A is for Aldeburgh

So the weekend marked the start of my new venture! Exploring new places whilst going through the alphabet. To be honest, it couldn't have come at a more perfect time. Lately I've been feeling poorly which has led to me feeling really down. It's incredibly frustrating to know that you're doing everything right and all you can, but it's still making no improvement. I've been bleeding a lot and having terrible pains which really makes me worried. I told my IBD nurse about this, and she said to up the prednisolone enema use to twice a day and to also stay off food - just have liquids.  I literally received this message just as I was meeting a friend for dinner... we had planned to go to a lovely fish food restaurant where I would have had lots of choice and been able to have a really nice meal. I was really looking forward to it so was crushed when I was told I couldn't eat. But still, if it was going to make me feel better then I would give it a go! It was just a shame I would only be on Aymes shakes whilst away for the weekend. My first day just on shakes was tough, as I was taking lots of medication so it made me feel quite sick. I told my nurse and she said if I found I felt ill, eat something low fibre. So I had a teeny slice of GF toast which made me feel better. I then got to thinking what else I could have low fibre on my weekend away... fish and chips are low fibre right?! ;)

Off we set on Friday night all packed into the car. It was a shame, as I didn't feel too great and was being a little grumpy. It was one of those cases which I knew I was being grumpy but I couldn't shake it off. I was feeling sorry for myself that I couldn't eat and that I felt rubbish, but once we arrived to our cute little cottage, I shook off my bad mood and decided I was going to enjoy myself. The cottage was really sweet and homely - we had made a good decision! After unpacking the car, we headed into the high street. It was full of cute shops and little restaurants. We picked a busy fish and chip shop which had dining upstairs. The smells coming from the shop were incredible! It was fully packed out so we had to wait a few minutes, but whilst we did we headed to the co-op to buy drinks. It was one of those restaurants where you can take your own booze! So my dad stocked up on cans of gin and tonic to have with dinner. By the time we got back we were ready to sit down and ordered straight away. I had a few chips, and plain fish with no batter and to eat something was amazing. I couldn't come all the way to Aldeburgh and not have fish and chips! We finished up fairly early as everything in the high street seems to shut at 8pm. So we walked down the road and went into a local pub for a drink. It had a really warm friendly feeling, and was full of locals and their pet dogs. I thought it was really sweet how you can bring dogs in to places and it made me miss my Buffy! The pub had such a nice atmosphere I didn't even mind that I was drinking water. After our drinks we headed back to the cottage and got cosy in Pjs. In the living room was a big chest of games so we got out monopoly to play. It reminded me a bit of Christmas, when you're all sat round playing board games. My boyfriend got FAR to into Monopoly and wanted to keep playing past midnight! Just because he wanted to get the most money and win. He's very competitive! ha. But I was feeling sleepy, so we agreed to 'pause' the game and go back to it later (later never happened!)

In the morning I woke up after only waking once through the night, which is good for me. The sun was shining through the curtains and it looked like it was going to be a lovely day. We all had breakfast - shake for me! - then got bathed and ready to go out and explore. We got in the car and headed to the next town called Thorpeness as there was a boating lake you could go on and in the glorious sunshine it was lovely. We got a little boat for four and all took turns in rowing. It was really funny and I enjoyed sitting in the sunshine bobbing about. The sights were all beautiful and we could also see the 'House in the Clouds' from the lake which is a really cool building. It was an old water tower converted into a house and people can now rent it out and stay there. We said we would walk out to it another day to get a closer look!
The next stop was Southwold. My boyfriends family used to have a place in Southwold so I have always heard such lovely things about it, and was keen to see the lovely place for myself. It had a really cute high street, with old sweet shops and tea rooms and vintage shops. My mum loves shopping more than anyone I know, so we of course had to look in every shop! As we'd been walking around so much I started to feel tired so we stopped at a tea rooms. There were so many yummy cakes and scones on show it didn't seem fair that I couldn't eat them ... but as I felt so worn out I knew a shake wouldn't sustain me so I ordered a jacket potato and planned to eat it without the skin. Eating it, I felt like I was back in Basildon Hospital as that's what I lived on for 3 weeks! Lunch and dinner.. how I'd missed it... not! Still, a jacket potato in a Southwold tea rooms was much nicer than ones in Basildon hosp! After refuelling, we kept walking and decided we would go crabbing. We had been a bit silly though, as it was now afternoon time so the water was out, but we still wanted to give it a go. We put bacon in persil bags attached on string and lowered the lines in. Before we knew it we were pulling out loads of crabs! The challenge was to pull them up quick enough before they dropped off! There were a family with young children crabbing next to us and they were getting all excited as we pulled more and more out. It was really sweet to see how much fun they were having, and them being there definitely made the experience more enjoyable. In the end we had caught about 60 crabs in a bucket!! I caught the biggest one, but my boyfriend wouldn't stop saying how he'd caught the most. I told you he was competitive! So we climbed down the rocks and set the crabs free and watched as they sidewards walked into the water. The sun was still shining and it was a beautiful day, so we walked along the harbour and stopped at a pub where the guys had beverages and I had a refreshing peppermint tea. Luckily I hadn't had any major tummy pains throughout the day, but I did keep needing the toilet. A toilet was never too far away though, even if it was a not very nice public loo - I was sure I had my hand sanitiser at the ready! I could tell the difference from when I had been eating food instead of sticking to the shakes, but I needed more than just shakes as I wouldn't have had enough energy. I just made sure I was careful with what I ate. For dinner that evening, we walked along the high street to find somewhere and found a lovely restaurant on the sea front where I ordered sea bass with carrot & mash potato puree with greens. As much as I love greens, they are too fibrous for me at the moment so I passed them to my mum, but the rest of my dinner was amazing. It was so nice to be able to enjoy something and feel truly satisfied and not like I was missing out.

