Sunday, 29 September 2013

Allergic Reaction & a Big Work Load

Hi Guys!

In the past few days I have had lots of wonderful high profile people tweet and spread the word about this blog! The likes of Hilary Alexander, Abbey Clancy, Gemma Cairney, Frank Turner and for all of you Strictly fans out there, Karen Hauer and Kristina Rihanoff! I am so grateful that these lovely people  have helped raise awareness for a disease that not many people understand or know about. It is also fantastic that it is getting people talking about stomas and ostomies - something which many people are too embarrassed to mention.

The past week has been spent babysitting and doing Uni work - it has taken me all week to get back in to the swing of doing work and being busy every day. It sounds terrible but I haven't had to be busy for a long time. It does, however, feel so good to use my brain and get stuff done. I am a bit concerned with how much I am taking on - I start my new job next week and have been terrified by the amount of Uni work I have to do. It is very frightening.

I also managed to complete my first ever cardio gym class for the first time since Margaret. I have of course done my run and a few pilates classes but as yet had not done more than thirty minutes of cardio exercise. I arrived to the class a bit apprehensive but had picked a circuit class which was described as 'more relaxed' and 'great for beginners' - I figured this was a good place to start. There were only five other women there initially - they all seemed pretty relaxed, one even came with a cup of tea, I did worry that I was taking on a particularly easy class that would end up being a waste of money. But I tell you, these women were incredible. We were joined by ten or so more women of varying ages and it was quite the work out. I really did enjoy it but also came away sweaty, red faced and pretty gross.

The problem I have found in the past with a couple of other classes is that by half an hour in I am struggling to keep up. Hopefully this is something I will be able to improve on and will be tackling some hard on work outs!

Friday I ventured out on a dog walk with Matt and Jake, which was brilliant except for a nasty allergic reaction. I don't know if I inhaled something but I somehow came in to contact with something which caused my eyes and sinuses to swell up, my eyes were itchy and streaming, I couldn't breathe through my nose and my whole face was itching. The symptoms didn't wear off for a good 24 hours, which was not ideal for baby sitting. I looked down right terrible!

Saturday Matt headed off to Southampton for a Palace game - leaving me at home with his 'lovely' Palace jumper. I hate the thing and threatened to dispose of it whilst he wasn't around!

I have begun to write my dissertation which is about gender stereotypes in Disney films and how they effect children.
I am also at the start of figuring out my final major project subject and I think I am going to base it on IBD and body image. It is only early days but I may need to call on all my readers to help with things such as surveys and interviews.
Is this something which any of you would be okay to help with? I am looking for any IBD sufferer and in particular those with a stoma.

This next Friday is my 22nd birthday! It also marks a year from when things went particularly down hill, so I can't wait for this birthday to celebrate getting better.

Lots of love

Tuesday, 24 September 2013

The Scarf

Hi Guys!

So I am pretty much recovered from nasty tonsillitis. It is amazing how quickly the antibiotics work, and although I have a couple days left to take, it should be all cleared up soon! You'll be pleased to know my mood is also better, and I am back to my usual self.
Friday night I babysat before heading home to my brothers 17th birthday party. Matt and our friend, Dave, were on 'bouncer' duties - making sure everything was under control.
Saturday Matt and I headed to The Royal County of Berkshire Show, which we go to every year. Taking Matt to this show would be like to taking me to Disney Land. It is SO up his street, with all sorts of animals, food, power tools and landscaping/farming equipment. The highlights of the day included walking through the food hall, trying to nab as many freebies as possible and going round a 4x4 track. I also came across an amazing find! I found myself a scarf. & not just any scarf... This scarf has dachshunds on it!
For those of you that don't know, I am dying for my very own long haired miniature dachshund! This beautiful scarf is covered in the little dogs. There I was strolling along with Matt before spotting it, screaming and running across the streams of people to get a closer look! I looked completely ridiculous but of course I had to get it and Matt haggled so it was cheap as chips. I was a very happy lady!

We then walked past a fair ground like stall with two games to try and win. Up for grabs were pretty large, stuffed farm yard animals. Most of the time I wouldn't have wasted my money; everyone knows these stalls are designed to be a lot trickier than they look and people rarely win, but my eyes set on the funniest toy pig. We are talking quite a big, pink, fluffy, stuffed pig. I decided to give one game a go, whilst Matt tried the other. There we were stood amongst small children trying to win a stuffed animal. Unfortunately 15 minutes and £7 later neither of us won... unlike the two boys next to us who BOTH won and picked a huge cow each. As much as I loved the pig, we decided that we wouldn't pay the £25 it cost to buy it out right. Looking back this was a very sensible decision.
We spent the rest of the time wandering amongst the stalls, I came away with some gorgeous bread and obviously my beautiful scarf. Matt came home with a chain and some jump leads - very exciting - but he was a happy chappy! Between us we also picked three different flavour ciders to share! 

