since my last post it’s hard to know where to start. I think a good place is Turkey. Not the delicious Christmas dinner type – although it IS only 131 sleeps until we’ll be tucking into that!

You’ll remember what a rubbish year 2013 was for me. After starting this blog I realised that I deserved something to look forward to. So my other half and I decided to book a 5* all inclusive 10 night trip to Turkey. We booked it only 6 weeks beforehand once we were sure my Crohn’s and all other complications were under control. Those weeks flew by and before I knew it there was only a week to go. I was so excited I barely noticed that I was starting to feel quite uncomfortable. As the week went on this discomfort soon turned to pain and within days I realised I would have no choice but to see my surgeon.

On the Thursday morning I called his secretary to get advice. As I started to explain the reason for my call the worry of missing out on the holiday all got a bit too much and I was in so much of a state I couldn’t even tell her my concerns. She was brilliant and told me to go straight to the hospital where my surgeon would meet me. Waiting in the a&e department I tried to keep myself calm and by the time he came to get me I had convinced myself it was all ok and was picturing myself by the pool with a cocktail in one hand…. And another in the other.

Through my tears I explained the pain I was experiencing and my obvious concerns about the holiday. He assured me it would be fine and he wouldn’t let me miss out. However, once he examined me I knew he was just as concerned as I was. An abscess, of course! His next question was “have you eaten anything today?” Aaargh no please don’t ask me surgery related questions – I’ve got a plane to catch….. In two days! I have never behaved like such a baby since I was actually a baby. I laid there and cried. And cried. I cried for all the pain of the last ten years, all the fear, all the operations, all the disappointment, all the embarrassment and of course for the 5* hotel waiting for me in Turkey.

Eventually I pulled myself together and he started talking again. He was debating whether to operate there at Peterborough, or whether or send me to Addenbrookes, or whether…… Oh oh oh I like the sound of this….. whether WHAT?!?…… At this point I was practically holding his hands and begging him to tell me ANY option other than operating. “I could give you some antibiotics to see how you get on but there will be conditions”…….

“If there’s no improvement by Saturday we operate”
“If you go to Turkey, under no circumstance do you visit a hospital there. You get a flight home and call me on your way to the hospital”

Done and done

I took the first dose of antibiotics before I had even left the hospital car park. I was desperate for them to work. I was desperate to get on that plane. And get on that plane I did. I was still in pain but no where as bad as before and I knew the antibiotics had worked on the infection at least. The abscess itself I could sort when I got back. Despite a bit of pain, the holiday was amazing. It was everything I imagined and more. Crohn’s has taken a lot away from me but this time it didn’t take my holiday. Crohn’s – 3,254 / Amie – 1.

We’ve been home a month now and I still haven’t ‘sorted’ the abscess. It still hurts some days and causes me discomfort the others. The thing is, I’ve been training for my half marathon and I don’t have time for another operation to get in the way. I feel like I’m on a winning streak with this battle following the holiday victory and I’m not going down without a fight.

With 8 weeks until the run I’m up to 7 miles. That’s just over half way, another 6 to go and I’m there. It is the hardest thing I have ever done. This week my injection made me feel truly awful. My immune system and my iron levels are low. But I got out there and I did 7 miles. It hurt almost every muscle in my body but I did it. And I am determined to see it through. Even if I crawl over the finish line – which is a strong possibility. The purpose of me doing this originally was to raise money and awareness which is something I will always feel passionate about. But it’s more than that now. It’s proof that this illness will not beat me. Yes, it will knock me off my feet from time to time but it will not beat me. If I can get through 13 gruelling miles I can show my Crohn’s that despite the early lead, I am winning!

If you would like to support me on my half marathon mission then please visit my Justgiving page
Thank you

Two glasses of water and an egg sandwich…. I don’t think BBC THREE will buy this one

I have written about various elements of my life with Crohn’s through this blog and have mentioned different operations along the way. As I had another procedure yesterday I thought I would write a bit about that, step by step to give a good picture of what this entails. Just to recap: I had a non successful martius graft last year to repair a recto-vaginal fistula. In order for the tissue to fully recover so that they can try again they need to keep the area infection free. The best way to do that is to insert a seton – a material loop to keep the fistula open so no infection can set in. Right, here goes. Enjoy…. I know I did(n’t).