All the crabbies we caught. I did a little dance with mine to get it out of the water!



Sunday was another lovely sunny day and I had had a similar sleep to the night before which was pretty good for me. I struggle a little with getting off to sleep, but I think that's due to using the enema before sleep which I find very uncomfortable. I find it hard to get in a comfy position to then get off to sleep but once I do, I drift off fairly quickly because I'm always so exhausted. The problem is then staying asleep... I can wake up about 5 times a night and as soon as I open my eyes I am wide awake. Sometimes it's because of pain, sometimes needing the toilet and other times because my brain is racing. I couldn't even say what it is I am thinking about most of the time, I just find it hard to switch my brain off. But being away seemed to be doing me good, as I only woke up once both nights. So I woke up Sunday feeling fairly refreshed and ready for another day of exploring. Today there was a food & drink festival on in Aldeburgh so we decided to go and check it out. It was amazing! A huge venue with lots of stools selling all different types of foods and drinks all home grown and produced in Suffolk. We walked around for hours, enjoying soaking up the sunshine. We bought some gluten free bread mix and also gluten free scone mix to make up for a treat for me! It was a beautiful day so we enjoyed sitting in deck chairs and listening to a singer and it was a really enjoyable day. After all being worn out, we packed up and headed home. I really had had the best weekend. Being away was the perfect thing for me. Also, because the reception was so bad there, I could hardly look at my phone so escaping from that for a while was nice. I felt lucky to have my parents and boyfriend with me, and appreciated the effort they'd all put in to make sure I'd had a super time.

So after a fun packed weekend it was back to work Monday, and I decided I was going to be strict on my liquid diet, only having low fibre foods if I felt like I really needed it. I felt tired at work, but knew it was just because of my busy weekend so I pushed on. I actually had a good day and it was nice seeing everyone and I felt perkier and a bit more 'myself'. Also, a colleague had bought me a Crohns and Colitis diet book from America. I was so overwhelmed by the gesture. It was such a lovely thing to do for me, to go out of your way to research into something to help. I was so thankful and really appreciated it. I started flicking through straight away and it all looked super yummy! There was also a 2 week diet plan in there which I plan to start when I am finished with the shakes. I think I'm going to try and get my family involved to. I got home and showed my mum and she was all into it and thought everything looked yummy. So I had my dinner - shake! - then decided to take my dog out for a walk as I'd missed her over the weekend! I also thought it would be a good way to wear me out and would hopefully mean I had a good sleep.

Dinner! And my lovely new book

 Buffy sure slept well after this walk!

Monday night I woke up several times needing the toilet and being in pain. It wasn't the night sleep I had hoped for at all and meant that I woke up on Tuesday feeling rubbish. Everything ached and I felt exhausted. I got dressed and took some strong pain killers then my mum dropped me to the station for me to go to work and luckily I got a seat on the train. I then got a taxi to my office even though it is only a 15 minute walk, I just didn't have any energy. I worked the morning but then couldn't take it anymore. I had had to have more pain killers which made me feel so out of it, and was clutching at a hot water bottle. I felt so fed up, but knew I had my phone appointment at 3 in the afternoon with my IBD nurse so thought at least I would get to the bottom of things there. So I headed home and got straight into bed. The phone called and it was the nurse. I had remembered everything I wanted to say to her about how I don't think aza has made any difference to me, I have been bleeding and going to the toilet frequently, in severe pain, feeling depressed and all the other symptoms I have been experiencing. I thought she would say that we were going to try some different medication but no... She said that at the moment they are giving me all they can. I felt choked and started to cry. I could hear the sympathy in her voice and know she really did feel for me, but she didn't know what to say without talking to the consultant. She said she would like me to do another stool test to see what was going on there then we could move from that. I quickly thanked her and just wanted to get off the phone. As soon as I put the phone down I burst into tears. Uncontrollable sobs. I couldn't hold it back. I felt truly crushed. I had all my hopes pinned on that phone call and that I would get some answers and stop feeling the way I did. To be told that there was 'nothing more' they could do destroyed me. So I just have to go on feeling like this? I have to live on painkillers and not being able to go to work or go out or do normal things. I got back in bed and shut the blinds and shut my door. I just wanted to be alone.
My mum didn't disturb me when she got in from work as I was half asleep really. I stayed asleep until my boyfriend got back which was about 5.30. It was just because I heard the dog barking so it disturbed me. I had to get up anyway as I had therapy at 6. Therapy. I had been dreading it all week. I didn't want to go. I didn't want to talk to someone about my feelings. I didn't want to talk to anyone really. About anything. But I had to go, I knew it was something I had to do if I wanted to get better. So my boyfriend dropped me as I had just had morphine and wasn't ok to drive. I forced myself to knock on the door and in I went. As soon as I sat on the ladies chair I broke down. Completely and utterly fell apart. Everything just came pouring out and strangely enough when the session was done, I felt better. I felt lighter and like a weight had been lifted. I took a deep breath and walked out immediately feeling more relaxed. My mum was there to collect me and then we headed home. I knew she wanted to ask how I got on and what was said but I didn't want to speak about it. Not because I didn't want her to know, but just because I like it being my private outlet. Somewhere I can rant and not be judged and then shut the door and be done.

