On Living With Illness – My Story

There’s no easy way to talk about poo, really. Of ALL the illnesses people can have, I genuinely think that gut-related ones are the most embarrassing. Poo is taboo! And our reluctance to talk about these things, seek help when we need it, costs lives. So I’m sharing my story today to kickstart “On Living With Illness”, my sister series to “On Being Childfree” to again, try and end the isolation that people feel on having illness be a part of their life whether as a carer, or living with it themselves.

There are the illnesses we all know about, the visible ones, the serious ones. But did you ever stop to think about how it must be to live with an illness every single day when outwardly you look fine and it doesn’t appear to have any negative impact? I never thought I would be that statistic and yet just after I turned 39 I sat opposite a lovely female doctor who in a very no-nonsense way told me I might have bowel cancer (it was either that, Crohn’s Disease or Ulcerative Colitis – she was right). I’ve spoken openly about living with an auto-immune disease ever since and I want to try and encourage people to seek help, get tested or at the very least know they aren’t alone. This is my story.

It was probably some time in 2018 when I noticed blood when I went to the toilet (not for the first time I should add. A few years earlier I’d encountered the same issue and was misdiagnosed). I was going through a really stressful time at work, put it down to that and because it came and went, didn’t think too much of it. I’d also had quite a difficult experience at the doctors when I’d been previously with a similar complaint so I was loathe to return and get it checked out.

As the months went by, it didn’t go away. I even came on Instagram stories and spoke about having symptoms which very closely replicated an Irritable Bowel Disease but STILL didn’t go to the doctor. By this point, 2019, I’d now left work and embarked on my freelance year, taking on the kitchen renovation last February. Looking back on those stories now, I looked so ill but I put it down to exhaustion from that epic endeavour. Even when I started getting large lumps on my tongue, one of the side-symptoms of Ulcerative Colitis, I just explained it away with post-kitchen-renovation fatigue. I’d basically pulled 6 all-nighters in a row and had barely eaten, no wonder I looked so ill.

Post colonoscopy. I felt so ill and then had a panic attack as soon as I left the hospital

February rolled into March and things didn’t really improve. I was bleeding every time I went to the toilet and starting to lose weight. I also found I was very lethargic and losing energy. I used to be able to run up our two flights of stairs but was now having to crawl on my hands and knees. I couldn’t get down to the end of the road without being completely out of breath. Finally I went to the doctors but make no mistake, it wasn’t because of the bleeding. It was because I could no longer rush round at top speed and if there’s only one thing in the world that makes me mad it’s not being able to live life to the full. I knew I had to get help.

Thankfully the doctor was on my side this time. She took one look at my deliriously pale face, I told her I’d lost nearly a stone in 4 weeks which for someone who loves food like me is an impossibility (I have never been 8.5 stone in my adult life, and at 5ft8 it really doesn’t suit me) and said:

“We will get you tested but you have one of 3 illnesses. Bowel cancer, Crohn’s Disease or Ulcerative Colitis”.

Honestly? I wasn’t even terrified of any of what she said. I was so relieved to be at the start of getting better. Because even my optimistic nature knew that I’d be one of the lucky ones who gets a diagnosis and doesn’t have to wait years and years without knowing what was wrong with me. Even if it was cancer I just wanted to know.

I was very fortunate that blood tests and my colonoscopy all happened within a week of my doctor’s appointment. The blood tests showed severe iron deficiency anaemia, I was just one level away from needing a blood transfusion and hospital stay so no wonder I couldn’t climb the stairs. The doctor wanted me to go straight to the surgery and start my iron supplements. “I CAN’T”, I wailed down the phone. “I’m on laxatives ahead of my colonscopy, what happens if I poo myself on the way there?” See, you become totally ok with talking about poo 😊

My colonoscopy also proved very run of the mill – I’ve had both general and local anaesthetic a few times now (general is my favourite, best sleeps ever!) so it’s nothing I’m scared of. Diagnosis immediate – my colon was fucked from top to bottom (excuse the language) and it was indeed Ulcerative Colitis which along with iron-deficiency anaemia I’ve now lovingly referred to as ‘Maud’, since UC is a lifelong condition and there is no known cure.

