Thread by @adamfare1996

A day in the life of my body and disability management…

This is a “good” day, so the best-case scenario.

1/🧵

1. Wake up at 05:30-06:00
Then spend about 30 minutes rolling around in bed trying to wake my bowels up a bit (they often almost paralyse overnight for some reason).

2/🧵

2. 06:30-08:30
- Go downstairs (takes a while)
- Have my morning meds.
- Make a very strong coffee (not to wake me up but to stimulate bowels)
- Spend the next 90 minutes rolling around, massaging, and hydrating. Also trying to get my trigger fingers to un-trigger.

3/🧵

3. 08:30-10:30

Irrigation, which involved infusing 2 litres of water into my stoma, then waiting as peristalsis is instigated and it (hopefully) makes my bowels expel waste.

Then spend about 30 minutes recovering from the pain & inflammation.

4/🧵

4. 10:30-11:30

I still need another hour for my bowels to settle before eating, so this time is spent doing physio on my “good” side of my body, and other physio to keep my body strong and mitigate arthritis etc…

5/🧵

5. 11:30-12:30

Finally I can have some breakfast, which takes about 30 minutes to eat (otherwise it causes too many symptoms)… followed by 30 minutes letting it settle and the immediate bowel symptoms easing.

6/🧵

6. 12:30-14:30

Within this time I have about 1 hour of physio on my “bad” leg to do, to try and mitigate muscle wastage and other decline on it. This also causes a lot of pain, so afterwards I am basically immobile for a while so usually spend lying on the sofa.

7/🧵

7. 14:30-16:00

Making and eating lunch (yes it’s late but I can’t eat until 11:30am so haven’t got much choice).
Again, slowly eating (as well as taking a while to make thanks to mobility issues), followed by 30 minutes of symptom management after.

8/🧵

8. 16:00-17:30

Finally I can actually try to “relax” a little, and usually watch a TV programme or YouTube.
I can’t do much because the pain is still bad from my physio, and my leg is even weaker as it’s tired. So it’s static “rest”.
Also have my PM meds in this time.

9/🧵

9. 17:30-19:00

Personal hygiene (usually shower wipes as a full shower is too much for every day).
Bowel massaging to get ready for main meal, otherwise I can’t eat it.
Cooking and eating main meal.

10/🧵

10. 19:00-20:30

30 minutes of letting bowels settle, can’t do anything other than sit there in a lot of discomfort.
30 minutes of massaging and rolling on the floor to manage symptoms.
30 minutes trying to “relax” a bit.

11/🧵

11. 20:30-21:30

Evening meds.
Evening snack/food as I can’t go to bed on an empty stomach as it causes massive pain (but if I have too much then it’s also an issue… can’t win).
Another 30 minutes (at least) rolling & massaging to try and move gas so I can sleep.

12/🧵

12. 21:30-22:30

Time to actually try and “switch off” a bit before bed… though often I still need to do more massaging etc to get ready for bed.
This will usually be whilst watching TV and trying to get as comfy as possible.

13/🧵

13. 22:30

Time to go to bed and try to sleep.
Overnight I’ll wake up at least twice, and often have to spend time massaging etc to move pockets of trapped gas & managing nausea, so I can get back to sleep.

14/🧵

14. Reminder that this is a GOOD day, as in the BEST it can be.
This also doesn’t include all the pain that comes with these things, the exhaustion of it all… and on “bad” days, it’s a lot worse than this.

So yeah, this is why our lives are ruled by our conditions…

15/🧵

And if I don’t do all of this?

My irrigation doesn’t work, meaning I get bowel blockages.
My bad leg wastes away more.
My good leg get worse arthritis and tendinitis symptoms.
My core degenerates meaning I could herniate.
My symptoms are a lot worse.

So yeah… no choice.

16/16

Just to add...
This is every day.
No days off, no lie-ins, no holidays, no weekends.
And even if I'm sick (like having COVID as I did a couple of months ago), all this still needs to be done.

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