Wednesday, 30 November 2011

Play That Horn

Well I have finally come to the end of my month of clogging up your Twitter timelines, Facebook walls and Blog alerts, also known as NHBPM (National Health Blog Post Month). I've really enjoyed the challenge and have done pretty well I think - used my two 'get out of post free' days and another for sickness (occupational hazard of being the patient writing a health blog).
It's been a great chance to keep the grey matter stimulated, read and share with other bloggers and take on the feedback I've received.
However, there is one last post to go and I've been dreading it for a few days now if I'm honest.. This post asks me to write about Me. More specifically what I 'love' about myself.
ARRGH. I hate this type of thing and am hopeless at talking about myself. Well that's not entirely true - hopeless at talking about the good points, my flaws I could probably fill a novel with, 3 sequels and a straight to DVD movie. (Starring Bruce Forsyth as me of course - it's the big chin). See, there I go already - I can't and never have been able to take myself seriously.
I'm an idiot. I spend the majority of my time doing and saying idiotic things then laughing at how idiotic I've been. I also apologise a lot, which drives my partner and best friend absolutely round the bend, suppose it's my way of getting the apology in in advance for fear I'll shortly say/do something stupid. That's not a bad quality I suppose, idiocy. In the mildest term of the word of course, I'm a harmless idiot.

I think I'm daft and therefore laughing at myself comes easily.
I'd say one of the things I like (can't bring myself to say 'love') is my sense of humour. I love to laugh and try to surround myself with people who share in my silliness and think i'm amusing in return. Suppose most of the ridiculous things I do or say are to release that elusive guffaw and loosen up those chuckle muscles. Of course that could be mistaken for "not 'funny haha'" which would devastate me. (not really, I'm just being an idiot again).

I'm terrible at praising myself or 'bigging myself up' as the kids allegedly say. However one of the qualities I do like about myself is how loving I am - I 'love' it, in fact. I adore my partner, family and friends and sometimes squeeze the cat so hard I fear his whiskers may fall off. This loveable me can also
at times be a terrible curse, for example when my goldfish of 12years died. I was gutted. Stared at the shelf he used to sit on for days, like a lost puppy. That little guy was irreplaceable, had survived the fun-fair, 2 cats, and my dad dropping him on the kitchen Lino several times a month. RIP Dave. Anyway, before my tears threaten to dampen the keys, I'll continue.
I care too much at times (don't even know what that means? How much is too much? Squeezing your cats whiskers off?) I often end up taking a lot of the problems of others on my shoulders. This doesn't leave much room for my own. I'm not Hulk Hogan. This can be very stressful at times but I wouldn't really have it any other way, I can't stand to see people unhappy and if even just listening helps someone I will stretch those ears out to epic proportions.

Finally, I'd have to say I like my attitude to Crohn's. It tries and tries to knock me down, but like those classic 90's Prescott-bashers 'Chumba Wumba', I get back up again. (Apologies if your not in the UK as that probably means nothing to you :) )
Crohn's is a tough, tiring, physical and mental assault course and I always did come last on sports day.
But this is one race I am determined to win. X


This post was written as part of NHBPM - 30 health posts in 30 days.

Monday, 28 November 2011

Greeting Card Post

'Congratulations, you've got Crohn's!'

'You've just been diagnosed with Crohn's and right now you feel swollen,
But don't feel blue coz you've a dodgy colon!
The doctors and nurses will help you feel better,
So try not to be too much of a fretter.
It's hard when you hear this disease is for life,
But please, please do not reach for the knife.
You'll feel sick and sore and the pain may be tragic,
But some drugs today can work like pure magic!
Eating is tough and some foods are out of the question,
But if I may be so bold can Make a suggestion?
Take all advice given and don't be martyr,
Help truly is there from people much smarter.
Soon you'll feel better and learn to adapt,
When the route to your colon is more clearly mapped!
So take it easy for now, rest those weary bones,
For soon you will adapt to the wonders of Crohn's!'
x


This post is written as part of NHBPM - 30 health posts in 30 days

Say WHAT?!

There have been many, MANY, ridiculous statements made about my condition, probably too many to list on one post to be honest.
It seems a bit smug and patronising now that I have a knowledge of Crohn's to shrug these comments off as silly. Why should I judge other people for asking questions or making assumptions I might have made myself over 12months ago?
Because I have it, that's why. Therefore I can say whatever I like about my disease as I'm going through it! The bottom line for me is that I don't have a problem with people asking me about my condition, (to a point obviously) - I'd much rather that than hear you telling ME what IM dealing with, when really you have no idea.
The main example that sticks in my mind and relates to a conversation I overheard, about me, two people were having in a busy room. One of the gossipers was advising the other that, because I have Crohns, I "literally s**t all the time". Lovely. The person on the receiving end of this little nugget of information was aghast with horror. Now bear with me while I break this statement down into it's component parts.. "literally" - I 'literally' s**t all the time. Really? How do I manage to eat? And sleep? And hold down a full time job? Surely I must be surgically attached to the toilet for fear of constant accidents.
"s**t all the time" - again, 'all the time' - how do I manage to get anything done?
Anyway, I came back at this point in the conversation and calmly sat down to a stony embarrassed silence. I explained that, no, I don't..need to use the toilet all the time. I have a disease that affects my bowels and makes it difficult for me to eat and digest foods properly, meaning I sometimes spend longer than your average poo poo bear in the facilities.
My response just garnered confused glances towards one another and of course those obligatory looks of pity. The looks of pity are also a common one when talking of your disease for the first time. I don't want people to feel sorry for me, I have a condition, I'm still the same person, just minus a bit of bowel.
On the other hand because Crohns is an 'invisible disability' it can often be hard to express just how terrible you may feel to someone who sees you outwardly looking no different.
But I will end this post with another one of my favourite comments, regarding another of my health gripes, arthritis. I suffered pain in my knee to the point of struggling to walk for months and kept going back and forward to the doctor to no avail. Painkillers were given and a quick peek at the offending knee (which was seriously swollen) and I was sent hobbling on my way. Eventually, on my 6th visit to the surgery, the doctor, who'd had a quick look at my notes, and my face, (I was 25 at this point) seemed annoyed, as if I was wasting his time, again. He didn't look at my knee, told me it was a sprain, to walk if off and put some frozen peas on it. FROZEN PEAS. A few short weeks later I was diagnosed with arthritis and getting cortisone injected into my knee.
Peas be with you, Doctor x


This post was written as part of NHBPM - 30 health posts in 30 days.

