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  • FIRST POST
    • Emzilla
    • By Emzilla 21st Nov 18, 3:36 PM
    • 3,390Posts
    • 12,836Thanks
    Emzilla
    Very Scary Times......
    • #1
    • 21st Nov 18, 3:36 PM
    Very Scary Times...... 21st Nov 18 at 3:36 PM
    Hi everyone

    I've been thinking about whether to start a new diary for a little while now, but decided it would be good to have somewhere to write about everything that's happening at the moment. I've been on these boards for a long time and have got friends on here, even if I haven't been posting that regularly this past year.

    So, as some people will know, I've got Cystic Fibrosis. I've had a bit of a bad year health wise and have been on oxygen since May. I became ill around the middle of October and was admitted to the high dependency unit in hospital.

    Things got very bad, so bad that they had "the conversation" with me about the very real possibility that I wouldn't make it. It looked very bleak for a day or so, but I gradually improved. Basically, my lungs were struggling to get rid of the Co2 and they were slowly getting poisoned. I was on a Bipap machine (to help me breathe) pretty much 24/7, with just 30 minutes off it so I could eat and drink. They eventually weaned me off the machine during the day and I was just using it at night.

    I spent about 1.5 weeks on HDU and then another week on my usual ward before they let me go home. It has been agreed that I need a lung transplant as my lungs just aren't coping as well as they were. I'm on quite a bit of oxygen now, which is still allowing me to get out and about, and I'm using the Bipap at night, to try and avoid getting into that state again. I've been for my first assessment for the transplant at Harefield in London, and I'm waiting for my overnight assessment appointment, which will be at some point in January. After that, I will hopefully be on the transplant waiting list.

    It's all very very scary, but I'm just glad that I'm still here at the moment!! The name of the game now is just keeping myself as healthy as possible so that I can get my transplant and some shiny new lungs!!

    I've been off sick from work for just over a month, and I suspect I will be off sick until I've had my transplant and recovered from it. Not great for the bank account, but my health is more important than money. I'm on SSP right now, which is better than nothing.

    Now that I'm out of hospital, I'm going to try and do some extra bits online to bring in a few pennies. Don't worry though!! I won't do too much and it'll just be things online when I'm just watching TV or doing my nebulisers. My health is my ultimate priority and I won't do anything stupid to jeopardise it.

    Emz xx
Page 7
    • Hopefuljoy
    • By Hopefuljoy 8th Apr 19, 9:18 PM
    • 374 Posts
    • 4,132 Thanks
    Hopefuljoy
    Hello Emz, it's nice to see you back again. My mum isn't on oxygen yet but it's moving in that direction. She is very scared which makes the breathing harder. One step at a time.

    I used to love Wimpy as well! There isn't one here but McD is doing table service at last!

    Have good sleep tonight. x
    With family, friends and pets (or any combination of them) life will be fine!


    Emergency fund 4000, Penny a day ***, mortgage overpayment this month ***
    • jwil
    • By jwil 9th Apr 19, 6:45 PM
    • 10,284 Posts
    • 35,742 Thanks
    jwil
    Are you going to see the new Pet Sematary Emz? I'm tempted to go by myself to see it
    "If you can dream it, you can do it". Walt Disney
    • MuffinTops
    • By MuffinTops 10th Apr 19, 7:47 AM
    • 2,278 Posts
    • 7,078 Thanks
    MuffinTops
    Hello Emz,


    Great news about the PPI and your increased lung function. Long may that continue.


    I'm very lucky where I live as I have 2 Wimpy's close by. I also used to love their burgers as a kid.


    MTx
    • Emzilla
    • By Emzilla 11th Apr 19, 6:13 AM
    • 3,390 Posts
    • 12,836 Thanks
    Emzilla
    Are you going to see the new Pet Sematary Emz? I'm tempted to go by myself to see it
    Originally posted by jwil
    Much to my OH's dismay, I really don't do horror films. Anything too gory or too 'jumpy' and I don't like it!!

