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.

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

I was exhausted. I felt like the end could be near, but I was having to fight through life to get there…

Choosing where to spend vital energy

I was proud of myself for getting up every day and making it to work because it was really hard. I needed money to pay the bills, but going to work meant I had no more energy to do anything I actually enjoyed.

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, but it felt like 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 accepting that was my 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.

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 realise 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 whilst out was a huge drain on my already limited energy! I only managed to shave my legs at the weekend, FFS!

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.

My energy levels have improved now, but I still have to be careful about the number of things I agree to do. Two days of being social in a row is 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 when 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!