I’m sorry if I haven’t replied to messages recently..I feel bad about it, I promise! The past week or two haven’t been fun. I have been in a flare up. My UC has been playing havoc with my body. I am so stress sensitive, as well as lack of sleep and bad food and drink intake. I think the tip of the iceberg was when the stress after my talk disappeared. That’s really when all hell broke loose. No, I am not blaming doing the talk, and I am not regretting it either. I loved doing that talk, and I felt like I was doing something good. The thing I do regret is me and my last minute planning and putting together of a slide show. I think that’s what did it! At least that is done now for other future talks!
I have felt so crap. It has really brought me down. This upsets me even more as I should be on a high after that talk, well I should have been those first few days after it anyway…but instead I’ve felt down. I’ve been exhausted. I’ve been in pain. I’ve been bleeding. I haven’t wanted to see people, or be around people. I have been crying. I have felt down.
It’s crazy how a flare up can affect me and my day to day life. Looking at me, and not knowing, most people don’t even realise anything is wrong. Sometimes it’s a blessing having an invisible illness, other times it can be a curse!
It was lovely weather last week, and we took a trip to Bridlington, the seaside, for some nice refreshing sea air, and a little walk along the front for some chill out time. I struggled keeping my mood up, and I struggled walking far without sitting down every so often for a rest. I tried to keep my mood up but I just felt so heavy in every way, shape and form. In the car on the way back I was holding the tears in, and I think I managed pretty well. I had no appetite and felt sick but I knew I had to eat so I managed a little something. We then went to have a little rest and I just burst out in tears. I couldn’t stop. I felt overwhelmed… when I eventually stopped and went to get up, my hip got stuck (I don’t think its actually stuck, maybe I got something caught, but it feels like its stuck when it does it). The pain was shooting, I couldn’t move without pain, and again I just burst into floods of tears. All I wanted to do was curl up into a ball, in a dark corner and hide from the world for a while. When I went to the toilet that night, there was blood. My heart always sinks when I see blood. That was when I realised I was in a mega flare up though. It explained my pains, my lack of energy and appetite, my emotions sky high and the darkness and weight over me. I found some of the medicine that my doctor gave me for flare ups and decided to start that for a while. Now I do apologise, this is maybe a bit too much information, however, that’s what my blog is all about, sharing all. Now this medicine is a foam (Budenofalk) which you spray up into your colon, it isn’t great fun, but out of all the fluids and sprays its the easiest one so I don’t mind it so much (if I have to pick the best of the evils). Just getting the spout into the rectum was so painful I started crying. I eventually dared press the button and let the foam out, and within a few seconds I felt something down my leg and saw a white and red mess running down my leg. I couldn’t even keep it in. I was terrified. I cleaned myself up, went to my bed and cried. I cried in fear. Fear of more surgery, of not getting well, of having to recover. I felt sorry for myself. I felt so sad, scared and angry. Angry at myself for not looking after myself more, and angry at my body, for doing this to me. At times like that, I can understand why suicide would cross someones mind. No, there is no need to worry about me, I love life too much and would never even dare to do anything like that, however, when I’m down in a flare up, feeling all deflated, defeated, scared and in pain, I can understand why some people would do it when given a diagnosis, or when very ill. I do not want anyone to worry about me, like I said, I would never do it, I just want to emphasise how bad it can be for me, and how down and dark things can feel when bad. I cried myself to sleep that night.
Since then I have been able to take the medicine luckily, and I have really tried to be kind to myself. Slowly but surely I think I am on the upward slope, it’s not an easy one to get up, but I have been able to take my medicines and keep them in, and I haven’t been feeling the toilet urge as much, and I haven’t seen any blood. Saying that, I am still exhausted beyond measure, my body is still constantly aching and painful, my head is still in the biggest foggy dark cloud going and my memory is dreadful…but I’m trying to pick myself up…I really am!
As time goes I am finding it easier, and a bit lighter, and I’m managing to find my smile a bit more genuine too! So don’t worry about me, I just wanted to share some truths from behind closed doors.
Oh, I’ve gotta laugh! Last night I went to take my medicine, I inserted it, stood there ready, pressed the top down, and “BANG”! The top had flown off the bottle and there was foam everywhere in the bathroom, apart from in my rectum! It was all over the floor, the shelves and even up the wall! Hahah! Well it was a choice of laughing or crying, and I just burst out laughing! That was insane! It was also my last box, but never mind, I have other things! It really did go everywhere though! I had to quickly make sure to wipe it all away, so none of the cats managed to get it in them by accident. Haha, so yes, sometimes things just go all over, don’t they! Hahah!
Now I’m going to turn my laptop off and go sit and listen to the rain and thunder 🙂