Fight or flight?

If you're following my blog you will know by now that I'm attempting to tackle an ongoing plight with anxiety which I believe is linked to my diagnosis of Ulcerative Colitis. To date I've briefly mentioned it both HERE and HERE but I've not really taken the time to understand the true meaning of anxiety. It's important to stress that I am merely a blogger not a doctor so please note that I am only documenting my personal experiences with both Ulcerative Colitis and Anxiety. Therefore should you need to please seek help through the appropriate channels (Hint; I am not one of them).

When I first experienced the physical symptoms of anxiety I wasn't quite sure what to make of it all. I felt frightened, a bit silly and overall exhausted by the whole process. Most of all I felt alone... that was until I stumbled upon another blogger who happened to mention that she too had dealt with anxiety. Knowing that others with Crohn's Disease or Ulcerative Colitis were experiencing the same thing as myself was extremely reassuring. So with that said I hope to continue the chain by allowing you all to accompany me on my journey of learning, tackling and hopefully overcoming or at the very least managing the physical symptoms brought on by anxiety.

What is anxiety? I hear you shout. Great question!
'Anxiety is the feeling we get when our body responds to a frightening or threatening experience. It has been called the fight or flight response. It is simply your body preparing for action, either to fight danger or to run away from it as fast as possible'
^ Understanding this basic explanation I found to be very insightful and calmed a lot of my initial worries and fears... 'The purpose of the physical symptoms of anxiety therefore is to prepare your body to cope with threat'. [An extract taken from the NHS's anxiety self help guide of which I'll explain a bit more of later on.]

So you see the jelly legs, panic, trembling and all out crying is all a part of your body's response as it tries to decide if you're going to stay where you are and tackle whatever it is that you're feeling worried about or whether (like me) you act on an overwhelming urge to leave your current surroundings which you feel uneasy in. 'Even before I get there I start to worry about all the things that might go wrong. When I arrive my heart starts to pound, my legs turn to jelly and I just know I'm going to make a fool of myself. I have to get out' [Again another extract from the NHS self help guide]

How does anxiety manifest itself?
Symptoms of general anxiety disorder listed on the NHS's website are as follows;

Psychological symptoms
   * restlessness
   * a sense of dread
   * feeling constantly 'on edge'
   * difficulty concentrating
   * irritability

Physical symptoms 
   * dizziness
   * tiredness
   * a noticeably strong, fast or irregular heartbeat
   *  muscle ache and tension
   * trembling or shaking
   * dry mouth
   * excessive sweating
   * shortness of breath
   * stomach ache
   * feeling sick
   * headache
   * pins and needles
   * difficulty falling or staying asleep
For more information about anxiety see the NHS website by CLICKING HERE

Knowing that your thought processes are being validated was of a great comfort to me. To know the reasoning why you're acting bizarrely and not overall just dulally has helped me with coming to terms of having anxiety.

According to this self help guide there are four different areas that we can work on in trying to overcome anxiety, these are;
* understanding anxiety better and beginning to tackle some of the causes.
* reducing physical symptoms.
* altering thoughts related to anxiety.
* changing behaviours related to anxiety.

Okay so to be completely honest I didn't take too much away from the NHS' anxiety self help guide but it was a great place to start in my journey. I found the guide to be a bit hit and miss with regards to having anxiety related to a diagnosis of Inflammatory Bowel Disease but it definitely gave me some areas to think about and to work on.

Assemble an anxiety diary!
If you're at the beginning of your troubles with anxiety then I thought the suggested idea of assembling an anxiety diary was a great tool to have. You're encouraged to list down over a period of two weeks (or longer) any instances when you feel uneasy. 'Rate your anxiety from 0-10 and note down anything that seems important. Were you at work or home? Who were you with? What were you doing? What were you thinking about?'
The hope is that you build up a picture of the times when you're feeling most uneasy about your thoughts, feelings or surroundings. Is there a 'trigger' to your worrying. Of course once you can pin point this then you can work towards counteracting your behaviour.  