4.45am – and so the day begins with a 4.45am alarm. As I have to be at Addenbrookes for 7am it’s a nice early start. Yesterday I had quite a lot of discomfort in the problem site and it seems today is just as bad. If there was ever a convenient time to get an infection it’s now….

5.40am – we’re on our way. I’ve just had a glass of water which will be my only one until after the op. I really hope I’m in early this time. Last time I had to be there at 7am but didn’t go down to theatre until 4pm. That’s a long time without food or water. I was sat in a waiting room with a load of giant hotdogs walking around…. Pretty inconsiderate.

6.50am – I’ve been taken straight through to the ward. This is a good sign.

7.30am – a nurse has been and told me I’m first on the list. My surgeon starts in theatre at 8.15 so it won’t be long. Now I just have to wait for her to come round to see me so I can sign the consent form and I’ll be on my way.

8.10am – ok change of plan. I’m actually third on the list. I can handle that. Forms signed. The anaesthetist has also been round to go through some forms so I am all ready to go…. And thirsty. The hunger doesn’t bother me but the thirst is always so difficult to ignore.

10.05am – Matt and I have been listening to everything going on around us. The ward I’m on is a holding ward for people going to surgery. I’m still thirsty…. People are here for all different operations. There’s a woman having an abscess drained on her back. Her fella keeps burping really loud and making me laugh each time. They’ve bickered a lot. There’s a woman having some bone shaved from her hand – she’s lost a stone since her last appointment. She lives in st Neots and whilst she has her op her husband is going to run a couple of errands. Oh they’re here for me…. Let’s get to theatre.

10.10am – I’m in the anaesthetic room having the heart monitors put on and the cannula inserted…. Ouch. Now for the good stuff…. Drugs! They put a mask on my face and told me to gulp the ‘oxygen’. So I do…. It’s gas. What a pleasant surprise. Right now you could tell me my house was on fire and I would find it hilarious. I’m almost annoyed when they tell me they’re putting the anaesthetic in. Until they put it in that is…. Only, they don’t quite put enough in so I’m in the best place ever… Just between conscious and unconscious. I just have time to say “this is amazing” before I hear their laughter and they put enough in for me to fall asleep.

11.15am – eurgh why am I crying??? Where am I? Who is this woman who is repeatedly saying my name and trying to put an oxygen mask on me? Ah I’m awake. I feel no pain. I’m thirsty. As if reading my mind the nurse passes me a glass of water….. Which I down in one and pass back. Thankfully I didn’t need to say any words for it to quickly be refilled. I wonder whether they have anything stronger but I keep that thought to myself. I feel good. Apparently I look good but I have a feeling their standards are pretty low. I will be taken back to the ward once they’re happy I’m ok. In the meantime I get to watch a faulty towers like scene whilst all 10 nurses try to find the glasses of the guy next to me. We share a little smile and I know he’s thinking the same. I instantly like him. 20 minutes later and the glasses show up in another department much to the delight of all the staff. I’m not sure the guy was quite as bothered but he did tell me “it’s nice to be able to see you”…. I think I’ve pulled.

12pm – I’m back on the ward. Matt, however, isn’t. He said he was going for a Burger King – I still find it weird that there’s a Burger King in a hospital. I can’t help but wonder whether he’s in a food coma somewhere. At least he’s in the best place! I’m given a sandwich and a cup of tea which last all of 2 minutes. This is partly because I’m hungry and partly because the woman opposite me is still nil by mouth and watching my every bite.

12.30 – he’s back! The greedy boy had a chicken royale, chips, a cheeseburger and a sprite. My egg sandwich no longer seems quite so fulfilling now. Luckily I have another cup of tea to pacify me. I’m close to going home. The procedure went to plan and I now have a seton in place. I am completely numb and hope it stays that way until I get home – the journey will be so much better that way…. For both of us.