We also bought my Mum a metal, painted cockerel - I know, sounds ridiculous, but she loved it and it does look pretty smart in our conservatory. 

On Sunday, Matt and I drove to Crystal Palace to watch them play against Swansea - they lost but I had a great time, despite the area we were sat in smelling of yoghurt...
It has been so lovely to spend time with Matt and we had such a good weekend. I was shattered and fell asleep super early on Sunday night but it was definitely worth it. 

This morning was my first day back at Uni for third year. I wasn't nervous about the work or anything, I was however nervous about Margaret. This would be Margaret's first day at Uni. I wasn't concerned about actually dealing with Margaret but I was pretty nervous about the fact that everyone knows about her. I knew it would only be natural for people to look and see if they could see her or ask how I was doing, but the thought of going in to a huge room where many people know I have an ostomy bag was pretty daunting. I didn't want people to feel awkward or not know how to approach me. 
In the end it was all fine, and I barely gave Margaret a second thought! The work load however, is incredibly scary, but I guess that is what third year is all about. 

Brand new notebook - best part of stating a new year!

I now have a bit of a favour to ask you guys. 
My friend, Lottie, is also in her third year of her degree in Photography. She is currently brainstorming ideas for final projects and has discussed looking at people with IBD. 
I was wondering if any of my lovely, fellow IBD sufferers and stoma owners would be willing to be contacting by Lottie for some more information. If this is okay with you, please comment here or message me on my twitter @gabicox12

Thank you all so much! 
Lots of love

Friday, 20 September 2013

Your Help is Needed

Hi Guys!

I have a favour to ask you all. I am starting to put everything together for my dissertation & I would be so grateful if you could all fill out a survey for me. It will take less than 5 minutes and is only 8 questions.

Thank you all very much
Lots of love

Tuesday, 17 September 2013

Down in the Dumps

Hi Guys,

So I am not feeling to great at the mo!
I started feeling a bit gross on Sunday afternoon - headache and sore throat, so I took paracetamol hoping it would blow over. I woke up that night at about 3am, feeling down right awful. My head was pounding and I couldn't swallow. I topped up the painkillers and tried to get back to sleep but it was so disrupted and I tossed and turned the whole night.
Monday morning came and I was feeling no better, I had a temperature of 38.4 and my throat was only getting worse, weirdly I didn't have a blocked nose, sinus issues or a cough. I ended up having to miss working at the school. I set myself up for a day in bed, and slept away the hours feeling anxious and sorry for myself. I tried to eat some lunch but only managed a mouthful of chicken and a chip, dinner was no better with only a mouthful of Dads home made pork burger - which is usually a favourite of mine! I felt so run down, tired and poorly. I got myself into a a bit of a state Monday night, I think I was over tired, hungry and feeling terrible - well thats what I'm blaming my over emotional state on anyway!
Last night was yet another disrupted sleep. My temperature was climbing and I was alternating between being freezing cold with goosebumps to having sweat run down my back. I had to change pyjamas a couple of time in the night.
This morning I felt no better, in fact, I felt ten times worse. My throat is so bad that I am really struggling to drink or swallow saliva, let alone eat anything!
After a day of feeling horrific and wishing someone was home with me, I booked myself in to see the Dr. Mum drove me down after work were I was swiftly handed a load of penicillin. I have tonsillitis. Lucky me eh! My non existent immune system has let another horrible bug swan in and take over.
I now have a stack of antibiotics, Lemsip, Strepsils, paracetamol, asprin for gargling and ice cream in the freezer. I have yet to eat anything more than a mouthful since Sunday night and I am honestly feeling terrible.

Tonsillitis symptoms aside, I am also royally fed up. I am missing out on a placement that I was so so excited about! It feels like every time I spend more than a couple of days out in the 'real world' I swiftly get knocked back down. At Vogue it was the stomach virus and after two days with the children at the end of last week, I now have this. It makes me very anxious about getting through anything. I know I was poorly for nearly a year, I had major surgery to recover from and I am on a whole host of immunosuppressant drugs - but this is a joke.
I am thoroughly annoyed and down in the dumps. I want to wake up and not be tired, not catch every bug going and not have to wonder how I am going to get through the week or even day ahead.

