• Charlene Marshall

    Member
    September 22, 2018 at 9:26 am

    Love these Katie, thanks so much for sharing!
    Writing has also become a hobby of mine (per the forums, and PF News columns) and is very therapeutic for me now as well 🙂

    I’ll take some time to read your short stories Katie, I’d love to! I am still working on getting caught up on the forums and with my columns post vacation, but I am always looking for things to read. Thanks for sharing!
    Charlene.

  • Katie Bagshawe

    Member
    September 22, 2018 at 3:05 pm

    My only problem is that I am intensely critical of myself, I’ve taken these short stories down for now to work on editing and such, but I have done music reviews and some Psychology related blogs. I also wrote an article for a local newspaper about mental health. I’ll post these below if anyone is interested!

    https://www.psychreg.org/katie-bagshawe/

    https://www.musomuso.co.uk/news/nine-inch-nails-london-o2-may-23-2014-live-review

    One thing I found with grief is how difficult I found it to write, like my brain had a totally block. It’s something I’m still struggling with I guess.

    • Charlene Marshall

      Member
      September 23, 2018 at 8:34 am

      Thanks for sharing these Katie!

      It always is that way, isn’t it? That we’re critical most of our own work and that we don’t treat ourselves with the compassion and gentle feedback that we would if we were reading others’ work. I am like that as well, and sometimes struggle with wanting to make my writing public because I am not happy with it. I joke with my friends that I believe I have a bit of OCD when it comes to wanting my writing to be ‘perfect’. Then I try to let that go, and give myself some grace as I am just writing whatever comes to mind and on my experience of living with IPF as a young adult. I hope you’ll consider re-posting the short stories after you’ve made edits that you are happy with 🙂

      Thanks for posting this additional content, I’ll give it a read tonight when I am back online. Right now, it is a beautiful autumn day here – temperatures ate 15 degrees celsius – and the sun is amazing. I should spend some time outside today.

      Thanks for writing as always, it is great to hear from you!
      Enjoy your weekend.
      Charlene.

      • Katie Bagshawe

        Member
        September 24, 2018 at 12:22 pm

        Thanks Charlene, I think that’s why I’ve never finished anything as I get too critical and abandon it. A few weeks ago I started my memoirs regarding Dad’s journey with IPF but forced myself to not delete anything. If I’m honest I’ve had a low couple of days and spent a lot of time sitting in the cemetery yesterday just feeling the overwhelming weight of grief suffocate me. The positive I find in mental health lows is how easy I find to write so I’ve return to it today and after a spot of editing, I’m going to commit to get this finished. I’m just shy of 20,000 words at the minute. Maybe if I can find a way of sharing it I will do here.

        We had the same beautiful Autumn day yesterday. It was crisp and the skies were blue, the air felt clear and clean and I sat for nearly two hours in the cemetery reading a book and listening to the wind rustling through the trees. Such precious moments.

      • Charlene Marshall

        Member
        September 25, 2018 at 3:20 pm

        Hi Katie,

        I know this is way easier said than done, but try not to be too critical of your work as it is a true reflection of how you’re feeling in this moment. One of the members of our professional development team at work has a technique that they use when they’re trying to capture our thoughts (as a staff) on a new idea or process. I actually hate when they make us do this, but am pleasantly surprised how much is revealed. They time us, and say “pens to paper” and we can’t lift the pen off the paper until the timer goes off, and we’re to write down exactly what flows through our minds and not give it a second thought. Grammar and sentence structure doesn’t matter at all, which I struggle with but then I am able to get so much down. Maybe challenge yourself to trying this, and only return to what you’ve written a few days/weeks later? Just an idea for you. Good for you for committing to get your piece done about your Dad, it might help get it outside of your heart and mind anyways.

        I hope you have many more of those days where you can relax with a book in the quiet, enjoying the beautiful weather. Sending you much strength and love to get you through these darker days … you will emerge again, just give it time. Hugs!

        Charlene.

  • gil

    Member
    September 24, 2018 at 6:10 pm

    Katie,

    I wanted to read your stories but I am unable to get passed the “This domain is parked” page.

     

    • Charlene Marshall

      Member
      September 24, 2018 at 7:24 pm

      Hi Gil,

      Let me enlist in our tech team’s help to see if I can find out why you’re getting that error message. I don’t think it is the actual link, as I am able to open it so it may be the browser you’re using. Let me see what I can find out for you 🙂

      Charlene.

  • gil

    Member
    September 24, 2018 at 7:37 pm

    Thank you Charlene.

    I  use Firefox Mozilla.

    gil

     

    • Charlene Marshall

      Member
      September 25, 2018 at 3:22 pm

      Hi Gil,

      I didn’t get an answer back from our tech team, but just wondering if you’re using a Windows computer or a Mac? I am on a Mac and opened Katie’s writing links with Google Chrome browser and it seemed to work. Do you have a second browser on your computer? If so, give that a shot and see if it works. If it doesn’t, I can always save and send them to you directly as well 🙂

      Hope you’ve had an alright day!
      Cheers,
      Charlene.

