Calamity Gabi

Hi guys,

So I like to keep things interesting and can never stay in one piece for long.
As I may have mentioned for the past couple weeks I have been having phsyio on my weak knee, although there is no injury there it was left a bit unhappy after the on/off arthritis. The physio and gym sessions have been going really well and my fitness and strength levels are at their highest. I went to the physio on Monday morning, she was super impressed with my leg strength and thought the bad leg was actually now stronger than the other! Great news all round. She suggested I do the normally painful activities like cycling and swimming lengths and sent me on my way with a final appointment booked to make sure things were still going okay.

That evening I decided to head to a Yoga Fitness class. I have done yoga and pilates before and my brother has gotten really in to this class in particular. A group of us went down and things were going well. It was a tough work out but my hyper flexibility meant that a lot of the moves were quite easy. That was until we moved on to a one legged lunge in to a knee raise. All my weight was on one leg and it involved balancing. We were supposed to do a set of 10, and I think I managed maybe 6 before it was really painful, I decided to skip the rest, my knee could not hack this. The constant switching between bending my knees and stretching them out had my legs feeling like jelly, but I assumed this was normal. At the end of the class I wasn't in an awful amount of pain so put it down to a good work out.

The following morning I woke up with some minor swelling in my left knee and a lot of stiffness, I just carried on with my normal actives. The next morning the knee was worse, I iced and elevated and took ibuprofen in the hope it would sort itself out. I had definitely done too much but went on a stroll, thinking it would loosen it up. On Thursday I woke up and the knee was huge. The swelling had gotten even worse and it was now really tricky to walk on. I still didn't take it very seriously and continued to try and act normally. By that evening it was the biggest it had been and nothing seemed to get the swelling down. We decided if it wasn't better by the following morning I would head to Minor Injuries. I had already tried all the normal things, pain killers, ice and elevate, normal movement, resting & hot water bottle so I was getting a bit concerned.

Friday morning came and it was no better. If anything, it was worse. My knee was now double it's normal size I was unable to walk or drive. I couldn't bend or straighten it, it was stuck in a weird position. Minor Injuries it was. I eventually saw a nurse who took all my knee history and decided I should be seen by the Dr as an emergency appointment as there was nothing much they could do. Later that day I went to my GP, who knows me well by now (I've been in and out of there far too many times) and we were laughing at how ridiculous it was that I had managed to hurt myself doing yoga of all things. As she tried and failed to bend and straighten my leg she told I needed to go to A&E... One week after I was discharged for Margaret playing up I was looking at having to go back. I think my face looked horrified and we agreed that we would wait over the weekend and it it was no better by 9am on Monday morning, I would see her again and go up to A&E. I asked what she thought needed doing and she replied, "an op".
Oh great!
I left with anti inflammatory tablets and the promise that if it got any worse I would go straight in.

Saturday was tricky but no worse, I crutched around town with Mum, rested it, iced the knee and took the tablets. I tell you what, crutches are exhausting, but at least it's a work out for my arms and core!  Unable to move my knee I had no choice but to sleep sat up right, with my leg propped up on a cushion. I couldn't lie on my side, how I normally would and was in quite a lot of pain. I drifted off at around midnight but woke up at 2am with such a sharp pain up my leg. I think I must have tried to bend it in my sleep - stupid sleeping Gabi! I failed to go back to sleep for the rest of the night. The pain was worse than ever and the swelling hadn't gone down.
Sunday morning I had had enough, it was getting worse, no better, so Mum took me in to A&E, again.

This time I wasn't at risk of getting really poorly so wasn't rushed through. Instead I had to sit and wait for a Dr, two hours later I was seen by a lovely lady who examined, took down all details and sent me off for an Xray. I was also given codeine for the pain, thank god! The Xray came back clear meaning there were no breaks to my knee cap or anything and the swelling wasn't down to fluid. This meant it had to be tissue damage. She suspected a tear in my meniscus but couldn't be certain, but my knee was locked, which explained why I couldn't move it. She said that due to it not being a break I would not be admitted to hospital and could go home. She put in and urgent referral to the knee clinic for me and hoped I would be seen soon.