I always try to have a good positive, outlook on life and the future, despite everything, but it gets hard when I am constantly feeling knocked back.
I am also very conscious of being 'ill all the time', to my family, friends and Matt is must feel like it is always one thing after another. I hate being the 'ill one'.

Marget is also not impressed, I am definitely dehydrated and due to not eating anything I have only had to empty her once all day... At least I have a break from all that, & may drop a few pounds eh!

Sorry for the rant - it is definitely fuelled by lack of sleep, food and feeling awful. I do, however, feel it is important to document these ups 'n' downs - it's not always plain sailing.
I will of course be back soon, and hopefully in a much better mood.
Lots of love

Sunday, 15 September 2013

Change of Direction

Hi Guys,

I want to start off today by saying a huge thank you to you all. I forgot to mention but a few weeks ago I hit 50,000 views on my little blog. This is all down to all you amazing readers, so thank you all so much for continuing to read and share my story. Please do keep on sharing and help me raise awareness for this nasty disease and living with a stoma.

As you all know I managed to get a stomach virus of some sort last week but I am happy to say I am feeling so much better! One thing which has yet to get completely better since the surgery is my level of tiredness. I am always feeling tired, when people ask how I am I have to stop myself replying with, "Yeah I'm good, just tired"...
I hate it. I wake up tired, and spend all day at a level of tiredness before going to bed exhausted. I think most of the time if I closed my eyes I would drift off in minutes. Although I am not feeling poorly or sick, I am still always feeling a bit under par. In fact, I can't remember the last time I woke up and felt ready for the day - no matter what time I get out of bed. It is insanely frustrating!
- If any of my fellow Crohn's / Stoma friends have had the same, or have any tips please get in touch and leave a comment!

One day, years ago, when I was having an Infliximab infusion (an infusion of drugs which you are given through a drip over the course of a day) I had a lovely nurse looking after me. One of her best friends had Crohn's and had described it so well.

"Having Crohn's is like you are always recovering from a nasty cold. The few days afterwards when you are fully functioning but feeling a bit run down and under par - that... but all the time"

She had it bang on. I am always feeling under par. For a while we thought that it may be down to being anaemic or something but I have had all of my vitamin levels checked and everything is normal. According to my Dr it is simply having the disease and having recent surgery. Don't get me wrong I still try and do everything I want to - I just do it tired.
I hope that one day I won't be so tired all the time and will be able to wake up refreshed! Heres hoping anyway!

I have also had a big change of thought in regards to my future and career. After a lot of thinking and going back and forth I have decided that the fashion industry is just not for me. I love the idea of it and some aspects of it but after many internships the reality is just not for me. I have watched people slog it out at the bottom of the pile for years and years before being employed as an assistant. I do not like the idea of getting my first permanent job at the age of 30 having worked as an intern or on minimum wage until then. I also do not want to live in London, I love the city but at the end of a long day I want nothing more than to leave it all behind. Since living in England I have always lived in the country and can't ever see it being any other way. That would leave me with a commute, which I truly hate. I am so grateful for all of my internships and work placements and they have helped me beyond belief. They have made me realise that the industry just isn't what I want. I still love it and have been really lucky to have been a part of it.
Luckily I have always had a career idea in the back of my mind, and that is teaching. I have always loved children and have worked with them since I was 16. I have had various after school and holiday club jobs as well as childminding and babysitting. I have done work experience in a few schools and have always loved it.
It really hit me when I was helping Matt's sister, Hannah, sort out her first classroom for the start of term and I found myself so jealous. It was the weekend before Vogue and all I could think about was that I would much rather be teaching than heading in to London to work at the magazine.
I have decided that after my final year of my degree I will complete my PGCE to become a primary school teacher. Big news and big decision eh!

This past week also marked my parents 25th Wedding Anniversary. They spent five days in Venice and returned on Tuesday, which was their actual anniversary date. My brothers and I put together a hamper for them of all their favourite foods and drinks. I also made a scrapbook of their time together, from their childhoods, through their teenage years, years as a couple, wedding day, honeymoon and births of us three! It made my Mum cry and cry - which of course was the desired effect after the hours it took me! We then went out for a family meal, the five of us and Matt, to celebrate!
I love my parents to death and they have been incredible throughout everything I have been through.

I also sorted out a photo to be taken of the three of us and the dogs. Mum has mentioned many times that there is no up to date photos of us all so I thought it would be perfect to organise one. I tried various times to sort out a professional photographer but every time it had to be cancelled. In the end we had Matt take a few in the garden, which actually turned out great! It took so long to get the dogs to do what we wanted but after many attempts we got a few which were okay!

