Chronic illness: When to push and when to rest

Something I say a lot is to listen to your body, but when you have a chronic illness, the messages you get from your body can feel warped and unclear. When you are unwell for a long time, possibly every day forever, how do you know when to push yourself and when to rest?

My background

I was diagnosed with Ulcerative Colitis in 2004, in 2013 I had my colon removed and an ileostomy formed. This was meant to be my ‘cure’. After living with colitis for 9 years and going through many flare ups, pain, incontinence and medication, I was told that as colitis is only in the large intestine, that in removing it, they are essentially ‘curing’ the disease.

PERFECT! I thought. Only it wasn’t quite so clear cut. In the past 7 years, I have had 9 major surgeries. I had a pouch formed to reverse my stoma, only I had constant chronic pouchitis with it which felt worse than the original colitis! Then I had that all removed, including my anus and rectum and a permanent ostomy formed.

Then came the hernias, both incisional and parastomal. This meant that I have had to have multiple surgeries attempting to fix these issues including a full abdominal reconstruction in February this year. But you know what? I still feel like crap. I have a LOT of pain where the mesh is holding my body together. When I eat, food gets stuck and causes blockages, they think this is due to adhesions. I still have the joint pain and the fatigue from the Ulcerative Colitis and generally, my health sucks and I feel ill all the time. And there is no cure.

But I don’t want to give in to this. I am 39 years old and there is SO MUCH I still want to do. So I push myself to do more and keep going. And this is important, if I didn’t push myself, I really think I would lose it, if I just stayed in bed, in my home and didn’t push my boundaries, I don’t think my mental health could take it. But of course, I also still listen to my body and rest when I need to.

When to push, when to rest?

So when to push and when to rest? The only person who can answer this is you and it takes time to get to be in tune with your body and to learn what your limits are. With chronic illness, there is no black and white. What is right for you one day will be totally wrong the next. Week to week, day to day, hour to hour, our bodies are changing and you really have to learn to go with the flow (which is hard for a control freak like me!)

Self care is vital. Rest, medication (if you take it), exercise, sleep. I have found it so hard to be able to do these things without guilt. To have a rest day, or a bad day in bed when I can’t do anything, I find it tough to not feel like I am letting people down. But I am learning to accept that it is what I need to be able to give on other days.

And on my good days, I push. I go for a walk or a swim, I see friends, I do work, I make plans. I cook, I clean my house, I stay up late and hang out with my family. I make the most of those times and I appreciate how precious my health and energy is. When you have days where brushing your teeth is too much, you really find joy in the days where you can walk your dog.

You aren’t alone

I write this I suppose for two reasons. On one hand, I just want others in a similar place to know they aren’t alone. Because this shit is isolating. It is a mean spirited devil on your shoulder telling you that you are useless, that you are a burden, that your life is worthless. I never feel more alone than when I am in pain at 3am, checking the clock and counting up the abacus of ‘if I fall asleep now, I’ll get x hours sleep’.

Being chronically ill is tiring, it’s a full time job and it can be totally overwhelming. And so if one person can read this and realise they aren’t alone, then it will be worth spilling my guts to you all.

The other reason I write this is for those who aren’t chronically ill to try and explain what life is like. I know sometimes people look at me and see my social media and can’t understand why one day I am in the gym and the next I am bed ridden. Or how I can go away in my camper van when I couldn’t meet them for lunch that week. Or why I make these bonkers plans to fill my life with challenges when I tell you that I am exhausted doing nothing.

I’m sorry I don’t have an answer for you on when to push and when to rest other than to say to listen to your body, however confusing that conversation can be. And if you have the energy, then speak about your life, tell your friends and loved ones, make talking about chronic illness normal. But above all, look after yourself and give yourself some love, you are working harder than anyone will ever understand. And you aren’t alone.

Peace and love

Sam xx