Sunday, 27 November 2011

Quote Unquote.

Today's post asks us to fire a randomly selected word into the search engine on the WEGO Health website and choose a quote you like from the results you get to set you writing.
The search word I used was, quite appropriately, "illness" and i found this quote that caught my attention ;
'Do you 'own' your illness?'
This got me to thinking how I feel in relation to 'ownership' of my disease. Right now i'd say Crohn's is still very much in the driving seat and 'owns' me. Much as i'd like to think otherwise I think I am still pretty much ruled by my disease and allow it to get the better of me a lot of the time.
This isnt a pleasant thing to realise but i'm well aware i'm still in the very early stages of my disease and it's going to take me a long time to get a proper handle on it. I struggle to come to terms with the realization there are many things I used to be able to do that I now find increasingly difficult. This is not an easy thing to admit - really rotten to think how significantly this Crohn's malarkey will interfere in my life. The simple act of sitting down to a meal is a challenge in itself now. The meal is rarely finished and when it is I await the rumblings or pain - even if i'm fine I still assume it will come and brace myself accordingly. Then I am completely shattered. Not just that whole after dinner woozyness you sometimes get after a big Christmas dinner or feast, but absolutely floored. Could go to bed right away and probably sleep the next 24 hours. But because that is not socially acceptable (or possible - i have a full time job) I struggle to stay awake, which then makes me irritable and grumpy at the fact i'm bloated to whale-like proportions.
But this problem is a regular one and I know I will get used to it and find a happy medium at some point. I just sometimes feel the loss of control of my own body is hard to deal with. I am so tired most of the day and think about Crohn's and how I will feel pretty much everytime I eat or drink. This again, I hope, will pass in time. I try my best to remain positive and not to allow Crohn's to be 'who i am' - but I cannot deny it is now a huge part of who I will be (a horrible diseased part).
I think the important thing to remember is that control and 'ownership' are the key words. I may not be able to control what silly games my disease decides to play with me, but I can always hold on to the rule book.
The minute I give over ownership of my body I have lost - and (apart from in every sport known to man) I have never been a loser. x


This post was written as part of NHBPM - 30 health posts in 30 days.

Saturday, 26 November 2011

I still Remember..

I still remember being told I had Crohns Disease. I can remember it quite vividly actually. I'd just been admitted to hospital (again) with agonising abdominal pain, my partner was with me and a young trainee doctor came into my room and asked me a novels worth of medical questions. In the process, inadvertently letting slip something about the possibility of Crohns. He looked instantly embarrassed and left in a hurry.
I was a bit shell shocked. I'd gone from having appendicitis to having an incurable disease I'd never even heard of. We were both a bit panicked but tried to stay calm. I was doped up on painkillers at this point so couldn't take much in, and would explain why I remember feeling pretty laid back at the time..
An older doctor came in with the student 'let-slip' doctor and spoke to me for a few minutes. For some reason I remember him being at the other end of the room and I was paranoid and confused by this- Did he think he would catch whatever this mystery illness is that I may or may not have? Is it contagious?
He again mentioned his suspicions I may have Crohns Disease, gave a VERY brief outline as to what it is, which all went completely over my head almost instantly, as it was so baffling and quick I couldn't comprehend any other than that word "disease". I do however remember feelings of relief and even validation in amongst the confusion and nerves, that something was being done at last, and that it wasn't all in my mind and that there IS something wrong with me!
After this initial meeting however, the next few days were spent preparing me to have my appendix out, which was of course, entirely unnecessary. I felt upset and worried at the seeming lack of communication and reluctance for anyone to make a definite decision on my diagnosis. I was told constantly I'd need more tests and procedures but not why - I wanted to know what exactly they suspected or what they were trying to rule out. To be honest it's just as well the young doctor had let the Crohns theory slip, as it stuck in my mind and gave me something to cling to.
The worst part however was the hope it had been appendicitis after all. If it was I would've had my nasty appendix out and could carry on with my life as if nothing had happened. Instead I was saddled with a life-long disease with no cure.
Most of all, I remember the sheer feeling of relief that now that we knew what was wrong we could start to get it under control. I now realise that's going to be a long and arduous journey, but I'm fuelled up and ready to go.


This post was written as part if NHBPM - 30 health posts in 30 days.

Friday, 25 November 2011

Never Have I Ever..

