[Wendy Dirks]

I’m struggling a bit right now. I am definitely living my life but I’m feeling very torn. To explain – and since we’re here in hobbies – I have a crazy hobby that I really love. I say crazy but there are literally thousands of us out there doing this. I collect 1:6 scale fashion dolls, like Barbie, but many others as well, and have transformed one room of my house into a 1:6 scale city. There are homes, a pub, a golf resort, a university, a yoga studio, a gym, a medical centre, a café, and more – a miniature world. I write a soap opera blog about their adventures – here’s a link if you are curious https://dirksdolls.wordpress.com/blog/. At the same time, although I have retired from teaching, I have a research position at a university. Earlier this year I brought all my equipment home and I am still working with a number of colleagues from all over the world. My problem is that as my disease progresses, I simply do not have the energy to do everything anymore. I am supposed to be attending an exercise class that is a follow up to pulmonary rehab and I like to practice chair yoga at home. These are basic self care activities. But research, hobby, and self care are impossible in the same day. Showering is exhausting, exercising is exhausting, working at the microscope and image analysis – staring at a screen all day – is exhausting and between prioritising work and self care, I have almost no time for my hobby and that makes me feel depressed. How does one juggle all the important things in life when every activity requires a three hour afternoon nap afterward! Anyway, I’m working very hard right now to finish up several projects with my former PhD students so I can finally get back to a normal schedule and play with my toys! Thanks for a place to vent, by the way.

 

[Wendy Dirks]

Hello, everyone – I saw one of the team at the Interstitial Lung Disease Clinic yesterday and my hypersensitivity pneumonitis continues to progress so the next step will be treatment with mycophenolate alone, without prednisone. The doctor spent a long time explaining the possible side effects and the need for close monitoring. She also told me that I would not feel better, but that their goal was to keep me stable. She said most people tolerate mycophenolate well but the two side effects are nausea and fatigue. I already have fatigue and I’m not eager to become Rip van Winkle! Do any of you have any side effects? Any advice you have for me? Warnings or positive experiences? She told me she wanted to keep my lungs working for the next 20 years! She said for that reason, they don’t want me on prednisone because the side effects over the long haul aren’t good and they think I’m in for the long haul!

Thinking I might last another 20 years had got me thinking I need to make more of an effort to live a healthier lifestyle. I have to admit that I don’t really try at the moment. My attitude has been eat, drink, and be merry, for tomorrow you die.

I always leave the appointments feeling crushed because my illness is progressing but I always wake up the next day feeling a sense of hope. Anybody else have this reaction?

Best wishes,

Wendy

 

[Wendy Dirks]

Thanks, Mark – I’m one of the British Lung Foundation’s stars in their pulmonary rehabilitation videos that play in doctors’ offices! ? I go to a “Healthy Lungs” followup class but this summer I have been inundated with research deadlines and spent way too much time sitting and staring at computer screens. ?

https://youtu.be/LIxfiDcE_L4

[Wendy Dirks]

Thanks, Mark! I’ve heard that before about prednisone and I will discuss it again if my lung function declines. Over the last year my appetite has decreased remarkably but so has my activity and so my weight remains the same. I’m hoping that my lung function hasn’t declined much over the last three months and I can carry on as usual for now. I find myself becoming full of anxiety before these checkups but I’m trying to stay positive.

[Wendy Dirks]

My father was on prednisone for some time with IPF 30 years ago. My doctors won’t put me on it because I am fat and they don’t want me to gain any more weight. I’m back at the hospital for lung function tests tomorrow and a meeting with my consultant. I’ve been told that if my lung function declines again, I’ll have another scan and the next step is immunosuppressant drugs. I’m not looking forward to that. I have this terrible fear that if I’m on them, I’ll be confined to home completely to avoid bugs and a debilitating chest infection. I have hypersensitivity pneumonitis, not IPF but any information on what it is like on these drugs is appreciated.