If you've read my previous post 'feeling caged' then you'll know that my chosen strategy has been to take things one small step at a time. I've found that over time our thought processes can become a little excessive and out of proportion to the situations we face. Staying at home, head shoved firmly under the duvet (although most comfortable and the easiest option) only seems to exacerbate things. It's far too easy to snuggle up enjoying those pajama days than it is to put on a brave face and challenge the outside world. At one point I had gotten myself into such a pickle that it was easier to just stay indoors. However over time I started challenging myself, whether it be a super short car journey or a brisk walk up the road. Find an excuse to get out of the house, no matter how close by you remain until you rebuild your confidence. Slowly but surly over time you will pick yourself back up and come to realise that what you think 'the worst case scenario' is...won't always happen, if it even happens at all!

One way I am tackling my anxiety is by doing just so. I try to keep moving by little outings here and there. More likely than not they are spur of the moment rather than making any formal plans which do nothing but pile on the pressure for those of us with Inflammatory Bowel Disease. One of my usual jaunts is to the post box and back, a round journey of 15 minutes or so. It may not seem like much but it helps to clear the mind and whilst out I get clarity as to how disproportionate my feelings become whilst I am cooped up at home. Turns out I rather enjoy the outside world even if at the minute I spend most of my time avoiding it.

Set your sights on something!
Life passes us by at a super quick speed. It's easy to get lost from day to day. Truth be told there have been many occasions when I've lost track of which day of the week we are on. For when cooped up within the confines of your own home things such as the time or the day of the week pale into insignificance. One thing I set my sights on was a relaxed cup of tea not too far from home. This has been something I've put off for a REALLY long time. Although I've wanted to go, at the time when I made the plans it was a step too far for me. Yesterday I GOT THERE! Yes, little worried me made it as far as the coffee shop without freaking out and wanting to flea to the safety of my own home. To some this may feel like a small feat but to me it is hopefully another steppingstone on my road to overcoming these hurdles in life.

Am I rid of my battles with anxiety? Nope but I do definitely feel that I've come a long way since the symptoms of anxiety started to creep up on me. As of yet I do not have many of the answers needed to overcome these niggling feelings but I am hopeful that slow and steady will win the race.

If you are in need of extra support because of anxiety please contact your healthcare providers.

'My illness doesn't define me'

My illness does not define me...

Here's a quote that I've heard many times over. For a long time I sat on the side of the fence which declared 'my illness doesn't define me' and in some respects you're correct, your illness (can be) a small portion of your life. In the sense that there is so much more to you, there are many more building blocks/puzzle pieces that make you into the person that you are today. You may choose to use your illness as a way of pushing yourself to reach for goals that you'd otherwise not have aimed for or maybe you're stronger today due to what battles you've had to overcome.

There is no denying that having a chronic illness impacts your daily life whether we choose to embrace this fact or not. In my case having Inflammatory Bowel Disease means that a lot of the days decisions are based around taking medications, avoiding certain foods, filtering through the types of invitations to certain events/days out and activities etc. It's a constant thought whether you're aware of it or not, it's usually lurking at the back of the mind.

Obviously I can't speak for everyone but I'm sure that many would agree with me when I say that having a chronic illness has an impact on the people who they surround themselves with. I've heard countless times of how once someone is diagnosed with either Crohn's Disease or Ulcerative Colitis that a portion of people pack their bags and run off. Which is such a shame in a sense as at the time of diagnosis you need your friends/ loved ones more than ever. However the opposite tends to happen where a certain portion of people who were once present in your life move on to other pastures. Those who are left are the ones we all treasure most; the friends, family and loved ones who stand by us through thick and thin not the flimsy acquaintances who never made the cut.

