Need a rant to people who understand!

Hi everyone! This is my first post on here but I've been reading the forum for a while and feel like I may as well join in!

I was diagnosed with asthma when I was 13 but mostly got my symptoms around horses and eventually got to the point where I had to give up my horse and everything to do with them. After that my symptoms improved by a huge amount unless it was particularly cold weather. My asthma has always been in the background and every now and then I would need a course of the dreaded pred but after 1-2 weeks I would be back to normal.

Last september I had a 'flare up' went back on the pred for the usual 5 days, this didn't resolve it so had another course. Long story short, I'm still on the bloody pred at a dose of 40mg, this has been up and down highest dose of 80mg lowest 15mg. I've tried various inhalers the most effective being seretide. I'm also taking qvar, spiriva, singulair, theophylline, and god knows how much ventolin! I'd never had a hospital admission for my asthma until november last year, just had the odd neb until that point. Since november I've had 9 admissions, 4 of these I was admitted to the ITU and all the others HDU. My longest stay was for a month. This is all really starting to get me down although at the moment I'm feeling a bit more positive about it as I was discharged from RCH this morning! But I know this feeling won't last long! :(

I'm a single mum so it's also affecting my son in a big way as he's having to stay with my parents a lot. My Mum kind of understands asthma but not really and my Dad definitely doesn't, he's convinced it's something in my head and I just need to take 'that little blue inhaler' every now and then! His opinion hasn't changed even though he's seen me in the ITU and intubated! As well as speaking to the doctors, who I know most of now on a first name basis!

The only support I've really had from my family is the babysitting which doesn't help with trying to stay positive. Confidence has taken a massive tumble as well, I've always been on the big side but I've put on nearly 3 stone since I started the pred back in september. Despite all the meds I'm on I'm still getting out of breath just having a shower or cooking a meal and I'm getting really p***ed off with it! On the flip side my GP surgery has been fantastic, it's now at the point where my GP is emailing me at weekends to check how things are going, and making sure that I go to the surgery twice a week for check ups.

Anyway sorry for the long rant/whinge but I needed a to vent to people who hopefully understand what it's like to feel like c**p, and take a lot of meds, struggle day to day and have had enough!

xx

2 Replies

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  • Hey

    sorry to hear that you've been having such a rough time with your asthma, ( we both take theophylline..phew i'm not the only one on that still :) )

    do you have a consultant of have you asked to be referred to a specialist asthma unit.. if not its definitely something that i'd suggest. on the plus side your GP sounds very helpful (so asking for a referral should be a breeze) but they can really only do so much.

    But i can definitely relate to 'oh just take a couple puffs of your blue inhaler'....sometimes you end up need well a whole inhaler or two.. and the best phrase from an ITU consultant 'i'm surprised we haven't met before'.

    i have to say my dad sounds somewhat similar 'can't you just will yourself better', but most likely he is worried about you and if the way he is treating you and your asthma concerns you, you could ask him to come to some of your drs appointments or sit down and have a chat about it? (i found my dads attitude changed dramatically after witnessing an (appalling) lung function test.. sometimes its not the big ICU admissions, but the little things that hit home)

    hope this helps a bit

    (though i realise that a months worth of hospital food is a trauma in itself)

    hang in there

    sarah

    xx

  • It sounds as if you're having a really bad time and the fact that your Dad doesn't 'get' asthma isn't helping much. Sounds like your GP is a star, though, and Sarah's idea of getting your Dad to come to an appointment with you sounds a good one. Perhaps if you could get him to make a few notes about what he thinks asthma involves your GP could tactfully give him a few facts.

    Keep well.

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