This post asks me to think about something I've never done but would like to in relation to my condition. The main one which keeps cropping up when thinking about Crohn's is one of the major gripes I have, people belittling or making light of my illness. People making ludicrous comments or using what I have as an excuse to play the hypochondriac.
I find this incredibly insulting and ignorant. I completely appreciate people who maybe have a genuine interest in Crohns and asking questions, perhaps at times too bluntly, so I bite my tongue and answer them as best I can whilst remaining relatively cheerful..
The issue I have is when people (who clearly do not have the first clue what we go through) discount any symptoms or complaints as over-reacting or exaggeration. This, in my case couldn't be further from the truth. Infact, I blame myself partly for the length of time it took to establish a diagnosis. If I had been more open and honest with the doctors from the beginning they would have had more to go on. That's a valuable lesson I've learned, in as much as I have to speak up and not worry about being judged as that is what the doctors are there for - to help make me feel better.
I think because I've been made to feel in the past that I've been perhaps going overboard when complaining of symptoms, it's taking a while to realise that I wasn't - if anything I was holding back!
But the point of this post was to explain what I NEVER do. And what I never do is speak up when I'm offended. Just silently seethe at the time then bore the boxers off my beloved later by ranting about it. I don't know if there even is a point to voicing my fury at idiotic comments? The person making the comment in the first place clearly is so insensitive that it would more than likely be irrelevant what I said in return. I would just be winding myself up more than I already do and that's just not good for my health ;) So I'm going to try and elevate myself to a whole other level and try to stop myself from getting bugged in the first place. That way Arthritis and Crohn's may break my bones but uninformed comments will never hurt me ;)


This post was written as part of NHBPM - 30 health posts on 30 days

Thursday, 24 November 2011

My Mascot

My wee mascot is called the Crohn Ranger. He is a little diseased bundle of fun who loves to give your insides a good squeeze! His absolute favourite is to twist your intestines around in this grip like he's wringing out a wet dish cloth!
The Crohn Ranger is a mischievous character who loves to cause disruption and mayhem at the most inappropriate times!
Are you running late? 'Squeeze!'
Are you on a deadline at work? 'Squeeeeze!'
Are you making an attempt at a social life? 'SQUEEEZE!!'
He hates most foods and likes to remind you of any errors you may make in dietary terms. Stay away from that tasty treat!
He enjoys playing with your temperature too, twisting the heater up and down whenever he feels like it, causing you to go from sauna sweats to antarctic chills in a matter of minutes. Rascal!
The Crohn Ranger loves visiting the doctors surgery and the hospital, he'll have you back and forth like a yo yo! Just can't get enough of that hospital food! Or maybe it's the nurses? Naughty!
He is always keen to remind you he is in the driving seat and any ideas you may get otherwise will warrant a serious reminder painwise! Stay on that little guys good side whatever you do!

Essentially he's a complete bastard.


This post was written as part of NHBPM - 30 posts in 30 days.

Wednesday, 23 November 2011

Health Activist Choice - 'If my Colon could talk..'

I'm slowly getting to grips with the realisation that I must start 'listening' to my body. Of course with Crohn's in some cases it's almost impossible not too, mainly when my washing machine stomach is in the midst of it's full spin cycle.
Joking aside, when I say 'listen' I don't just mean the audible wonderment my insides produce, but more those certain feelings or intuitions you start to get with a longterm illness. I'm a great one for pushing things I don't have time for (like my health) to the back of the drawer, hoping above all hope it will 'sort itself out' leaving me to get on with whatever else it is I've designated more important.
Take an example from earlier this month. I took the first week of Nov off work as I had some leave to use up and thought I catch up with all the lovely people I haven't seen for ages and take in some overdue rest and relaxation. Day 1 of my 'holiday' I went shopping with mum, felt shattered and dizzy and spent most of the day running back and forth to the toilet. Ended up shouting at her in M&S about god knows what and getting completely over-emotional for no legitimate reason.
Day 2 spent at home feeling rotten, no appetite and grumpy as Hell.
Day 3 was my little brothers graduation and I was determined to attend and feel better. I remember saying to my beloved the night before 'Best perk myself up for tomorrow' - Brilliant. If anyone knows how exactly you do that then please let me know as that phrase makes no sense whatsoever. So the day arrived, I was up with the lark and caught bus into town, slight headache on the horizon but I reasoned I hadn't eaten and the sun blazing in the window caused that (yes, I said Sun. In Scotland. In November.)
Met my brother and his lady and he was a little on the nervous/stressed side. Had half a bacon roll and lots of liquids and insisted on sitting at end of the row next to the door to bemused glances from older people around me. Dizziness got steadily worse and the headache was brutal. Queasiness was on the way at this point too and the ceremony had only just begun. Got ridiculously emotional watching lil' bro' graduate and cried the tears of a sick and soppy big sister.
Then was another bus trip to the reception. Leaned up against the wall in the grand hall and avoided the fishy canap├ęs on offer for fear of them making a reappearance. Old lady next to me was brought a chair to sit on and I was soo close to shoving her off so I could rest my wobbly body. She may have been 80+ but at that point in time she was 100% healthier than me. Anyway, skipping to the end, I said my farewells and met my beloved on bus home. Felt AWFUL at this point and about 10mins from home I threw up over him several times. Lovely. Mixture of absolute horror, mortification, confusion and embarrassment all in matter of moments. He was totally understanding and reassuring and when I was safely ensconced at home I spent next few days getting more intimate with the sick bowl.
Horrible bug that lasted all week, shivers, sweats, sickness, dizziness were just a few of the happy symptoms.
The thing is, I KNEW it was coming. Obviously not to the projectile-vomitting-on-a-bus extent that it did, but I knew from day 1 I was going downhill.
It's shown me I can't ignore when my body is trying to tell me to slow down or give me a warning of what may be ahead. It knows best. I need to learn the language of my body, and right now I still require a translator. Anyone fluent in Colon?


This post was written as part of NHBPM - 30 health posts in 30 days.

