Can You Believe It’s Been A Year
It’s been a year since I was diagnosed with Ulcerative Colitis and I can’t believe it. A little round up of how I got here…
In The Last Year
After completing university and graduating in November 2013, I went to and from the GP whilst working two jobs. I was very stressed. Not eating properly and becoming really thin. After tests, I was told that I was to attend an emergency hospital appointment. That started me on the route to my diagnosis.
I saw a doctor who put me on steroids because my large bowel was so inflamed. I then was referred to an IBD specialist that was going to perform my colonoscopy. There is a post about my experience here.
It was a year ago today, I got the biopsy results. I have Ulcerative Colitis.
Over this last year, I’ve had a few ups and downs. It’s pretty unpredictable. Although I have achieved moments of control, it doesn’t last as long as I’d like. Like I said in my June update, I want to help as many people as I can. Here are a few things I’ve learnt about living with a chronic illness.
A Depressive State
I’m known to have a happy, positive and goofy outlook. Taking bad situations and trying to make a joke of things. I actually came out of my colonoscopy saying “pfft, 20 minutes on my back and it wasn’t a good experience”.
I have never had a serious streak of depression in which I needed medication. But I have had moments where I was not sleeping. I couldn’t control negative or upsetting thoughts. I was irritable and short tempered. And generally felt like I was hopeless and couldn’t do anything right.
This is where I say I experienced a depressive state. Where I knew it and was trying to look on the positive side, but in some moments, I just couldn’t control it. I realised it’s going to happen now and again. It’s the negative side of having a lifelong illness. I don’t know if I’ll need medication or counselling. Because I am newly diagnosed and am still finding my feet.
As a disclaimer: Depression is a serious illness. I am in no way making light of it or even saying that is what I’m experiencing. I am only interpreting what I have felt and from explanations of what others have felt in a way that seems somewhat logically fitting.
Anxiety & Eating
This is something that I am currently tackling.
Since I have been diagnosed, I have missed birthdays, celebratory nights out, social gatherings, new years eve parties and I have had to reschedule appointments and interviews. I have been so scared of my Colitis getting me.
If you don’t know a lot about Ulcerative Colitis, it can leave you with no or very little control of your bowel movements. I will be getting ready to go out, then it’ll hit me and then I panic.
“What if it happens again?”
“The last one was so sudden.”
“There’s always a line for the toilets.”
“I don’t want to be caught short and everyone see.”
Those thoughts go around and around in my head. Then bam! Full blown panic mode to the extent of having a panic attack. This goes for travelling as well. Being stuck in a car, bus or taxi with no bathrooms around equals a full blown panic attack.
I am not alone in experiencing this, but it does make it harder to trust in going out. In a week I will go out to the supermarket. I may see a friend or family member or I may be out for an appointment/interview. I would say that collectively it’s around 10 hours or so a week. Meaning, I spend around 158 hours at home. Too scared and untrusting of what will happen.
When I do leave the house, I don’t eat. If I have an appointment at 12:00, I won’t eat until I know I’m home and safe. I know a lot of other people do the same, because food affects us differently each time.
Friendship
I have 100% realised who I can rely on and who is there to support me.
I don’t look for instant knowledge of my condition. It’s a lot of information at once and some things can change. I just want someone to try not to berate me because I couldn’t make that meeting or that night out. It’s not like I can help it. If I say I will go, it’s because I want to. If I say I’m not going to be able to, it’s because it’s out of my control. I am always sorry about it, but what can I do?
As I mentioned earlier, I spend a lot of time at home and I rely on those who pop round for a cup of tea. To have a catch up and just be in company with you. Those friends (they know who they are) are the ones I know will be around.
Love
This part is a little “heart on the sleeve” but it’s something I’ve learnt. And something I have seen friends with IBD go through. Telling someone about your chronic illness can come with embarrassment. But when you are telling someone you find attractive, it’s even harder. I feel you have to though. It doesn’t have to be the first date but, there are a couple of reasons why I think you have to tell them early on.
Firstly, if they aren’t going to understand, then they shouldn’t be around. Simple as. If you are realising who your friends are, then why make the rules different for someone because they’re attractive?
Secondly, it’s not what they want in a partner. Yes, that’s hard to hear and hard to deal with. I know a lovely guy who loves to travel. He’ll always ask me how I am. We’ll catch up and he’ll talk about where he’s been and off to next. With my health and anxiety when it comes to travelling, I knew I couldn’t go along. In this situation, it was my choice, but it should also be his/hers. They may be the most understanding people, but they may have life plans that can’t suit yours.
Thirdly, in some cases, those with IBD either can’t have, or will have difficulty with, having children. It’s not something that everyone with IBD will experience, just some with very extreme cases. If you know, then they’ll have to know at some point too. For those who want children, it’s not fair to have that knowledge and not tell them.
To Wrap Up
Before I finish this post I want to say a massive thank you to my mum. She has been the biggest support this past year. Been to all my hospital and GP appointments. Dragged me out of the house and settled me when I have had panic attacks. I love you.
As always, thanks for reading…