Truth be told the only option those diagnosed with these illnesses have is to 'suck it up and get on with it' (What a stupid saying anyways...) We are supposed to 'make the most of it' and take life by the horns. Usually this is how the years pan out as we all simply take it one day at a time HOWEVER there are times/days when I shut down, I curl up into a ball and I want to ball my eyes out.

(Yes, me...the woman fundraising, advocating and running a global awareness campaign I cry :P Get over it ha)

'Just don't think about it' <-- hands up how many of us battling a daily fight with Inflammatory Bowel Disease have been told to 'not think about it' or 'think positive'.
'Not thinking about it' is not an option for me as my illness effects many of the choices I make throughout the day. Have I drunk enough? Which foods will land me up in A&E? Have I remembered my medication? Have I ordered enough medication? When's my next appointment/check up? Have I filled in all of the outstanding paperwork? How many people will I end up unintentionally p*ssing off today?

'You're getting consumed by your illness' <-- anyone heard this one? Yep me too! Truth be told, it's nay on impossible to get through a single day without thinking about my chronic illness in some way shape or form. Most days I 'make the most of it' as complaining and shouting 'why me' gets you absolutely nowhere but doing so doesn't stop the random moments when it all becomes too much and I become tired of playing this game.

I am tired of being poorly I'm sure many others would agree, but I too am tired of not being able to enjoy the simple things in life. I miss the simple pleasures in life that everyone takes for granted. IBD is a HUGE part of a person's life, not only for the person diagnosed but it effects the whole family and your network of friends.

I find myself encouraging you all to find your own voice, mainly because I have seen first had what an impact one lone voice can make. One lone voice is helping to educate others, one lone voice is helping to fund-raise, one lone voice CAN and DOES make a difference! You only have one life, so why spend it hiding? Be the person you were always meant to be ....or at least be the person you deserve to be, without hiding. You are you and you have a lot to give! So what if your body is broken or you are an emotional wreck...so was I! So am I. I feel I can sit here and push you to gain a better/brighter future...for I have been through the same journey myself. I have NO IDEA where I am going, what the heck I am up to or where I will find myself in another years time. All I do know is that I hope I am still trying, for that's all I can ask of myself.

When I began my blog my mind was turning to mush as it had been so long since it was put to good use. I found myself doing puzzles and quiz books just to keep my mind active. These days I have the creativity and outlet to express things through my blogging, advocacy and campaign work which reinstates my belief that although my body is broken I still have a huge amount to give the world! As you do too..find that one thing which challenges you. I'm sure you've had to abandon some of life's plans along the way but make new ones. Set yourselves something to look forward to for these days help us to get through the rocky road ahead.

Am I at peace with my illness...NO; but I am learning to live alongside my illness. I am not as of yet at one with my illness but I am slowly navigating my way through life alongside my chronic illness. My wish is for you to become comfortable discussing your own journeys with Inflammatory Bowel Disease, adapt life to better suit your needs and that you too can find a support system that works well for you.

So again we come back to the question of, how can we say a diagnosis of a chronic illness doesn't define a person when it impacts so heavily on the choices we make, the people we surround ourselves with and the ways in which we adapt our behaviour, careers and routines? I suppose in some ways we try to push our illness to the back of our minds so that it doesn't take up all of our time but I mean that's still a pretty difficult feat. Maybe accepting that your chronic illness defines you is in some ways 'letting the illness win'? We'd all like to prove that we are stronger and ready to tackle it head on right? I believe that your chronic illness shapes the person you are today whether for better or worse, you have a small part of your character which is defined by your chronic illness.

Online Vs Offline

Something I've been attempting to get my head around of late is this whole idea of 'online vs offline support'. It goes without saying that there are both positives and drawbacks to each of these forms of support but I think overall things work best with a mixture of the two. Which is where I'm currently at, getting a good balance between the support that's offered online vs the support of those I can poke in the eye with a stick eehee I jest!

