Why do I watch programmes I know are going to upset me, said my long suffering husband. Well the answer to that is – I didn’t know when I put it on what it contained and then got so upset I couldn’t turn it off. I was doing my dressings and the remote control had fallen under the chair, I couldn’t move until the dressings had ‘set’. The programme was Hospital, a BBC2 documentary. Some awful stories the worst being a beautiful little girl with cancer, heart wrenching and it makes me question this thing called life. The other stories were about people with equally horrible cancers and surgeons who are queuing up to leave the NHS owing to the daily pressures they face. Very depressing especially for someone whose life is now surrounded by doctors and hospitals. My husband came in to find me in floods of tears and thought something awful had happened. He never watches programmes like that as he says life is difficult enough and he is probably right. I won’t be watching it again.
I went to see a new surgeon a few weeks ago, a medical doctor as opposed to surgical. On examining all the evidence he felt my fistula is a surgical fistula and as such there is no medical treatment. He said they are usually sorted out surgically unless you are like me as in very complex in which case it’s probably best to avoid surgeons for the foreseeable. He did recommend antibiotic therapy which I wasn’t happy about but I need to get some normality back into my life. It is very depressing waking up in pain every day when life is busy and I have to carry on or I let people down. He hoped the antibiotics will get rid of the low level infection that I have and make me feel better. I’m two weeks in and can’t say it’s been life changing but my husband thinks I am better. Il give it a go and see how get on. I am however acutely aware that antibiotics are the demon drug and this is not a long term solution. I went to see my own consultant a week or so after seeing the medical guy. He told me to try the antibiotics but I could tell he wasn’t too enamoured. I also read him parts of a letter I’d written to him but hadn’t sent. I expressed how I felt broken and sad by what had happened. How I had been so well prior to the op compared to now and the thought of no cure or no treatment is very depressing. I told him I felt it was slowly poisoning me and the fact my eyes are now affected surely indicates I’m not far off the mark. He looked crestfallen and I wished I hadn’t opened up to him. (I always feel the next person he will see will have cancer or rabid Chrons and then feel ashamed I cope so badly). So he gathered his thoughts and said it wasn’t a good outcome but it could be so much worse. I was managing my nutrition which was the most important and whilst my bloods aren’t normal they are ok despite the fact I’m now anaemic. But I admit I don’t eat much red meat or green leafy veg and I agreed to taking the iron tablets prescribed. My problem is I compare myself to how I used to be and how I am now and there is no comparison. I miss the old me, the old life when things were so easy even though I didn’t realise it………
Easter became like a mini Christmas. We had my twin nephews for a few days and the weather was looking grim. I managed to arrange a caravan last minute in a nearby caravan park. Now ordinarily I’d rather eat my feet than go on such a holiday but I thought the boys would enjoy as there was plenty to do. So off we went, it took us under 10 minutes to get there and the caravan was nice. The boys were really excited and as I unpacked everything they went to the pool with Stephen and my son in law to be. It seemed a lot of unpacking for just a few days but so be it. The day passed quickly and everyone was happy. That was until we realised there was no internet in the caravan! How dependant we are on the Internet! Well I am and so are the twins. However, it was good (apparently) to be internet free for a limited time and we played dominoes and some other silly game. I slept badly and at 2pm the next day whilst everyone was meeting the Wannabe Red Coats in the clubhouse, I snuck home as it was literally 2 miles away. I needed to get some clothes for the evening and used the time to relish the peace and solitude my home gives me. I eventually made my way back to the caravan and we all went out to the club house for the evening entertainment. The restaurant is situated in a lovely spot and I was able to watch the tide rolling in whilst the children played and the men watched the sport in the big screen. The night became a bit rough with a scuffle breaking out so it was back to the caravan for yet more dominoes. My sister was also staying on the Saturday so we had a bottle of wine and we all enjoyed. It also helped me decide I did not want to buy a caravan after all. Too confined, too noisy and too expensive. We could have numerous luxury cruises for the cost of the caravan and if I am forced to leave my home, I like a bit of luxury. I really don’t understand people who go away and stay somewhere less comfortable than home. But I think if you have been chronically ill all your life, your goal posts are lower than others, I have never felt the need to get away from it all, if I’m well, I’m happiest at home especially if the sun is shining. I suppose that is one thing I would go away for, warmth as this winter seems never-ending.
So life with the demon within goes on. Our big pond has been filled in and I’m planning the new area which I enjoy doing. The winter is hopefully behind us and I won £75 on the premium bonds! So all is ok but life with a fistula is like a big game of snakes and ladders and one day I climb the ladder but next day the snake gets me, that’s just how it is .