Well its a New Year, an obvious time to take stock of things and plan for the future. 2014 was a very mixed bag of a year. ON the positive side I had some fabulous times with friends and family and totally the best day of my life so far, when I married my beloved Mr EB in June. I couldn't have asked for a better day, the weather was perfect, food was amazing and we are so lucky to have so many lovely people in our lives who came to share it all with us. Sadly, the year also contained way, way too much crap! I spent two weeks in Papworth in March/April plus a further three weeks at home on ivs being treated for Micobacterium Chelonae, I can honestly say that the treatment was utterly horrible-I have never been so sick in my life! So that was hilarious fun, then in October my health was the worse its ever been, i ended up back in Papworth and oxygen dependent for the first time in my life. I don't think I really appreciated just how ill I was at the time, probably because going into denial was the only way I could cope with it. I had another round of the micobacterium treatment (yay more ridiculous nausea!) and spent three weeks in Papworth and another two weeks on ivs at home. It really was a horrible experience, I had one evening when I simply could not catch my breath, my O2 saturation plummeted and the nurses bunged me straight on oxygen. In retrospect I was really scared, and it still scares me just how bad I got and how quickly, but at the time I was surprisingly calm, as I wasn't totally aware of what was going on. The next ten days or so were spent pretty much on oxygen 24/7 which whilst it definitely made me feel better, meant I was also stuck in bed for pretty much the whole time-very dull! I became very weak and lost a spectacular amount of weight during October and the only reason I didn't end up have to NG feed was that I had a total freak out about it and managed to persuade the dietitians I would start drinking the dreadful milkshake supplements (which I have and thank God the weight is slowly getting back to an acceptable level).
This health crash has forced me into having to reassess my life, yet again-bloody CF! Trying to stick to my motto of 'adopt, adapt and improve', I'm attempting to view this as a positive thing, but mostly I'm just a bit confused as to what I am going to do. Working to a deadline is just way too stressful when you can't tell if you may suddenly end up stuck in hospital unable to do anything for three weeks...So work is going to have change a lot, I'm just not quite sure how yet! More hats and embroidery seem one way to go, but I don't know how I'm going to sell anything-suggestions gratefully received...
We are also considering moving to a new house that will make my life a bit easier on the domestic front. Stairs are definitely no longer my friend. It's not that I can't do them, I can, but when I'm not feeling great (which is increasingly often), when I get to the top I either feel terribly faint or have a massive coughing fit-not ideal! Our house only has an upstairs bathroom which is a bit problematic; so we are on the look out for a bungalow- I feel so old! I love George Street and really don't want to have to go through the stress of moving, but equally I am increasingly conscious that I cant keep up with the domestic side of life, not to mention the garden-I really do feel utterly useless at times! So, we are considering moving now before I get much worse and it becomes harder. So it looks like there will be some big changes ahead in 2015.
Trying to stay afloat on a sea of medication. Living as best I can around my Cystic Fibrosis.
Monday, January 05, 2015
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