I feel like I'm on drugs. Well I am.
I had my appointment on Tuesday. Alex was with me and we saw all the usual people. My weight was 50.6KG, quite similar to the last time I was there. My lung function was FEV1 41%, FVC 79%, down from last time. I was expecting to go onto oral antibiotics and maybe have a little boost from that, then in another month or so's time go onto IVs. However, when I saw Dr Orchard he was determined to get me better asap. Back in Jan '16, my lung function was great and increasing well. Then I had a dip and the IVs I was on back then didn't really seem to do anything. It showed in my end of IVs lung function as it hadn't gone up at all. Dr Orchard wasn't in on that day though, so I couldn't carry on with IVs and just came off them to see how I'd do.
This time though, he suggested I take 2 new IVs, oral antibiotics and steroids. I agreed that I felt like I needed the steroids, I'd felt so inflamed the last few days. I've never been on this much strong meds. It's probably not even that much compared to what people who are really ill are on, but for me it's a lot lol!
Today is my second full day of taking all these meds. I am very much feeling like I am on drugs! My tongue and lips are tingly and a bit numb and I just feel very spaced out and as if I'm not really here haha. It's strange and hard to describe. I called the hosp this morning as I just wanted to check that I'm not having a bad reaction to the drugs. They reassured me that this was quite normal for the drugs that I'm on. They did say that if the feelings are too much for me that they can always lower my dose, but I want to try and stick it out as I really want to get the most out of this course of IVs, orals and steroids and give myself a huge boost that hopefully will last all summer long! :D
Perhaps in a couple of days my body will start to get used to it and I won't notice these side effects so much. I've cut down my dogs to one a day, trying not to do more than 4 days, but it's so hard to say no lol. Also, for the moment I don't want to do too much driving, at least until I'm feeling more myself again.
Until next time! xo
Thursday, 28 April 2016
Saturday, 23 April 2016
Late night post
I've been meaning to blog for a while, but life's been so busy- a good thing! Usually means I'm doing well. When I get...MAKE time to sit in bed with my laptop for a good few hours it's usually a bad sign health wise. So yeah, I'm needing time to rest at the moment; chest is bad, appetite and energy have gone, sleeping loads, arthritis is flaring up and getting a lot of pressure headaches from the coughing. Not too bad though as I've only been like this for 3 days and I have a hosp appointment on Tuesday so I should be able to nip it in the bud with some meds.
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.
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
xoxo
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
xoxo
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