I think this applies to many who find themselves having to face extra challenges in life, whether that be down to circumstances or an illness for a vague example. We're somewhat drawn to this BIZARRE online world. Lets face it, when did sharing such trivial updates such as what we're having for lunch become 'the new norm'. Don't get me wrong I can completely see how we get sucked into this twirley, whirley, sparkley doo dah kind of world for it brings a sense of escapism. For that hour or two (okay or more) that we pop online we're using it as an escape from the confines of our reality.

At times there is nothing greater than that fuzzy feeling you get from a catch up with family, friends or loved ones over a nice cuppa. Spending hours putting the world to rights amongst those who know us best usually results in having that extra spring in our step which propels us on and helps to get us through the remainder of the week. Alternatively there are times when we want to yell, rant, scream and poke said people in the eye with a stick because they struggle to understand the exact nature of the challenges we face so with that in mind we pack up our imaginary sticks and head for our social media outlets instead.

It's comforting to seek advice, friendship and support from others who are in a similar situation as oneself. It's also reassuring and refreshing to hear other peoples perspectives on life as a whole as well as hearing from others who we can share 'inside jokes' with. Sometimes not having to explain ourselves in great detail is a break from the monotony of continuously explaining why we're acting and feeling in peculiar ways.

Personally I find the online world completely bizarre, people have the freedom to be whomever they wish to be or more commonly are able to put their 'best foot' (image) forward. It's far too easy for people to put forward a false sense of who they are just as it is far too easy for us to get sucked into believing that others live a better/ more fulfilling lifestyle than our own. This too can be seen for example amongst those who are tackling illness as 'competition'; we can look to others and think 'they're coping with this so much better than I'. We tend to overlook the little things like how many photographs were taken before that particular pristine photograph was achieved, are there filters and alterations at work unbeknownst to us, or we fail to see all of the pajama days that take place in-between one photograph and the next... all we see is the image people want us to see 'the finished product'. So with that in mind the support offered online CAN make us feel worse in the long run.

How much is too much? I've heard it said a few times now about how we can become a little lost somewhere between being supportive and letting other peoples trials and tribulations overwhelm us.
I worry that we're becoming too reliant on such things as support groups/forums. Time and time again I stumble across those who are looking for advice in the wrong place. There is an important need for support groups to ask for advice, share information and gain support...it's another thing entirely when we begin to dish out medical advice for example. Two issues, poles apart ...which tend to blur in the middle somewhere. As the bright advocate Sara Ringer  once tweeted 'I can answer 90% of questions asked in #IBD fb [Facebook] groups/pages with one phrase "Call your doctor!"'. Couldn't have said it better myself.

There too is this funky craze within support groups where people squabble, fall out, bicker and have a difference of opinions which then lead to personal jibes, digs and hurtful insults. I fail to see how adults lack the ability to have a difference of opinion or approach difficult subject matter without wanting to claw each others eyeballs out. Surly somewhere there is a line, one of which that gets missed time and time again. These quarrels do no good for anyone's health, which should be a priority. If social media is having a negative effect upon your health or state of mind...it's probably best that you turn it off all together.

It's not all doom and gloom... for there too we find inspiration, drive, confidence and courage online. We can become inspired by someones journey, thought process or resilience. Online we share a wealth of creativity, information, quotes and campaigns all intent on making life a little brighter for us all. A problem shared is a problem halved and it's always nice to know that no matter what hour of the day or night there are always people online who are willing to listen...but what about those folk offline? Those who we're too busy to call, text or see all because of the all consuming presence we have online.

I think the key is to find a balance, one of which I am trying hard to find. I am passionate about raising awareness of Inflammatory Bowel Disease both online and offline, I am keen to campaign and fundraise...I too am keen to ensure that I take the time to build a life for myself, support my friends, as well as taking care of the virtual five thousand.

Surgery...yikes!

WAIT!! Please don't flee ..it's important we discuss this.