Tuesday, 22 November 2011

Be Present


This post calls for me to describe something I find peaceful, with as much imagery as possible. I've already cheated a bit by posting a picture but never mind. This peaceful place is the woodland at the back of my house. I live in a town but just on the outskirts, meaning I can escape to this oasis of calm in a matter of minutes. Instantly forgetting the hustle and bustle and wallowing in peace and quiet.
I love to go walks through here, it brings back memories of walks I used to go on with my dad and brother when I was young, learning all about the woodland flowers and beasties. (He wasn't big into flowers my Dad by the way, but Dad's just tend to know stuff you know?)
Anyway, I love this place mainly for the calm it inspires and for the sights, sounds and smells to delight in. That wonderful fresh smell of a woodland stream and the scents from the trees and plant-life who have set up home there. You just can't bottle it.
Running water has a weirdly hypnotic effect on me so I could sit and stare at a flowing stream for hours, just lost in thought. The idea of a place where the only sounds are that of your own footsteps and the chirp  of birds, is heavenly.
I  also absolutely love the fact that this beautiful haven is practically on my doorstep and can be visited anytime. I'm a woman of simple pleasures.. :)


This post was written as part of NHBPM - 30 health posts in 30 days.

Sunday, 20 November 2011

LOL Post

Todays blog prompt is to write about something that has made me LOL. Straight away i must stress its not my choice to use 'LOL' - i really don't like LOL or OMG or any of that. Are you really 'laughing out loud' when i've told you what i've eaten for my breakfast? Is 'oh my god' really appropriate when commenting on the state of your bed head? No, didn't think so. So lets try and use the language we have been blessed with and stop shortening everything into little letters, half of which I rarely understand!
Anyway. I've found it difficult to choose one particular thing that makes me laugh - settling instead for talking about how much I love to have a chuckle and how amazing a little laughter is in life. I think a sense of humour is so very,very important. Its a lovely thing to make someone laugh and hear them struggle to control their facilities in the midst of an onslaught of comedy gold.
Laughing is proven to make you feel better - FACT. It releases all those happy hormones you find in a big bar of chocolate or when engaging in more x-rated activities. Laughter is a great way to lighten the mood or allow yourself to forget about an unhappy time, if only for a few minutes. I try to make light of most of the horrible situations i go through and try to spread a bit of that around my friends and family. I will never understand people who want to wallow in their own misery. Try a smile! Laugh a little! People will want to be around you!
I never was particularly popular at high school but not unpopular either - I was quiet and had a select few friends (notice I refrained from using BFF's there). If I got into a sticky or uncomfortable situation I tried to make the other person laugh - this has saved me from a lot in my time.
I like being silly. I love to see people fall over. I like when people make funny faces at me and I love doing silly voices. Essentially I am a child trapped in a 28 year old woman's body. This is not a bad thing, in fact I relish this fact - I hope that child never escapes (bit of a weird analogy I know but go with it). I hope i'm still howling with laughter when I see someone slide down a hill when i'm 80.
I think if I didn't have the ability to laugh at myself I would be really struggling right now. I would not be coping with having an incurable disease at all. But I am. I am constantly mocking my bad bowels and introducing others to my disease in a lighthearted way so as not to terrify them into submission - or worse, to see them pity me. My worst nightmare.
The worst part of recovery after my op was the inability to laugh without excruciating pain. Torture. My other half makes me laugh constantly. As do my friends, my brother and my parents. Especially my dad - the humour he finds in the most mudane things never fails to bring me utter joy. In fact, he is kind of my inspiration - he is in his 70's, still sharp as a tack and wittier than a witty thing covered in wit. When I achieve the great feat of making him laugh in return, I revert back to being a 5 year old and getting applauded for learning my ABC's.
So please, laugh regularly, and a lot and make other people laugh too. And if you don't know how, for free I will gladly come round and fall over or do an impression of Barry Gibb that will make you LOL PMSL and OMG.


This post was written as part of NHBPM - 30 health posts in 30 days.

Saturday, 19 November 2011

Best Of Post

I've chosen to re-post this one as I would say it's one if, if not my favourite post so far. It's also my most viewed post of all time so it appears to be your favourite too dear reader!

http://crohnologicalorder.blogspot.com/2011/07/romancing-crohn.html

I like this post as it's all about the most important people in my life and doesn't focus so much just on me and my disease, but on how it affects those around me. I'm very emotional and it makes me a bit melancholy (in a nice way) to read over it again. I think its also a nice way to get across how important support is when going through a crohnic illness. Important to know you are not alone.


This post was written as part of NHBPM - 30 health posts in 30 days.

Friday, 18 November 2011

A comment as a blog post..

Today's prompt post was to find a post or comment from someone else's blog that has inspired us. This post from a lovely blog called Everyday Wishes is short but very sweet.

http://everydaywishes.blogspot.com/2011/11/grace-under-pressure.html

Very inspiring as there are no grand gestures, no silly claims, just a simple idea that people should think a little more about how they behave around, and towards others. To have 'grace under pressure', which is something we all should try to have a little more of. x


This post is written as part of NHBPM - 30 health posts in 30 days.

Thursday, 17 November 2011

Let It Be

This post was to be written about something that bothers me. The truth is, since being diagnosed with Crohn's, and especially after having my operation, a LOT of things that used to wind me up something rotten just don't do it for me anymore. Little things used to make me so uptight and filled with frustration. Little things like people being rude, people abusing me over the phone at work, someone walking far too slow in a shopping centre.. No, sorry the last one still drives me temporarily insane.
I think having gone through a year or so of intense pain, illness and eventually recovering from an operation, I just don't feel the need to sweat the same small stuff anymore. This is a great positive to come from a crap situation. My outlook on life seems to have changed almost completely. It really is true that a traumatic event can help you put things in perspective, and I'm slowly coming to realise getting two yards in front of an old lady in the supermarket is really NOT that important. (although it is an absolute BONUS getting that discounted bit of steak first..;) )

This post is written as part of NHBPM - 30 health posts in 30 days

Wednesday, 16 November 2011

Little Engine Post

I think I can cope with whatever Crohns throws at me.
I think I can live my life to the full regardless of my disease.
I think I can learn to live with the fact this will not go away.
I think I can become more comfortable with my Crohn's body.
I think I can forget about my scar and flaunt it in a bikini.
I think I can read that last one over again without wincing..
I think I can become fluent in the language of my colon.
I think I can learn to accept people's attitudes towards my disease.
I think I can talk more about what I'm going through to those who want to hear.
I think I can be 100% frank and honest when dealing with doctors.