I explained that it had gotten worse over a week and that I was getting pretty fed up. She suspected it would be some weeks before I was back walking/driving again. I then pointed out I had a city break in Paris booked for 4 weeks time, she just crossed her fingers. She hoped it would get back to normal on it's own and if not the knee specialist would be able to help. I left A&E with a pack of codeine feeling pretty down in the dumps.

Riding the hospital buggy

Since then my knee has gotten no better. The swelling has remained the same and I need codeine to help with the pain through the night. I am still on crutches and not able to put any weight on it. I don't see how it is going to get better on it's own and am just waiting for a referral. They've said it could be up to a 6 week wait for urgent referrals... what's urgent about 6 weeks I don't know. Until then, if nothing changes, I am pretty stuck, literally. I am lucky in that I mainly work from home and still with my parents so have help, it would be so much worse if this wasn't the case. I have had to turn down other work and don't really have any idea when I'll be on my feet again.
It is the most frustrating thing ever. I am gutted about potentially missing out on Paris, it's my only break booked all year. I am also due to move out the day after I get back which could potentially also be an issue if I'm still not back on my feet.

The left knee which I can neither straighten or bend

Morally of the story, don't exercise.

Margaret continues to be on strike...

Hey guys,

So, I was now on my way to A&E, pretty fed up and little nervous as what could be going on. I assumed a block but didn't know how they even treated one if that were the case. I had read some horror stories but didn't think I was in any way poorly enough to consider those. For starters, I wasn't really in pain, when everything you read says that with a block you should be in agony.

We couldn't decide which hospital to go to, the one with my surgeon who made Margaret or the one with my consultant who knows me and my condition very well, we opted for the consultant one. Upon arrival I realised I had never been to A&E before! I wasn't a very accident prone child and although I've spent hundreds of hours in hospitals, they've never been in or via A&E. I was pretty excited to be going in, I'm a huge fan of medical based dramas and shows so found it really interesting... oh what a loser I am.

I checked in at the desk and sat down for what I thought and heard would be hours of waiting. 10 minutes later I was called in for my assessment. This is undertaken by a nurse who goes over whats happened, makes a file ready for when the Dr's call you when its your turn. She took down a couple of details before taking me straight through, out another door. To the poor people in the waiting room, it must have been ver confusing. There I am swanning in like I own the place, looking completely healthy and un-injured being taken straight through with no wait. They got me a bed within a couple minutes and had me dress into a hospital gown. I had ended up in Majors. For those that don't know in A&E there are three areas, Resus, Majors and Minors. Resus is for the critically ill, things like terrible breaks, strokes, heart attacks etc. Minors is the walking wounded, breaks, sprains, cuts etc and then there is Majors for the people in between who need urgent care but aren't in a life or death situation. Somehow I had walked right into Majors.

I was quickly surrounded by 3 nurses who were all so so lovely. I'm very used to being in medical environments so wasn't really nervous but if I had been they would have settled that straight away. they were all around my age, maybe a couple years older and it was nice to have a chat. I had all my OBS done (blood pressure, heart rate, temperature) before having a lot of blood taken and a cannula put in. I looked at my Mum, things seemed to be getting a little serious, quite quickly. I was given a bay, Number 12, which made me very happy as its my favourite number.

A Dr came to see me and I had to give the details for the 6th time that day, I then had an X-Ray of my stomach to see what was going on.

I then spent an hour or so waiting to find out the results of the tests. This provided excellent time for people watching, one of my favourite activities. After half an hour I knew what was going in most of the bays around me thanks to a lot of loud talking and nothing more than a curtain between us. The Dr eventually came back explaining that although my bloods were completely normal, the X-Ray had shown something partial obstructing my intestine. They weren't sure what this was, whether it was something medically that had gone wrong or food. She explained that she would be now talking to the surgical team about how to proceed and possibly how to treat it medically.

