30daysofblogging Day 6; No S**t!
Sunday, March 08, 2020So, unfortunately I had to take a couple of days out already. Usually I’d really beat myself up about this but
1) I have a good reason
2) I don’t want to ‘force’ posts for the sake of writing everyday.
3) you will still get 30 days and they will be regular, if it’s not every day, that’s ok.
4) I’m not even sure anyone is reading! Please say hello if you are.
Anyway. I’ve hinted that I’ve not been feeling the best these last few days and I thought I would explain why, now I’m slightly less scared and the weekend is over so I can actually get more help.
With Cystic Fibrosis bowel blockages are common. I am lucky enough to never have experienced one until now it seems. For over a week my stomach has been constantly so bloated that I look 7 months pregnant, I’ve been really uncomfortable and not able to go to the loo much. My system is very sluggish and I do take daily laxatives to keep my system running smoothly. Btw apologies but when you have CF and indeed stomach cancer, you talk about poo so much that it’s normal, won’t get more graphic I promise.
I’ve gone from taking one daily gradually up to 7 with no real improvement. So not only do I feel really not very well but I’m also slightly concerned. Stronger laxatives are very common for CF but not if you’ve never experienced this level of constipation before you don’t have these on standby. So after drinking so much water, hot tea, hot lemon water, mint tea, and constant rounds of heat pads, massage, exercise, and TENS machine with no improvement at all you start to worry. Add to that the fact I’ve had stomach cancer, and surgery to remove a portion of my stomach and intestine. That I had a insusseption which I know very little about but know that can result in a preforated bowel and I haven’t slept, have searing back pain from such a distended belly and breathing is tricky. Panic rises.
Also the weekend so no one to really advice, and to top it off, the country is in a state of emergency with Coronavirus, that is a huge risk to those are immune suppressed, diabetic, cancer patients (yes, yes and yes) you don’t want to visit A&E or your GP. They don’t want to see you either as you are extremely specialised and they don’t want to risk killing you somehow.
This is how something really quite simple, rapidly gets out of hand. Ironically, neither of my main hospitals are specialists in bowel issues.
What’s particularly upsetting is that we had planned to leave today on holiday. Just for a few days but the dog was going to his sitter, parents had booked a hotel and I was staying with my best friend who I don’t get to see often. We had plans and ideas and visits (to the Emma Bridgewater factory, I have become addicted and put aside money to treat myself) she had got shopping in. And we couldn’t go. I’m sitting at home as swollen as ever. Gutted to have let people down and knowing with the virus in full swing I’m going to be staying at home more and more.
Mentally I’m feeling quite down. I’m trying to keep a bit of a distance from sliding into the pit of feelings. It’s working but I’ve also had some serious break down ugly crying too. Ive felt extremely isolated alone and uncared about. I’ve had a viral thing for weeks now that goes but then seems to start coming back. A blocked ear, stuffy nose, scratchy achy throat the flare up and down. I’m exhausted from everything, look as white as a sheet and my usually very clear skin has tonnes of under the skin spots which I can only guess may be from the sheer amount of water I’ve drink to flush my system?! Any ideas?
My incredible gastroenterologist replied to my panicked email on a Saturday night (he is an angel) and has put my mind at rest that I’m doing the right thing and need to get my hands on some stronger drugs to try and if not get myself checked out, so getting stronger laxatives is tomorrow’s task.
I hope you all didn’t find this post too uncomfortable to read but this is my reality at the moment so I wanted to explain it.
Xx
7 comments
Poor you, I do hope someone offers you some help tomorrow. Think we all feel stuck indoors at the moment, I’m immune suppressed so reluctant to mix too much. It is depressing I agree...we just need to be here for each other. Fingers crossed for you for tomorrow. Let us know how you get on xxx
ReplyDeleteThank you. It’s so hard to be stuck indoors but the best course of action right now. Xx
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DeletePopping in to say hi (longtime blog reader of yours since your pre-transplant days, but I’ve been remiss in commenting). I also have a rare disease that causes a sluggish digestive system (in my case a connective tissue disorder) and understand the frustration, pain, and anxiety that a bowel blockage causes. I’m so sorry you’re going through this right now and I hope it resolves itself soon. You’re doing all the right things to help things move along and hopefully the stronger laxative works it’s magic soon!
ReplyDeleteThank you, I’m sorry you have to go through this too. It’s definitely getting there but that said stomach has blown up again tonight so not happy about that. Thanks for commenting xx
DeleteJust wanted to comment to say hi, and yes, I'm still here and still reading! That doesn't sound fun at all. I really hope you manage to stay safe, what with the coronavirus going round.
ReplyDeleteYay! *waves to you* Thank you xx
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