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    • #15266

      Its no secret that having a chronic illness complicates the lives of patients living with the disease, and this unfortunately includes pulmonary fibrosis (PF). Since my own diagnosis of idiopathic pulmonary fibrosis (IPF) in early 2016, I’ve been consistently learning and making adjustments to what I can still do despite my disease, and what I no longer can. While some of these adjustments are visible and obvious to others (ie. no longer being able to play hockey), there are unfortunately many different invisible or unexpected difficulties that also come from living with IPF.

      For me, one of the most challenging things I am now having to deal with as my IPF worsens is the struggles I face with “brain-heavy” tasks that require a lot of thinking or focus. Unless I voice how hard it is, no one is able to know that I now have a hard time with many mental tasks. I never had this trouble before my IPF diagnosis, so I can only attribute these difficulties to this disease. There are a number of reasons why I struggle with these types of tasks, here are just a few of them:

       

      • Brain Fog: my amazing fellow columnist Kim Frederickson wrote a column about the struggles of brain fog for patients with PF back in May 2018. Until she did this, I didn’t know how real this was for patients and unfortunately this is one of the invisible and unexpected difficulties of this disease. Like Kim states in her column, I also feel as though I now struggle to think things through clearly due to the mental ‘fogginess’ I feel on a regular basis.
      • Short-term memory difficulties: this ties into the confusion I have with multi-step instructions as well; I simply struggle to remember details of what was just discussed in a meeting, as an example. This is really tough for me, and to an extent I find it embarrassing even though it isn’t my fault and I’m not doing it intentionally.
      • Staying focused: when I get tired during a long meeting, that is unfortunately all I can think about. I lose my ability to stay focused on the task at hand and my mind tends to wander. I can no longer fight the fatigue or force myself to focus. As a result, I dread long meetings and feel anxious about them in my workplace. My preference is to keep meetings to an hour so that I can hold my focus the entire time, however, I know this isn’t always realistic.

       

      Can you relate to these struggles as a patient living with IPF/PF? 

      Do you notice these types of tasks have become increasingly difficult for you as your disease progresses? 

    • #15306
      Donald Otis
      Participant

      Between IPF, fibromyalgia and the handful of drugs I take daily, I am pretty sure I don’t remember who I am half the time. I made the mistake of talking to the boss about this, so of course now I am under surveillance. Because the ADA is not really that important. C’est la vie.

    • #15319

      Hi Donald,

      Thanks for writing, although I am so sorry to hear of the struggles you’ve been having. It is so frustrating having to take meds for our illness, but then them having such terrible side effects isn’t it? I feel like my mental fogginess/fatigue is partially due to all the medications I take as well. Sorry to hear your boss wasn’t receptive to this, that is terrible! Hang in there and feel free to write anytime. We truly understand the difficulty of living with this darn illness. Thanks again for connecting!

      Charlene.

    • #15383
      Terry Moriarty
      Participant

      Geez, Charlene,

      I’m so sorry to hear that you are dealing with these issues at such a young age.

      I’m experiencing most of them, but I chalked it up to the aging process. They really didn’t hit me until after I retired. Except the fatigue, which has been around since I was diagnosed in 2007. Commuting with oxygen is very exhausting.  Thank goodness for telecommuting! I only had to go into the office about once a week. Now, since my disorder has been progressing, I’m tired all the time. If I go out, I know I’ll need an immediate nap on returning home and probably sleep most of the next day.

      But, I really thought the memory issues were senior moments. I used to pride myself on not needing to do lists. Now I can’t remember what I was planning to do a few minutes ago.  I used to have a photographic memory. Not anymore.  I need to have the instructions next to me all the time when I’m doing tasks that require ordered steps.

      Once again, your column has me sighing with relief. These aren’t symptoms of another incurable disease. Just side effects of the one I already have.

      Please keep sharing.

    • #15392

      Hi Terry,

      Thanks so much for getting in touch, it is nice to hear from you as always. I’ve been wondering how you’re doing the last little while…how are things going for you?