Surgical team?! Things seemed to have escalated rather quickly. One minute I'm ummming and ahhring about whether to bother to see anyone, the next they're talking about surgery! Thank god I had come in. I freaked out a little but tried to stay calm until I knew what was going on. My main worry was that my surgeon, who I really trust, is based elsewhere and I didn't know how that would work. The next time she came in, she thought that the surgeons wouldn't be getting involved (PHEW) and that the Dr's would try and treat it medically. When I asked what this would involved, she explained it would involved putting an NG tube down through my nose and into my stomach, to pump out what is in there. At this point I really freaked out. It's odd that I was more scared of the NG tube than I was about surgery. Ever since my awful colonoscopy experience a couple years ago I have a big fear of being put in pain, whilst awake, when something is out of my control. If I'm going to be asleep I'm not concerned at all but if I'm awake and know I'm out of control of what is being done to me, I really don't cope well. It's safe to say I got in a bit of a panic, which the Dr walked in on. Great! I'm always super embarrassed by crying in public, when normally I deal with things pretty well. She was really kind and explained that I would be being admitted to a ward and so wouldn't be going home today, I can't say I was best pleased but didn't have much choice.

They wheeled me up to the ward at about 11:20, I was placed in what seemed like quite a quiet bay on the Acute Medical Ward. There was just one other elderly lady when I got there who gave me a cheerful wave! I always try and make friends with the people in the beds around me, it makes the time there a lot less miserable. I had my OBS done again before being given a tablet designed to kick start my bowel in to moving. No mention of NG tube was made, which I was incredibly relieved at but also a little confused. Things went from surgery to NG tube to one small tablet in the space of a couple hours. I also hadn't been told what had caused the block or why it had happened. I felt pretty anxious, with the whole not knowing thing. I like to have all the information and to always be kept in the loop.

Mum left for the night about half an hour later and I settled down with an audio book to try and get some sleep...

Sleep never happened.
About 20 minutes after Mum left they finally turned out all the lights, it was about 1:40am ish, I was just drifting off when a lady was bought in, followed by a 3 or 4 person medical team. The lights went on, lighting up the whole bay. The poor lady was really poorly and had Dr's and nurses in and out for hours. She was in the bed next to me so there was no chance of not being disturbed. At around 4:30 she was settled for the night but she requested they leave the lights on... I was pretty irritated at this point and led awake desperately trying to drop off to sleep. This wasn't helped by the huge cannula in my right arm not allowing me to bend it or get comfy. Over the course of the next two hours, two further ladies were bought in, both elderly and unwell. At 6:30 the ward starts to wake up, with the shift swap over starting at around 7:00. I had made it through the whole night with not even a minutes sleep. I looked and felt like death, thankfully at some point during this eventful night, Margaret started to work a little.

For those that haven't ever had the pleasure of a hospital stay they are far from relaxing. They do a meds and obs round pretty early and I was given another tablet and breakfast before 8:30. Then the wait starts for the Dr's to get to you on their ward rounds. This takes time, depending where you are in the queue and how poorly those around you are. A gastro Dr popped in briefly very early on to let me know that from a Crohn's perspective things were okay. There was no obvious flare and nothing too serious on my Xray. He explained that as Margaret had started working he was sure the main Drs would send me home that morning. I was overjoyed and texted Mum to let her know. I was next visited by the main Dr who said he wanted to see Margaret work more before I was allowed to leave. I panicked a little as this was completely out of my control. When Mum arrived we did everything we could think of to get things moving; a walk, fizzy drinks, salty foods, water, a lot of orange juice and lying on my side. Margaret barely stirred but thankfully the Drs decided I was still able to get out of there and processed the paper work at around 1:00/2:00pm. I had the irritating cannula removed and was finally free!!

I was SO relieved but completely exhausted. I went home worrying that Margaret was still not working properly and that I was going to end up back in A&E. Thankfully over the next 24 hours she got her act together and managed to work again. They were never quite sure of what caused the block but I think it was down to food. Grapes, popcorn and lack of water are not a great combination. It's safe to say in the future I'm going to be very careful about what I eat and how much fluid I'm drinking. Popcorn is not my friend.

xxx

The day that Margaret went on strike - PART 1

Hey guys,

Margaret and I have had a rocky couple of days, a couple days ago she decided to get the hump and stop working. I normally empty the bag 5-7 times over 24 hours, it's very dependent on what I eat, how much I eat and activity levels. The only times that I always, always have to empty are around 11pm before I go to bed, at some point in the middle of the night, usually 5am ish and when I wake up between 8:00 and 9:00 on a weekday.

