Christmas with Crohns

When it comes to Christmas, we are all encouraged to eat drink and be merry but for those who suffer with IBD, this can be difficult. Throughout December I have been attending Christmas lunches and outings, and here's how I've coped with Christmas and Crohns.

December was kicked off with Crohns & Colitis Awareness week! I didn't know about this before, so hadn't planned to do anything. Next year I will definitely do a cake sale at work or think of something like that to raise money for the charity. This year I just bought a charity t-shirt and wore it proudly to spread awareness.

The first rule to remember is to listen to your body. If I wasn't feeling up to going out, then I would listen to my body and stay at home. The worst thing to do is to push yourself too hard (I've learnt this the hard way!) as it only sets you back further. So when I knew I had an event coming up, I made sure I had lots of sleep beforehand and also ate well and drank lots of water. This meant I was feeling top of my game when it came to a night out. Also, I have gone back to exercising as this always makes me feel stronger. I can't run as the impact hurts too much so what I have been doing is spin classes and using the cross trainer at home. It was hard initially going back to it, but I have eased myself in. I have also been attending hot yoga classes which I find really relaxing as well as good exercise. Learning the breathing techniques has helped me to keep calm when I feel myself panicking, so it has been helpful in many aspects. Yoga has really helped with my stress management and it's important because as fun as Christmas is, it can be very stressful. I am trying to do everything to minimise stress so I did all my shopping early this year. I am normally always lastminute.com! But this year I wanted to get it sorted early. I did pretty much all of my shopping online which meant I didn't even have the stress of having to leave the house! I also wrote lists to make sure I could keep on top of things, and wrapped them as I went along. This means that there will be no mad rush for me come Christmas eve *smug face*. It is really important for me to keep on top of things and not stress myself, as I am desperate to be well for Christmas.

My morning routine has been 30 minutes on the cross trainer, then drinking a green juice. It's important to get the vitamins & nutrition you need and this is a great way to get it in. This is made with spinach, peeled cucumber, apple and water. Yum!

 

The first Christmas event I had was my work Christmas lunch. We went to Smith & Wollenskys in London and they were so helpful in catering to my needs. I had melon & Parma ham to start, turkey roast dinner for main and sorbet for dessert. This meant I didn't feel left out at all and could join in with everyone else. As well as being careful with what I eat, I have to be careful with what I drink. My favourite drink to have was Vodka, lime & soda but I now can't have that. The lime is too acidic for me, I can't have fizzy drinks and a lot of Vodka is made from wheat and I am intolerant to wheat and gluten. Never fear, there is a way around this! All I had to do was find a wheat-free Vodka and I would have happily drank that with just water & a fruit slice or cranberry juice would be a safe option. On my hunt for wheat-free vodka, all I could find was Ciroc which isn't served in all places. However, they do different flavours of Ciroc which means it can make your drink more interesting. So at my Christmas lunch, my boss was kind enough to order a bottle of Ciroc so I could get involved in the festive spirit and have a drink! I drank Vodka with water so it helped keep me hydrated, I also kept drinking glasses of water to make sure I stayed feeling well.
Since the lunch, I have discovered that Smirnoff Vodka is also Gluten/Wheat free which is amazing as they sell this pretty much everywhere.

 

 

 

The past week my friend from Dubai has been over so I have gone out a lot and wanted to enjoy myself whilst she was in the UK. This meant a lot of drinking & eating! On nights I was drinking alcohol, I took Milk Thistle tablets before the night out to help my body process the alcohol. Another little trick was to have a Berroca and pint of water before going to bed after a night out of drinking. These small things made a difference to how my body felt the next day. I also tried to stick to my daily routine as much as I could and still eat carefully while drinking lots of water throughout the day. On Saturday morning, we got up and went to a spin class which set me up for the day. Afterwards I had a nice filling, healthy lunch in Charlies Deli down Brentwood high street. The staff in there were so helpful and accommodating to my needs. When eateries are helpful I really appreciate it, as I know how difficult I can be! So I will definitely be going there more often. It might become my new Saturday routine!
On evenings out for dinner I picked nice fish options and made sure not to over fill myself by having a dessert also. When going out for dinners it made me think of all the desserts I couldn't have, and as I am going out for dinner Christmas day, it made me panic I would have to watch everyone eat dessert while I sat without one. The pub we are going to is owned by our friends, and they are always really helpful with finding things for me to eat so after discussing it with my mum, we have decided to try making a gluten & dairy free white chocolate cheesecake (my favourite!) and come up with a dessert option for me. So I think this weekend will be spent in the kitchen festive baking!