So after an absolutely exhausting day, I had a cup of tea and a can of soup. Me and mum then facetimed my sister who is in Croatia on a yoga retreat with my boyfriends sister Emma. They both sound like they're having such a fab time and didn't stop laughing. It made me feel happy that they were both happy and I went to bed feeling better than I had done during the day. I fell asleep fairly quickly, but had my usual routine of waking up through the night which meant I woke up this morning feeling worse. I text my boss to let her know how I was feeling and sorry that I couldn't make it in. I felt like a let down but knew I had to listen to my body and today it was screaming at me! My tummy ache was so bad it had spread up my back. When I first woke up I felt like I couldn't move! So today I'm going to properly rest and keep positive so I feel better tomorrow.

My Godmother tagged me in this photo and it really is true. I will keep holding on, and keep on pushing till the day comes when it's ok.

XOXO Crohnie Girl

To see more photos of my trip, follow me on instagram! https://instagram.com/xoxocrohniegirl

Socialising with Crohns

I've said before how I now find it hard to socialise the way I did before my Crohns diagnosis. I can't go out clubbing both Friday and Saturday nights, or go to posh eateries and eat and drink what I want and  I'd be lying if I said this didn't upset me. I've always been someone who loves going out and letting loose. Having a drink and dancing till the early hours of the morning, but my body just can't handle that nowadays. Even going out with my family is different now... We always used to go out to parties together, or dinners out involving lots of fun and drinks but I can't really join in anymore.
I think some of my drunkest times have actually been with my parents! My dad's a DJ so we go out to bars to watch him a lot of the time or to parties he is working at. Everything is always centred around our weekends and where we are going out. I remember when the consultant told me I had Crohns and my first thought was that I wouldn't be able to go out having fun drinking anymore. As silly as it sounds, it was a big deal to me. I am a very social person and have always loved going out. I was afraid that my life was going to change completely. Would my friends still like me and think I was fun? Would my boyfriend still want to go out with me if I was just going to be boring and stay indoors? Would my family feel bad for wanting to go out but me needing to stay in? All these thoughts raced through my head and it upset me. Even now sometimes when I go out I can be there in body but not mind. It is almost like I am an outsider watching what's going on. Seeing my friends and family having fun and thinking they would be fine if I wasn't here. Because what actually am I bringing to their night? I'm not drinking so not on the same level as them. I'm not dancing and being silly because I'm exhausted and in pain. Why am I even here? These thoughts are my fears from first being diagnosed echoing in my head. I've been told and reassured that no one thinks they'd have a better time without me there,  but sometimes I can't help but think that.
In an attempt to make me feel more included (and to get my family healthier!) my mum tried to come up with things to do that weren't centred around food and drink. As a family we decided that whenever we have a free weekend, we're going to drive out somewhere, stay for the night and explore a new town! So on to Air BnB I went...

As a way to make things fun and interesting, we decided we would work our way through the alphabet - A to Z. So after much research and looking at the UK map, we decided on Aldeburgh for our first visit. My boyfriends family used to have a place in Southwold which he said is lovely, and Aldeburgh is just along the coast from there. All the photos on the internet look lovely, and we found a cute cottage to stay in. I've been looking up the 'Top ten things to do in Aldeburgh' and it's got me all excited! There's the cutest old fashioned cinema I'd love to visit, and a quaint little high street and lots of village pubs that I'm sure will do a good roast for Sunday. Also, the weather is meant to be 18 degrees and sun, so I am praying that this doesn't change!! Sunny beach walks will do me the world of good this weekend. I'm going to go with my boyfriend and parents, my sister can't come as she is off on holiday to Croatia which is a shame :( But I'll make sure she's around when we visit our 'B' location.

After a somewhat rubbish weekend and start to the week, I'm really trying to have a positive outlook. As much as I still feel poorly and in pain, I am trying to look on the bright side of things so it's great to have nice weekend plans to look forward to.  
So as I said before, my 'homework' was to write down how I felt on my good/bad days and I've decided to try and write at least 3 positives out of each day which I do really think will make me feel more positive and encouraged. Today I got the train with my sister this morning, the sun has been shining and I've booked to go away this weekend. See, that wasn't too hard now was it!