I like to write my blog as it's interesting for me to look back on the different stages of my battle with Inflammatory Bowel Disease. I read over some older posts and the feelings that I've written down are rather foreign to me in the present stage of my journey. To say that Ulcerative Colitis is a roller coaster of a ride is an understatement, highs, lows, to hell and back and to think things have only barely began. I am now some 5 years into this daily battle but trying to accept that I will be lumbered with this for life (as at present it is incurable) is rather too much to take in.

As I compose this post there are IBD'ers that I've come to know who are currently in the hospital, battling dark days and others heading towards yet another trying time with surgery. The hard cold facts about Inflammatory Bowel Disease is that there is no 'wonder drug', it is all trial and error to try and 'sustain' ones 'health'. Some days are better than others but as of yet there is only one grim way out, one that I don't wish upon anyone and am doing my part to raise awareness so that we can in future eradicate this illness.

Who will face surgery?

Source: Above stats taken from Crohn's and Colitis UK. Crohn's and Colitis Foundation of America also state 'one quarter to one third of patients with Ulcerative Colitis' 25-30% / 'two thirds - three quarters of people with Crohn's Disease' 60-75%  

I'll not write about the ins and outs of surgery or draw you some doodles as frankly I'm not a doctor, my doodles would be AWFUL and there are wonderful IBD charities that have done a brilliant job at explaining in depth what surgery entails. Therefore if you would like to know a little more about surgery with Crohn's Disease or Ulcerative Colitis then here are some great links>
Click here for information on surgery for Ulcerative Colitis.
Click here for information on surgery for Crohn's Disease.

Surgery, yikes! I know its super scary and the stats aren't great but unfortunately it is a very real possibility for those of us who have Inflammatory Bowel Disease. If you shove your head under the pillow the risks don't decrease! Hopefully by reading about it and doing some research your fears wont be as bad in the long run. Forewarned is forearmed as the saying goes, some people don't get this chance and land up having emergency surgery. So if you can, do  little research into it.

Previously when I was super run down, exhausted, confused and lost, I once asked my gastroenterologist if he could just whip out my colon to save me from this illness. At the time he giggled at me and I'm glad that he did, as I was only at the beginning of finding a treatment that works for me so don't be as hasty lol I didn't understand Ostomies, knew not of how they worked or what their purpose was. I was naive to the idea that you have surgery and all is fixed...that's not always the case. Removing someones colon is NOT a cure for someone who is diagnosed with Ulcerative Colitis but a drastic treatment option as the delightful Marisa from @JournalingIBD explains>
Click here to read 'Can Ulcerative Colitis be cured?'

Surgery is just yet another drastic 'treatment option' one that I find hard to comprehend. I know we have no say in who will land up on the operating table and which of us will not but my head still can't get around the fact that surgery 'may' one day be my only option. *Note to future self- how are you getting on?*
There are many wonderful IBD advocates who are extremely inspiring and who let us into their journeys following surgery.These delightful people let us in on their worlds to help, advise, educate and prepare us on what life could be like. While some people struggle to cope with the new change, others take well to having an ostomy and feel that it has given them a better state of health .

One such ostomate is Eric; creator of Vegan Ostomy @veganostomy who is just outstanding at the awareness he raises and the advice he offers to anyone who comes knocking at his door (of the social media kind that is, the bloke lives in Canada and not even I am making that trek from here in the UK). Vegan Ostomy churns out blog posts, product reviews, videos, you name it ...the man knows about it>

Stephen, creator of Behind The Times @sdempsteruk was not so fortunate in having a 'heads up' about surgery. Having first known about surgery when he was rolled into theater to have a resection (part of his colon removed) due to his bowel rupturing (We'll hold the Crohn's Disease accountable for that one!You meanie you!). Again Stephen is a wonderful advocate for IBD who too blogs about his experiences in the charge to raise awareness.

