Firstly apologies to anyone who googles ‘fistula nightmare’ and ends up with this blog. It’s more like a journal of my life with a bit about said fistula and probably of no help at all to any fellow sufferers. I’m sorry – I will happily answer any medical or surgical questions you may have about life with a fistula so please feel free to message me.
Now then, what’s happened this week. Well on Monday we travelled to Cardiff to see my Consultant. We decided to ‘ make a day of it ‘ ( groans) and go to Ikea. Now I don’t like Ikea but hubby does so off we go – we were looking for some laundry equipment, yes very very boring. Within 2 minutes we had argued because I dare to look at a chair 😲😲 We weren’t there to buy chairs and why therefore was I looking at one. What a crime! He is hard hard work at times. Well all the time actually, since he retired….. So on the basis I didn’t even want to be there, I decided to resort to toddler mode, go missing and leave him to it…..messages follow –
Him – ‘ where are you’
Me – ‘anywhere you aren’t ‘
Him – ‘ don’t be so childish ‘
Me – ‘go away’
Him – ‘ please tell me where you are, I’m sorry ‘
Now at this point I feel a bit guilty as it wasn’t really his fault and I did really snap at him and told him to ‘shut the fxxx up’. Not my finest moment. So I meet him and we make up, we have coffee and cake and proceed to do out shopping. We are trying to be more minimalistic and not buying stuff just for the sake of it, they didn’t have any of the laundry bits we wanted so we left with a sponge. All that for a sponge but I had at least walked 2000 steps 👍👍
See Consultsnt. He is so nice I think I’m a little bit in love with him even though he has now nearly killed me twice, not on purpose of course. We chat and he tells me how well I look ( i.e. Chubby ). I know that whilst I’m not losing weight, no one is really that bothered. The fact I’m exhausted and in pain 24/7 is just something I have to live with. He said again there is no medical treatment but didn’t rule out antibiotics when needed, which in doctor speak means my white blood cells have to be elevated. The last time I ended up in hospital, the fistula were bleeding, I felt rotten, had a slight temperature but my white blood count was ok so no antibiotics were required. These days doctors do not dish them out like smarties which is good of course but in reality means there is very little in the way of drugs they can give me. Surgery is still an option but not yet, maybe next year, maybe the year after, maybe never ……… he feels I’m “doing well” but there are different perceptions of “wellness”. From his point of view, I’m eating, drinking, well nourished and clinically ok. From my perspective I’m broken, tired and I’ve lost my Happy. But I know it could be so much worse and I also know if they operated now I would probably end up worse off or possibly even dead. It’s back to acceptance of the “new normal “ but I still miss the old me so much. We leave – he hugs me – il see him in a month. I’ve been promoted now to hug from hand shake so that’s ominous. Feel a bit embarrassed . He compliments hubby on his weight loss and me on my weight gain, thanks for that. Not.
We call for petrol and I see a furniture shop. I suggest we pop in which turns out to be a bad move. We are greeted by a smiley boy called Jack who looks about 15. Don’t worry, says Jack, ‘I’m not going to follow you around (🤥) but what are you after’. I explain we want a small 2 seater settee for our second sitting room, which is actually currently a bedroom because we’ve converted our garage …….I silently tell myself to shut up, no one is interested and all Jack is thinking of is the possibility of some commission £££. Ok, he says and proceeds to take us on a guided tour. He shows us several settees and we sit and make polite comments whilst I am slowly losing the will to live. I want to go home which is remember a good hours journey away. Hubby on the other hand is in Settee Heaven as ‘ the never to be repeated offer ‘ settee has a charging port, a space for your wine glass and a storage console for all those tv essentials ☹️. Plus it’s (allegedly) half price. By now I’m thinking how do we get out of here without hurting Jack’s feelings. He’d already said he’d only been there two weeks and I feel a bit sorry for him. He is quite nice and has a caravan in Amroth so he can’t be all bad. I tell Jack I don’t really like the colour and he suggests 47 others, I say I’m worried about the stain resistance and lo and behold he has a warranty we can take out which will cover us against everything including grandchildren, cats and even my husband …. he’s already starting to annoy by saying ‘ so what are your names guys’ – Guys?? Firstly last time I checked I am female and secondly we are old enough to be his parents, not his best friend. I say I’m still not sure, been a long day, we aren’t local blah blah and so he calls his manager over to hike up the pressure and see if she ‘can do anything with the price’………..Hubby is of no use and says ‘it’s up to you darling’ about 50 times . I relent. I’m tired, hungry, far away from home and just want to get out of there. Plus the sofa isn’t that bad is it ….. Driving home in silence I think ‘ what have I done ‘ – I know hubby is thinking the same. Next morning I look at it online, hate it even more and send a picture to my daughter who replies –
Her – Have you bought THAT
Me – yes, and I’m regretting it
Her – OMG it’s like an Old Man Settee, horrible, what were you thinking, Cancel it !
So I spend two days on and off, on the phone trying to cancel the blasted settee. I need to speak to the manager who is off blah blah but I eventually succeed after playing the ‘ I am not in a good place at the moment’ card. The moral of the story is not to make decisions when tired, hungry, emotional and far far from home. Or in my case, at least since my botched op, just don’t make decisions – ever.
At least the builder has nearly finished, now it’s the nice bits – the painting, carpets etc. More decisions and no doubt more mistakes………..