The Good, The Bad and The Ugly - Good, Bad and Terrible Days

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I am working on a couple of posts just now, including my post about living with a catheter on holiday. But in the mean time I wanted to share what a day can be like with a catheter and chronic health condition. The problem with this though is that some days are better than others. I am going to compare 24 hours on good, bad and terrible days to give an example of the kind of problems I can face on different days. I’ve split my descriptions into three (good, bad and terrible) but there are many more notches on the spectrum and many variants to how a day might go. I have definitely attempted to go to work on some ‘terrible’ days and I actually have very few ‘good days’ as I have described and actually usually sit somewhere between ‘good’ and ‘bad’ most days.

I'm writing this from my own perspective, but with a view at illustrating what people with chronic health conditions may be facing each day. A person having a 'good day' might still have had to go through several routines and might still be in considerable pain. A 'good day' for some might simply mean that it is easier to hide pain and struggles under a smile. I know, in my own experience, I have a limit - I can mask my pain, both physical and mental to certain point and then I hit this limit and I simply can't any longer and it can be a very fine line between the two. It can seem like I am fine one minute and then suddenly really not very well. It can leave people questioning and comments such as 'well you were fine a minute ago' cropping up. What it boils down to is that you can simply never tell how much a person is hiding behind the ruse of seeming 'OK'.

A quick note on pain. On a good day I sit at a 3/4. On a bad day, such as as I'm having at the time of writing,I'm a 5/6 and terrible days have been from 6-9 and have very occasionally been 10s. On a good day, without pain killers I would be 5/6. On a bad day without pain killers it would be 6-9 and on the worst days, it doesn't seem to matter how many pain killers I take and sometimes the only solution is to go to the hospital and get admitted so I can have help managing my pain

Morning

Good:

First things first, I check my catheter bag. Urine is clear, good colour and doesn’t smell like rotten eggs. I’m off to a good start.
Then take a handful of tablets. Pain levels are OK. Co-codamol will be enough.
First catheter routine of the day goes as such: Wash Hands, (if wearing a night bag, detach and empty this), wash hands, empty leg bag, wash hands, clean and dry SPC site.
Onto showering where I try to keep my balance whilst supporting catheter bag, either by holding it and keeping it between my legs. Manage not to slip or drop catheter bag. All is good.
Drying and getting dressed is always a longer process: Leg bag is soaking wet. This needs to dry before getting dressed. Then I have to put on my uri-sleeve or catheter straps. Then I need to secure the bag wither with a G-strap (yes, it’s a dodgy sounding product) or a statlock. Skin isn’t too sore.
I feel OK, so I can manage breakfast.

Bad:

I wake up early because I have turned in bed and tugged my catheter, which has made my SPC site bleed.
I check my catheter bag and there is quite a bit of sediment and it smells.
Bladder spasms are bad and my lower tummy is pretty sore. I take a handful of tablets. Pain levels are pretty high and I need some co-codamol and tramadol.
I don’t want to get out of bed. I am dreading work, but I still need to go.
First Catheter Routine: wash hands, deal with night bag, empty leg bag, wash hands. Put on gloves, as bag is stinky and needs changing. Grumble because I have just sprayed myself with pee as I took the bag off. Dispose of catheter bag.
SPC site is over-granulated, so it bleeds when I clean it – I make an appointment with the nurse. GP receptionist grumbles as she tries to fit me in for a morning appointment so I can still get to work (I think I am her least favourite person)
I didn’t dry my bag enough and now my leggings are damp and smelly and I need to change.
I go to nurse appointment. She applies silver nitrate. It stings. A lot.
I finally get on my way to work. Its uncomfortable for me to drive.

Terrible:

I wake up very early, in a lot of pain and feeling sick. The UTI that I have been fighting for the last 2 weeks has went into my kidneys.
I take my strongest pain killers and my anti-sickness tablets and try to get back to sleep but now my bladder has started to spasm.
It takes the biggest of efforts to get up to simply empty my bag. The urine is bloody and full of clots, sediment and smells awful.
I have a temperature.
I take my morning tablets, including my antibiotics. I’m sick soon after.
I try to get a GP appointment, but they are all gone by the time I get through.
I know I am too ill to go to work but the thought of taking more time off makes me cry. I spend a good half an hour trying to decide whether to go or not, remembering all the times I have caused hassle at work by being unwell. I don’t want to have to make an A and E trip from work again or be too ill to drive home and therefore needing lifts and such from colleagues. I worry that if I phone in sick again, they might finally think enough is enough and let me go. I change my mind several times. I decide to try and go and then I am sick again and change my mind yet again.
I cry again after phoning in sick. I start to worry about money
I can’t manage breakfast at all.