The coming week is going to be spent doing some work exp in a primary school before starting Uni and childminding the week after!
Lets hope I can stay awake! I will leave you with some photos of my week,

Lots of love

Monday, 9 September 2013

What A Week

Hi Guys!

So last week was my first at Vogue. Unfortunately I'm not allowed to blog about my time there. What I can tell you is that I am not going to be continuing with the next two weeks there. 
On Friday I was sent home at midday after being sick twice whilst there. I felt dizzy, shaky and had a pounding head ache. Every time I used the lift or stood up I felt I was going to faint. 
Luckily they sent me home and somehow I managed to get myself home, despite it taking over two hours via tube and train. I honestly thought I was going to pass out on the underground. I had a lucozade and crawled in to my bed and slept for hours. I did feel a bit better when I woke up but have spent the last few days feel incredibly nauseous, a bit headachy with tummy ache and bloating. I'm pretty sure it has nothing to do with Margaret or Crohn's and just a bug I have picked up but I know they can be more dangerous if you have a stoma as if you are being sick you can get very dehydrated. I think working so hard for the week has also left me absolutely exhausted. I was not only mentally so tired but also physically. After not doing anything for months my body is just not used to working so hard. Having to lift heavy things and walk for hours on end has made my whole body hurt. Safe to say its been a pretty hard week and made me realise how much below par I still am. 

In other news Margaret has also not been a happy bunny. 
I ran out of my new convex bags so have had to resort back to using the original bags which I had all the leaking problems with, until I got the next delivery.  Unfortunately the leaking problems continued with the first happening at Vogue. Luckily I noticed straight away as it was just after I had been sick... Great! There I was feeling horrible nauseous, shaking like a leaf having to change the bag and clear myself up. The fact I then threw up again is not really surprising. 
The second leak happened that night, I woke up Saturday morning with half the bag lifted off and in a right state. The third leak happened later on that day but was luckily only a minor one. However my skin was now in a pretty poor state. The under side area was incredibly itchy, becoming red raw and quite swollen. A cool shower and twenty minutes with the bag off have helped things but it is still causing me so much jip! A final leak happened today whilst in Waitrose, fantastic! I leant on the counter to pay and felt warmth. This was of course a bad sign as you shouldn't be able to feel anything as Margaret has no nerve endings and she is the only area that should come in to contact with any output. Thank god I was paying as it happened so I could swiftly make my way home and change the bag! I was in luck that the new batch of convex bags had also arrived meaning there should hopefully be no more leaks! Fingers crossed eh!?

This photo doesn't really do it justice!

I haven't really been doing anything else over the past week. My whole time has been revolving around this internship. I have been getting very little sleep, waking up early and getting in at 7:30/8:00 by which time after dinner and a shower I am ready to curl up in bed and sleep! 
I have, however, been helping Matt with some work bits n bobs including addressing hundreds of envelopes! Safe to say we are both ready to never see another stamp again! 

Will catch you all up again soon! 
Lots of love! 

Sunday, 1 September 2013

A New Bag, A New Job and a Cockerel Fight.

Hey Guys!

Firstly a big sorry that I haven't posted in so long! A whole two weeks. I really have been incredibly busy and haven't had any time to myself to write you all a post. I will aim now to update you on everything, so it may be a pretty long post!

When I posted last I had four sticky bits of different stoma bags stuck to my tummy, to see which ones I may or may not have been allergic to. One fell off within a few hours and no matter how many times I stuck a new bit on, it kept flaking off - clearly that adhesive wasn't for me! A second one became itchy and irritating so I removed that one. The two that were left both seemed to be fine, I had no irritation and they both stayed stuck to me. I headed to see the stoma nurse, who was so lovely, and she sent me home with four of each to try and out and see which I prefereed. She started me out on a Welland bag which is a soft convex. You may remember a convex bag is one with a domed part, which helps to push Margaret out more and hopefully stop any skin irritation, leaking and seepage (another word I hate). The difference between a soft and hard convex is whether that sticky out domed part is a bit flexible or solid. Ideally you want a soft convex as it is a bit kinder to your skin and easier to have clothes over the top. So off I headed home with Margaret safely strapped in to her new soft convex bag.
After about 24 hours I had had enough. The new bag was not going well...
I scratched and scratched at it, thinking it may have been down to the heat and sweat as I had done an allergy test so did not believe it could be that! Eventually I felt the bag and all the adhesive along one side had completely come away! I couldn't believe it. I took the bag off to find red raw skin where I had clawed away at it in my sleep. I could have cried the skin was so sore and itchy. I decided then to stick the Dansac bag on (the hard convex). I stuck it on, not really believing that it was actually going to work. Unfortunately due to everything I have been through, I do not have that much faith in medicine or medical people. Every time I try new things, they never seem to work!
Over a week later and the new bag is working brilliantly. I am really happy with it.

