I thought I would give a bit of a health update as I feel like I am just constantly complaining on social media about how grim I feel.
I have two large hernias (I know, I know, I’m as sick of hearing that word as you are!), one is a parastomal hernia, this means it is sat right behind my stoma and one is an incisional hernia in one of my many surgery sites. The parastomal one is the most painful, it is quite large and gets bigger throughout the day. It is a constant feeling of pressure behind it and it feels like all my insides are going to burst out at any minute! The second hernia is not painful all the time, but a few times a day it is an awful stabbing pain, it takes my breath away and so between the two I am really struggling with pain. I’m on codeine and nefapam for the pain which help but also make me super groggy.
The other issue is I have a large ovarian cyst, at the last CT it had grown and was around 7cm big, I am having weird periods (long gaps and random bleeds) and a feeling like constant bad period pain. I also apparently have a large, fluid filled fallopian tube (because why not throw another thing at me!!) and so I am waiting for further scans and tests for this. I think it is due to the huge amount of adhesions in my body, basically everything is stuck together and altogether unhappy in there.
So the plan is for the gynae surgeon to take out the cyst at the same time as they fix my hernias if possible. Mr Brown wants to get another surgeon involved, he specialises in complex abdominal cases and I have an appointment to see him at the beginning of February.
And so I am just still in limbo waiting for a surgery plan and date. On one hand, it just cant come soon enough, I am getting to the point where the pain is getting too much, my nerves are shred and every ounce of patience has been used up. I am short tempered, pissed off and struggling to not lose my shit.
Talking of losing my shit, the parastomal hernia is making my stomach a very weird shape and so bags are not wanting to stay put, so I am leaking really often which is just making life all the crappier. This is my parastomal hernia, the pic was taken after a day of rest and so is actually not as big as it usually is.
Most days I look about 6 months pregnant and so that’s not much fun at all…
I dropped my work days down to three days a week a couple of months ago as I was finding it so hard to keep up with everything whilst feeling so ill, exhausted and in pain every day. This has helped a lot, but to be honest, even part time work is a real struggle right now.
Also because I had two surgeries last year and subsequent time off to recover, I am out of paid sick days so I am panicking about how much time I will need off after this next op. If it goes to plan and they do the two surgeries in one go, it will be a big old op and I will need a lot of time off afterwards to allow myself to heal. But I also won’t be paid for this time. Of course, my health has to come first and I will take as much time as I need and the doctors recommend but adding the financial worry to the mix isn’t helping.
And so I think that is everything up to date health wise. Basically my body is broken and I’m waiting to see if docs can make life a bit less shit!
I know I have been a right whinging bag on facebook and twitter, but honestly I don’t even apologise for it! Life with chronic illness isn’t all positive quotes over images of clouds, it’s not all high fives for celebrating our awesomeness and shiny, happy selfies with puppy noses. Sometimes it is dark and miserable, lonely and scary and the one thing I promised myself over 5 years ago when I started this blog was that I would be honest about the highs and the lows.
Thank you so much for all the kind, lovely messages I have received over the past few weeks, I try my best to reply to everyone but don’t always have the energy, but I do read them all and each one means the world, so thank you.