2pm – discharge letter complete, pain relief given and ‘free’ hospital slippers stashed in my bag and we’re out of here. I will see the surgeon for a follow up in 8 weeks. For now though I can go and recover in the comfort of my own home – I seriously couldn’t have asked for a better outcome.

So here I am now, 7pm the day after the surgery. I’m in pain but to be honest, after last years op this is a walk in the park. The worst thing right now is that I am constipated. I’m not allowed to push (sorry for the detail but I did promise to always be open and honest) so I am taking a stool softener. I am also drinking prune juice, orange juice and syrup of fig. So far…. Nothing. I shouldn’t want to hurry it really as it’s going to be so painful but it’s so uncomfortable not going. My stomach is rock hard and the reality is my stomach isn’t used to being full for so long. Hopefully it’ll happen soon, I’ll let you know. Although to be honest, you’ll probably hear the screams…. For that, I apologise in advance.

Phileas Fogg would be disappointed

How has it been so long since I wrote a post on here….. 80 days! Phileas Fogg was confident of travelling around the world in that time and I couldn’t even keep a blog updated…. I can’t even begin to think about what I’ve done in that time let alone write about it. So instead, I’m going to start with a quick update on my not bucket list list

Raise £2,500 for Crohn’s and Colitis UK – the 24 hour fast last year raised a staggering £2,267! It also got me in the top 5% of Justgiving pages during 2013. So, I’ve now decided to raise this to £5,000 by the end of 2014. This ties in with another of my targets:

Take part in and complete a half marathon – mainly without dying but preferably in under 2 hours – haha under two hours….. I was still on some pretty strong pain killers whilst writing this list! I have, however, signed up for the half marathon in October. Please visit my Justgiving page – anything you are able to donate really does mean a lot to me.

I should tell you, I am not a runner. It may sound like I have loads of time to train but I am going back to Addenbrookes next week for an operation. Following the disappointing news that my last op was unsuccessful I now have to get my body prepared for a second attempt. That unfortunately means having a seton put back in to reduce the risk of any abscesses forming and to allow the tissue time to fully recover. Fingers crossed just a couple of weeks out of the game!

The other thing that impacts on any training regime is of course the pesky Crohn’s itself. I get extremely tired. I often have tummy ache. And I take a medication that zaps me of all energy and wipes out my immune system. Thank God for chocolate!

I have made it on the short list for an award at the Crohn’s and Colitis UK’s 35th Anniversary Awards. Firstly, my amazing big sister nominated me for ‘young person of the year’ and secondly I’VE BEEN SHORTLISTED. I can’t begin to explain how proud that makes me feel. When I started this blog I expected a handful of people to read a post or two. Instead, it’s been read nearly 5,000 times! I have grown so much as a crohnie and am delighted to be able to raise awareness of Crohn’s and also raise money for a brilliant charity. Unfortunately I won’t be there to find out whether or not I’ve won the award as it conflicts with recovery time from this next op – ironic hey!

So what else do I have to talk about……

Oh oh oh how could I forget…. I was on the radio! I was a guest on BBC radio lincolnshire – 94.9fm. Melvyn (in the morning) was speaking to me about this very blog. He was lovely, asked me great questions and allowed me to talk about living with Crohn’s. He didn’t even flinch when I said “anus” live on air. Or when I told the story of how my poo sample was ‘damaged in transit’ once upon a time. Not only was it a great experience for me but it was another method of raising awareness. And yes it has to be said – I really do have a face for radio….maybe I’ve found my true calling.

And so for now I’m in a pretty good place mentally. The humira (fortnightly injection) seems to be keeping the Crohn’s under relative control, I’m exercising and losing the post op weight. I’m generally making the most of being well. That, right now, is enough for me.