Girls night out! Didn't look like this Sunday morning!

 

After a heavy weekend I have felt tired and like everything has caught up with me. I think this week I'm going to be careful, especially in the run up to Christmas I want to be as healthy as I can be. So I'll be eating lots of greens, drinking lots of water and exercising as much as I can. Although it was amazing to feel like ME again, feeling the after affects is a reminder that I'm different. But I am ok with that. I think I have finally gotten to a stage of acceptance, and knowing that this can't rule me, makes me stronger each day.

XOXO Crohnie Girl

Stepping Stones

One of the secrets in life is to make stepping stones out of stumbling blocks. When things go wrong, it's hard to think rationally and keep a positive attitude but it's important not to let mistakes make us and simply use them as a stepping stone.

In the past couple of weeks I have  noticed a real change in myself and I now believe myself when I say 'I'm getting there'. I think this is because I have had my first bit of positive news when visiting the nutritionist. For me, that has been a real turning point. It's given me hope that I could really control my disease through diet alone which would of course be amazing! So I've really focused on foods I can eat and also getting creative with it  which has meant I feel like I'm enjoying food again which is a massive positive. I have always been a food lover (maybe a bit too much!) so my diagnosis came as a bit of a blow as I thought I'd never be able to enjoy food again, but now knowing that there are certain foods I can eat, means I can enjoy food once again. I've been making lots of sauces to go on pasta dishes, soups, breakfast brunches (I have missed bacon!), marinated fish dishes and even cakes! As silly as it may sound to people, being able to eat 'normally' has helped to make me feel normal again and it's also meant I am getting better nutrition than I was before. It is hard when you're on a depravation diet to get all that you need, so now that I know tips and tricks to get the nutrition I need, it's made me feel more energetic and generally better in myself. I have also bought some highly recommended probiotics as well as L Glutamine supplement that will help to repair my gut and make me feel better. Along with the diet, I have still been going to therapy each week and continuing to make progress. With each good day I have, it makes me feel stronger and stronger and even more like I really am 'getting there'.

These are a few dinners I have had recently. I post them all on my Instagram if anyone wanted to look - https://www.instagram.com/xoxocrohniegirl/ 

So the next step was to look to get back to work and with a nod from my doctor I decided to start a phased return to work, where I would start working from home and just go into the office one day a week. I felt a little apprehensive about this, as anyone would but also excited. Plus I knew it was better to go sooner rather than later, as I didn't want to build up such anxiety about going back to work and make it a big thing. I had decided with my boss to work from home Monday, Tuesday, Thursday, Friday and then go into the office on a Wednesday. I was happy with this as it would break up my week and also happy to have some sort of routine! Obviously if I felt particularly poorly on a Wednesday, I didn't have to go in but the flexibility meant I could feel more relaxed towards work and not have to force myself in as I had done in the past. I am so conscious not too push myself as I feel like I've come so far, I don't want to just take ten steps back.
Monday & Tuesday were totally fine, and I was actually feeling fine about going in Wednesday. Tuesday night I went to a hot yoga class to help totally relax me. I wanted to have a really good nights sleep so I felt fresh in the morning for work. I had planned to get up and go with my sister which was although in rush hour, meant I wouldn't be on my own on the train so I felt better about that. I won't lie, I did have feelings of anxiety when I woke up Wednesday morning but to be honest I think that is only normal. I got myself ready, had some breakfast (said goodbye to Nelly!) then headed out the door which I think was the worst part. Actually getting myself to step outside, ready to face the day, and once I had done that I felt fine and confident to head into work. We got on the train which was packed as per usual during rush hour, but stood together. The majority of the journey was fine, but just as we were approaching Liverpool Street, I felt the urgent need to go to the toilet. This immediately panicked me as I could see no way out to the bathroom and felt claustrophobic and jammed in. I felt my hear beat rise, I felt sick, I felt faint and was struggling to keep myself calm. My sister said I went really white and as we got off the train, stood to the side with me. I told her I needed to go to the toilet so we rushed through the station. I felt in such bad pain because I had got myself so worked up, but we decided to sit down and have a cup of tea and calm down before I headed in. I was so thankful to my sister for being with me. I don't know what I would have done without her. She sat with me till I had totally calmed down, but I still felt in pain and really sick so I spoke to my boss and decided to head home. When I was home I felt really upset with myself and like I was a failure. All the negative thoughts I'd previously had came flooding back and took over. When my mind feels so irrational I struggle to shake it off, but my sister pointed out to me how far I had actually come. I had managed to get the train to London in rush hour which I hadn't done in a month so I should be proud of my achievement. It wasn't a failure, it was an achievement. I had to focus on what I had achieved, and not think of it as a step back. Just a side step. Just a stepping stone. Then tomorrow, I would step on the next stepping stone.