XOXO Crohnie Girl

To the One I love

I am sorry. I'm sorry for my mood swings. I'm sorry for ruining plans. I'm sorry for making you worry. Sometimes I am sorry I exist.
I know you didn't sign up for this. I convince myself you'd be better off without me. You could find someone else. Someone who wouldn't make you stay in on a Saturday night. Someone who could go out and get drunk with you till the early hours of the morning and not feel tired or need to go home. Someone who wouldn't moan about their tummy hurting, or cry all the time. Someone who wouldn't tie you down, holding you back from getting on with your life. Someone who you could have fun with and be spontaneous. Someone who could make you happier... I know that you love me, and I love you too, but I think wanting you for myself is selfish. At 22 you shouldn't have to deal with the things you do. Your life should be carefree. Not centred around your sick girlfriend and her hospital appointments.
Often I think like this. I loose myself in these thoughts, and make up conclusions and endings that are a million miles off. My brain races ahead of me. It literally has a mind of it's own. I could think myself into darkness. Those dark moments really are quite dark. Painful and frustrating. Often I don't feel like a fighter. I feel weak and angry. I'm afraid of my own body. I hate my own body. I just want to cry and shut myself away.
I don't want any sympathy, and I promise I try my best not to cry. Sometimes I just have to give in, I can't help it. And often there is nothing you can do to help. You'll see me in pain and I know you want to fix it. I can see you just want to take it from me - to get rid of my pain. But you cant. You will not be able to fix it and never will. You cannot fix my broken body.
But what you can do is hold me. Brush your fingers through my hair. Cuddle me so tight that I can almost forget the pain. Make me laugh as you always do. You have a magic ability to make me smile even when I'm feeling terrible. You're like my own magic medicine. I know how lucky I am to have you, even if I don't always show it. I know sometimes I am moody towards you. I get the hump when you're out having fun, but that's only because I want to be having fun with you. I'm jealous that you can go out and enjoy yourself and do what you want. I'm jealous that you can have fun with other people that can do the things you enjoy and the things you want to do. It makes me think you have a better time with them. It makes me think that times with me are boring :( .. But you handle my mood swings so well. Rarely do you retaliate back, and I know this is because you understand me. You know I don't mean it, you know that I just feel lonely, and often that's the hardest part about my disease. It's not just about the pain, the endless time in the bathroom, the desire to hide my illness from everyone. The anxiety and the shame. The frequent need to turn down social outings or fun evenings at a restaurant because I just cant handle it. I feel so alone from it all. That's harder than the pain and the worry. Not being able to explain to people because nobody can understand it. But you accept it, and you accept me. You still love me for all that I am and all that I have, and I am so truly lucky.
I never know how the day is going to go when I wake up in the morning. Whether it's going to be a good day or a bad day. I can't plan ahead or anticipate how the day will turn out. That's why I know I have to make the most of each minute. I've already seen myself in my darker moments, and know the importance of appreciating the thrill of living. The thrill of experiencing the world. The thrill of falling in love with you. I will love you fiercely. I will laugh with you always. I will appreciate you and forever be grateful for you. I love loving you. You make me so happy, but there will be some ugly times... I will go through a lot of ups and downs and there will be lots of fear and uncertainties. It's an on-going disease. An on-going fight. I know I can be strong, but sometimes this disease will suck the strength out of me and I'll have moments of fragility when I will need you more than ever. I won't need you to fix me or take care of my problems, I will just need you to be there. Be there in both the beautiful and ugly moments reminding me how wonderful it is to be alive and not alone. Because when you're with me, it helps me to believe that tomorrow will be a beautiful day. That's all I need.

Your Daisy May xxx

 

No Choice

It always seems to be the way, that when things are looking up... BANG, Crohns strikes again. I am so done with this stupid disease. I hate that it totally consumes my life.

Yesterday was a normal day at work and I felt ok other than a little bit tired but nothing unusual. At work I always have painkillers and a hot water bottle just incase I feel bad, and I was so glad I did. I was having fairly frequent toilet trips but this is just part of my normal day! All was normal until I noticed I had passed a fair amount of blood. This is a symptom of Crohns, but since being hospitalised and being on the steroids I hadn't had this so I panicked as to why it was happening now. Seeing bright red blood at any time for anyone is alarming, so it immediately worried me. I don't know what had caused this? I hadn't eaten anything or done anything to upset me so why was it happening? I could feel myself getting worked up and becoming more stressed and anxious which was never going to help the situation. Then came the pains. The absolutely agonising pains. I can't explain to anyone what it feels like and I think only other Crohn's sufferers would know. I could feel pains all the way from the bottom of my tummy to my chest. It makes me feel like I can't straighten properly or move easily, it's like it's taking over my body. I tried deep breathing to ease it and calm myself down but nothing was helping. I couldn't believe I was having to deal with this all at work, and wasn't even in the comfort of my own home. I emailed my IBD nurse to ask for help, and she told me to use the steroid foam enema I had been prescribed urgently so I knew I had to get home and use it. My boss let me leave early and wished me better and so I headed for the train station. My stomach had blown out and swollen so much I was sure someone was going to offer me a seat on the train thinking I was pregnant! I suppose its the same as hitting your head and making it sore - it will swell. Just as if your tummy is sore it swells. I couldn't even have my trouser buttons done up and had to lay out on the seat on the train. Luckily it wasn't rush hour so wasnt too busy. My mum got me from the station and rushed me home where she'd ran me a hot bath. At this point the pain was still bad, even after taking codeine but I was hoping the bath would make me feel better. Before bathing, I used the steroid enema and got myself into a state after seeing more blood. It is just the worst feeling to not know what is going on inside your body, and it makes me so worried to think that my condition is getting worse. I think to myself that I should be better by now, but I do know that this is a long road and with it will be some bumps, but eventually I will get to a smooth patch.