Afternoon

Good:

I’m at work. I’ve had a few bladder spasms and I’m always aware of the pain in my lower tummy but I can ignore it for the most part.
I top up on pain killers and anti-spasmodics.
There is no queue for the disabled toilet. I wash my hands, empty my bag, wash my hands again, check my SPC site. Its not looking too bag.
I feel good and in control and so I find it easy to eat a healthy lunch.
I manage tasks at work and genuinely enjoy what I am doing.
I leave work feeling tired but accomplished and happy.

Bad:

I get to work. Colleagues ask me how I am feeling. I say I’m feeling a little under the weather. In truth I feel terrible.
I’m in quite a bit of pain. It is hard to ignore and I am having to concentrate really hard on what I am doing.
I take the strongest pain-killers I can and wish I was at home so I could take something stronger and go to bed.
I have a bad spasm and can tell there are worse ones coming. I disappear to the toilet for five minutes to hide while they pass.
I come back to my desk, only for the same thing to happen five minutes later and so I disappear back to the toilet.
I go to the toilet to empty my bag but I splash myself. I have to change my leggings. My SPC site is sore and gungy so I wash my hands again and clean that. I change my tubie pad.
I feel bad, but not too sick and because I feel rotten I just want to eat comfort food. My planned healthy lunch goes in the bucket and I get chocolate and crisps from the vending machine.
I leave work feeling exhausted. I’ve struggled all day and I feel like I am rubbish at my job.
I cry on my way home. I forget about the good days. It all just seems like one constant struggle and I am feeling sorry for myself.
I worry that I am going to have to cancel more plans for the weekend.

Terrible:

I’m in bed, with my heat blanket. I’m counting down to when I can next take pain killers.
I have a sick bucket beside me. I haven’t kept anything down.
No matter what position I lie in, I am in pain.
I try to read but its pointless, I can’t concentrate.
I’m exhausted but I can’t sleep much because of the pain.

Evening

Good:

I get home. I’m tired and want to have a nap but I know I am having a good day so I need to make the most of my free time.
More of the same catheter bag emptying routine.
It feels so good to get the elastic uri-sleeve and g-strap off. Its been annoying me the whole day. Better than taking your bra off!
I manage to do food shopping but after half an hour of walking around the super-market my site is nipping and my tummy is getting more sore.
I go through my evening catheter routine. Wash Hands, empty bag, wash hands, clean SPC site, wash hands connect night bag.
I manage to get to sleep without taking any sleeping tablets. I don’t need any extra diazepam for spasms!

Bad:

I’m exhausted by the time I get home. I need to go food shopping and do a dozen other things but I’m too sore and tired. Its not just my tummy that is sore now but everything hurts.
I take the strong pain killers I have been desperate to take all day. Coupled with the exhaustion I crash out for a couple of hours.
I miss a call from my boyfriend. When I do call him back I feel all I have done is moan about how rubbish I am feeling. He is great and listens anyway but it makes me feel bad.
My bag is full of sediment and clots. I think I need antibiotics again. I wonder whether I should call NHS24. If I leave it, I could wake up tomorrow with a full blown kidney infection, so I call. I worry that the call handler will judge me for making my 6th call to the service in 3 weeks.
I’m given an appointment for out of hours GP. The receptionist clearly recognises me. I’m embarrassed. My temperature is borderline at 37.8. Urine is positive for infection. GP gives me antibiotics.
I leave feeling disappointed as I had been doing so well, I had managed 2/3 weeks without antibiotics. I know the week or two ahead will all be bad days.
Usual night routine but SPC site is extra gungy.
I can’t get to sleep because spasms are keeping me awake. I am worrying about the next day and having a lack of sleep.
I eventually fall asleep only to wake up to find my bag has detached and my mattress and covers are soaking.

Terrible:

I’m now being sick on average every half an hour. I know I am dehydrated.
I know I need to see a doctor. I worry that I might have sepsis again. I phone NHS24.
I’m too unwell to drive to my appointment, so I get a taxi.
I waddle through to the appointment in my PJs with my hot water bottle, trying not to cry.
I have my phone charger and an emergency hospital admission pack in my bag because I know I might get admitted.
My temp is not too bad at 38.2 so they change my antibiotics and give me an anti-sickness injection and send me home with instructions to come back if I don’t stop being sick.

Thanks for reading. I hope this gives a little insight into what different days can be like. It can be hard to describe how I am feeling. Its often easier to say 'I'm fine' or sugar coat how I'm feeling by saying 'I'm just a bit under the weather' when I'm having a hard day. I know I am not the only person with a chronic illness to do this. If you know someone with a health condition, please keep in mind that they might go from seeming OK to having a terrible day quite quickly. It may be that they have been feeling worse than they have been letting on. Please also keep in mind that people with health conditions still have to put up with the normal things that can make a day bad, such as sleeping in or late buses and trains but that these inconveniences might have an impact on their health or the routines needed to maintain their health. All in all, please just try and be understanding, not just of your friends, family and colleagues with health conditions but to everyone. You can never know what someone has struggled with just to get themselves out the door.