Thursday I went into work a little later to avoid rush hour and I had a much better journey. It was more relaxed and although I still felt a little anxious going into work, I over came it. I managed to go in and I had such a good day. It was so lovely to see everyone I had missed and nice to have some normality back. I felt really proud of myself. It's all the little things that are actually a big thing to me. It might be that I am able to go somewhere alone, or able to have a drink of alcohol, or a nice dinner and afterwards I think wow.. I did that. I feel like more and more each day I am getting back to being 'me', Daisy who has Crohns not I have Crohns & my name's Daisy. Slowly but surely, it's shrinking and I'm growing. And being able to recognise that myself is amazing.

I know that each day is not going to be perfect, and some days I will have a not so good day but from now on I will have no bad days. Just 'not so good' days. It's important to recognise that it is not all bad, and appreciate the good I have and what I am still able to do and also acknowledge my achievements. So I am going to continue my journey and am confident in saying I am 'getting there'.

XOXO Crohnie Girl

A Step In The Right Direction

Lately I've had a really tough time with things and have felt really down. I think no one really understands Crohns disease and how totally life consuming it is, unless you are a sufferer yourself. Not only does it have physical affects, but also has a huge impact on our mental state. Stress often makes Crohns symptoms worse so it can become a bit of a vicious cycle. A cycle in which I have been caught up in.

It's incredibly tough and disheartening when you feel like you're doing everything right and trying your absolute best but are getting no where. It would be easier if I could see a light at the end of the tunnel, but since diagnosis I haven't even seen a glimmer. I take all of my medication, I'm strict with my diet, I have early nights, I try my best to stay relaxed and calm but still suffer. Currently I am on steroids, but a low dose and ones that are not aggressive as Prednisolone. This has been great as I haven't had the horrible side effects, but it also means I haven't had the great benefits. Things have just been 'OK'... Not that I even know what 'OK' is anymore. I think you can spend so long not feeling normal, that it just becomes your new normal. This is what has happened with me. Things haven't improved so it's just become my normal. Just something that I have to live with and can't defeat and this has really been getting me down. So down that I have been signed off work for a few weeks by my doctor so I can really give myself a chance to get better. When my doctor first suggested this I was so reluctant but now I can see it was a good thing. All along I have been pushing myself back to work and pushing myself back to my 'normal' life but it has all been too much for me. I haven't allowed myself to get properly better so this is what I am now doing.