    I've been to the cinema by myself before, it's not too bad, and I've seen a lot of people do it, especially with superhero movies.

    Emz xx
    • Emzilla
    • By Emzilla 11th Apr 19, 6:15 AM
    • 3,390 Posts
    • 12,836 Thanks
    Emzilla
    Hello Emz,


    Great news about the PPI and your increased lung function. Long may that continue.


    I'm very lucky where I live as I have 2 Wimpy's close by. I also used to love their burgers as a kid.


    MTx
    Originally posted by MuffinTops
    Hi MT

    Thank you

    We have got one Wimpy near here, but it's on the seafront and it's not a proper Wimpy with plates etc, like they used to be. Burgers are still lovely though, if a bit more pricey than McDonalds.

    Emz xx
    • jwil
    • By jwil 11th Apr 19, 9:26 AM
    • 10,284 Posts
    • 35,742 Thanks
    jwil
    Much to my OH's dismay, I really don't do horror films. Anything too gory or too 'jumpy' and I don't like it!!

    I've been to the cinema by myself before, it's not too bad, and I've seen a lot of people do it, especially with superhero movies.

    Emz xx
    Originally posted by Emzilla
    I'm not a big fan of horror generally, but I do like Stephen King! I've been by myself before, just debating on whether I want to spend that much. Cheaper to wait til it's out on DVD.
    "If you can dream it, you can do it". Walt Disney
    • Hopefuljoy
    • By Hopefuljoy 13th Apr 19, 9:44 PM
    • 374 Posts
    • 4,132 Thanks
    Hopefuljoy
    I'm just reading Stephen Kings Under the Dome. It's the first book of his I think I've read and it's much better than the series was. I think I'd be too scared of Pet Semetary though!
    With family, friends and pets (or any combination of them) life will be fine!


    Emergency fund 4000, Penny a day ***, mortgage overpayment this month ***
    • jwil
    • By jwil 14th Apr 19, 8:05 AM
    • 10,284 Posts
    • 35,742 Thanks
    jwil
    I'm just reading Stephen Kings Under the Dome. It's the first book of his I think I've read and it's much better than the series was. I think I'd be too scared of Pet Semetary though!
    Originally posted by Hopefuljoy
    Stephen King books rarely translate well to the big screen, there are some exceptions - Shawshank Redemption, The Green Mile, Stand by Me, Carrie (the original), but most adaptations are generally acceptable at best. He writes a lot of good books and they are not all 'horror'.
    "If you can dream it, you can do it". Walt Disney
    • Emzilla
    • By Emzilla 16th Apr 19, 4:26 PM
    • 3,390 Posts
    • 12,836 Thanks
    Emzilla
    Hi everyone

    So I've obviously not been back at work for around 6 months now and whilst my health is pretty stable at the moment and I don't particularly feel down or depressed in any way, but I haven't felt right for a good few months and I couldn't really put my finger on what the problem was (other than having CF and needing new lungs clearly!!). However, I've been watching a few videos on Youtube of other CFers, and one of them summed up the problem exactly!!

    Basically, unless I've actually got something I have to do (like go out with my niece and nephew or pick my OH up from the train station etc), I'm just kind of spending my days just watching random Youtube videos, picking my phone up and looking at random apps (even if I've only just looked at it) and just pretty much wasting time until I have to go and do something (like pick OH up etc). I'm not depressed by any means, I'm just lacking a purpose. I've got no routine (apart from my meds routine) and nothing concrete to do on a daily basis.

    The Youtuber I was watching said it was like there was monumental change around the corner (either good or bad), but his life was just going about 1 mile per hour and it was driving him mad!!

    I just really need to remember that even though I'm in limbo with my health, I still need to get out and do stuff (which I do to some extent - I'm not a hermit or anything) and regain a sense of purpose. I basically feel stuck and need to really pull myself up and live my life, and not just as someone with CF, but as someone who is still alive and is still able to get out and about (for now at least).