Wednesday evening I went to go to bed and the bag was completely empty which is very odd, I didn't think too much of it but my stomach did feel kind of odd. It's such a hard feeling to describe but something was definitely off. I woke up at 8:30am and realised I hadn't needed to get up at all in the night and that there was only the smallest amount in there from the past 12 hours. This definitely wasn't normal as I had eaten my usual amount the day before. I started to do the many things they suggest when you think you might have a little block.  I couldn't think of any other reasons why Margaret wouldn't be working. I've never really had one before but they are a fairly common complication of having an ostomy. There are lots of reasons you might have a block, it tends to be, either damage from surgery, a twist or kink in the intestine, a flare up or food.

I had a hot drink, a little bit of something to eat & drank a hell of a lot of water. My tummy felt strange but was still looking normal and I wasn't in any pain so I headed to the gym thinking it would all sort itself out and that some activity would get things going! As the day went on my tummy grew more bloated, I had a hot shower, and led down with a hot water bottle in the hope it would shift whatever was blocking Margaret. Things did not improve and she was still completely shut down. At about 3:30 I started to worry, it had been 8 hours since anything had come out which is never okay. I rang my Mum to update her and then tried to get hold of my stoma nurse. The line rang and rang with no answer machine, nobody was in the office. I then tried to get hold of my brilliant IBD Nurse but managed to call after their office had closed. Nightmare. I decided to try 111, the NHS service designed to help people who aren't quite sure what they should be doing with their symptoms. The man was very polite and listened to what I had said before asking a set of completely irrelevant questions that had clearly come up on his computer screen.

'Have you been bleeding profusely for 30 minutes or more?' ermmmm no.

'Is your pain level high?' well, no not really.

Clearly my answers didn't flag up any form of emergency and he instructed me to see my GP within 12 hours. This is where, I'm afraid, 111 really doesn't work. I think its a great service for 'normal' accidents or medical queries. When, however, your issue doesn't fit the norm it doesn't make any sense. Although my symptoms on paper wouldn't qualify as a usual emergency situation, they definitely were not okay and had I left it the extra 12 hours, things could have turned out a lot, lot nastier. I rang the GP surgery and asked to speak to the on call Dr, having to explain to the secretary that no it couldn't wait until tomorrow. She said she would do her best and I settled down to wait for her call, really unsure what was going to happen next but praying that Margaret was going to kick back in to action.

The next hour and half went really slowly and my stomach grew more and more uncomfortable, I was now really bloated with back pain and unable to wear even my stretchiest leggings comfortably. I'm not going to lie I got pretty irritated with how at a loss I felt, Google told me that after 7 hours of no stoma output I should head straight to A&E but this seemed a little excessive to me and we all know you can't always take a Google medical search too seriously. I hate feeling like a burden and I never know when I'm poorly enough to seek help. I would usually put on a brave face and think I'm not ill enough, I'm constantly concerned that I will be wasting peoples time. In the past I think this may have been detrimental to my health and because of this I am getting better at speaking up when I don't think things are right. Nobody knows my body as well as I do and I knew here, that something wasn't okay. I was also pretty pissed off at Margaret. She has served me well for two whole years with barely a grumble and now for no reason or notice had decided to go on strike - she'd clearly put up with too much of my shit (hehe).

The Dr gave me a call at around 6:15, she wasn't my usual GP but she was so so brilliant. She heard me out and immediately said that she thought I should go to A&E. It was definitely not what I wanted to hear but I also felt relieved that I was being taken seriously and I wasn't going mad. The Dr thought it best that I got checked out, just in case. Mum had gone out with the dogs so I hung on until she got back, packing for an evening sat in an A&E waiting room. It felt better that I could go in on a recommendation rather than off my own back, that way if all turned out fine and dandy I wouldn't feel guilty at wasting anyones time.


- This is already pretty long so I shall continue with PART 2 soon!

Lots of love xxx

Perspective

Hi everyone,

So recently something pretty horrific happened. A guy I went to school with lost his life in an RTA whilst driving home. I didn't know him well and we hadn't kept in touch since we left school five years ago but he was in my school house and I'd known him since we were 11. Considering we weren't close friends the shock was huge, I felt pretty angry at the injustice of it. How unfair it was that this could happen to someone so young and so lovely and just like that, out of nowhere. What happened to this brilliant school friend really bought me back down to earth because you know what, life is too fucking short.

