3 September 2014

Tide of emotions

It will come as no surprise when I say that the tide of emotions that come hand in hand with a chronic illness can be compared to no other.

How is it I feel so utterly helpless and vulnerable whilst at the same time feeling strong, united and empowered. It's a really bizarre mixture of emotions. Throughout my battle with Ulcerative Colitis I have felt the highs and the very dark lows. Mainly the highest high was thanks to the steroids they sometimes hand out which means I literally was HIGH on life ahaha (trust me Prednisolone will make the sanest of person CRAZY!!) I will happily admit to being one of these such cases.

Facing your own mortality is a strange place to be and I am not embarrassed to openly admit that I have been through this stage. I'm probably more comfortable talking about this stage of the battle with a crohnic illness as it's a stage I have been through (more than once) but thankfully this is not where I am currently at. So I'm going to talk about it because if your a loved one of someone who has Crohn's Disease or Ulcerative Colitis then you should totally know all of the facts, sides and effects it has on a person.

There have been times when I thought I was dieing and in fairness I think I was well on that road. My health was so poor that my body was not far from shutting itself down. I'm now in a much better place so please nobody worry for me - I'm fine, I'm actually doing pretty well. Anyhow back to the topic. It is said that many face mental health challenges/battles because of IBD and I can whole heartedly understand/see how this can be. I thankfully have not had depression though I have had extreme lows - thoughts to myself like 'it would be so much easier if I wasn't here' 'there is no happiness for me while I have Ulcerative Colitis' etc. I was at a point where I was so downtrodden and sad/unhappy that all I was thinking about was my own mortality. I'm sure many of us have been through the 'Why me?!' 'This isn't fair' 'I just want a break from feeling unwell'. Truth be told...it's super hard to live with an illness day in - day out with no rest-bite in-between for the duration of your life! I speak with many who are struggling, many are in the same exact position I was in...some worse...but know that you will be okay! You may never be great...but you will be okay!!
It's at moments like that, when you are at your lowest that you find it hard to grasp onto a reason to smile. For me - my cat playing was enough of a reason for me to snap out of my horrid mood. To see nature at its best, with no cares in the world is a joy and a blessing to watch. Sometimes in life you have to get back to basics. Stop running around and being caught up in the madness of life and illness and just sit and watch as life continues on around you. Sit for a while watching the birds interact and see that life's not so bad after all.

I feel it's important to be as honest as possible about every aspect of Inflammatory Bowel Disease as its most definitely not all roses and sunshine! Unfortunately mortality and death is something that needs to be discussed. I hear time and time again of people who are completely unaware that people can and do pass away from complications from both Crohn's Disease or Ulcerative Colitis. The important word in that sentence was 'due to COMPLICATIONS' this means (from my understanding) that you can not directly die from having Inflammatory Bowel Disease but there are a lot of high risks which sadly do and can lead to the loss of life. These could be such things as complications from surgery or toxic megacolon to name only a few.
*Disclaimer, I am not a doc so please double check any of the info I hand out*

Life can be hard at times there is no denying that and I'll be the first to put my hands up and say life has thrown more than a person should have to bare at me. But- I am still here, going strong as are you too :)

What I find fascinating about writing a blog is the way I can document how I'm feeling at particular times in my journey with Ulcerative Colitis. I wrote the above blog post many months ago and in all honesty I'm not sure why I never posted it...maybe I was worried of how people would receive the post or maybe I felt it wasn't finished. Over the past few months, the more involved with the IBD community I find myself the more I hear about beautiful souls who have sadly lost their battles. These have ranged from gorgeous young women to those later on in life, for we can leave at any age. I think for this reason alone we shouldn't shy away from the topic of death and I feel it is super important we make clear how serious both Crohn's Disease and Ulcerative Colitis can be. We also need to make clear that yes these are physical illnesses but we go through emotional hell!
What you don't see is the fatigue, anemia, anxiety, depression to name but a few. There is so much going on behind the 'I'm okay' persona. We don't have much of a choice, we must continue to stand strong and fight. No matter how downtrodden you are or how many times you cry in a day...you WILL find a reason to smile again. I am living proof of this. I am now in a much happier place, my emotions are no longer all over the shop. I find time to giggle and smile. Life is still pretty sh*tty living with this illness but I take it day by day. Not all days are bad, find the good in each day no matter how big or small.

To family and loved ones please know that there is so much going on inside that we often fail to mention. Whether due to not wanting to worry you or not wanting to feel a burden but I feel it's important to give you an honest version of what we go through. There is no manual to having your whole life altered out of the blue, all we can do is try and your understanding helps tenfold! x

11 comments:

  1. this is the 1st blog i have ever read and i feel so happy (sorry)that i have uc and now i know there is some one else who feels like me, thankyou you have put a smile on my face

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    1. I have no doubt that others feel the same, it just takes a little time for people to feel comfortable enough to talk about it. You are very much not alone or alone in your way of thinking Xx

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  2. Thanks for putting up this blog. I'm going through a flare and it is so isolating and you describe exactly how I feel. So crazy. Trying my best to stay calm and rest.

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    1. Thanks for stopping by Annie! The key I would agree is to rest up, take a little 'time out' and go back to tackling the world once you've mustered the strength. Take your time Xx

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    2. Thanks I do think the enema I am taking are helping. Feeling more positive.

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  3. Like Floyd. This is my first blog I have read on my newly diagnosed ulcerative colitis. Your words are very helpful and marvellous. I know i have a long way to go in my recovery but will no longer feel guilt about the hidden symptoms I have been feeling. Thank you. I jist been to be patient with myself butr do feel I am a grag on family and friends. I ahd no idea how bad I would eel with this and how long it is taking just to get the meds right. Thank you XX

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    1. Unfortunately it does take time to find a medication that works for you but hang on in there, that day will come Xx

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  4. I was diagnosed with UC when I was 8 years old, I am now 27, with multiple surgeries under my belt. I struggle from day to day, I can't go out and do things that a "normal" 27 year old should be doing. Everyday I feel like this disease has robbed me of a normal life. It's difficult to talk to people around me, because they don't know exactly what I'm going through or how I'm feeling.

    Reading this blog has helped me realize that there is people out there that feel the way I feel, and I thank you for sharing this post.

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    1. You are most definitely not alone in your fight, there are millions of us in the world tackling Crohn's Disease or Ulcerative Colitis...you've just got to know where to find us all ;) Start by searching the #GetYourBellyOut campaign Xx

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  5. I have Crohn's disease and have had just over three weeks in hospital. I had a couple of operations in there and finally had a colostomy. I will never let Crohns beat me, like you I have my low moments but it's true , the simplest things remind me why I battle this. A few times I've thought 'this is the end' and been very ill but I am always smiling and positive. I always think there is someone out there a lot worse ��.It's not until you are well you realise how ill you have actually been . Crohns never goes away but if we stay strong and happy it helps!

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    1. Sorry to hear about your recent hospital visit. Keep strong, keep fighting Xx

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