[Wendy Dirks]

Hi, Charlene –

Before I was diagnosed with PF (I have hypersensitivity pneumonitis), I had several clots in both lungs after a history of DVT. I basically slept for two months and was barely awake and sitting up for another month. Afterward, one of the clues that there was something else wrong was the complete change in my sleeping habits a year later. I sleep a minimum of 10 hours every night. If I get less than that, I need a nap in the afternoon. Getting up in the morning is very difficult and I’m rarely out of bed before 11:00. Fortunately, I’m semi-retired so I don’t have to worry about work. I wonder if poor sleep quality overnight due to the PF is responsible for sleeping so long and so late. Once I’m awake, I potter around forever before I’m dressed and ready for the day to begin. It’s frustrating because the day is over then before I feel as if I’ve accomplished anything. I think, unfortunately, that sleeping for long hours is the new normal for PF patients.

I don’t have any suggestions except to try and honour your body’s needs as best you can.

Best wishes,

Wendy

[Wendy Dirks]

Oh, Susan, I feel for you! We finally had to hire a gardener but I still try to do as much as I can.

[Wendy Dirks]

I am trying to get as much exercise as I can. I’ve been through a six week pulmonary rehab course 3x now and am now going to a follow up class. My problem is that afterward, I am completely exhausted. I generally come home and take a nap, anywhere from 2.5 to 4 hours! This week I was very active – I did quite a bit of gardening on top of a session at the exercise class and today I am suffering such extreme fatigue that I am feeling very low and discouraged. I feel like a zombie. I just keep telling myself, “This too shall pass.” I hope so, anyway!

[Wendy Dirks]

My coughing fits when I laugh are downright scary. Thanks for responding – I’m going to ask my consultant at my next appointment.

[Wendy Dirks]

I am devastated to read this. I had been thinking about her and wondering about her for weeks since she went for her transplant. Her passing is the second this week – the first lady of Israel, Nechama Rivlin also died this week of PF, also following a transplant a few months ago. I’m so terribly sorry although I know she was a woman of deep faith and this will have sustained her. A terrible loss for our community.

[Wendy Dirks]

Oops, just realised I haven’t shared any positive strategies, just complained… sorry.  I do try and meditate more or less regularly. 🙂

[Wendy Dirks]

I read the tips from NIH but to be honest, it’s pretty difficult to be told to be active, spend time with friends, etc., when you can’t walk more than a few feet without stopping to catch your breath. I know I need to prioritise exercise more than I do – I can go swimming, or to a follow up class post-pulmonary rehab, or a wonderful chair yoga class and I find myself just not doing it. Why? Just getting up and getting dressed and organised is so much work! Today I was going to do all kinds of things and instead, here I am not even dressed! (I did do some work at the computer – yes, actual work). I need a shower but I have come to hate showering so much that I dread it. So before some of us can follow all these tips, we need some motivation to just put our clothes on! When I’m like this, I start feeling horribly guilty and that makes me feel even worse. I give myself pep talks, telling myself that it’s okay, I’ll shower and dress tomorrow, it isn’t the end of the world, yes, it’s okay to take a nap. But it’s difficult.

[Wendy Dirks]

For me, it is definitely showering. As a result, I shower less frequently than I did and developed a new routine. I try to shower every other day and I don’t use all the products I once used. I try to be quick and efficient. I put a mirror on my desk and sit down there to do my hair and facial skin care. I rarely use makeup since I don’t go out much anymore but if I do, I also do that sitting at the desk.

Dressing is also exhausting so I take my time and rest in between items of clothing.

I stopped cooking long ago because it’s difficult to stand that long. More importantly, cooking fumes set off horrendous coughing fits. I’m super lucky that my husband has taken on this task and does his best to look up new recipes and actually seems to enjoy it!