It’s so unfair….. Just ask Sam Faiers

With the recent news of Sam’s diagnosis I thought it only appropriate to dedicate a post to her and the battle she will now endure. I know only too well the point Sam is at right now. The euphoria at having a diagnosis and knowing that it isn’t cancer. Seriously, I think anyone who has been so poorly and waited for a diagnosis has had the dreaded thought ‘what if it’s cancer?’

Well luckily it isn’t, it’s just Crohn’s disease! Ha this is the only time you could feel lucky to have Crohn’s. The rest of the time is mainly spent wondering what you could have done to deserve such a thing. I know ‘it’s just one of those things’ and ‘it could happen to anyone’….. Well so can winning the lottery or landing a role in the next hit movie but they have never happened to me.

People often ask me how I knew something was wrong at the beginning. The truth is that I didn’t really. I thought I had a bug as I suddenly started regularly experiencing tummy ache and an urgency to visit the toilet. After a few weeks of this I thought I must have an intolerance to something so I started cutting foods out of my diet. At different points I tried cutting out bread, crisps (never again!), sweetcorn, milk, cheese, vegetables, red meat, fruit, chicken, fish….. Nothing made a difference. Every time I ate food I was in agony and either on the toilet or being sick….. So I stopped eating!

After a couple of months I had lost so much weight and felt constantly tired and run down – it was time to see the doctor. Looking back, I don’t know why I waited so long. I guess I just hoped it would pass and I would start feeling better….. Any minute. They didn’t waste any time – I guess three, maybe four stone weight loss in as many months is worth investigating. Blood tests, scans and the dreaded colonoscopy confirmed Crohn’s disease.

I went back to college in the afternoon on the day I was diagnosed. That shows just how serious I thought it was. I didn’t even really click at that point that it would be a lifelong illness. The most important thing was that I planned to miss off the word ‘disease’ and just tell people I had Crohn’s. I was so worried about people knowing I was diseased…. How would people be around me? What if they thought it was contagious?…… Hang on….. is it contagious?!?!

Whilst I can’t fault the speed with which I was diagnosed I do feel I can fault the diagnosis itself. I was simply told I had Crohn’s disease and would be added to the clinic of a specialist to discuss it further. In the meantime I was put on steroids and told to watch a video, not even a DVD, that I was given. It’s no surprise really that I would take it so lightly – it was delivered that way. I never did watch the video, I was far too busy eating everything in sight once the steroids kicked in. It wasn’t until I saw the specialist that the reality of a lifelong illness was laid bare….. And during that appointment my ‘normal’ life vanished.

I’ve come a long way since then and have found peace with my diagnosis. I did nothing to deserve this. You don’t get an illness as a punishment. The same way that you don’t win the lottery as a reward.

I hope Sam recovers quickly from this recent flare up. I hope she finds her Crohn’s easy to manage and problem free. More importantly, I hope she has a good network of friends and family around her for when the reality of the diagnosis sinks in. I believe Sam did the right thing in being publicly open about it – she’ll have no choice but to face it head on…….. It took me ten years to be brave enough! I was a fan before, now I’m a super fan.

From fatty to fitty?….. It’s a work in progress

I told a big fat lie….. I promised a weekly update on my fitness drive and so far haven’t even mentioned it. Until now, over a month in. That’s no reflection of how it’s going, just an example of how lazy busy I always seem to be.

I have now had four personal training sessions with James, and many visits to the gym in between. The first session I had made me realise how far I had let things go since the operation, or PO as I’ve started referring to it. My life now has two eras: BO – before op, PO – post op. How confusing it’s going to be when I go back for round two: BO I – before op 1, PO I – post op 1. But this is also BO II – before op 2. So I’m currently sitting in PO I with an added side of BO II…… phew, glad we cleared that up.

So yeah, I had piled the weight on, done zero exercise and could hardly walk up the stairs without gasping for breath. And there I was being shouted at “down and give me 50!!!!”…….. Of course it’s not really like that, shame really. I was however, shown various different exercises that I struggled to do. A feeling that I wasn’t used to and didn’t like. It made me feel weak, vulnerable, but more importantly it made me feel determined to never feel like that again. Crohn’s means I have no control over certain things – the bowel mainly, but it will NOT make me feel like I have no control over my entire body.

