Posts

Disability equality isn't always equal

This country (or in most cases, the world), is pathetic about disabilities and those who have them. I can only speak from my own experiences but I'm a mere drop in the ocean of those who basically get kicked in the teeth, even from services that are actually meant to help.

Case in point, my most recent experience which was the cause to write this post.

The parking on my street is a nightmare. It's so hit and miss, and no one cares. I've lived here for a year and a half and maybe half the time, I get parked on my own side of the street, and if I'm lucky (or it's well timed) I can park outside my own door. All the other times, I'm parked anywhere from on the other side of the road, to round the corner and down the hill. A lot of this is due to the fact my neighbours managed to all miss the parking portion of their driving lessons and forget any parking etiquette; they'll usually park as close to outside their own door as possible, ignoring where the other car…

Bye bye pred

I can finally wave goodbye to the little bugger that is prednisolone!

I've been on 10mg of pred every day since I was about 16, after a bad patch of pleurisy and also finding out my ABPA had come back to visit and sent my IgE levels to a ridiculous 2000 (they're meant to be below 500 from what I can find out). Because it was the allergic response to aspergilliousis, I was given pred rather than anti fungals. I'm not sure why, you'd have to ask my doctor, but I think it was more the allergy that needed treating as it can cause tonnes of lovely issues.

Anyway, it took years for my IgE to down to more acceptable levels, so I had to stay on 10mg long term. At the time, it also had added bonus of helping the pleurisy I had too, which, if I remember rightly, was an absolute bitch that hurt daily. Thankfully now its not as constant, but still there. When it's bad, I have to increase my pred to 30mg for 5 days, but also go to clinic for an xray as the pain is similar to a …

Orlando!

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A month ago, we got back from an amazing 9 days in Orlando, Florida. The first proper holiday we've been on in 4 years, saving up for so long made it so worth it! And we spent every penny we took, which was the intention, I just didn't realise how much stuff would cost over there! Most of it went on food, and a few little souvenirs, but savings are made to be spent on something memorable so we don't regret a thing! This will be a pretty long post though...

Whilst the holiday itself was amazing, the journey there left something to be desired; After waking up at 3am for a 6am flight, it was delayed by a couple of hours, and once we did finally get on, it didn't leave for another hour and a half. This meant our other 2 flights had to be rearranged as we'd missed them. They sorted this, with a few bumps, and we basically ended up on the same route, just 3 hours behind.

Our last flight (JFK to orlando), or rather just JFK the airport, was a fucking shambles. When you re…

Holiday excitement

So i turned 25! I feel so old considering I still regularly pass for 15. I know, I always get the 'you'll be grateful when you're older' comments too but they do get boring after a while. Sort of like the 'wow you must rattle' comments when people hear how many tablets you take a day.

Speaking of tablets, I'm 4 days away from finishing my holiday prep IVs and I've started packing up for holiday (10 days!!!) and even though I don't take a serious amount of stuff (I think I'm probably mid way, i do take plenty but i don't take as much as some of my other CF friends) my suitcase appears to be 3/4 full of meds. I'm only taking a cabin bag and an extra carry on, I get far too worried about putting things in the hold. But what really got me is that when I asked someone on british airways twitter account about possibly having an extra carry on just for meds - and what i got in reply was "oh don't worry, we have quite the generous carry…

Hit or miss

I have a hit and miss record of whether or not I get on with medical professionals. When I was 11, I was admitted into hospital, and I vaguely remember having a ward round with my consultants, several other clinic members and what seemed to be every fellow and junior doctor in the hospital (this may not be accurate, I just remember being absolutely surrounded in my little hospital bed). A female fellow was told to give me an examination and I said 'NO! Not her! I don't like her'. This was met with several surprised faces and glances (it still bothers me to this day, as coincidentally, I think she was muslim and I always worry I came off really racist!) The actual fact was, I'd seen this doctor several times in clinic, I'm pretty positive she was particularly bad at blood takes, and she always generally ignored me and spoke to my parents. This wasn't new. But I remember my dad telling me he was irked by her because they were always rang up with sputum or blood r…

You can't please everyone

I am not happy. Last night , before I went to bed, I checked my emails, as you do. I saw I had a comment on my last blog post. I probably should have ignored it, but as I was basically called a hypocrite, I felt the need to clarify a few points. It went as follows...

"You totally contradicted yourself "in the case of those with CF who can work and aren't restricted, sitting on their arse claiming they can't work cos they may get ill".You're well enough to go the gym 3 times a week yet you got money from 2 CF charities to go on holiday hmm maybe pot calling the kettle black comes to mind."

You absolute moron, you have no idea do you? First, yes, I go to the gym three times a week. This amounts to between 2 1/2 and 3 hours. Show me a job that is 3 hours long that gives me full pay! Seriously! Secondly, I struggle with the gym every time. I openly admit that. I can't keep up with everyone and when something calls for 3 rounds of x amount of reps, I str…
How long has it been this time? 3 1/2 months isn't bad going in comparison to previous attempts! How odd how I used to update this weekly and now I either can't be bothered or don't really think this is the audience for my thrilling tales of failing to finish my 4th cup of tea of the day as I have the attention span of a gnat or how shit amazon tv and netflix uk is recently. At least for a good old series you could get stuck in.

I still haven't done much these days. I couldn't even stick with my attempt to re-watch my Scrubs boxset cos it wasn't even that long ago that I finished watching it. I have a shocking amount of boxsets of tv shows sitting in my amazon wish list that just keeps growing as even though more than half the shows have finished (some even before this decade!) they still cost a frigging fortune. (More annoyingly, half of them I want to watch are on Netflix USA but you can't use things to trick your browser anymore cos they can catch you an…