  • Katie Bagshawe

    Member
    October 1, 2018 at 12:00 pm

    Hello everyone! Sorry I’ve been MIA. Today is my Father’s birthday so we took some time together as a family. I’ve put that writing project on hold for the minute as I’m working on something extra special regarding my Father so unfortunately you can’t access that blog just yet. I was going to try and edit my original post but alas the forum won’t let me, any way you can help with that Charlene?

    You can read some PF related blog posts at a blog I run for a support group that is about to launch where I live. https://spirefibrosis.wordpress.com/blog/

    As soon as I get my personal blog back together I will post the links here. Thanks so much for the interest ?

  • Charlene Marshall

    Member
    October 4, 2018 at 7:13 pm

    Hi Katie,

    Thanks so much for writing to us. As always, it is great to hear from you!

    Sorry about my delay, I’ve unfortunately been busy this week with some tough things going on personally: family emergency, funeral of a friend/colleague and recovering from that smoke inhalation that I wrote about last week. Unfortunately I’m still feeling the unpleasant side effects from that. Anyway, I digress…

    Were you able to do something that your Dad would have enjoyed as a family for his birthday? I’m so glad you spent the day with your family, these are important on those special dates that have now become even more significant. You should be able to edit any posts that you’ve made Katie by clicking on the small “edit” button above the post. If not, let me know and I can help you with it and/or make the edit for you! I think as long as you wrote the forum post, you can edit it, but I could be wrong. Looking forward to hearing what you’ve been working on for your Dad.

    That is so great about launching a support group Katie! We’re working on possibly starting a virtual one through this site as we’ve heard via survey that there is a need for groups that isn’t being met for a wide variety of reasons. Will both patients and caregivers be able to attend this group Katie?

    Looking forward to reading the blog when it works best for you to share.

    Warm regards,
    Charlene.

    • Katie Bagshawe

      Member
      October 15, 2018 at 9:51 am

      Hey Charlene!

      Sending my love to you that you’ve had some rest from that awful incident. I can’t imagine how distressing, but equally frustrating that must have been for you! I’m so glad you shared it though as it’s important people are aware how something so thoughtless to some can greatly impact others. Our Hospital is supposed to be a total no smoke zone and I always get angry when I visit because there’s always groups of smokers hanging around the entrance but security can never be bothered to ask them to move. It really angers me.

      The first group was okay but unfortunately we had only had one attendee, it’s difficult recruiting members without the help of healthcare professionals so hopefully over time we can keep raising awareness and encouraging more people to come out. Patients and caregivers are both certainly welcome to attend, I’ve basically suggested that anyone affected by PF so even those that just want to give back to the PF community can do in some way. It’d be lovely if there was an online support group, with the magic of technology nowadays! Plus it’d be nice to include even more people from all walks of life, from all over the world. I read a research journal recently that stressed how attending support groups is hugely beneficial to mental health when dealing with PF, I’ll see if I can dig it out and share it.

      I forgot to also share some posts I wrote for a Psychology website/blog too. Some of those were focussed on lung disease in the hope of raising awareness. I hope to be writing more pieces for them soon in the same vein. Thinking of that I got confirmation of passing my Postgraduate course in Psychology which I studied whilst caring for Dad, I officially graduate next month eek!

      https://www.psychreg.org/mental-health-lung-disease/

      https://www.psychreg.org/self-care-carers/

      https://www.psychreg.org/emotional-relationship-carer/

      There’s a few more on there about other psychology topics but these one were more specific to health related topics. I’ll share more as soon as they are published!

      • Charlene Marshall

        Member
        October 15, 2018 at 5:57 pm

        Hi Katie,

        Thanks so much for writing, and I hope this note finds you doing as well as possible. Congratulations on your graduation next month, that is amazing news! How wonderful, a certification you should be very proud of and I am certain your Dad would be as well. Congrats again 🙂

        Thanks for all of your kind words, I am definitely on the mend and am trying to wrack my brain about how to prevent this in future for others. It was very frustrating and upsetting, and completely preventable which is why I wish there was something I could do to keep it from happening to someone else. Sadly, most public places are similar to your Hospitals there; despite signage, large groups of people smoke right outside the entrances and no one really enforces the law. It is however law in Canada to be 9 meters from any public entrance/exit before smoking, but I don’t know who enforces it an even an episode like I had is unlikely to change things unfortunately. Glad I am on the mend, but am now wrestling a bit of a virus/bug that is sticking around. It shifts between cold symptoms and flu symptoms, and the fatigue is sometimes unbearable. Anyways, enough about me…

        That would be really lovely, as you say, if the numbers of your group could grow for all people involved in the PF community could be part of it – caregivers, patients, advocates, etc. It is a small community, and as we’ve mentioned before, a lot of support can come from engaging with others going through something similar. Sit tight, we’re working on a group and are in phase two of collecting the data for it! 😉 If you can find that article, I’d be SO grateful if you could email it to me!! It would really help us 🙂

        Thanks for sharing your publications, that is great news. Wow, you’ve certainly done some amazing things Katie, kudos to you. I’ll definitely have a look at these as soon as I can and do some reading. So appreciate everything you contribute to the forums. Chat with you soon.

        Much love,
        Charlene.

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