It’s been a busy week and I think I can safely say –
Fistula 0 Me 1
We decided to go to North Wales for a few days. I wasn’t looking forward as I’m such a home bird I don’t actually like going away. On saying that this fistula journey has taken so much from me I realise I have to compromise a little, or my marriage will be the next casualty. We have been married 38 years and like most we’ve certainly had our ups and downs. Chrons disease the early years caused many problems. My husband left his beloved job in the Royal Navy as at one point I was given three months to live. That was 33 years ago and I’m still here! He loves to travel and this fistula has seriously compromised our life. So I agreed to go on our little holiday and it was a success! . There were some ground rules before I went – I would not eat a full meal every night and I probably wouldn’t go in the spa. My husband loves going for food but I don’t, thanks to fistula. I tend to graze now and try to eat healthily but no big meals for me. Most of the time that’s fine but causes occasional problems. We travelled up on the most beautiful day and arrived at our lodge, which was lovely. We made a further journey to Snowdon and had booked the 430 train. It was boiling and I was already thinking had I made a mistake. But we got on the train and commenced our ascent in stifling heat. We got to the top and a cool breeze saved the day. The views were amazing and we took a few photos just to prove we had actually done something. The journey down was far more comfortable and I was glad to say I’d done it.
The fistula behaved well as did my stoma. We returned to the hotel and hubby now wanted to go swimming but I said no way and fell asleep on the bed. We had room service which provided some sandwiches and that was fine for me but hubby was feeling sorry for himself as if he doesn’t get a hot meal every day I’m sure he thinks he will die 🥊🥊
The next day was grey and cooler so we decided ( or rather he decided) we’d go down a slate mine. This sounded very boring but I reluctantly agreed and off we went. As it happened it was quite spectacular if not very very cold. When we eventually came out of the cavern I had a mug of hot chocolate and a biscuit. Normal life, normal things. I felt ok, I do take painkillers regularly but nothing too hefty and they do help. We went back to the hotel and went for a meal, I had a starter as my main and no one batted an eyelid apart from hubby who said ‘ you don’t eat enough to keep a bird alive ‘. Totally ridiculous comment as I reminded him I am actually two stone overweight. I am so not your typical enterocutaneous fistula (EF] patient. I can eat and drink ( thank God) and I’m overweight. No one gets it, even my consultant who is a Professor and lead surgeon in the colorectal unit in Cardiff ( Wales ‘ largest hospital ) does NOT GET IT. Before you think ‘second opinion ‘, I’ve had one from another Professor in London. The problem is of course as an EF patient I am doing really well. So why risk an operation that could make things much worse? That’s what they say anyway and I totally understand that, but I so miss my old life and struggle to accept what happened . I hate the new miserable, anxious me, who can’t even lift a bucket in the garden. The Me who has become so scared of life, I can’t live. I used to do so much more than I do now. I know the mistake I’m making in dealing with this; I’m focusing on all the negatives instead of the positives – I’m Alive and living a life – it really could be so different today. My husband hates my negativity and it causes so many issues but he is healthy and well, his problems by his own admission are self inflicted as in poor lifestyle choices – drinks too much, loves his food, normal bloke I guess. But a ruined knee means he can’t do the exercise he once did and he won’t have an op as there is no one to look after me, no one to drive me to hospital etc etc . He is due to have a knee replacement in October a few weeks after our second grandchild will be born so I’m just not sure how that will pan out. It the point I’m making is it’s easy to say to be positive when you haven’t had the experiences us with chronic illness have, walk a mile in my .shoes and I doubt he’d be positive. He can’t cope if we’ve run out of beetroot – another story for another day 🤣.
But I am here, I am living my life and I am surrounded by the love of family and friends and so I have to gain some positivity and enjoy what I can, when I can.
I have been better the last 6 weeks and there is one reason for that – antibiotics. That will be the subject of my next blog I think.
EDIT – 14 hours after writing this I’m in serious pain. I think I had a blockage but it seems to be resolving itself . This is how it is with chronic illness, a carousel, ups and downs, downs and ups. We have a big day planned today, will I make it?