As well as spending days at home, I have tried to get out briefly as I am conscious to not build up such anxiety about going out that I just keep myself indoors. This would't be good for me at all, so when I have felt brave enough I have ventured out, although not all times have been a success. A couple of Friday's ago I went to the cinema with my family. We had something to eat before and I ordered a gluten free margarita pizza which I thought would be fine for me, but boy was I wrong. The adverts hadn't long finished until unbearable pain consumed my body. My stomach cramped and twisted and I only knew too well what was coming. I tried to take deep breaths and ignore the pain (I felt like I was going into labour! I can only imagine ha) and I took some of my Zapain tablets I carry in my bag and told myself it would go soon. But every 15 minutes came the unbearable cramps. I held out for as long as I could but I just couldn't stand it anymore. I ran out of the screening to go to the toilet only to find the toilet wasn't on the same floor. Panicking, I sprinted down two flights of stairs whilst undoing my jeans and luckily made it to the toilet just in time. I was distraught. I sat in the cubicle and cried. It was relentless, there was no way I could go back into the film. The usual questions came up again, why me. It almost makes me think what is the point of trying to go out and have a normal life. This is how the vicious cycle starts. I worry about going out, and stress about toilet locations which then only makes my symptoms worse. My symptoms lasted for the duration of the evening which meant that Saturday I woke up feeling totally exhausted and unable to do anything. I laid on the sofa the whole day and had to miss out on a breakfast with my friends. Just one of many things I've had to miss out on because of Crohns.

But after a rubbish weekend, Monday bought new hope. I had an appointment with a Nutritionist based in Hatfield Peveral, Essex. I had been recommended to see her by a friend who also suffers with Crohns and said she was very helpful. So although I had been feeling down, I went to her with an open mind and I am so glad I did. She was simply amazing. It was the first time since my diagnosis I had actually had some positive news and felt hopeful about things. I sat in a chair and held a metal stick which was connected to a machine which reminded me of a lie detector test. The nutritionist then took another metal stick which was connected to the machine and pressed it into acupuncture points in my toe. Then, chemicals in tiny vials were put into the machine and the dial on the machine would go somewhere between 0 and 100 depending on how tolerant my body was to the chemical (the food). We went through a whole list of foods to see what I could and couldn't tolerate and it was amazing. All along I had been having dairy as I thought it didn't affect me, but cheese went straight up to 100 meaning I was very lactose intolerant. Although I LOVE cheese, I thought this was really positive as it meant that if I cut out cheese and lactose it could make me feel better. Hope!! There was hope for me yet!! I also found out that I could drink champagne, as well as wheat free vodka which was a bonus for me. Steak, white wine, chilli, and onion were all very bad for me which I did expect but it was nice to have definite answers. Obviously everyone is different, and I understand this but being told this time and time again is very frustrating as I just wanted definite answers, but this nutritionist was able to provide this for me which was amazing. I left feeling incredibly positive. My mum almost couldn't believe my change in mood, and it was simply because I could finally see a light at the end of the tunnel. The nutritionist gave me loads of great ideas of how to still get a balanced diet including my five a day. She suggested using my Nutri bullet to make sauces for pasta dinners and to add flavour and nutrition to meal times. I could boil and blend up veggies in the mixer and blitz them and voila, a sauce! I was excited to get home and start my new meal plan with my new found knowledge. I really found it so helpful and would recommend anyone to go. It was much better than what I would have got from the NHS dietician which I am still waiting to hear from!!

This was the machine used in the test. This is the link to the clinic that I went to. I really would highly recommend!
http://www.bodysenseukltd.co.uk/nutrition-clinic/ 

This was my amazingly tasty dinner. I boiled up carrots, cabbage and butternut squash then blended them in the nutri bullet. I also added turmeric to give it a curry taste. Turmeric also has amazing beneficial properties and works as an anti-inflammatory which is good for my Crohns. Curry is my favourite dinner as I love hot tasty food,  but I now can't have chilli but I didn't even miss is as the turmeric made it taste so good. I then had a skinless jacket potato which was good for me as low fibre, and I was able to have it with dairy free butter (Vitalite) so all in all this dinner was a winner!