I know I can rely on my friends and family for warmth and support.
I know I can allow Crohn's to become a manageable part of my life.
I know I can forget about the past and focus on the future.
I know I can smile through the bad days and hope for more if the good.


This post is written as part of NHBPM - 30 health posts in 30 days


Tuesday, 15 November 2011

This ones for you, baby.

This post requires me to dedicate a song to my condition. I've chosen 3 that could be related tenously to Crohn's..

The first is 'Under Pressure' by Bowie and Queen. I love Bowie and am a wee bit obssessed if im honest, but this always plays in my head when I think about my disease. Crohn's is worsened through stressful situations and pressure. I love the lyrics, they are slightly cryptic but and the song always seems like 5 in 1 the amount of different parts to it. I love it and Bowie in general always makes me feel a little bit brighter.

http://www.youtube.com/watch?v=Gpn8MANhdLU&feature=fvsr

I love 'Painkiller' by turin Brakes too. Obviously the painkiller reference is one that goes hand in hand with Crohn's but the lyrics are very positive, all about leaving your worries behind and trying to enjoy life.

http://www.youtube.com/watch?v=GkIZXKJmZ38&ob=av2e

Final choice is Hot Chip 'I feel Better' - i love this song. It's really catchy and I love the lyrics, they make me think positive. I love the lines "Nothing is wasted and life is worth living" and "there is a day that is yours for embracing".
The video is also a wee bit nuts.

http://www.youtube.com/watch?v=5GOZjlwIwfk&ob=av2e


This post is written as part of NHBPM - 30 health posts in 30 days.


Monday, 14 November 2011

Elevator Blog

So this post involves me describing my blog to someone I've just met in an elevator (or 'lift' if your from my neck of the woods). Giving 3 separate versions depending on length of time spent in the lift. If this situation were to occur in real life id no doubt go red in the face and look awkwardly at the floor while mumbling incoherently about my writing. But as I don't have to look any of you in the eyes I'll try to express myself as I'd like to be able to in the real world ;)

30second ride ;
'My blog is written in a diary form detailing my day to day life with Crohn's disease and how I cope (or don't cope) with it. I try to keep it as light hearted and humorous as I can, while also being open and honest about what I go through. I love writing and find it incredibly cathartic and relaxing, it really helps me being able to share my story with others'.

1 minute ride ;
'I write a blog about my adventures (and misadventures) with a condition called Crohn's Disease. It's an inflammatory disease of the bowels and intestines, and can be embarrassing and comfortable. I like to write in a comical style, in order to laugh at myself and my condition, whilst trying to make the reader feel comfortable. There are many symptoms and facets to Crohn's which many consider to be taboo, so I try to explain what I go through simply but without going into too much detail. That's easier said than done as the more comfortable and knowledgeable I become with my disease the easier I find these 'things' to talk about. I try to write openly and honestly about my experiences in the hope that others, namely my friends and family, and sufferers new to the disease will find it easier to get to grips with. I think it also helps people who know me well but don't really want to badger me constantly, to read what I go through day to day'.

2 minute ride ;
'My blog was started in February this year as a means of filling my days off work after work after an operation, and keeping my mind active, as it was starting to become diluted from too much daytime tv. I write about my trials and tribulations with Crohn's Disease, which is an inflammatory disease of the bowel and intestines. I've suffered from Crohn's 'officially' for just over a year but I reckon I've been experiencing symptoms since my teens. My blog is written in a similar style to a diary (without all the juicy bits) and details what I deal with due to Crohn's on a daily basis. I try to keep the posts fairly brief and humorous where possible and post between 3-5 posts a month. I aim to make light of the situation as it's one I'm struck with so might as well poke fun of it. Of course I do get very down at times and this gets documented too, I want to make it clear it's not all sweetness and light in my colon, but again I try to make sure the posts don't come across too depressing and retain a bit of 'me' I'm them. I'm very open about my body (perhaps too open) and my disease, in the hope this will encourage others to follow suit, or at least become more relaxed/comfortable in talking to me about my condition. Anyway, has that been two minutes?! This is a TALL building! Or maybe the lift is jammed? OH GOD I'm claustrophobic this CANNOT be happening!! HELP! HELP SOMEBODY HELP!' *faints*


This post is written as part of NHBPM - 30 health posts in 30 days

Friday, 11 November 2011

If It's Not Broke Don't Fix It

The main benefit I've found so far from getting involved in an online health community has been an endless font of experience and knowledge.
It's one thing chatting to doctors and nurses, surgeons and consultants but finding a community online is a wonderful way to gain information and an idea on what to expect from a condition from those already living with it.
I've been pleasantly surprised to see how open and brutally honest some people are about what they are going through, not afraid to lay out all their issues for the world to see. This is admirable as it allows others to gain knowledge of their condition and in some cases find reasons why they feel a certain way or what a certain symptom may mean. Obviously there's no substitute for medical knowledge when dealing with a health problem, but it's lovely to know there is a place outwith family and friends where someone out there is willing to listen and offer the support and advice only someone else with the same condition can.
I try my best to be as honest and open as I can in my blog, although I usually stop short of going into too much graphic detail. Some things I still find too uncomfortable to discuss right now, but who knows maybe that opinion will change later.
I hope the online health community continues to be a great and ongoing place of support and advice. Not necessarily a place where everybody knows your name, Cheers-style, but a nice place you can go pay a visit or stay and chat awhile. Everyone's welcome, and that's what makes it so special.


This post was written as part of NHBPM - 30 health posts in 30 days.