On the right is my stomach normally, on the left is swelling from pain :(

I felt so much better laying out in the bath and relaxing was doing me good. I just had one issue... Work. Friday night was meant to be my first night back DJing since June (pre diagnosis) and I was so looking forward to it. I felt like it was getting back to being 'me'. Doing all the things pre-crohns Daisy did, and getting back to my normal life. But no. It seems to always be like that, as soon as I want to get on with something and get back to my life Crohns stops me. I hate the feeling of loosing total control over my life and not being able to do the things I want to do. It's like I have been denied the right to choose for myself. I can no longer choose if I want to go out or stay at home, Crohns has to decide for me. I find it so upsetting as a 21 year old to have a disease rule me as much as I try to fight it. I was determined I wanted to DJ, I had been looking forward to it all week, but then on the other hand, I couldn't just hope I'd feel better by the time it came to go and then have to let them down last minute. So my dad phoned the bar for me (his friend runs it) and explained what was going on. They couldn't have been more understanding, so that was really helpful as I felt I didn't have to worry about that. It felt like a little weight lifted.

I got out of the bath and into my cosy dressing gown. I still could feel the pain so took some oromorph which soon kicked in. Although I felt 'out of it' from all the pain meds I could still feel the pain, it just felt like it had been dimmed, but was refusing to go away. My best friend Demi came over to spend the evening and distract me from how I was feeling, so we had a girlie night in with my sister. I am so lucky and so appreciative of all the people I have around me. I don't know what I would do without them there to pick me up when I'm down. As much as I feel alone at times, and I can't explain to other people how I'm feeling and they can't understand, I just know that they're there and I'm so grateful for that. We watched telly on the sofa while I clutched a hot water bottle and talked about rubbish, and it was just what I needed. Demi went home and then I got into bed. My sister Ellie came in my room to get in bed with me and it made me want to cry. She is very different from me, in the sense that she doesn't like to show her emotions. She rarely cries, doesn't really like hugging, and wont ever delve into how she's really feeling. So for her to come into my room and share the bed with me, really meant a lot. Even though she often doesn't show how she is feeling, I know she loves me deeply and will always be there for me. I think as sisters we connect on a special level, so I know what she's really thinking and feeling, and I know she really worries about me. She is always wanting to be proactive, and from the minute I got diagnosed, wanted to know what she could do to help. She bought cookery books, sat with me in hospital, and when I was home spent nights in with me and was always there for me. She is a level 12 sister :)

So after taking some more oromorph before bed, I had a good deep sleep. I've woken up feeling a little better this morning and the pain is not as bad as last night but I'm still not great. I'm meant to be out tonight to celebrate my friends birthday, but in reality I can't. I'm in no fit state to go out to bars and have dinner when I can't even stand up straight. It is just shit, and there is no other way to put it. But I have to remember that as well as bad days I have some good. So what I am going to do, is when I have a good day, write things down and write what was good about that day and how I felt so that when I am having a bad day, I can look back on that and know that there are more good days like that to come. And even though today is a bad day, I'm grateful that I can look out the window and see sun. Not everything is all bad.

XOXO Crohnie Girl

Popping my Therapy Cherry

 

 

So this morning I had my very first therapy session. When I got diagnosed with Crohns, the IBD nurses recommended seeing a therapist or counsellor so I had someone to talk to and process how I was feeling. I tried to get a contact but it was quite difficult, anyone I spoke to told me to go through my GP. I did go through my GP but there was a 4 month waiting list! At first I was happy to wait, but as things got worse and I started feeling really down, my mum thought it best for me to see someone sooner. My mums friend recommended me to a lady in Brentwood, so I plucked up the courage and booked an appointment.

 

Last night I really didn't want to meet with the therapist. I sat watching the Great British Bake Off making up every excuse in my head as to why I couldn't go. The thought of speaking to someone about how I truly felt made me feel anxious and stressed. I didn't want to explain myself or let someone know how I was really feeling. I didn't want people to think I was strange, or weird or dramatic for thinking and feeling the things I did. The main thing I was worried about was being judged, and I'm silly for thinking this as therapists all follow a strict confidentially policy and are probably the most non-judgmental type of people, but I just couldn't help the way I was feeling. I feel like this a lot of the time lately; like I cant control my feelings. I cant seem to get a grasp on my emotions or connect with them, so this was a clear sign that speaking with someone was a good idea. I tried to snap out of how I was feeling, and took myself to bed to relax and instead of push back from speaking about my feelings, try to accept that this was going to be good for me.

My alarm went off at 06.30am, but I was already awake. I felt like I had been awake most of the night, my mind racing and feeling anxious. I got ready quickly and headed to the meeting in Brentwood which was scheduled for 07.30am. I booked it early so I avoided having to have time off work. With all my doctors appointments and what not, it's really difficult to book them around work and I always feel so bad having time off. So when I can, I book around my working hours. It was great that the therapist could work to suit me as well.

I felt really apprehensive as I walked up to the door, I was thinking in my head that I could quickly turn back and run away, but then a kind face met me as the door opened. I smiled back at her and had no choice but to head in. I have never had a therapy session before so didn't really know the protocol. The only stuff about therapy I knew was what I had watched on Keeping up with The Kardashian's, when they visited their various therapists! The lady invited me to take a seat and then handed me a contract to read over, which was fairly straight forward and stated the confidentiality policy and I was happy with it so signed. We then ran through some personal details - name, address, etc - then she handed over to me to get started. All fell silent as I didn't have a clue where to start... She encouraged me to speak, just starting wherever I wanted and not to worry if it came out muddled up. I liked her. She made me feel at ease. I could feel my tummy unwinding and untwisting from where I'd worked myself up so much. I decided to start from the beginning, in 2012 with my first hospital stay and went on from there.

