Mindfulness & Pulmonary Fibrosis

[katie-bagshawe]

Hello! Mindfulness is certainly a resource that can be hugely beneficial when looking after your psychological health, something that we all definitely take for granted. I do agree with you Charlene though that in some terms it can unrealistic and like everything in life, the benefits will vary from person to person. I studied a little Psychology whilst caring for my Dad which helped me understand how to manage his anxiety and being someone who has struggled with depression my whole life, it helped me understand and assess my own mental health and how to better protect it. If you ever get the opportunity to learn about how our mind works then I would seek it out as it helps put into terms of dealing with a rainbow of emotions and not always being in control of them. If you want to do your own reading there is a wealth of books but I really enjoy those written by comedienne Ruby Wax who has since trained academically in the studies of Psychology and Mindfulness (http://www.rubywax.net/sanenewworld.html)

I don’t necessarily practise “mindfulness” but I try to keep it in mind so to speak in day to day life or in times when I might be feeling my psychological health decline. I too suffer quite a bit with lack of sleep so have learned routines through caring for my Dad about properly winding down, using a diary to write down thoughts or to prepare to-do lists, turning the laptop and tele off a few hours before bed and instead reading or colouring whilst listening to music. I also accept that our mind has “sick days” and so sometimes we need to do whatever is best to allow it adequate time to rest to feel revived again.

Dad really suffered with anxiety with his breathlessness, obviously because he had regular severe exacerbations that were really frightening for him, so we found ways to try to calm him before the anxiety would even hit. He loved classical music so I often played that for him, holding and stroking his hand, encouraging him to close his eyes and to focus on something (I bought a little tub of lavender hand cream so he would often massage this in his hands with his eyes closed to help him focus more centrally on his breathing so it wouldn’t get out of hand). All of this could be considered mindfulness, it’s exactly what it says on the tin, to be mindful of your psychological health.

The best way to explain is a bit like your brain going a hundred miles a minute, it’s like a computer that has too many windows open; everything slows down, things start crashing and eventually it will just go kaput. You have to give yourself time to sit, to be calm, to be quiet and to allow everything to rest and eventually your brain can close some of those unnecessary windows and you’ll feel like you can cope more. Mindfulness is very sensory based, it doesn’t have to be meditation or yoga, in fact a concept you might want to look up that has become “cool” is the Danish term Hygge. I’ll google a description as this will explain it best…

“In essence, hygge means creating a warm atmosphere and enjoying the good things in life with good people. The warm glow of candlelight is hygge. Cosying up with a loved one for a movie – that’s hygge, too. And there’s nothing more hygge than sitting around with friends and family, discussing the big and small things in life. Perhaps hygge explains why the Danes are some of the happiest people in the world.”

See? It can be simple everyday acts that can occur anywhere. It’s just tapping into your emotions and your head and ultimately giving it a breather so that you can focus better on remaining hopeful and positive. Here are some things I would suggest looking up if you want to adapt mindfulness into your routine…

Side note: when Dad completed his Pulmonary Rehabilitation here in the UK one of the sessions was with a Psychiatrist who spoke about coping with stress in illness and he swore by listening to meditation tapes or reading books and sitting quiet. He also suggested that people should seek counselling where available to find techniques to cope, “coping” is such a big word in Health Psychology because it can translate to so many different things. Often people “cope” by merely getting by and it’s no surprise that research into people living with PF shows a rapid and huge decline in mental health, which has also been proven to affect the length of illness, so I really must stress that your psychological health is as, if not more important than just monitoring your physical health.

https://www.headspace.com/

https://www.calm.com/

https://www.blurtitout.org/

[Charlene Marshall]

Hi Katie,

Thanks so much for getting in touch and for your thorough reply to this topic! It is such an important one for many of us, and I understand that it doesn’t work for everyone as well. I always appreciate hearing from others on the topic of mindfulness, so thanks for the time and thoughtfulness that you put into this post for us all. I definitely will check out the resources you provided, as I am very interested in the link between mindfulness and both psychology and our physiological health too. In the training I did by Peter Marks, I really had no idea how much physical health can be reduced by mindfulness practices. Like you caution as well though, the effects of it definitely varies and it doesn’t work for everyone. Thanks for the link to Ruby’s work, I’ll check it out!

I like the idea of thinking of our mind as needing “sick days”, that analogy along with it being an organ and sometimes depression and anxiety can be an illness of that organ, requiring proper care/treatment for it to go away (just like pneumonia of the lungs). Maybe a bad analogy, but both of those visuals help me during my tough days psychologically. I also don’t practice mindfulness on a regular basis (I move too fast, something I’m working on) but I do try to do better at mentally letting things go or engaging in things that are important, not the trivial stuff.

Sounds like you were an amazing caregiver to your Dad, how lucky he was to have you! There are so many calming benefits to activating our senses during times of anxiety, I’m glad you re-highlighted this for me. Thanks again for all the information, makes the idea of “mindfulness practices” a little less overwhelming and more simplified, which is important. Remembering our psychological health needs is important as well, as you say, and I would argue that this is harder than our physical needs as those can be seen by others and addressed.