Thursday, 10 November 2011

The Future of Online Activism

Social media is constantly evolving and becoming easier to use. More networks are opening up allowing more and more people to join online communities and seek support and gain information on a wide range of condition.
For me, suffering with Crohn's Disease, there are various organisations and social networking sites available both home and abroad, people can join to communicate with others. It's a wonderful thing when diagnosed with any medical condition to know you are not alone, and the level if support available is incredible. It can be very overwhelming in the early stages of a diagnosis to come to terms with the new life you have no choice but to lead, and these sites and organisations can offer advice and invaluable information required to set you on the right path.
I would hope for the future online 'activism' these organisations will continue to flourish and grow. They will gain new members and encourage others to contribute and get involved in more aspects of their output. I've loved being able to contribute towards other websites and add my thoughts to online discussions. These bring people together in a great way - information, opinions and personal experiences can be shared across the globe. This is very valuable outcome of online activism as it allows people to learn from people in the same position - people going through what you are going through. People who understand.
The more people who get involved the larger and more fruitful these online sites can become. One big happy diseased family!


This post was written as part of NHBPM - 30 health posts in 30 days

Tuesday, 8 November 2011

My Personal Brand

This post calls for me to think about my 'brand' and how I 'look' to my readers. This is really something I've never given much thought to before. I'd like to think people who read my blog take from it that I try to keep a positive attitude towards my illness and that I like to laugh at the more ridiculous aspects of my life on a daily basis. I try to use humour (and probably more realistically, sarcasm) to convey my life with Crohn's and the experiences it has brought to my (normally empty) plate.
The feedback I've received since starting the blog has encouraged me I'm not too terrible a writer and it's rekindled the love of writing I had as a youngster. I loved my massive typewriter I received as a gift from my parents and spent many hours typing masterpieces in my room. My parents were not quite as enthused as me however, as my room was directly above the lounge therefore they could hear the thud of every letter being brutally punched onto the page. I enjoyed writing but could never seem to bring a story to a satisfactory conclusion, got bored halfway through. I suppose that's why I enjoy writing the blog so much, as no conclusion or 'The End' is needed. A little post a day keeps the doctor away. (I wish)
Anyway, I digress, I'd hope whoever reads my blog appreciates my honesty and openness about my disease. I try to explain what I'm going through as simply as possible, not as I think my readers have a lack of brain cells of course, but because medical jargon is another language to me and I like to see things as they are and read in a voice I can understand.
I hope people in the same position I was over a year ago can relate to my story and hopefully it doesn't scare them too much. Bottom line (pun intended) I like to think I'm a positive 'brand' and if my brand had to have a slogan it'd be 'I hope for hope' x


This post is written as part of NHBPM - 30 health posts in 30 days

3 truths and 1 lie..

1. I was diagnosed with Crohn's Disease just over a year ago.
2. I can speak Spanish.
3. I once broke my toe by dropping a table on it (by accident).
4. I can't click my fingers :(


This post is written as part of NHBPM - 30 health posts in 30 days

Monday, 7 November 2011

Case of the Monday's

Having Crohn's does get me down at times. I've written about this before and to what extent the symptoms can at times get the better of me. It's very hard to shake that off sometimes, depends a lot on my mood, state of mind and other external factors when Crohn's decides to strike.
I'd say the pain of Crohn's in the midst of a flare-up is very difficult to cope with. Even after firing multiple painkillers down my gullet, it still generally feels as though the pain just will not quit, and all I can see is a lifetime spent in bed, or worse, another rush admission to hospital to go through all this one more time. All sounds very dramatic, but it's hard to explain how intense that feeling of depression and sadness (and fear) can be until you are in the middle of it. It's very, very important to remember that the pain WILL pass and it WILL get better - although those kind of cliches can really get my goat right and would probably garner a feeble fist to the jaw in the midst of a flare-up.
However, as this post was a metaphor for a bad day (being a Monday), the way I look towards Tuesday is simply by remembering that I have no choice! Life, and more importantly in my case, MY life goes on. I am incredibly lucky to be doing so well and I know it could be a lot worse. I am 100% aware that everyday I am well is precious and I have to do my best to cherish them as there are too many of the bad.
I live to fist-punch jaws another day, and who wouldn't be delighted to face another day with that in mind? POW!




This post is written as part of NHBPM - 30 health posts in 30 days

Sunday, 6 November 2011

If I could do anything as a Health Activist..

The phrase 'Health Activist' is a strange one for me. I like it, I just don't think it's something I could by any manner of means be described as right now. I have an illness and I like to blog about it. I like to hear responses from people going through the same/similar things, and I love that it's helped my friends and family to understand the intricacies of the disease which I've struggled to get across previously using only my voice as an instrument. Having another 'voice' in the blog has been, and still is, an amazing outlet for me and has encouraged me to become more open and honest about how I'm feeling.
So what does all this mean in terms of what I can do to help others? Well obviously if money was no object I'd be ploughing every penny I had into trying to find a cure for Crohn's Disease. As it stands there is none (cure nor available pennies :( ) and the varied treatments available rarely work long-term and most come with highly unpleasant side effects. Crohn's is not alone in it's complications too, as the disease lowers your immune system, it makes it much harder for your body to fight normally silly little things like colds and achy bones, and the long term affects on the body are not worth going into right now.
So as the whole 'cure' idea is unfortunately pie in the sky material I like to think what I can do in my own little corner of the world to help others in the same Crohn's filled boat as myself. How this could manifest itself I'm not sure - the blog is a great way to reach a worldwide audience with my story but what about those who are not yet computer literate? (my parents for example) - how to express to them what I'm going through? Talking is a start and something I've had to learn to do more of in order to get across the full extent of my symptoms. As my consultant has often said (shouted) "TALK TO ME KATHLEEN!" - her advice is pretty rock solid, how can she begin to help me when I hold things back and underplay my symptoms?
So the best help I could be right now is to plug on with the blog and continue to try and encourage others to speak up about what they are going through. As the man with the white glove once said, You are not alone.
Nothing too grand there unfortunately, but I'm still dealing with this slowly but surely myself - the miracle-cure-finding will come soon I'm sure ;)