[Wendy Dirks]

Most of the time I accept where I am in this process of dealing with my disease. Sometimes I get down thinking that what I’m dealing with is the process of my dying, which is true, but it’s also the process of living, because dying is the normal and natural end to that process. Mostly I am cheerful and happy. I don’t go out much anymore, as walking is so difficult. For years before my diagnosis finally made it clear why I was breathless, I was so embarrassed at my inability to walk up a hill. I thought everyone was judging me – “Oh, look at that fat old lady, can barely walk.” I didn’t understand why I couldn’t do the things I could once do with ease. And now, I can stop blaming myself. I accept that I can’t do things I could once do. But every now and then, it’s really difficult. My husband and I went for a walk the other day and, as usual, I had to stop every 2-3 seconds to catch my breath. I remembered the spring that I decided to start jogging, 10 years ago. I remembered how proud I was when I could run the whole distance around my neighbourhood. I felt awful that I can barely walk around it now. But the sun was shining, the birds everywhere feeding the new spring babies, and eventually I felt okay again. Life continues.

[Wendy Dirks]

Hi, Nan – I really feel for you. My father died of IPF 30 years ago and at the time his doctor told us to be very vigilant about our lungs because they didn’t really understand the underlying genetics very well. My own case was complicated because I had pulmonary emboli following a DVT after surgery for a broken ankle. I just didn’t recover and several years later, constantly complaining to my GPs about my inability to breathe, I was finally referred to the ILD clinic and diagnosed with a different form of PF, chronic hypersensitivity pneumonitis. My doctor told me that PF runs in families but that it manifests in very different ways within them. It seems as if there is a genetic predisposition and the trigger and manifestation can vary between individuals. It’s so frustrating to have to fight and fight and fight for a diagnosis. Apparently getting a diagnosis can be very challenging. At least once we have one, we can begin to deal with it. All the best to you!

[Wendy Dirks]

Thank you, Lorraine. Learning about and practicing self-compassion has been a life saver for me, even before my diagnosis. It’s such a blow to learn we have something so debilitating. I’m due to begin immunosuppressant medication soon and when I asked the doctor if it would make me feel better, and she said no, I felt so deflated but she said that’s not their goal – it’s to keep me stable. That perked me up a bit. Many of my friends and family want to help, others just seem not to get it. I don’t look different – I don’t look ill. So they expect me to be able to do everything I’ve always done and I just can’t. Then, when I do go out, I feel as if people are staring at me because I have to stop and catch my breath and I’m breathing so heavily. I’ve even had people pull over in their cars and ask me if I’m okay, and then I have to explain, that, yes, I’m just catching my breath. So self-compassion and self comfort mean a lot!

[Wendy Dirks]

Thank you, Lorraine! I will definitely check out that website. I can’t seem to figure out how to upload photos, but if you go to the link in my first post, you can see loads of my photos.

[Wendy Dirks]

Oh, Lorraine, I really feel for you. I’m glad you’re getting out a bit more and I hope that counselling will help. I feel sure that it will. It’s difficult not to feel grief for ourselves in this situation and I think it’s perfectly normal to do so. There’s a wonderful practice from Dr Kristen Neff, a mindfulness and self compassion advocate and author, a way of giving ourselves self compassion. I like to put my hand on my heart when I do it. This is my version which I learned from a wonderful yoga teacher: I say, “This is a moment of suffering. Other people are suffering just as I am right now. May I give myself the kindness and compassion I need in this moment.” Here’s a link to Kristin Neff’s website with alternative phrases you can use: https://self-compassion.org/exercise-2-self-compassion-break/.

[Wendy Dirks]

Thank you, Mark!

[Wendy Dirks]

Hi, Charlene – I don’t use oxygen at all yet but I wonder if it would help me sleep less! At the moment, my medical team thinks my illness is progressing slowly and aren’t doing anything except monitoring me and encouraging me to exercise. I use a steroid inhaler but that’s about it. I hope you manage to find a solution. I can’t imagine how I could work any more. It’s just not possible. Best wishes, Wendy

[Wendy Dirks]

I have done pulmonary rehab 3x and now attend a follow up class. It was a life changer for me I can’t recommend it highly enough.

[Wendy Dirks]

Hi, Daryl – Thanks so much for this tip. I will speak to my consultant about it when I see him in August. I’m always a bit ambivalent about adding yet another medication – I feel like a walking drugstore at times! I’ll see what he says. Best wishes, Wendy

[Wendy Dirks]

Thanks, Mark! Yes, we all need to do what we can and what we enjoy as long as possible.