So although I have been down and off work, things are looking up. I feel like I have taken a step in the right direction and it has been amazing how much food can change your mood, health and life. It's made me feel so much more positive and my therapist is so happy with the improvements I have made. For the first time since June I feel like things are going in the right direction. And to top things off, my amazing boyfriend has bought me the best present in the world.... A PUPPY!! I have wanted a puppy for so long to have alongside my dog Buffy and I finally got one. A cute fluffy girl called Nelly and she is just perfect. So whilst I have been home I have had her to make me smile. She is the perfect distraction from my Crohns. I should have named her 'Cure', she is simply amazing and a cheeky little pickle! So how things are going at the moment is positive, and I am aiming to get back to work very soon, although I am conscious of rushing things, I will just ease back when I feel comfortable and ready.

Even Naughty Nelly has got keen on the diet plan!

XOXO Crohnie Girl

Smile

They say that a photo speaks a thousand words, but it can also hide a thousand tears. You'd be amazed at the pain a single smile can hide. What a person shows to the world is only a tiny facet of the iceberg hidden from sight. All it takes is a beautiful fake smile from an injured soul, and they will never realise how truly broken you are.

It's no secret how much I have struggled with my diagnosis, but through all my difficulties I try to stay strong. I try to keep smiling.
My favourite part of the day is the first five seconds when I wake up. I've forgotten everything, and in those first five seconds I feel normal. I wish those five seconds could last for longer.. Even just for a day. But when those five seconds are up I remember. The reality comes crashing into me like a brutal wave knocking me off my feet. Then I have to face my day. Sometimes this is the hardest challenge for me; just getting up and out of bed. I really struggle with sleeping and wake up throughout the night meaning I always wake up feeling exhausted. Fatigue is part of my condition, so being able to sleep would make me feel so much better but I really struggle. My mind is constantly racing meaning my eyes fling open at any time and I am wide awake. I have been trying to work on my anxiety and stress with my therapist, but we still have a long way to go. Last week I had a doctors appointment to discuss how things had been going, so I told her about my sleeping issues. I love my doctor, she is so understanding and makes me feel totally at ease. She listened to all of my ramblings, and concluded that taking some sleeping tablets could help. She prescribed me Zopiclone tablets in the hope that a few nights good sleep would make me feel perkier and more positive so I left feeling good that I was going to try something to help. I took them that night hoping for a solid night sleep but was disappointed.. I woke up on Friday after a disturbed nights sleep. My mum said they could take a while to work so I shouldn't give up yet.

Friday day time I went to work as usual but didn't feel great at all. I felt poorly and like I needed to get in bed, but I put on my 'Positive Daisy' hat and ploughed on. I had to, because I was DJing at a friends 18th birthday party that night and I didn't want to miss out. Crohn's had already stopped me once before and it wasn't happening again. I wondered if it was me worrying about DJing that had made my symptoms worse as I know how bad stress and anxiety is for IBD. I tried my best to relax and someone who always puts my mind at rest is my dad. He is the King of Cool and always makes me feel relaxed and at ease. As I learnt how to DJ from my dad, I knew he would come with me to the gig and help me anyway he could. Knowing that I wouldn't be on my own made me feel much better and like I didn't have to worry so much. So I got home from work, got ready and headed out with dad to the party. Before I left I knew I felt bad.. I had a high temperature and felt shaky and ached all over which is just how I felt before I went into hospital. I tried to ignore how I felt in the hope it would go away. Once we got to the venue, I was focused on the job and distracted from how I was feeling. The party was going really well and I was enjoying myself. I felt like I was winning. I was getting back to myself and being me, but then I'd be reminded. I'd feel the urgent need to run to the toilet and it felt like Crohns had scored a goal against me. Luckily I had my dad there to cover for me while I could run to the loo. I wasn't backing down. I kept going, as many times as I had to keep running to the toilet, I didn't give up. But as the night went on, I felt worse. Cold but sweaty, cramps in my tummy, I felt faint, I felt dizzy, I felt terrible. I felt weak and defeated, but I was determined not to give up. I got my dad to cover for me whilst I sat down. I thought if I sat down for a minute the light headed feeling would go away. I thought I could regroup and go again, but as I stood up, my vision blurred and I hit the floor. I couldn't do it anymore. I had to give up and go home. My mum came to get me, as much as I didn't want to leave. It wasn't fair that I had to leave. Why was Crohns trying to ruin my life? Trying and succeeding! Always there pulling me back when I was doing my best to get on. It had won. It had got what it wanted. I was beaten. Defeated.