This post was written as part of NHBPM - 30 health posts in 30 days

Saturday, 5 November 2011

5 things (well 3..) that changed my Life

I'm cheating a bit here with this post as I'm in my sickbed and shattered and have already written too much for the first 3. Forgive me and my fuzzy head if this is all a jumble of emotions :)

1. Being diagnosed with Crohn's.
Obviously this badboy has to be top of my list (for now anyway) as i'd say getting this disease has been the biggest 'life-changer' for me so far. I was devastated when I found out this disease is for life, felt like I'd been handed a life-sentence. Suppose I have really, without the bars and the lack of decent toilet facilities. I'm still not sure I've accepted the 'life-long' aspect, only a year later, that will come eventually I'm sure but I'm still definitely not quite there yet.
However, being diagnosed with Crohn's changed my life for other reasons too. It's made me realise why I've had these problems pretty much my entire life, and that it wasn't my imagination, something WAS wrong and still us. It was such a weight lifted in a strange way to finally have an explanation for my symptoms and although I was saddened it's not something that will ever be easily resolved, it was a relief nevertheless to know exactly what I was dealing with.
Being lumped with a life-long illness has also made it clear who are true friends and who will stick by me through thick and thin (I've been both..) - invaluable information for life.

2. Having my Operation.
I am well aware just how lucky I am to have been granted an operation so early in my Crohn's 'career'. When the pain was at its worst I met with a male surgeon who reduced me to tears by telling me i'd have a colostomy "for life" and I had so many more treatments to go through before I even "stood a chance" of having the surgery I so badly needed.
I was completely physically and mentally broken by this point and this just came as yet another major set back and straight up kick to the colon. My amazing consultant was enraged by this tete a tete and rushed through a surgical meeting where she explained my mental and physical health until they signed on the dotted line. I am eternally grateful for this. And she knows it.
After my op, the surgeon told me I had the worst case of Crohn's she had seen and I would've been hospitalised in a matter of weeks had I gone on as I had been. The pain id been going through was unbearable and the change after a few hours on the operating table has been unbelievable.

3. Meeting 'him indoors'
I met my beloved many years ago when we worked together in a restaurant. We became friends not too long before we eventually became a couple. The transition from mates to 'mates' seems pretty seamless in my memory but if I linger on it too long I remember it really wasn't that straightforward. Irrespective of our beginnings we are now sharing a home with a cat over 6years later. And no it's been far from plain sailing but who's relationship is? Im still stupidly smitten as is he. Well I don't want to speak for him but he says he is and I'm pretty awesome so all the evidence is there..
The reason I say he has changed my life is mainly down to the happiness he has brought into it. I was far from a misery-guts before him, but I didn't quite realise how happy another human could make me. He makes me want to be the best I can, for me and for 'us' and the fact that I've brought Crohn's into the relationship is just, as he says, something we will have to deal with.
I'm well aware it's not the end of the world to be alone, and if the worst happened I know I'd survive (almost straying into Gloria Gaynor territory there..) but the pleasure of coming home too, and building a life with someone you love is a pleasure and a privilege too addictive to give up. Besides, his cooking is far too good for me (and my Crohn's) x


This post was written as part of NHBPM - 30 health posts in 30 days

Friday, 4 November 2011

What happens when you press "Publish"

I love blogging. It was my younger brothers idea I start the blog. He suggested it would be a good way to keep my mind active and off-load after my operation in Jan this year. I had 4 long months watching daytime tv ahead of me, so anything to keep me from becoming a gibbering fool seemed a great prospect. I wrote my 1st post in Feb and only my family and a few friends had read it. They gave me great feedback so I gained the confidence after writing a few more, to post to a wider audience. I posted the links to my posts on Facebook and Twitter then later set up my own Facebook page specifically for the blog. ('Crohnological Order' thanks for asking ;) ) 
When more and more people began to read my posts I was thrilled! I've yet to receive any negative feedback (although I reckon people are just too polite) and I've met some great people online who have become friends now not just readers. 
I am a bit of a spelling obsessive so I hate myself intensely when I spot a mistake after I've published a post. If I didn't have an arthritic leg I'd be kicking it constantly. I'm often too over-excited to share my post with the world that I don't read it over again. School-girl error. 
 I started with a couple of views a day and now people from over 30countries read my blog and I usually get between 40-100 views per day. Very exciting to me in my little part of the world. 
It's genuinely enjoyable for me writing the blog and thrilling when I receive feedback or am contacted by a reader. So I'll keep writing as I've a lifetime of Crohn's tales still to come. 


This post was written as part of NHBPM - 30 health posts in 30 days

Thursday, 3 November 2011

Dear 18year old Me

As I am currently 28 - writing a letter to 18year old me will take me back a decade. Terrifying to think I've been on the planet for that long in the first place..

