I wanted to start some conversations with IBD patients to get to know more about their experience with fatigue and creativity. To do this I posted some conversation starter questions on IBD pages on Facebook. I have taken all names away from comments for animosity. Follow this link to see responses for the following conversation starters.
This conversation starter was intended to bring light to the experience of fatigue in a sentence or two. This wasn’t the most positive post, however, due to the majority of people understand this symptom it was great for everyone to see that they are not alone.
- I don’t know how I still keep going – the fatigue is the worst bit. It’s changed who I am as a person.
- Having to explain what brain fog is, and why sleep won’t help me feel better. Just because I look okay, doesn’t mean I feel okay. One of the hardest symptoms of the disease because you can’t take painkillers or prove that it’s real to people.
- Struggle to give my daughter the attention she deserves, it’s an awful feeling x
- Worse part is the guilt you feel as a parent some days
- It’s a never ending nightmare
- People don’t understand how debilitating it is and they expect you to be able all the time!
- Utterly debilitating
- Horrific and never eases the only symptom that is relentless
- Falling asleep in the shower leaning against the wall
- 51 today, have to go and lie down for an hour this afternoon as I’m falling asleep on the couch watching TV, luckily I have a fantastic wife who understands.
- Telling people you are so tired it’s like climbing a mountain just to get up and get showered and they say “ oh yeah, god I’m really tired too, I’ve been at work all day and then went to the gym”.
- Mate, you have literally NO IDEA what kind of “tired” I’m talking about
- Feel like just shooting myself in the face,it’s causing serious mental illness,my mind has OCD diagnosed and other issues so my mind is running 100 miles A minute but my body just can’t keep up or even remotely do what I want it to do so Iv fallen in to a depressing state
- Soul destroying, other peoples reactions, they just don’t get it.
- Life long xx
- I can get thrown by one small thing… Can’t find my socks? Complete and utter shut down. That’s what happens when I’m fatigued. Oh… And easily confused and emotional
- I’m in remission and fatigue is still a problem so rest when I can ( I’m self employed) x
- Feels like I have bricks attached to every joint pulling me down all the time. Just so exhausted and heavy all the time, no matter how much sleep I get! I drove today to the office and had a conversation with peeps (distanced of course) by the time I got home, a wave of exhaustion came over me. Its like you’ve been awake for days…I hate fatigue….one of the biggest symptoms that really p!ss me off xxx