 

Throughout the session there were many tears! I think I practically used up the ladies whole tissue box. It felt good to speak about things, and letting my thoughts out was almost a release. It felt like she'd managed to turn the tap on and let everything out of me. It was strange how I could tell so much to someone I had only just met, but it was so much easier than talking to someone I knew. When I try to explain how I feel to my friends and family, I feel bad. I feel like I'm giving them extra worry and stress on top of everything else. I don't want to burden them with my dark thoughts, and I think part of me used to think if I didn't say them they would go away, but they don't. Holding things in 100% makes it worse. You work yourself up, and make any thought or situation in your head bigger. When I was feeling really down and like I couldn't say anything or tell anyone, I felt like I was drowning. Drowning in my own dark thoughts. I was trying to tread water. Trying to get up for air but I couldn't. Everything in my head was bringing me back down, dragging me to the bottom. But after my first therapy session I feel like I am swimming. My head is above water, I can see things clearer now, but I'm not quite at the finish line. One session hasn't 'cured' me, but it has definitely helped. She said I had to work a lot by myself, as well as in my sessions with her. She set me some 'homework' shall we say! I have to look at myself in the mirror for five minutes and write down what I think about myself... This is going to be hard. Since diagnosis, I feel like I hate myself. I hate my body for doing what it's doing to me, and hate myself for what I am doing to my family. My therapist (how very LA of me!) wants to know how I see myself, as it seems that I am too hard on myself. She said I need to not punish myself so much, and learn to cut myself some slack. If I'm having a day where I feel sorry for myself, I'm allowed that and I shouldn't feel bad for having those days. My second piece of homework is to work on breathing from my diaphragm and use deep breathing as a method of relaxation. Stress isn't good for anyone, especially Crohn's sufferers so I know how important relaxing is. I just find it so hard!!! But I am determined to try this. I feel booking a nice spa day will help too :) 

 

Once I was on the train and on the way to work I took a big deep breath and felt relief. I had done the hardest part, and things were only going to get easier now.

 

XOXO Crohnie Girl

Out of the Desert, back to The City

After an amazing week in Dubai, it's back to rainy England and back to work. As much as I didn't want my holiday to come to an end, I was looking forward to getting back to a routine. Having Crohns and being spontaneous is very difficult. I always have to be prepared with medication and food and I find that even the slightest disruption to my normal day affects me. Even on the weekends my body is different to what it is Monday - Friday. So being on holiday was like an extended weekend!

Dubai is such an amazing place and I totally fell in love with it. It was my first time visiting and I really didn't know what to expect, but it was so much more than I could've imagined. The sights were incredible, and it was so strange being on the beach but being able to see the city and all the tall buildings. I guess it is a city like London, but on a beach?! Very cool.

My holiday came at the perfect time. I had been feeling really low and sad, so sunshine and fun was just what I needed. I fully prepared myself before going by packing relevant medication, pain killers and my aloe gel. I also had intentions to eat well and mostly avoid alcohol. At the airport we went to Wagamama's (my favourite!) and I had chicken & rice with a pressed juice which went down very well. I felt ok after eating but was very tired and weak. When I am on a high dose of steroids my face gets very hot and red which makes me feel faint and this was how I felt in the airport. I thought I actually was going to pass out at one point so quickly sat down on the floor in the middle of the airport - quite embarrassing! but would have been more so if I actually passed out ha. As we were in a big group I felt bad and I didn't want to hold anyone up, so my dad came to the rescue and got me a wheel chair so I didn't have to walk around. To make me feel even better, my boyfriend treated me to the Tom Ford sunglasses I wanted. Given he was tricked into paying as I 'needed to borrow his card', but still ;) I felt like a right diva getting wheeled up to the plane in my new sunnies! The plane was really nice, and I had a nice comfy seat. As we had a night flight I really wanted to sleep so I didn't feel too tired, but I think I only ended up getting an hour or two, but still better than nothing. We got food on the flight as well, and I had a gluten free meal which was actually really good. So we arrived in Dubai early in the morning to be met by our friends who picked us up. We were in Dubai to celebrate my friends 21st so that's why there were such a lot of us. After a quick shower and change, we headed to the pool to lay in the sun. Outside it was SO hot.
I couldn't comprehend how people actually wore clothes in this heat!! I was in a bikini and melting ha. I laid on the sunbed for a while and ate some lunch (a chicken salad) but started to feel really claustrophobic. I think it was feeling tired and poorly and the mad heat. I said to my boyfriend could we get out of the sun for a bit, so we went inside to explore the Atlantis hotel which was nice and air conned!! The hotel was amazing, and had an incredible aquarium. I could have stared at it for hours, it was so relaxing. My boyfriend's favourite place was the Cold Stone ice cream parlour. It was very cool in there (literally!) as they mix up they're ice creams in front of you whilst throwing them around and all sorts of stuff. He had an 'oreo dream' and got it all round his chops! Haha. I felt much better for getting out of the sun, and soon it was time to get ready for the evening and go for dinner.
Our first night in Dubai was lovely, we went to a steak restaurant but I of course had chicken! The chicken was super yum so I didn't feel too jealous of everyone's steak. We all felt pretty tired, and as the big party was the next night, decided not to have a mad one. So we finished up relatively early in prep for the big day.

