My experience of chronic fatigue
Constant fatigue and exhaustion
This was different. It was relentless, and it felt soul destroying. All I was doing was resting, but the fatigue just wouldn’t let go if its hold on me!
I felt incapable of dealing with life. I went to work, because I needed to pay the bills, but I was well aware that I wasn’t “on form”. The things that I used to do without even having to think about, I found myself racking my brain over.
Too tired for daily tasks
I’d get home and take a nap. I’d pretty much stopped cooking, so sustenance came in the form of whatever was easy; cereal, pizza, noodles, or toast. The washing basket was forever full, and I only did it when I ran out of clean clothes.
The mere thought of having to shower made me want to cry, and it would take hours for me to actually build myself up to it, and even then, it would be as quick as is humanly possible, and it was ALWAYS followed by a nap.
My home was a mess, which was a constant source of frustration and stress. I’d leave cooking shows on all weekend in the hope that they would encourage me to cook something decent to eat.
I’d do a couple of minutes of the afore mentioned chores during some of the ad breaks (a few hours were often needed to build up enough energy for the 3 minutes of activity). It would take me the whole weekend to tidy round the rooms of my tiny flat and to change the bed.
No longer supporting others with IBD when the fatigue took over
I stopped going online and supporting others with IBD because I felt so negative about everything. My emotions were all over, and my fatigue bought with it a short fuse, so I often found myself just wanting to snap at people (online and in real life).
I felt useless because supporting others was important to me, but I couldn’t do it. I had nothing to post because I wasn’t doing anything, and I couldn’t just keep writing about how tired I was.
I’m sure people were only trying to help, but I couldn’t cope with the responses like:
“Take a break.”
“Have a nap.”
Emotional exhaustion on top of physical exhaustion
They just really p*ssed me off. I had nothing I could even take a break from! So, I stopped replying to texts too. The emotional exhaustion was too much. The physical exhaustion literally made me feel like my body was made of lead, so moving around felt like I was fighting my way through treacle!
I visited a GP multiple times, and the only conclusion they could come to was that I was suffering from depression. I tried to explain that I wasn’t not doing anything anymore because I got no joy out of it.
The fact that I was unable to do any of the things that I wanted to do because I simply had no energy, was the cause of my joyless-ness, and not the other way around!
How I kept my partner is beyond me because if it had been the other way around, I am pretty certain I would have walked away! I wouldn’t talk, or go anywhere or do anything, and I was always angry and irritated.
I even began to wonder if the GPs were right at one point.
My consultant didn’t even believe that I wasn’t tired because I was doing too much - she actually looked passed me and asked my mum: “Is she doing too much?”. My mum simply answered, “No, she’s not doing anything, because she’s not capable of it”.
Improvement in fatigue after j-pouch removal
I only began to feel an improvement after I’d had my j-pouch removed. I don’t think I realized quite how sick I was. Maybe because I had gotten so used to living life in a flare, while multiple treatment options were tried and failed.
Slowly, as my health improved, so did my energy levels. I can’t say that I feel anything like a “normal” person. I still experience fatigue, and I still do too much and have to spend a few days doing nothing but resting to recover.
But, I’m so grateful that I have the energy to even do too much in the first place now! And, I can even change the bed all in one go – even if I do need a rest after!
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