So I wanted to update on the trial. I've been doing it for about 6 or 7 weeks now. There's a lot of positives and a couple of negatives, I have found. A positive is that it only takes about 5 minutes a day to complete the app requirements- weight, sats, lung function, how well you feel, how your cough is, sputum sample and register your activity. So even with a hectic schedule, patients should be able to fit it into their days. Another positive is that with the activity monitor- the FitBit/pedometer type thing, I have found myself a lot more aware of exercising and pushing myself more. On the face of the "watch" is a series of dots. As you do more exercise throughout the day the dots increase round the clock face. If you manage to get all 12 dots completed it does a little celebration pattern haha. I think each dot represents 1000 steps. I'm not entirely sure how accurate it is though. I wear mine on my wrist and if I'm grooming that day (imagine brushing a dog with the arm it's on), it says I've done loads of exercise. I can't complain, it makes me feel good haha. I'm sure if I wore it on my ankle though, on those grooming days it may say I've done very little exercise.
The "watch" face- ignore my face it was bedtime!
One of the biggest negatives I have found is that if all my readings that the app requires are low, it makes me feel crap and down in my mood the whole day. I originally did everything in the morning; my weight, O2 levels, lung function were all very low for me and I was worrying that I was ill and I kept worrying all day about it. It doesn't put you in the best of moods when your lung function is in the 30's % when you'd expect it to be in the high 50's straight after IVs! So I decided to try doing everything in the evenings just before bed. Again, sometimes readings are low but I put it down to tiredness at the end of the day. However, mainly they aren't too bad and I don't feel quite so worried. Also, I must remember that the equipment I've been given is unlikely to be as accurate as what the hospital has. I will be mentioning this with the research team though, as if a patient has anxiety or possibly a mental health illness, this could bring them down a lot if every day they are seeing their readings a lot lower than they had hoped or anticipated. This type of testing daily may not work for them.
One last thing that I will mention to the research team will be the weighing. Daily weighing, I have found, seems to fluctuate so much. I know at different times of the day we weigh different amounts and things, so possibly weighing once a week at the same time on the same day would be more beneficial. Then you could get a clearer idea of what your weight is doing.
So about 4 and a half months to go :)
I've made the most of this last well patch: seeing loads of friends, having family sleepovers, celebrating my brothers birthday, had my annual night out haha (only have the energy for 1 a year these days lol!), grooming doggies... Now just a little recovery sesh before summer begins! Lots to look forward to :D My first ladies day, my 3rd wedding anniversary, my parent's 25th wedding anniversary, a family holiday and lots of birthdays!
Until next time