So. Life began again. I spent pretty much 4 weeks in bed dosing up on 9 tablets a day, trying to stop pooing and feeling pretty shit (ha!). I got through it by re-watching the entire of Game of Thrones ahead of its final season launch and thanking someone somewhere that I wasn’t in full-time employment. The headaches in the first week as my body adjusted to the high levels of medication were horrific but subsided. I started cooking, everything from hummus to breakfast, lunch and dinner, determined to feed myself back to health. I hated all things unhealthy, especially sugar and I’m pretty gutted that didn’t last to be honest.

Miraculously, I started to go up hill almost as quickly as I’d gone downhill. The doctors had warned me that it could take months for me to find any kind of strength again but just a few weeks after being diagnosed I was tentatively up and about, and determined, SO DETERMINED that although I knew Maud wasn’t going anywhere, I was going to control her and not the other way around (although she and I have been in arguments about this ever since).

It’s very much my journey, this one. I was assigned to a consultant at my local hospital for ongoing care. I went once, and never went back. He said he was pleased with my progress and wasn’t expecting it, asking what I thought the solution was. “It’s because I’ve been eating really healthily” I told him. Which he told me wasn’t possible since food has no impact on our health and let me tell you I am THIS bored with hearing that medication is the only answer.

Mine is a tale of fortune. I know how lucky I am to be in a position where despite having this chronic illness, I can live a relatively normal life. BUT just because I don’t look ill, doesn’t mean I’m not. When a sick person gets sick (like a cold or stomach bug) it takes a hell of a lot longer to get better. I get tired a lot more easily and it’s simply sheer bloody-mindedness that prevents me from staying in bed all day, even though I have learned how to rest when I need it and that perhaps has been the hardest change of all.

I don’t want Maud to define me, but she is now part of me. The part means that I have just as much right to those disabled toilets, “less able to stand” seats and so on as someone who is pregnant or an elderly person. I’m so glad to see more “not all disabilities are visible” signs popping up all over the place but it IS hard to change the narrative.

The biggest impact its had on my life though is making me so much more aware of what others must be going through, even if you can’t tell. Admitting weakness is seen as self-indulgent and that’s such a ridiculous, backwards attitude. Illness is debilitating and can be so isolating if you feel you’ve got no-one to talk about it with, no outlet to share. I’m hopeful that this space will be that opportunity and already have two stories lined up to describe their own experiences of living with illness and how its affected their lives.

People are resilient, that much is true. But it’s all so much easier when we’re there for each other, strangers or not. If you have a story you’d like to share, please do get in touch. The door is always open.

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5 Comments

  1. February 14, 2020 / 8:11 am

    I’m so happy you’ve found answers and support relatively fast. Living with an autoimmune condition is an everyday battle, and it can be scary, overwhelming and boring to be honest.
    We look fine to others but they don’t see how much effort and will we must channel to function.
    My best day as an autoimmune warrior is a healthy person’s shitty day.
    Sending you lots of love and many many great days!

    Annamaria, xx

    • Lins
      Author
      February 15, 2020 / 9:21 pm

      Thank you so much Annamaria and honestly it’s been connecting with so many like-minded people that has really helped me throgh those most difficult days. Big hugs to you X

  2. Fiona
    February 14, 2020 / 9:48 am

    Such a good blog, and really resonates with me having to live with my husband. It is amazing how one day he will be fine to do anything and then the next day, hasn’t got the energy to get himself out of bed. The journey of learning to self care is a long one, we are all terrible at it and even with an illness when you have no choice, the guilt that he feels “I should be doing something, not just lying around here” is still great, even though he knows he has no choice but to rest. We are also one of those families that totally forgets that other people are not okay with hearing poo chat at the dinner table – it is just such a normal topic of conversation for us!!!

  3. February 14, 2020 / 10:15 pm

    Thank you for sharing your story – taboos need to be broken!

    • Lins
      Author
      February 15, 2020 / 9:19 pm

      Thank you Vicki and for kindly agreeing to share your story. Here’s to making the world a more tolerant place x

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