Thanks again Katie, so glad you’re part of our forums now and the login worked for you!

Charlene.

[chuck-harrison]

Hi Charlene , to be honest with I’m just a ham and egger , I really don’t get what your saying I guess . But one of the things I do is think of things that have to be done before winter , so my mind is always in gear so to speak . With that being said what I do a lot to relax is use lavender , I rub on my temples , under my nose , and even splash some on my pillow , I find it slows me down , relaxes me enough where I can control my thoughts , in other words I can sort things out and not feel all the pressures of task after tasks .
Not much to add to the blog , but it helps me
Thank you Charlene for reading

[Charlene Marshall]

Hi Chuck,

Thanks for getting in touch with us, I’ve been wondering how you’re doing!

Not a worry at all, about not really believing or engaging in mindfulness practices – everyone is different, not right or wrong and the impact of different mindfulness techniques vary greatly for each person. I’m glad you have a technique that works for you, which sounds like it is thinking of things/preparing for things in advance is best for you. I also operate like this from time to time, and it feels like my mind is always moving (like yours) but not in a bad way as it allows me to have less reactionary stress if I am prepared for something ahead of time. Does this make sense?

So glad you use the lavendar to help you calm and slow down, and that this technique works for you. Is it an essential oil that you use? I also use these and find the benefits very helpful! Do you ever use peppermint? This is another one that I find is quite relaxing 🙂

Hope you’re doing well Chuck, and as always, thanks for writing to us. It is great to hear from you!
Charlene.

[chuck-harrison]

Yes it is Hungarian lavender , I works , yes we are all different in mind and body . I do try different ways of doing things , I get a lot off the blog and tried several things , I also try different oils especially when I’m feeling anxious, some work others not so much ? There are times when a cool wash cloth over my eyes and quiet just as well as spending money on the oils or other ” natural ” remedies .
But we keep looking for the same thing , calm in the stressful times , and energy just to do the simplest tasks
Have a great Sunday Charlene !

[Charlene Marshall]

Hi Chuck,

Thanks so much for writing, it is great to hear from you as always 🙂 How is your weekend going?
The weather here is beautiful today, much less humid so I am eager to catch up on my forum replies and spend some time outside on this sunny Sunday morning!

Glad your lavender oil works for you, it is a scent I enjoy as well, although I can’t take too much of it. Is this the oil you use for when you’re feeling anxious as well, or is that a different scent? What are your top 5 favourite oil scents, if you had to pick? I’m always curious about this from others!

I like the idea of sitting in quiet with a cool wash cloth, and another thing I like to do (don’t laugh, okay?) that always makes me feel better is …… I like to imagine what I’d do if I ever won the lottery! Sometimes when I am upset, I spend hours thinking about this quietly in my bed. Not because I would want the money, but I think of how I could make so many people happy and that brings me a lot of joy and helps me relax. I’m not sure why I enjoy doing this so much, but I have for as long as I can remember 🙂

Like you, I just hope for calm among the chaos and for energy to just continue doing what I love!

Take care and chat with you soon,
Charlene.

[katie-bagshawe]

Thanks so much for your reply Charlene. I’ve always been interested in alternative therapies so had an interest in “things” in this area, mindfulness and self care seems to be more commonly accepted in the wider world which means more awareness of mental health which can only be a good thing. But everyone “copes” in different ways so mindfulness is totally personable to the individual of course. I guess really it boils down to making sure that you take time to rest or to slow down, even for a couple of minutes. You could take that from your post about holidays and how much that has revived you, it’s a real intense vision of mindfulness by physically getting away from everything. For some that’ll be all they need, but for others it’s something that needs to be acknowledged more often, like everything you learn as you go.

Hi Chuck! Lovely to meet you. Lavender is incredibly useful and has so many wonderful qualities. It is an antiseptic and anti-inflammatory but at a more basic level is known to help anxiety. Of course like all alternative therapies it is by no means a replacement for prescribed medication, but it is a useful supplement to have around and is really fool proof to grow yourself so have a go if it’s something you’re interested in. I swear by a product in Lush called Sleepy lotion, I’ll provide a link below but I’m not sure how it might work in your region so if you can get hold of Lush products have a look online or in your nearest store.

https://uk.lush.com/products/lavender/sleepy

My Mum helped me create a lavender hedge in our back garden and I regularly make cuttings to dry out and have handy. I also bundle little bunches of leaves and flowers together from the plant and place them on my Dad’s stone at the cemetery as a memento of something I feel is quite symbolic in the time we shared together when he was ill.

I must say though that if using essential oils, be careful and seek advice with some as they can impact medications and might encourage greater issues. For example when my Dad had heart surgery and was prescribed warfarin he was advised to avoid interaction with rosemary as it has similar chemicals to aspirin (which he was also prescribed). Better to be careful if introducing more essential oils or aromatherapy and do a little research, but lavender in itself is perhaps all you need as it ticks all the right boxes.

