I just need to rant, I am so fed up and tired of being ill

[ProfessorInkling]

I have so much I want to do, and things I need to do, and not enough energy to go around and I am so fed up of it.

I was diagnosed with Ulcerative Colitis nearly 10 years ago and every year it seems as though my stamina and capability reduces, and it's like I didn't see this coming - after diagnosis and meds I felt so much better quite quickly and just got on with things.

Since having Covid a few times my ability to bounce back is just gone. I get breathless doing the smallest amount of housework. I could sleep so much if I let myself. If I have a busy day, I need a quiet one to recover. I am only 45!

I want to run and swim and clean my car, cook nice dinners, grow things from seed, read all the books I own, learn French, print and frame all my photos, retrain for a second career, join a book club, a choir, a netball team!

Instead I am bumbling through the days and 'just about' coping and I am so, so sick of it all. I get so frustrated I could cry! Then tell myself that's pathetic, have a word... then I might have a good day and forget how miserable times like this are. I don't have enough good days to achieve anything.

I have never identified as being a person who is ill and it fucking happened anyway.

First, you need to give yourself permission to rest - it isn't laziness, it's essential.

When did you last have bloods done? If anything even shows at the low-end of normal, insist that they treat it - you need everything to be top-notch to make up for the effects of the disease & to ensure your body is properly supported.

Have you had a review with your gastro this year? If not, get it brought forward. You & your meds should have a review. How have they monitored you since diagnosis?

Are you keep properly hydrated? If you're living with diarrhoea then you should be using rehydration salts regularly. If your electrolytes are out of whack, it can cause breathlessness & physical weakness, I know from experience.

Have you ever seen a dietician? You can be referred to a dietician with experiencing in treating IBD who can help to ensure your diet is maximised to support your health & energy.

Covid has had a significant impact on everyone but especially those with pre-existing conditions. Once you've had a full review (including colonoscopy if it's been a while), and a full blood screen, then you should request your gp investigate for long-covid.

Practicalities aside, I know where you're coming from. I've lived with it since childhood and it's tough, and that's before you factor in the impact it has on our ability to lead the lives we want. 💐

You really need to be reviewed by your consultant and see your GP about the breathlessness - you're not making a fuss, it's a legitimate deterioration of your health. It could be UC, it could be something else.

In the meantime, feel free to offload here as much as you need!

Instead I am bumbling through the days and 'just about' coping and I am so, so sick of it all. I get so frustrated I could cry! Then tell myself that's pathetic, have a word..

I also suggest you read up on pacing and the boom & bust cycle. Learning to manage fatigue does help. Someone recommended the Visible app to me (the app is free) and it has helped.

I have never identified as being a person who is ill and it fucking happened anyway

Yep, time to do away with old notions of being able to discipline your way through ill-health. Sounds good in self-help books, the reality is very different.

Sending a big hug. I have RA and am off work with sore joints and bone crushing fatigue. It feels relentless sometimes and the next person who tells me I don’t look ill will get punched out of frustration.