Dear Kathleen (aged 18),

Hello. I can guess straight away you'll be annoyed at the opening line of this letter as I've called you 'Kathleen' and right now I know you are too cool for school and have taken on 'Kath' as your new moniker. It will stick and most of your friends will refer to you this way from then on, so there you go smarty-pants.
Already arguing with my 18yr old self. Typical. You are very like your mother right now and are probably in the midst of an argument with her as we speak. She infuriates you so much at times but I know you hate arguing with each other and it upsets you so much you really should just be the bigger person and apologise. (yes, even if it's not your fault). Believe me it's not worth it and you will come to regret every harsh word spoken in haste later.
There is a lot going on in your life right now, you are in the first flush of a new relationship infact, and a bit giddy with it all, but be careful and reign that in, as there will be heartache ahead. (sorry about that).
Don't worry, you will be sad, but it'll be followed with absolute joy and love beyond compare! Trust me on that. He's awesome. (and you just get soppier as the years go on).
I know you think in 10years time your life will be sorted. You'll be married probably with your dream job and maybe a little one on the way. Hmm. Well I'll not give it all away but there are a few changes of opinion you will have later on those, but I won't spoil that for you now.
There are also some very scary times ahead. You will become very ill and develop something horrible called Crohn's Disease. It's a long and arduous process trying to establish what you've got but you will get there. (That's right, you know all those 'other' problems you have - that's what it's been all along! Weird eh?) So you will get that sorted and start to learn to live with it. I know that may be something you will want to weep and wail about and give it the full drama queen hysterics, but you'll be cool as a Crohn's cucumber later believe me. You will cope with it because you have to.
You know how you often feel that you won't ever make Mum and Dad proud of you? Well you do. You'll realise that they always have been and always will be - it really doesn't matter what career path you choose or whether you are the next Picasso, as they love you with a ferocity that knows no bounds.
So a lot to fit in, in the next decade, but it's a good one, filled with heartache and love, sadness, happiness, excitement (and one horrifying night in the pub after thinking you could polish off every drink on the bar) -infact, that might have already happened.. Is that why you've fallen out with mum? You DEFINITELY need to apologise for that one.

Anyway, heres to the next 10years together. You feel weak right now but you are stronger than you think and don't forget it.

Love and Nutella,
Kath (aged 28) x x


This post was written as part of NHBPM - 30 health posts in 30 days

Wednesday, 2 November 2011

My TV Show - You Got Crohned!

This post requires me to come up with a TV show based around my blog. As my blog is purely about me and my adventures with Crohn's, my idea for a tv show would be based around the initial diagnosis of Crohns Disease and would be crudely titled "You got Crohned!"
The game show would be handily set in a hospital and would consist of a series of tests being carried out to establish a diagnosis of Crohn's disease (or not as the case may be).
In my personal experience, and of many other Crohn's patients I've conversed with, reaching a diagnosis of the disease is normally a very long and arduous process. Can be incredibly distressing and stressful, and usually requires many visits to and from doctors and hospitals before finally reaching a conclusion. Then the fun can really start when your treatment begins.. This way we cut short the waiting and worrying and skip straight to the diagnosis.
My idea consists of a hospital, a patient suffering with possible Crohn's symptoms and a team of medical professionals on hand.
The show will begin with a brief introduction to our patient (contestant), including a potted medical history.
We then begin a series of tests required to rule out any other possible illnesses - the patient will be whizzed through MRI scans, CT scans, given blood tests, a colonoscopy and anything else required to reach a satisfactory conclusion. Of course I'm not a monster, these tests will be spread over 2-3 days, endurance is the key, if you can't take the poking and prodding get out of the hospital!
The cameras will follow the contestant everywhere and the more x-rated scenes will of course be edited for a younger audience. (We want this to be enjoyed by the whole family!)
When an eventual diagnosis is reached the camera will zoom in on the contestants face to capture their reaction as he/she hears his/her fate. A magical moment. See the ratings soar!
When the contestant has been advised it is indeed Crohn's they will be handed their prizes, am immediate consultation with a doctor who will discuss best form of treatment and a Crohnie-goodie-bag. This will include wet wipes, a years supply of toilet roll, Vaseline, painkillers, a variety of soups, milkshakes, and of course not forgetting the star prize, a gold plated self-cleaning toilet!
Congratulations!
The episode, having been already edited into a manageable half hour, will see the credits roll over images of said contestant being wheeled to the hospital car park to make his/her journey home to the cheers of an adoring crowd.
I know, I'm an absolute genius. Perfect.
Any television production companies feel free to contact me anytime, I'll be awaiting the call!



This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J

Tuesday, 1 November 2011

30 posts in 30 days - Titles of my Future Book

Hello again Dear Reader!

I am taking part in WEGO Health’s National Blog Post Month (30posts in 30days). I am only allowed 2 ‘get out of post free days’ and receive prompts on each days post. So here is numero uno. Only another 29 to go!

Titles of my Future Book

This post is particularly interesting to me as writing a book is an idea I think about quite frequently. Several friends and family members tell me regularly they think I have a nice touch when it comes to writing and would love me to write more. But I don’t have the confidence. Plus I feel I am too early in living with my condition to pass on enough experience or don’t have enough knowledge to impart. So maybe later. I do absolutely love the idea that people may enjoy reading my witterings and even garner something from it.
But as I have to come up with book titles for the purposes of this post, here are some at the forefront of my mind, and some I prepared (used) earlier..

‘The Crohnicles’ – [ok so this was actually my Dad’s idea, and as we all know Dad’s, (after Mum’s obviously) are always right]
‘Queen of The Crohn Age ‘
‘The Crohn Ranger’
‘For your Eyes Crohnly’
‘The Philosophers Crohn’

My personal favourite is the last one but I think these may possibly be subject to copyright..
I do love a pun and ‘Crohn’s’ is a surprisingly good word for twisting into humorous titles. I’ve made the most of this discovery throughout my blog.
This post also requires me to write a brief synopsis for my ‘book’ (which is actually MUCH harder than I thought it would be) but here goes..

‘I suffer from Crohn’s Disease, a crohnic inflammatory disease of the bowel and intestines. I hope to entertain and educate you over the next [insert number here] pages with my health related rambles. I’ll take you on a magical trip around my colon. And if you plan to read further than this, my bowels applaud you in advance.’



This post was written as part of NHBPM – 30 health posts in 30 days: http://bit.ly/vU0g9J