 

[Charlene Marshall]

Hi Katie,

Thanks for your thorough reply, it is great to hear from you!
I agree re: mindfulness and being a really personal choice in terms of it working for you or not. Even if not a formal mindfulness practice, I can only see benefits to slowing down and focusing more on our needs. My trip really highlighted this for me, and I now strive to live more like the east coast lifestyle: slower paced (a good thing) and focused more on friends, family and connections. To me, they just live a life that seems more fulfilling compared to the chaos and hustle and bustle of where I currently live. I want to strive to be more like them, and need to figure out how to do that on a regular basis.

Thanks for the information regarding the Lavendar as well Katie, although I know it was in response to Chuck. I have a Lush near where I live, although I’ve never really been a huge fan of their products, I am curious about this sleepy lotion you mention. Maybe I’ll have someone pick some up for me, as I also can’t step inside the store due to the intense fragrance. Such a neat idea of growing it as well, I actually thought it was a much “higher maintenance” plant than it sounds to be 🙂

Great reminder about essential oils too! The other thing I try to remind people of is the importance of them being therapeutic grade oils, as many companies make “cheaper” oils but they aren’t pure. Of course, this is counterproductive to how we want them to benefit us so definitely important to do a little research beforehand.

Thanks again Katie, I hope you’re having a great weekend!
Charlene.

[katie-bagshawe]

I’m the same if I step in a Lush, it gaves me such an intense headache plus I really dislike the staff fussing around you all the time, the website is so much easier to navigate and all the ingredients are heavily listed so it’s easy to see the kinds of products they stock. On a similar note to the Sleepy body lotion, if you want help winding down and happen to have a bath then I really recommend the Twilight and The Big Sleep bath bombs. Lush also have some really nice skincare products too!

I totally agree on getting hold of good essential oils as like you say people do tend to sell watered down versions. In the UK we have a store called Holland & Barrett where you can buy good essential oils at a reasonable price. Plus once you get a good essential oil you can blend it with fragrance free lotions to make it the strength you like (incase the scent can be too intense)

https://uk.lush.com/products/lavender/twilight

https://uk.lush.com/products/bath-bombs/big-sleep

 

[Charlene Marshall]

Morning Katie,

Ah yes, I didn’t even think about finding Lush products online. That definitely would address the scent and staffing issues; maybe I’ll check out some of their product via online ordering today! I should get more used to shopping online for things anyways, as the malls, especially during cold/flu season, terrify me and this is a good way to protect myself from air-borne illnesses 🙂

Actually, you gave me a really good idea for some easy Christmas/holiday gifts this year when it comes to essential oils and making products for others including lotions, bath bombs, etc. I try not to get wrapped up into the materialistic things of the holidays, and enjoy making things for others. This would be a nice gift to do with some epsom salts too. I like adding epsom salt to a bath with just a couple drops of an essential oil. Thanks again for writing Katie, enjoy your day!

Charlene.

[gil]

Charlene,

Mindfulness is a tool/way of life  that has helped me deal  with IPF and other unwanted feelings/sensations etc but most of all it has helped me become less judgemental and to stay in the here and now.  I would say the practice has helped me with the Racing Mind syndrome that seems to affect  many of us. I initially didn’t want to do the sessions (14 sessions) because my mind was so active and I didn’t think I had time to waste on silly things such as mindfulness.  Today when  I catch myself too busy to practice it is when  I know that I must practice it.  Other than devoting half an hour or more to it, I have found that I practice it when I cook,  shower,  and while doing other common activities as well as when I want to stop my mind from racing or going in different directions.  Mindfulness is something I keep learning about and what is so neat about it is that we go at our own pace and it brings peace even if it is only temporary. It really is a way of life,  another element we add to our life style.  Of course I had a great teacher, she is now working at the Stanford Medical center with women who are there for heart surgery etc…..

 

gil

 

 

[Charlene Marshall]

Hi Gil,

It’s so great to hear from you! I think of you often, and wonder how you’re doing….

I know I owe you a personal email in response too, and I’ll try to get back to you ASAP as I am working on catching up after being away on holidays. Thanks so much for writing though, and letting me know you’re doing alright.

Regarding mindfulness, your experience with this technique is very much what I hope it will do for me someday. I want to be less judgemental (I try not to be, or I’m not judgemental intentionally), less impatient and more focused on the here and now, and I know it is possible to do this with mindfulness based on others’ positive experiences with it. How did you hear about the 14 sessions Gil? Did someone recommend it, or who runs it/taught it to you? I really want to look into this more, as I am striving to find more peace and calm in my life, something I feel that IPF has taken away from me over the years, but especially as of late. I’m irritable and not unhappy in anyway, but do think I could be happier and I know that has to start with me. I need to give this another chance, as I get “caught up in the daily hustle and bustle” and forget to practice it, which as you say, is exactly when I need it most! Thanks for bringing that back to my attention Gil 🙂

Have a great day!
Charlene.