Posts

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.

ulcerative colitis surgery sub total colectomy with end ileostomy

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.

wild swimming chronic illness

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.

sam and Timm Cleasby

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

A day in my life

I thought I’d give you a glimpse into a day in my life when I’m presenting on the radio for the BBC.

If you don’t know me, I have an ileostomy because of Ulcerative Colitis and two hernias, I’m awaiting surgery to repair these and it’s going to be my 8th operation.

I’m struggling a lot with pain and fatigue and so it’s tough to be working right now but I’m plodding through and I love being on the radio so much! I talk about managing fatigue, counting spoons and weighing up whether I can take painkillers or drive a car.

You can watch a day in my life here.

You can find my usual weekly show Nowt So Strange As Folk here and the show I covered here.

Enjoy!

Sam x

Living with chronic pain

I hope you’ve all had a lovely Christmas, it’s been a pretty quiet one in the Cleasby household which has suited us just fine. We’ve had a few visitors but it’s been mainly just the five of us and lots of chilled days watching movies, playing games, eating cheese and ham and family time, so all in all it’s been a good one!

I was unwell on Christmas Day, I do t know whether it was a tummy bug or something I’d eaten, but I was up almost all Christmas Eve on the loo and spent the day very tired, poorly and done in. But as we had a quiet day at home planned, it didn’t really ruin anything. I couldn’t eat and spent most of the day laid on the sofa, but I had Timm and the kids with me so it was still a nice day.

Christmas Chronic Illness

And it got me thinking about how whenyou have a chronic illness, you really learn to live with an almost constant feeling of being unwell. I find it hard to explain to people how I have been in pain every day for the past six months, every single day.

I take two types of strong painkillers every day just to get through the day. And living with that sort of pain then becomes the norm. It’s a really shit norm, but it is the life I have.

I have two hernias, one parastomal hernia behind my stoma and one incisional hernia at a previous surgery site. They open up and my insides push outwards any time I’m not laying flat on my back and they hurt! The pressure is a constant dragging pain and then there’s also sharp pains as they go in and out.

I also have a 6.5cm cyst on my ovary and just found out that my Fallopian tube is also inflamed, swollen and filled with fluid. These hurt too, it’s a gnawing, aching pain in my groin all the time. My stomach is so swollen that I look 6 months pregnant, everything is so tender.

Due to the 7 surgeries in the past 5 years, I have a crazy amount of adhesions, basically all my insides are stuck together now, I have so many bits of mesh and pig skin holding my stomach muscles together that everything twangs and aches and stabs.

And I’ll be honest, it’s getting me down.

I haven’t walked my dogs for months. I’m in agony for days if I try to do anything more than sitting. We went to the cinema and shopping on Boxing Day and I spent 2 days recovering. I have to hire mobility scooters to go to shopping centres as I can’t walk far without feeling like my insides are going to burst out of my stomach Alien style.

But what I find really hard is that it’s so tough to explain it. I am waiting a surgery date but doctors feel that if I’m taking painkillers everyday that I’m ok to wait. And because I try my damnedest to keep on doing normal stuff, I can understand that people think I’m ok.

But im so fed up, I’m so tired of it all. I wake up every day knowing that the minute I get out of bed, the pain will start and though I’m stoned off my tits on codiene and nefapam through the day, it’s a constant thing.

If I really want to do something, I forego the pain relief so I’m not dozy and sleepy but that means the pain is even worse. It’s a constant balancing act of whether I take drugs and lay still or try and have somewhat of a normal life and do it in pain.

I know this is a pretty miserable post but I really wanted to try and explain what life is like when you live in pain every day.

Not many people can understand it, but think about a time when you were in pain, maybe you had a knee sprain or a horrid ear infection, perhaps you had an awful stomach bug, now try and think about how you’d feel if there was no end in sight to that pain, if that pain was your normal base level every day.

If im grumpy, absent minded, blank or ignore you or your texts or phone calls, please know it’s not personal. If we chat and I can’t remember the word I’m trying to use or just plain forget what I’m saying, know I’m really trying my best. If I cancel on our plans or just wont commit to them in the first place, know that it’s not that I don’t want to, it’s just too much to cope with right now.

Please just know that I’m trying my best

✌🏽& ❤️

Sam x