Sparkly views of the Atlantis on our first night

Friday I had a nice lie in and woke up naturally. For breakfast I had some fresh pineapple with a green tea and it was delightful. I drank lots of water throughout the day as well, as I was planning to drink alcohol in the evening so wanted to make sure I wouldn't get too drunk. It was Jess' actual birthday Friday so it was all very exciting and she'd opened her presents and couldn't wait for her party. We spent the day chilling by the pool and had lunch in the villa. I had scrambled eggs on gluten free toast to make sure I'd had some carbs to line my stomach. The girls started getting ready pretty early so we were well ready in time for 7. I used a can of hairspray on my hair in attempt to keep it smooth and avoid a frizz bomb as soon as I stepped out in the heat but the frizz bomb was inevitable and by the end of the night I looked like Hermione Grainger in the first Harry Potter film. But I didn't care as I had had such a good fun night.
The party was amazing, it was circus themed so there were midgets running around, fire breathers, acrobats, candy floss, sweets and more! I was really looking forward to letting my hair down and having a drink and that I did. I was drinking vodka and water so I made sure I still kept hydrated. I also ate about 3000 marshmallows! I couldn't stop myself! I felt drunk, and for the first time in what felt like ages I felt happy. It made me feel like I didn't have a care in the world, and it was almost like an escape from Crohns. I could let go and not care and just enjoy myself. This feeling only lasted for a short while, and in the morning I was woken up early needing the toilet and spent most of the morning in there. From feeling high and happy I was back down feeling the same as before. Feeling like I could just shut my eyes and it would go away. I knew I was going to feel like this though, as I had drank alcohol and eaten sweets and crisps which I shouldn't do, but in the moment I just felt like I wanted to. I think because I had been feeling so down before holiday, I just thought eff it. I'm gonna feel crap if I don't drink and eat carefully so I might as well feel crap and eat and drink what I want. Usually I don't think like this, as it's important for me to make my tummy better, but I was just in the mood that I didn't care. I got on with feeling crap, and as everyone was hanging, for lunch we ordered Nandos. Dubai is amazing, because everywhere delivers! So we got a Nandos for 14 delivered to the villa which suited me perfectly as I had chicken and salad. I also ordered some mash, as carbs makes everyone feel better :)

Me & the birthday girl!

 



Candy Floss

My lovely boyfriend JJ

 

Over the week I pretty much ate what I wanted. There were lots of sweets and chocolate in the villa which I couldn't help but eat. I still didn't drink much, and only had two other nights where I had alcohol, I just prepared myself for feeling bad the next day. On Sunday night we had a big night out and went for dinner and then to a club.
We went to a restaurant called Zuma where they do Japanese Fusion food and everything we had was amazing. I ate a lot of fish which was such an amazing change to just having chicken!! I had loads of sashimi, and my favourite yellow tail along with black cod. All of it was so good and I ate and ate till I was stuffed. I also had a drink of gin and tonic that lasted me the whole meal. It was presented like how you win a fish at a funfair, in a bag which was so cool. After dinner we had drinks in the bar upstairs then headed to a club called The Act. When we got there it was about midnight and there were performers on the stage and a woman doing acrobats in the middle of the dance floor and it looked like a crazy place. We had a table right next to the stage so was in prime viewing position to watch everything going on. It was the coolest club I've been to and the music was so good. It got me in the mood to get drunk again so I was back on the vodka waters! We kept dancing right until closing time, then carried on partying back at the villa. I finally retired to bed at 5.30am and slept through until midday the next day. The only thing that woke me up was needing the toilet again! I spent the rest of the day chilling out, and staying close to the bathroom. I had noticed that I didn't have bad hangovers, and I didn't know if this was because I was drinking so much water, or just because I wasn't really drinking much alcohol. I couldn't imagine being hungover and having my crohns flare up!

 

Dreamy sashimi!!

 

Me & my sister Ellie at Zuma

 

Dancing on the tables at The Act

 

 

 

 

The rest of our evenings were pretty chilled and we just ate at nice restaurants but we did have one more mad night... Ladies Night! Ladies Night is every Tuesday in Dubai and pretty much every bar/restaurant partakes in ladies having free drinks and 50% off of food. I couldn't believe it, I want London to have ladies night! We went to a restaurant called China Grill which was again Japanese food, so I had lots of sushi. Everyone was eating and drinking and all in the mood to carry on the night after dinner so we headed to Mahiki. I have been to Mahiki in London before and it was pretty much the same but better.
We got a table by the dance floor and were all having such a good night. We were up on the chairs dancing, having shots bought out on surfboards, giant treasure chests with sparklers and all having a good time. We were again there until the lights came on then all headed home in taxis. That night I had been drinking vodka waters mostly, but did have a red coloured shot and also sipped out of the treasure chest. My boyfriend kept catching me sipping and taking the straws from my mouth, as he knew I shouldn't be drinking cocktails. He was trying to help me as knew I would be unwell, but I was again in the mood where I didn't care. I know this is wrong, and I know I should care, I have just been feeling so low that I almost think 'whats the point'... and I know this is wrong. Whilst I was on the steroids and on holiday, I was just letting my hair down and knew that when I was home I would get back to my routine and back to being good and strict with my health.

Mahiki Madness!