When I was really poorly and Margaret was looking more and more likely, I promised myself that once I was better I would do lots of amazing things. I wouldn't take 'normal' life for granted and would make the most of every situation. Recently I think I've forgotten this. I worry about moving house and not making friends, I worry that I need to lose weight and that Chroma isn't moving as fast as it should, I stress about what other people might think about Margaret and whether I should cut my hair short or not. Frankly, would I lie on my death bed wishing I hadn't cut my hair or that I hadn't moved out - I'd like to think not. These unnecessary stresses and worries take up way too much of my life and probably lots of other peoples. Delayed trains, traffic jams, missing a delivery or getting locked out, yes are irritating but really, there are worse things that could happen. Does Margaret even really matter all that much?

The untimely death of James has made me appreciate everything and everyone a whole lot more. Thanks to you, James, I'm going to grab life by the balls, not be such a scaredy cat & tell everyone I love them a whole lot more.

On that note I cut a good 8 inches off my hair... I've been thinking about it for ages and finally this week thought why the hell not. Baby steps to brave Gabi eh...

Boobs, Limbo & Portaloos

Hi guys,

As promised, here is how I spent my Sunday. Those of you who keep up to date with what I'm up to with Chroma may have seen that I recently sent some notebooks to the lovely people at CoppaFeel! These guys are all about spreading the boob love, getting people to 'cop a feel' (see what they did there?!) & generally raising breast cancer awareness. They primarily target younger women between the ages of 18-30 and do it in the least scary or intimidating way. I first watched a BBC3 documentary about CoppaFeel! & it's founder Kris a long while ago but was re-inspired after watching The C Word a couple weeks back. I decided to emboss some boob based notebooks and also applied to join the festival team and volunteer where I could.

Thankfully my application was successful and I was asked if I could help at Wireless 10 Festival in London. I was of course so up for this and headed to Finsbury Park to spread as much awareness as possible. Upon arrival I met the rest of the lovely team and was handed my boob for the day. Yes, I was to spend my Sunday dressed as a massive tit. I probably shouldn't have been as excited as I was, but I am not ashamed to say, I loved it.

The first few hours were filled with drizzly rain and a lot of fed up people but as the day progressed things became a lot more positive. We were strolling past an activity tent when one of my fellow boobs noticed a limbo set up. Now, I don't like to brag and this isn't something I bring up often, but I love to limbo. The ability to limbo (& play Twister) are probably the only upsides to having hyper-flexible joints. It was safe to say once I had spotted the limbo bar, there was no way I was going to leave without having a go. I ended up completing every bar apart from the very lowest one, finishing with it below my hip height. It was only after finishing that it dawned on me, I had done the whole thing dressed as a boob. I was a big, limbo-ing boob in front of a lot of people. The video was snap chatted (brilliant) but I think I gained a lot of respect for my skills.

Limbo-ing aside the day was actually really great. If you've read my previous post you'll know all about my injured foot, so I did spend a lot of the time trying to catch up with everyone, limping around but it was definitely worth it. Encouraging people to sign up to the CoppaFeel! free monthly reminder to check your boobs was great & I had many photos taken with the festival goers  - who doesn't love a boob!

The day also marked the first time I went to a festival and used a portaloo with Margaret. I hadn't given it all that much thought until I noticed she needed emptying and realised this meant the dreaded festival toilets. I left it as long as possible before venturing in to one. Due to it being the first day of use, it wasn't actually that bad, although hardly pleasant. It was whilst locking myself in that I realised, I was wearing a playsuit. Not just that but a playsuit with a t-shirt, cardigan, waterproof and rucksack over the top... The effort involved in going to the loo was huge. You don't realise how small the space is inside those things until you're stripping layers off, thank god I didn't have my boob on. What felt like hours later, I managed to get out, wishing I could bath in antibacterial wash.
I decided to avoid eating whilst at the festival, to try and keep Margaret quiet, thank fully it all worked out okay in the end and the rest of the day went really well.

CoppaFeel! really is the most amazing cause, it is definitely worth signing up to their free text service - simply text BOOBS to 70300 for your monthly reminder, it is completely hassle free and could save your life. Spread the boob love and spread the CoppaFeel! word.

Lots of love
XXX

June Update!

Hello everyone!

With June coming to an end, marking half way through 2015 - I thought it'd be a good time to update you all on the bits and pieces I've been up to!

