Thursday, 25 February 2016

On the mend

A beautifully sunny morning will always improve your day.

Quick update from the last blog: the orals didn't do much for me this time so I asked for an appointment to see the doc and see if I can start some IVs. For some reason the clinic has been overly  busy these past couple of months and I wasn't able to get a sooner app than what I already had booked in. Soooo, 5 weeks of being unwell has obviously had quite a knock on my health. My lung function has dropped by 15% to 43%, I have lost 2KG putting me at 50KG, sats have dropped to 92% and I just generally haven't been in a good state.

The good news is, I have finally started home IVs :D I'm on day 4 and I usually get worse before I get better, but I will soon be back to my usual self- busy, eating loads, managing grooming, housework, socialising.... Cannot wait!!!

The last few days I've been feeling so low. It's not like me. I can only put it down to that after a much longer than usual wait for some meds, my body is just so exhausted and I'm getting ratty because of that. My plan today is to just stay in bed and rest; hopefully that'll do me some good. Plus the sun is out, and that always makes me happy :) can't wait for summer!

I probably should reschedule all my grooming, but I just hate doing that. I hate letting people down, and I enjoy seeing the dogs. They're all good dogs that I have booked in though, so I reckon I'll be alright. Plus, I can always ask Alex or my sister to bath them- that's the most exhausting part.

When I went to hosp, I saw a poster about a new trial-type-thing. It's a bit different from the usual medicine trials. It's a smartphone based trial. The aim is to try and keep patients out of hosp for longer- always a good thing! So the patient will be given a smartphone, set of scales, mini lung function kit, mini sats and heart monitor kit, FitBit type thing, mini freezer and a cool bag. Everyday for 6 months you need to measure your weight, lung function, heart rate, 02 levels, activity levels and give a sputum sample and send it via bluetooth to the smartphone (take the samples to clinic when you go). This will upload onto the trial database place. The researchers are looking for patterns in patient's results to see if they can detect when they are going have an infection, before it takes hold. Therefore, starting treatment earlier and not spending so much time in hosp. So I've said I'm interested and hopefully can start this trial soon.

Will let you know how it goes!


Monday, 1 February 2016

Mind set.

Eurghhh, sick of being sick! I get so bored and there's always a million and one things I need/want to be doing but just can't. I started to get usual symptoms: loss of appetite, coughing more, sleeping more, exhaustion... So thought I'd rest up in bed for a few days and see if that healed me- it didn't. So last Friday I started some orals. I'm on day 3, so not much improvement yet.

When my health is down, my mood usually is too. I'm never really bothered about having CF most of the time; not really one of those "why me?!" type of people. I'd rather I had it than my brother or sister. During this weekend though, I felt a rare feeling of jealousy toward healthier people!

I went to my first grooming competition on Sunday. I was due to take part but had to pull out due to my health. I'm so grateful to my friend Justine who drove me all the way there and back to spectate instead. It was an amazing experience, we loved every second of it! But that evening I just felt frustrated. There were groomers there with years and years and years of experience, way more than me, and they have built an empire- one woman has 5 salons, one of my friends has 10 poodles, my old tutor will do up to 35 dogs a day at her salon! And no matter how hard I try, how much experience or qualifications I get, how much money I put into it, my health is never gong to be stable enough that I can do all of those things. I'll always have to "take it steady" or "not overdo myself" blah blah blah. Boring!

I'm proud of how much I do groom and the business I have created, but I'm the kind of person who always wants to better myself and keep going up. I don't want to be "steady" and not push myself. For instance, if you take a job at a shop as a shelf stacker, or in an office as an errand runner, you will probably want to work yourself up as you gain experience and stuff. I just feel, if anything, I'll end up working my way down as I get older and my CF gets worse. Of course, theres always the option of transplant at that point and the amazing results that can have, but of course, you have to go through the darkest, hardest time in your life to get there!

I can say all this, but I'm never going to stop pushing and trying to better my business and myself. It's just not in me to sit back and slouch through life not trying. Even as I'm typing this, I'm rebooking all the dogs I had to cancel last week due to health. CF will not have me in chains, strapped to my bed. I will fight harder because of this and try to be proud of what I can accomplish. I'll probably always want more! ;)