 

So we got back on Thursday night after being delayed, and on a plane with broken air con and I was shattered. I felt so tired all through Friday and enjoyed laying on the sofa catching up on TV all evening. Saturday morning I had to be up early for another 9am blood test, so I decided to make the most of my early start and head to the gym afterwards. I dragged my boyfriend along for a spin class and its safe to say he hated it! It was incredibly hard, but I felt so good afterwards. I was proud of myself and him for going and we had worked really hard. We had to burn off the sweets, chocolate and alcohol we had been consuming for the week! I made us a healthy lunch afterwards and it actually felt really good to be getting back to my usual diet. We then went to see my nan and granddad as he had had an operation whilst we'd been away so it was nice to see him. In the evening we had my friends birthday party celebrations, which I decided I was going to drive to and not drink. As I finished my steroid course on Friday, I know I have to be really careful these next few days. I really don't want another flare up as I had previously when I had come off the steroids. So now I need to be really careful with diet. The party was still good fun without me drinking, and it was really nice to see all my friends. I'd missed them while being away!

Post workout lunch

Me, Lucy, Eleanor and Ellie at Autumn's birthday celebrations

 

"A Sunday well spent brings a week of content" and this is definitely what I am hoping for! I did absolutely nothing yesterday and I loved it. I was totally chilled out and relaxed and enjoyed a nice chicken roast dinner then relaxed in front of the telly. I woke up this morning way before my alarm and had to run to the toilet which wasn't the best start to the week but I'm keeping faith. This evening I'm going to see my doctor for a catch up and I think I'll feel better for getting things off my chest, and hope she can offer some help. Then it's an early night for me, as I have my cousins wedding tomorrow! I'll be sure to get lots of snaps of the blushing bride.

XOXO Crohnie Girl

The Only Way is Up

Although feeling at rock bottom is not at all nice, things from here can only get better. That's how I am trying to look at it right now. The only way for me now is up.

After having words with my parents about how I was honestly feeling, I could tell I had worried them even more and this made me feel worse. I already felt like a burden enough and now that I was letting them into my thoughts I felt like I was adding even more pressure on to them. I didn't want to tell them how I really felt, I didn't want them to worry or tell me off for having 'silly thoughts'. I didn't actually have any intentions of telling them how I felt, it was my mum that had found something I had written so she knew what was going on. My stomach sank when she called me telling me she'd found it. I knew she'd be devastated to know I was so low, but I didn't mean for her to find it. I didn't mean for anyone to find it or know how I really felt. These were just thoughts in my head that I was desperately trying to squish to the back of my mind. I thought by getting it out on paper it would feel like some sort of release, but it didn't go away; the voice was still there, still making me sad.
My mum wasn't angry, she was upset and hurt that I was feeling like this all alone. The real burden would be to live without me and that was something she would never want. Any hurdle I face, any wall I come up against, I 100% have my parents help to knock them down. I think I only doubted this because I was feeling so low, and when you have no way of getting out of that mind set or shaking off that negative feeling, it's hard to see any other side. I believed my family would be better off without me, that they would be free to have a normal life again, but my dad said to me that no life would be worth living without me in it. And I know he means this. I feel terrible for ever doubting that.

So after a bit of an intervention, I decided to take action. If the medication wasn't making me feel better, I was going to explore alternative roots. I had been recommended by a friend to see a lady who practises Kinesiology which basically is about human kinetics and relates to Chinese medicine. Kinesiology addresses physiological, mechanical and psychological mechanisms. I went into this with a completely open mind as I didn't know a lot about it, and had the attitude of 'what do I have to loose'. I managed to get booked in quickly and went to see the lady the night before I was due to go away. The session normally lasts 1hour, but I was in there for 2! (she had her work cut out with me!) She explored my Chakras which were not balanced which means this would reflect in my physical, emotional and energetic body. The Chakras are very sensitive and react to what is going on outside and inside the body. The purpose is to work with them frequently to make them more robust. At the moment, my 'Solar Plexus' Chakra which is in the stomach/gut area is all over the place. The Solar Plexus has the nerves that extend from the mind to the stomach and this is why what is often going on in our heads reflects in the health of our stomach region. As the stomach is our 'emotional core' mine is in a right state! Having Crohns means my immune system is confused about what it needs to fight and attack and what my body ends up doing is attacking itself. This is reflected in the way I think about myself. I was told I have to be incredibly careful about how I feel about myself. If we think 'I don't like who I am' the immune system will attack the self. So my Crohns is attacking my body from the inside out. She worked on some ways to fix this and repair my aura, and everything she said did really make sense to me. The session was incredibly emotional, and I felt that she worked on some really deep issues of mine. As draining as the session was, I felt lighter as I left. It was as if a weight had been lifted off my shoulders. Not totally! - but slighty. I don't expect all these feelings to go away over night, but I am encouraged that this could be a step in the right direction.

As well as booking in again to see the Kinesiologist, I have set up an appointment to see a councillor when I am back from Dubai. I'm really planning to enjoy my time in Dubai by relaxing and taking some time out, as well as celebrating my friends birthday. I will be surrounded by fun and my friends so I'm not too worried about feeling alone or scared in my own thoughts. I think the most important thing I have learnt is to not be ashamed of how I am feeling and definitely don't keep my feelings bottled up. And whenever you do feel alone, always know that you're not. There is always someone there to support you, no matter how low you're feeling. Have faith in human nature, people are more understanding then you think.

XOXO Crohnie Girl