person trapped from enjoying a nice day

Too Sick to be Social

A couple of years ago when I was particularly unwell, I remember feeling like life was literally just passing me by. All I could do was watch, because I didn’t have the energy to reach out and grab it.

A difficult time with ulcerative colitis symptoms

I was at a point where I was having to try some medications that had not worked in the past because I’d had my J-pouch disconnected for a while, so my team wanted to treat it as though it was a new pouch and start again. I wasn’t holding out much hope, and in my mind, I felt as though I was just biding my time before needing more surgery. Surgery was fine with me if that’s what was needed to feel better!

It's exhausting because you know the end could be near, but you seem to be fighting through life to get there.

I was proud of myself for getting up every day and making it to work because it was really hard. I needed the money to pay my bills but going to work meant I had no more energy to do the things I enjoyed, and that's all there was to it.

An invisible illness that others don't understand

I knew that the people around me were doubting how sick I was because I didn’t look particularly unwell from the outside. I was constantly turning down invitations to do things because I was too tired, and it seemed that having a chronic illness and battling fatigue was not a satisfactory reason for some people. I didn’t want to feel like I wasn’t capable of going out and doing things, so me having to accept that was the biggest hurdle. To then feel like I wasn’t believed just made me angry. I was doing my best, and that should always be enough.

Fatigue and limited energy to be social

Pushing myself to go out for the odd meal and attending important things like baby showers or Birthdays was as far as I could possibly push myself. People don’t realize the amount of energy just going out for a meal takes. Yes, it means I don’t have to cook, but getting ready, applying a little makeup so I looked more alive and actually having to hold conversations while out was a huge drain on my already limited energy! I only managed to shave my legs once a week, at the weekend, for f**ks sake!

The weekend would arrive, and of course I would have liked to have been out enjoying myself, but working all week meant my weekend involved catching up with the housework and trying to do some support stuff online that I couldn't do after work during the week because after feeding me and the dogs, I was completely out of energy.

It's upsetting to no longer have an unlimited amount of energy

My energy levels have improved now, but I still have to be careful about the number of things I agree to do. Two occurrences of being social in a row are too much, but one or two a week, I know I can handle. We do what we can with what we've got. It's crap enough for us to have to live life like that, especially when we can look back and see a time that we seemed to have an unlimited amount of energy. It's upsetting, but it IS how it is. Other people judging you when you're doing your best, and when they have no understanding of your disease, is completely out of order.

Just so you know, if you’re in that boat right now, I AM PROUD OF YOU!

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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