Saturday morning I woke up after another disturbed sleep. Despite taking pain meds and my sleeping tablet, I still woke up tired after a rough sleep. I felt slightly better than the previous night which was one positive. This evening I had plans to go to a charity ball with my boyfriend and family and there was no way I was not going. My mum said if I didn't feel up to it to stay at home, but there was no way I was letting Crohns win again. I spent the whole day in my pyjamas on the sofa reserving all my energy for the night. My mum, my boyfriend, my sister, my dad all kept saying to me I didn't have to go. But I did. They didn't understand. I couldn't let Crohns win. I couldn't have my life ruled by it and be told when I could and couldn't go out, and how I could live my life. I was going, and that was the end of it.
Typically, as the day went on I felt worse. I felt faint, and constantly felt like I was about to faint. I felt out of it and like I couldn't focus on anything or even stand up. But I wouldn't succumb to it. I'd keep going. It was time to get ready so I got myself in the bath. I thought it would make me feel better and ease my tummy pain, but I was struggling to even keep my head up. My sister came in and held me while she washed my hair. I knew she couldn't understand why I was putting myself through this and why I was forcing myself out, and I couldn't even explain, but I just knew I had to go out. Once out of the bath I laid on my bed for a while and tried to relax. But I was unable to sleep and was feeling anxious about getting ready and being late. My sister did me hair for me whilst I sat on the floor. I didn't even have the energy to lift up my hair dryer so I'm so lucky she did it all for me. I said I could do my make up myself, I didn't want to make her even later. I stayed sat on the floor doing my make up, then got up on my knees to go get something then SMACK. I fell face down onto my bedroom floor. I laid there for a while and started to cry. Silent tears spilled from my eyes and landed on the carpet. Why me? Why was this happening? Was I a bad person? Did I deserve this? Was I being punished for something unbeknownst to me?.. My sister came in and picked me up. She cuddled me close and let me cry into her. She said we didn't have to go, she'd stay in with me and we could watch films and chill out. But I did have to go. I just had to. I know it breaks her heart to see me like this, and it breaks mine to put her through it. She is such a strong person and without her beside me, I'd find all of this ten times harder. After a cuddle and her sorting me out, we got dressed and were ready to head out. Showtime. It was time to turn on my smile. Put on the fake face to hide the pain and tears. To pretend that I was 'fine'.

As we walked into the venue I felt wobbly on my feet. I had to be careful with each step I took as I felt like I could keel over at any second. But I had made it. That was the most important thing. I was out, I was here and Crohns hadn't won.
We had a lovely three course meal (I had a special one for me!) whilst there was a singer and raffle and auction going on. I was really having a good time and even decided to have a drink - my new tipple of vodka and water! I wondered whether it a wise decision to have alcohol given how I was feeling, but I was to the point now where I just thought f*ck it. I'd had enough and wanted to escape, and having alcohol gave me that feeling. I only had five drinks and for me that was plenty. I was drunk and I loved it. I danced all night, and even took my shoes off! (this is something I never do so I must have been properly 'merry'). Whilst I was dancing I closed my eyes. I was enjoying the feeling. Even if only for a night I had escaped. I was the one dictating, not Crohns. Even though I could still feel my tummy pains, the alcohol numbed it. I wasn't in the mood to worry. I was in the moment. I could worry about it in the morning.

A smile can hide a thousand tears

Sunday morning I woke up surprisingly hangover free! I think Vodka/waters are the way forward. It must be all the water I was drinking saving me from the hangover. And... I SLEPT THROUGH THE NIGHT!!! For the first time in I can't remember how long, I didn't wake up through the night! I was so happy I ran into my parents room like a kid on Christmas morning to tell them. Mum's response was to consider throwing out the tablets and just having vodka before bed! haha, only kidding. But I felt happy. I felt like a champion. Even if just for a day.