How do I think I would react to needing surgery? I'd probably try to flee, barter my way out of it or cry like a child for weeks on end. In all honesty I don't think that I would cope well with the procedure or any of the immediate aftercare. Do I see myself accepting surgery in my near future? Hopefully not, my current strategy is to hold out as long as possible and hope that we continue to make advancements with the medications available to those of us with Inflammatory Bowel Disease. Could I see myself maintaining an ostomy? hmm I think I could. Would I be any good at it? No idea at all! For now I don't see surgery in my future but am only too aware that it is always an option. Some people with Crohn's Disease or Ulcerative Colitis get the choice of surgery while for others it is a 'last hope' as they have trialled every other medication available to them. I don't feel that I will be one of the 20-30% of Ulcerative Colitis patients who will need surgery but if it does happen at least I am now a little more prepared and educated on the topic.

So as you can see I have nothing to offer up on personal experiences with surgery and IBD but I thought it would be a good opportunity to document my thoughts and feelings to compare where I am at in the future. For now maintenance medication option 1 (Pentasa/ Mesalazine) is still working well for me and in the meantime I'm hoping that new advancements in treatments will continue coming to the table. I feel like we are making headway into understanding a little more about how Inflammatory Bowel Disease behaves even if we as of yet do not understand any of the what, who's, or why's of the blooping illness.
My thoughts are with all of those who are currently tackling a hospital stay; keep strong, keep fighting Xx

BLOGIVERSARY & tales of hope

March 12th 2014 I wrote a blog post in which I said 'We have a long way to go until we reach the end of 2014, let's be able to say that 2014 was the year we all stood together, strong and united and can be able to say...

"2014 was the year we all discussed Crohn's Disease and Ulcerative Colitis"

My golly what a year it has been!! If you'd like to read that previous post you can do so by clicking here.
What a wonderful year for IBD awareness! So with that said here are only a few of the magnificent fundraisers and campaigns that have been launched this year alone in the battle to raise the much needed awareness of Inflammatory Bowel Disease.

February

To find out more about Crewing for Crohn's see> http://www.crewingforcrohns.org.uk

March

To read more about the fantastic United for Colitis charity visit> http://www.unitedforcolitis.co.uk

March

Keep up to date with all the latest campaign information at> www.getyourbellyout.co.uk

June 

I don't believe Bethany has a website but she can be found via Twitter> @BethyTownsend

June

For all the latest on Blake see> http://www.blakebeckford.co.uk

October/November

Get Your Full Course can be found via> http://www.getyourfullcourse.com

Oh one more thing.....

ITS MY ONE YEAR BLOGIVERSARY!!!! Wooohooo!! I lasted a whole year in this blogging game and I have loved every minute of it. Granted I have been a little sidetracked by the #GetYourBellyOut campaign and all the other social media sites I do my best to keep up with but I'm still here; going strong! I wanted to say a heartfelt THANK YOU to everyone who has stopped by my blog, whether this be your first visit here or your 100th; my blog would mean nothing at all without the support of my blog readers. Granted there have been times when I wondered if anyone was even reading my content and days when it's felt like I am talking to myself. All it takes is one little comment or one heartfelt email that lets me know that someone has found comfort from one of my posts to make all the hard work I put into my blog worthwhile. So I hope you will all join me in raising up a cup of decaff tea to me and my humble Colitis and ME blog :D A whole 365 days young! Mm hmm honey Xx


As you can see it's been a phenomenal year of awareness raising. There have of course been many other wonderful and inspiring campaigns launched within the last year alongside some great new IBD advocates all working hard at raising awareness of both Crohn's Disease and Ulcerative Colitis. Though we must pay thanks to those who were there long before us carving out the stepping stones that allowed such campaigns to have the strong backing that they deserve. A huge WELL DONE to ALL who took up a fundraising challenge this year. I know I personally would like to say a huge thank you to all those who have put themselves on the line and to those willing to stand up and have their stories heard as we aim to raise awareness and understanding of both Crohn's Disease and Ulcerative Colitis. THANK YOU to those who lead the way and set the standard of great IBD awareness.