I left that first session knowing that each session afterwards would be better. I would be better. Since then I have changed my eating habits, visited the gym regularly and practiced every exercise James has shown me……. Well, nearly every exercise. I can honestly say I have worked hard and yesterday’s session showed me that. I felt stronger, more in control and I could hold each exercise for that little bit longer. I have been so supported by James both in my weekly sessions and outside of those with suggestions, encouragement and support. I couldn’t be more grateful.

And now I have a date to see the surgeon. March 13th. I anticipate I will leave this appointment with an op date. That would have filled me with terror a couple of weeks ago. But I’m getting close to being ready for it now. I want my life back. I want to be able to plan things. I want to start a family……. we want to start a family.

So I have set myself a challenge of losing a further stone by the time I see the surgeon. This will keep my focus and give me something to work towards. That’s only three more visits to James. Every week counts more than ever before. I need this next operation to be a success and by getting physically and mentally stronger hopefully it will be.

I’m off to the gym……..

I ache just thinking about it

Happy new year!

2014 is now well under way. I don’t know how I feel about it really. I am of course pleased to see the back of 2013 which included two operations, three hospital stays, countless infections and devastating news that I will need more extensive surgery….. But that surgery is taking place in 2014. So as the clock struck midnight and the New Year began I couldn’t help but feel less excited than normal. I already know this year is going to be a struggle and I’m not quite ready to face it.

2013 wasn’t all bad though. It was the year I started this very blog. The year I finally opened up and shared my life and my feelings with friends, family and strangers. It was the year I realised that some good had to come out of the hand I was dealt.

2013 also saw me get myself a personal trainer. I put a plea out there and my prayers were answered by the J of J & M personal training and nutrition. J is James and he will be helping me lose weight and get fit in preparation of #martiusgrafttake2. I am touched and so grateful that he offered to help me. I am of course dreading it, slightly, as I have done no form of exercise since August last year! But I will give it my all as much for myself as for the generosity of James giving up his time and expertise. So as I get underway with the training and new eating plan I will be keeping a log of how it goes and writing a weekly update. This isn’t a New Years resolution, it’s a woman on a mission…… Wish me luck……

New Year…… new me?!

It’s been a while since I wrote anything, which seems to have coincided with the ‘black cloud’ lifting. It would appear that my muse is my own misery.

With Christmas fast approaching my mind has been wandering to next year and of course the impending operation. With no date it’s hard to know how exactly to prepare myself. I need this next one to be successful. I don’t think I would be able to pick myself back up again if it’s not a success second time round. So with that in mind I have my New Years resolution ready……..

BE AS PHYSICALLY PREPARED AS POSSIBLE

I have gained a pound stone or two whilst recovering and I know this will do nothing to help my chances. So I will need to get my arse in to gear and shape up. Diet is only going to be a small part of that.

I need a personal trainer. Someone to not only show me what to do but to keep me motivated. The only catch is that I don’t have the money to pay for one. When I have the op I will lose money as I will have gone over my sickness allowance at work. Also, as I found the ward I was put on last time utterly soul destroying I am planning to enquire about a private room….. Something I am told could cost about £70 a night. Now maths isn’t my strong point but even I know for just a week that’s potentially almost £500. Who knows how long I will actually be in for! I am going to have to start putting money aside as soon as possible to give me one less thing to worry about whilst recovering.

So what I am looking for is someone who can help me in return for….. Eternal gratitude! Maybe there’s someone just starting out who could do with a case study. Or someone who fancies a challenge. I will give it my all, follow any plan with precision and enthusiasm and write a diary detailing every step of the journey. This could be used to advertise services, showcase how amazing (fingers crossed) results can be and to maybe gain more clients.

If you or anyone you know can help me please please get in touch – amie852@live.co.uk

Best make the most of eating what I want when I want whilst I still can – it is Christmas after all.