XOXO Crohnie Girl

Steroids - *ding ding* round 3!

It's crazy how a person can feel so exhausted from doing nothing. When I'm under the weather, all I do is lay around so to still be tired is mad. But that's a part of my joyous condition - fatigue. So on top of feeling crap all week and in terrible pain, I've also been feeling completely exhausted. I've spent the rest of the week working from home as I have just been feeling so bad. Waking up through the night in pain and needing the toilet, feeling exhausted and nauseous during the day and feeling downright fed up that I'm still not better is how I've spent my week!

After the phone call with the nurse on Tuesday, I felt really low. I had all my hopes pinned on it and really thought she'd have a solution for me. I got upset on the phone and couldn't really speak much, so I did email her the next day. I apologised and said that there must be something else we can do as I can't continue like this. I didn't hear anything back from her for a day and it made me feel more upset, but I did wonder that she could be speaking to my consultant and luckily I was right! She rang me the next day with the news she had spoken to my consultant and they had decided to put me back on a 2 month course of steroids. This time it wouldn't be prednisolone I was taking and she said I would be out on a 'less aggressive' form of steroids. I was happy with this as it meant not having the horrid side affects I had had before, plus it meant I was going to feel better. If only for 2 months at least!  So even though I was still feeling poorly, I had cheered up that something was being done.



I started the steroids on Friday with a positive attitude I would start to feel better. All week I had felt bad and been sticking to shakes or gluten free toast to ease my symptoms, but as it was Friday night my mum wanted to make a nice dinner to cheer me up. Even though my symptoms were some what slightly better whilst on the shakes, I still was suffering with frequent toilet trips which made me feel fed up, and even more tired. So I was aware that eating dinner could make the symptoms worse but I didn't even care. It was Friday night and I'd had a crappy week, I was eating food!! Mum made a really nice chicken dish with veggies and potatoes. My friend Stefania came over for the evening so had dinner too. It was really nice to see her. I always find when I'm around people it distracts me from how I'm really feeling and cheers me up. After dinner we had a gluten free apple and caramel cake my mum had made which was to die for!!! I had to have two slices! Just sitting in front of the telly with tea and cake having a gossip was the perfect evening for me. Although I do miss going out some nights, I'm still able to enjoy nice nights in. Nights in don't have to be spent on your own feeling sad and lonely! And this is what I'm learning now, all new ways to enjoy myself and new ways of socialising with crohns. 

Having a week and weekend totally chilling and focusing on feeling better really has done me the world of good. I woke up on Sunday to the sun shining after a nice lay in and felt happy. I was starting my day with a smile and wanted it to stay. I woke up the house hold and got everyone out for brunch in Leigh on Sea. We took my dog and she loved it. She had a sausage while I had scrambled eggs on gluten free toast. Being out in the sun was lovely and the fresh air felt amazing after being cooped indoors. We decided to go for a nice beach walk with the dog but ended up getting a little lost... This was a problem. The further out we got, the further away I felt from a toilet. I did feel better than I had done in the week, but I still wasn't 100%. I suddenly felt the need to go and panicked. I needed to find the toilet so headed to the public toilet sign just to find it was locked... It was during the middle of the day in a busy area and the toilets were shut. I was appalled at this and really don't think it is right. There weren't any shops near by and I didn't know where the next toilet would be. It made me feel panicky which makes my symptoms worse. I wanted to head back quickly and find a toilet. Luckily we sped up and came back to a strip of shops where one let me use the toilet so I was fine. I was all ok but it still didn't take away the horrid scared, panicked feeling I felt. That is easy enough to put me off of going out and leaving home which is awful. I think people really don't understand Crohns and the real affect it has on sufferers. Not only is it the physical affects, but also the mental impact it has on people. I could easily see how it could lead to living life as a recluse and feeling lonely and isolated. But at this moment in time I am feeling determined. I won't let it control me and I will continue to live the life I want to live.

So after a Sunday very well spent, I'm looking forward to getting back to work and cracking on with my positive attitude!  Wishing everyone a happy, fabulous week. 

XOXO Crohnie Girl 

 

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