      Thanks for your kind words re: the newly discovered difficulties I am experiencing in terms of my memory or cognitive issues. It really is tough as I am still trying to navigate life as best I can! Like you, I am thankful for the option to work at home as lugging my oxygen out and about to the office is not the easiest for me, and I am often very tired once I get there, let alone having to work the rest of the day. I am on a break from work right now, and need to start assessing whether or not I return at all or in a different capacity (ie. part-time instead of full-time). I really don’t want to make this decision, but everything is getting so much harder for me. I am so thankful to have this role as a columnist and forums moderator with PF News!

      Based on my experience, and a wonderful article by Kim Frederickson on Brain Fog, I’ve come to realize the memory and cognitive issues are just part of being chronically under-oxygenated due to IPF. I believe this is my case anyways, and it does make sense physiologically. Are you going to ask your doctor if there is anything they can do to help with this? I’m not sure if I should or not, as I don’t really want more medications and there might not be anything they can do anyways. Curious to hear your thoughts!

      Thanks again for getting in touch 🙂
      Charlene.

    • #15397
      Patricia Hayden
      Participant

      Oh yes, can I ever relate. Thanks for this post Charlene. I am not alone once again.Go easy on yourself. I have to do this or I would forever be in turmoil.Learning so many life lessons with this condition and I am turning 65 in January.
      Take good care,
      Patricia

      • #15414

        Hi Patricia,

        Your kind words brought me a lot of comfort this week, thank you for sharing them. I also feel less alone as a result of being part of this forums community, and I am glad that is the same for you. Take good care, and I hope you had a wonderful weekend.

        Warmest regards,
        Charlene.

    • #15398
      Terry Moriarty
      Participant

      Most of what I’ve learned about being under-oxygenated is from another discussion group on IPF.  That’s where I learned about using different LPMs for rest vs. activity. I’ve learned nothing from my various doctors about this.

      I now know, through experimenting, that I need 8lpms when moving around and only 2-3lpms at rest and when sleeping.  In the house, I’ve attached a regulator to the tubing that I use to control the flow. I have to remember to raise the flow when I’m going to be moving around.

      The good news is I can use my POC when driving and don’t have to worry about running out of oxygen. I can set the POC to pulse rate 6 which is about equivalent to 3.5 lpms. I only need the tanks when moving around, like getting in and out of the car. I still have to use an electric wheel chair when out of the car to carry the tank because my balance is a bit off and I can’t pull the oxygen round on the cart. So, I’m not completely back to being independent, but working on it.

      • #15415

        Hi Terry,

        Thanks for your contribution to this post, I so appreciate it. As always, it is love to hear from you!

        I’m really glad to hear that various discussion groups have been informative for you in terms of learning about IPF and the management of this disease. LPMs is something my doctor left very “grey” as well after I was put on supplemental oxygen. He didn’t talk about adjusting it, how I would know I needed more, etc. which I figured out through various discussions with people as well. I am so thankful for the opportunity to do that, otherwise I wouldn’t have known. Do you find your oxygen provider forthcoming with this information? When I ask them questions, I find their really good and helpful at answering, however, unless I ask it isn’t information that is disclosed to me. I’ve just kind of figured out my oxygen needs in a similar way to you….

        Really glad you’ve found a system that works well for you Terry. Kudos for your efforts to be so independent 🙂 Do you plug your POC into the car to charge when you’re driving? This is by far one of my favourite features of a POC vs. my tanks!

    • #15399
      Terry Moriarty
      Participant

      Charlene, one more thought.

      When I was working in DC, there was a service that provided low cost rides for people with disabilities. Some were shared rides, which I didn’t mind when going home, but I almost always had a taxi in the morning. Is something like that available where you live? It really made commuting bearable for me.

      • #15416

        Hi Terry,

        This is really interesting information, I am glad that service existed for you! I’m not sure if there is something like that around here, I can look into it though. I like to drive and wouldn’t mind giving people a lift if they need it for commuting, especially if they could help me lift my tanks/POC in and out of the car. It’d be like having an extra hand which would be nice sometimes!

        Thanks for sharing, I’ll look into it. I am in a pretty big city, so I would imagine something like that would exist here too.
        Take care,
        Charlene.

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