The only downside to the bag which is working properly is that it either comes with a solid fabric cover, meaning you can't peak inside at Margaret and check that she is okay and that the bag is fitted nicely. Or it comes with no fabric, meaning you can fully see Margaret and all of the contents... Now, I am not squeamish but it is not pleasant to have to look at your own poo whenever you look down. It is especially not very nice for others to have to see, especially Matt. Some may not mind, but I can't help but feel it is a little unnecessary. For now I am wearing the clear bags, until I am confident in putting them on properly. Due to this my lovely Mum has made me some covers for the bag.

She has always been really great at sewing and that sort of thing, so whizzed me up a couple of bags in no time. I am now building quite a collection of different colours and patterns to wear, depending on my outfit or mood.

The stoma nurse also decided to skin patch test me with different adhesive rings. The adhesive rings are designed to create an extra barrier between your skin and the bag, helping to protect it and help stop any chance of leaks. The slims are like sticky play dough which your mould to fit around your stoma (Margaret).
I have been using a Pelican brand, but she though we'd test out some others, and see which is the best for me!

It turns out the brand I have been using is the one that works the best.

Aside from Margaret I have been flat out busy! I have re enrolled with Uni, ready for my third and final year! It is a scary thought and although I am very jealous of my friends graduating I am also very excited to get it done and get back to doing work! Last year was a bit of a wash out and I was barely in, It'll be great to get back to it, even if it is a bit daunting.

This past week I went back to working, properly, for the first time in about a year. I have of course done the odd bit of baby sitting and childminding but nothing long term. It was a bit nerve-wracking but I spent four days looking after a 5 and 6 year old. I had a good time, but it was truly exhausting. I worked for four 13 hour days in a row, which is a lot for anyone let alone when you haven't worked in a year and you are looking after two small, energetic children! I am of course a brilliant mix of Nanny McPhee and Mary Poppins! We've gone to the library, swimming, to the park, had a picnic, walked the dog, fossil hunting and trampolining. As well as all the standard children stuff like bath time, meal times and homework. It was a bit of a shock to the system and although it really tired me out, it was good to feel productive and like a normal person again!
The family I am working with has a load of chickens and two cockerels. I don't mind them at all and pretty much ignored them until my first afternoon last week. I was innocently stood there, watching the children bounce away on the trampoline, when one of the cockerels started pecking at my feet. I just assumed it was doing its thing and saying hello, so moved away to the other side of the trampoline. It was then that I looked around and saw the evil cockerel start to charge towards me. It let out this weird battle cry whilst running at my legs. It started kickboxing me and scratching at my legs and feet. I batted it away and ran for my life. I swear, it was evil! It chased me out of the paddock in to their main garden.  My screaming and running delighted the children who yelled "Oh do that again!"... I was terririfed. This animal wanted my blood, and nearly got it! I had scratches over my fingers and down one leg, even though I had been wearing leggings. One of the children put it brilliantly when she said, "I don't think it likes you being in our garden". I think she might have been right!

Yummy dinner!

I know I am supposed to take it easy and not over do it but it is very hard when life isn't waiting for you to get back on track. Sometimes you can't dwell on the fact you are tired and dealing with a lot more than most, and you have to just suck it up and get on with it. Getting back in to the real world can be really nerve wracking and scary, and working out how to deal with Margaret on top of it all is tough but I am so proud that I'm getting back in to the swing of things.

So, that has been my busy week and this weekend I didn't really slow down too much. Yesterday I celebrated my cousins 18th which was lovely. It was the first time my extended family had seen me since the op and I was a little nervous but it was so lovely to catch up and I had a really great day! Today I helped Matt's sister, Hannah, set up her new classroom in her new school. She has just got her PGCE and is teaching Yr4 as her first class! I also caught up with some friends for a while. My life really is coming back!

Well, tomorrow is Vogue.
I am very nervous and very excited. I am struggling with what to wear as well as getting a bit worried about the incredibly long days and horrible commute I am going to have to do for the next three weeks! But hopefully it will all be worth it and I will be able to put it on my CV and have an incredible experience!

I will let you all know how I get on & will leave you with this brilliant text from my Mum!

Wish me luck!