    So I'm going to come up with a few ideas as to how to manage this:
    1. Let's face it, I'm not going to be allowed to go back to work anytime soon - so I need a "work purpose". I'm going to challenge myself to make 1,000. I'm going to get a sheet with 100 squares and mark off every time I get 10 and see how long it takes me. Not too much pressure there, but hopefully adding up the totals and getting those squares coloured in as quickly as I can will spur me on. Can be money made from anywhere - surveys, writing, mystery shopping etc
    2. I need to get more exercise - sitting on my sofa isn't going to get these lungs any stronger. I'm going to aim for going for a walk at least 5 times a week - 5,000 steps each time would be great, but I won't push myself to get there just for the sake of a number. I've also got my physio coming over on Thursday to organise a fitness routine for me (stretches and strengthening exercises mainly), so I'll incorporate that into this too.
    3. Get out at least twice a week and do something fun - whether it's bowling with the kids, going to the pub quiz with my friends or going to the cinema with my OH - it all counts.
    4. Take an hour out each day and do something just for me (but not waste it!!) - things like cross stitch (I've still got a kit I've been doing for ages), trying a new craft, reading a book or I might even try and cook properly (and not just bung something in the oven or microwave!!).
    5. Treat myself once a week - Not talking something extravagant - just a new top or a new nail varnish - just something nice to brighten my week up a bit.
    Sorry I've rabbited on a bit!! As I said earlier, I've been feeling out of sorts for a while now and I'm so glad to have finally pinpointed what the problem is!!

    Emz xx
    • jwil
    • By jwil 17th Apr 19, 2:27 PM
    • 10,284 Posts
    • 35,742 Thanks
    jwil
    That sounds like a good plan Emz. Is it worth scheduling some time in? i.e. 10am-12pm = 'money making', 2-3pm exercise, 3-5pm leisure - that sort of thing. Give yourself some structure but make it flexible so if you are unwell or have other commitments you can change it.
    "If you can dream it, you can do it". Walt Disney
    • Silver Queen
    • By Silver Queen 17th Apr 19, 3:12 PM
    • 658 Posts
    • 2,914 Thanks
    Silver Queen
    That sounds like a great idea, Emz. I think a lot of people nowadays experience a bit of a lack of purpose. I think jwil's idea of scheduling your day is good, it will help you a bit with your daily routine and structure.
    Debt Totals April 2019::
    350 Natwest Credit Card / Now 0 (paid off and closed 04/2017) 15,500 postgrad loan from parents/ Now 7,500 500 train ticket loan from parents / Now 0 (paid off 16/02/18) 2,000 Overdraft Now 0 (paid off 09/03/18) 1,967.83 Barclays 0% card Now 1,396.76
    Total 9,146.76
    • beanielou
    • By beanielou 17th Apr 19, 6:56 PM
    • 62,688 Posts
    • 272,288 Thanks
    beanielou
    Could you not think about a wee bit of volunteering in an area that interests you? xx
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • beanielou
    • By beanielou 22nd Apr 19, 7:49 PM
    • 62,688 Posts
    • 272,288 Thanks
    beanielou
    Hope you are ok Emz xx
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
    • Emzilla
    • By Emzilla 25th Apr 19, 6:12 AM
    • 3,390 Posts
    • 12,836 Thanks
    Emzilla
    Hope you are ok Emz xx
    Originally posted by beanielou
    I'm fine thanks Lou

    Emz xx
    • beanielou
    • By beanielou 25th Apr 19, 10:30 AM
    • 62,688 Posts
    • 272,288 Thanks
    beanielou
    I'm fine thanks Lou

    Emz xx
    Originally posted by Emzilla
    Good xx
    Lou~ Debt free Wanabe No 55 DF 03/03/14.
    **Credit card debt free 30/06/10~** **Weight loss 2 stone 12 lbs **

    "A large income is the best recipe for happiness I ever heard of" Jane Austen in Mansfield Park.
    ***Fall down seven times,stand up eight*** ~~Japanese proverb.
    It starts with you, it starts from now. *** It is ok to be me.***
    ***Keep plodding***
    Out of debt, out of danger. ***Be the difference.***
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