First of all, last week I finally had my physio appointment for my knee. It comes months after my initial diagnosis appointment and since then I have worked really hard at the gym, strengthening my legs and getting my fitness levels back up! The physio lady was so lovely and could see that I was already making progress - she gave me a bunch more exercises to do to help further and I'm going back in a month to see how I have been getting on. I was also informed 'I have a great walk', so thats something to add to the CV.

Speaking of CV's (kind of) Chroma has also been doing really well recently and has been keeping me very busy. I have given up my part-time childminding & am officially full time Chroma! Eeek! It's a bit scary but is probably only going to be for the Summer. I've decided I'm going to get a part time job in Cardiff to help with bills and to make some friends...

Now for the fun stuff! Last week I headed to London for a day of fun packed activities! I met up with my lovely uni friend, Em for the most incredible pizza ever at Franco Manca on Tottenham Court Road. If you're ever that way, you have to check them out for super cheap, stone baked, sour dough proper Italian amazingness. We did a spot of shopping before I headed for a catch up meeting with one of my old tutors who has continued to be hugely supportive with Chroma since I graduated last year. I walked in expecting to have a chat over a coffee and ended up celebrating one year of business with a glass or Prosecco and some yummy nibbles. Getting out of the house did me the world of good and it really helped to talk over how things are going with other people.

I then went on to a magazine issue launch party at a lovely boutique that Chroma had contributed to. Now, short of sticking me on top of a tall building with a pack of rats, these kind of things are kind of my worst nightmare. I always end up feeling incredibly awkward and lose my ability to make small talk or even introduce myself properly. This one, however, was the best so far! Networking is something I know I have to do and get better at so I set myself the task of talking to at least three complete strangers. I did one better and ended up chatting to 4 - my all time record! Most of the girls there were with friends and had dressed up for the occasion, I on the other hand had spent a hot, sweaty day in London & was carrying a bag of rugs I had bought with Em (don't ask). My make up had come off & I was limping (more on that later). I immediately felt intimated and busied myself pretending to look through the rails of clothes and stacks of jewellery. After 10 minutes I did pluck up the courage to initiate conversation and it went well! Everyone I spoke to was so lovely, I even met a fellow dachshund owner. It definitely helped build up my confidence & was actually quite fun. Next event I am going to up my game further and speak to at least 5 people!

I also have a new injury to announce (I like to keep you all on your toes)...
Whilst in London I managed to hurt my foot. I had stupidly decided to wear very flat, flimsy sandals which gave me a blister and didn't support my 'hyper-flexible' feet well at all. After power walking/lightly jogging to get to various trains, my left foot hurt like hell. The pain has gotten worse over the last three days, eventually leaving me pretty much non weight bearing yesterday afternoon. Today, I headed to Minor Injuries wondering if I maybe had a stress fracture, thankfully I have just pulled two ligaments running down the inside of my foot. I was pretty relieved, not just because it meant I hadn't broken anything but it also saved me the embarrassment of explaining the reason I had a cast was because I had walked too much.
I've been instructed to rest it fully for another 24 hours followed by two weeks of no excess walking or exercise - shame. A great excuse for lying in the sun watching Wimbledon if you ask me.

This post is already getting pretty long, but I shall update you soon on how I spent yesterday. It involved a limbo competition & lots of boobs.

Lots of love
XXX

Two years on...

Hey guys,

Today marks two years since I had my ostomy surgery and welcomed Margaret in to my life. This time last year my post was pretty positive, I think mainly because deep down I still thought I would be able to have a reversal. Margaret felt temporary, where as now she doesn't. My life suddenly feels permanently changed, which is odd a whole two years on. Looking back on the photos of me around the time of my surgery, I feel kind of sad. I wasn't in a good place at all and in hindsight, I can see how shit things really were in so many ways. Despite my negative feelings towards having Margaret for ever, looking back makes me hugely grateful for how I feel right now. I'm pretty bloody lucky.

 

              (Day of surgery)                                                         (Two years on)


This past year I have achieved lots of things on my Big Life To Do List (although I am yet to meet David Beckham) and have plans in place to achieve some of the others. I'm both apprehensive and excited about what the next year holds. Of course, huge huge love and massive thanks to every one of my family and friends for their never ending support and to everybody who still reads this blog - you're all amazing.
As always, onwards and upwards.

Love XXX