Melting Heat and Humidity Becomes Another Hurdle
As summer settles on most of Southern Ontario, Canada, it brings with it our first heat wave.
Normally, I love the heat. Even last year, after I received my diagnosis of idiopathic pulmonary fibrosis (IPF), I didn’t mind the summer months. This year, with significantly reduced lung function, I am finding it a challenge to breathe and be mobile, and the summer is just beginning.
The heat is causing one symptom this year that I don’t remember from previous years: exhaustion and fatigue. It’s been really obvious the past few days. I have needed a longer night’s sleep several days in a row, and I nap during my work day as well. In general, I have become more fatigued in the heat, and I am sure others can relate.
It’s bad enough having to decline social events to avoid exposure to germs that could exacerbate my pulmonary fibrosis. Now I have to turn down activities because I am tired.
I am trying to be strategic about what I participate in. I need to conserve my energy to ensure I can get through daily living. One thing I have noticed in this heat is that if I participate in something, it takes me days longer to recover than before the heat. So please understand that if you ask me to take part in something, I want to, but I am tired.
I don’t know a solution or compromise that will work when my family, friends and colleagues ask me to do things with them, and I may be unable to. I don’t want the solution to be that I can’t take part because I’m too tired. I also don’t want people to stop asking me to participate in things because of my declining lung function and fatigue. Nor do I want them to feel disappointed if I can’t do things they want me to do.
Sometimes, I can participate in social activities with friends for hours and not feel the impact right away. (It usually comes the next day.) On other days I can’t even carry my purse from the car without feeling tired. I have yet to determine what why the drastic difference from day to day.
One thing I am able to pinpoint is that my fatigue increases in excessive and prolonged heat and humidity. So don’t be surprised if you ask me to do something and I decline when it’s hot outside. Remember that I may not be able to participate, but that doesn’t mean I don’t want to.
I read an article on The Mighty the other day about how to use energy and find balance when you are chronically sick. Although I hate to admit I have a chronic disease, IPF is progressive and debilitating, so I could relate to this article. Heat makes the challenge even worse.
Not being able to do things physically drains me emotionally as well. The constant fight between my physical self wanting to do things and the realization that some activities will take an excessive amount of energy can leave my mind tired me feeling fed up.
This disease is all-encompassing, and I have a feeling my fatigue will become worse as summer progresses. Time on the beach may be one more thing IPF steals from me.
I’m feeling defeated today, although I know I am not, and I recognize that tomorrow may be easier.
I am curious to hear from you about this, because I know our disease impacts us differently. Does the heat bother you? If so, how do you minimize the impact of the heat and humidity?
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Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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Comments
Sandy
I live in Florida where we have the heat and humidity from May through September. I walk outdoors after 8 pm. I use a 4 wheel walker with a seat to rest when I tire and it also has a pouch to hold my oxygen, which I set higher than what I normally set it. I don't walk very far, but I need it to keep my legs strong. I also do weight exercises each day (upper and lower) to keep up my strength.
Carolyn Rodenbach
IhaveIPF,PH,OA, DDD,FIBRO,a Gouty Artbritis.
The increase in humidity seems to make my joints and muscles hurt,all over.If it rains or is foggy, the pain increases. Dampness, Ch!lled, cold are deadly enemies..
Jen
Carolyn Rodenbach just passed away June 5th 2018 in Sacramento. It was a hot week. Carolyn got an infection in her lungs and was hospitalized for a short time. After returning home her health had rapidly decline. I found this comment from her , from what appears to be almost exactly one year ago. She was having a hard time with fatigue and breathing this Month. A wonderful women who will be dearly missed .
Charlene Marshall
Hi Jen,
Thank you for sharing this - it gave me goosebumps to read the comment almost one year ago from Carolyn and to know she passed so recently. I'm very sad and so sorry to hear of her passing. It is so important for us to be careful in the heat, to ensure no infection starts which can lead to a rapid decline, as it appears Carolyn experienced. Thanks for sharing with us, although I wish the news were different. May she be at peace and breathe easy now.
Kind regards,
Charlene.
Eileen Lewis
Hi Charlene,
Thank you for sharing about how heat affects PF patients. I did not notice it so much last year but I really have this year. I too am tired and think that the heat is a big factor especially here in the south(Alabama).I think the humidity affects shortness of breath too. I too am learning how to moderate my activities.I can't garden in the summer any more but don't let it bother me when the poison ivy gets into the english ivy. I am a very active person normally but am learning how far I can push myself.I love reading and short afternoon naps. Or I just sit with a cold glass of tea. I want to be active and involved but have to pick and choose.However in most ways life is very full and meaningful. if I have the blues, exercise helps.
It sounds like you have a very reasonable, positive approach to the illness. Keep fighting and posting.
Sheria Martin
Thank you for sharing your frustration with fatigue. I have had IPF for three years and appreciate your willingness to talk about our disease.
Sandy
I had a cough for years and no diagnosis from any doctor until I couldn't get up on October 30, 2015 and my husband had to call an ambulance. Still they thought it was pneumonia. I went home with oxygen 24/7 and still am on it. My pulmonologist just prescribed a newly released antibiotic to help stave off episodes of bronchitis. It's called azithromycin. Started it today. Keeping my fingers crossed. I also take prednisone. Esbriet didn't work for me. Walked onight around 6 and could hardly breathe it was so humid. Have to go back to after 8 pm again. Although I get up around 6 am, I am way too slow in the mornings to go out then.
Bruce R. Majka
Good day Charlene,
Thank you for this article. After fighting IPF for seven years now, I have just hit this new symptom you describe, chronic debilitating fatigue. Although the extra strain of IPF, especially on the heart has made it more likely to become fatigued, I never experienced this level until just recently. Now twice a day, from 3-5 PM and then 7-10 PM I experience a complete shut down and compelling need to sleep. I struggle with understanding the cause for this, although as you mention the heat and humidity appear to exacerbate it. I have tried to power through these episodes, tried to sleep longer at night, increase O 2 levels, drink coffee, etc, nothing appears to work.
I welcome anything anyone can add to ways to combat this new and disturbing symptom of IPF.
P.S. Also enjoyed your article on Let me be mad. Amen sister!
Sandy
Bruce, I find drinking a lot of water and keeping hydrated helps me. I only have one cup of coffee in the morning. Makes me anxious and I don't need that.
Jonathon Till
I was diagnosed with IPF about a year ago after CT scans and a biopsy. One of the primary symptoms for me has always been my lack of energy and fatigue. I do feel the effects of the disease on my breathing but no where near as much as feeling that I have run out of gas!!! I share your frustration and really thank you for highlighting this element of the disease
Sandra husain
I was diagnosed with IPF a year ago and although we have a few hot days in the uk I managed ok with day to day living, slower but nothing I would have to cancel, bearing in mind I was about to be 70 so no late night parties. My husband and I go to Cape Town every year for our winter their summer, oh boy did I feel the difference I spent most of the time in the apartment with aircon trying to stay cool. While I have no helpful hints other than move to the UK were our winter and summer are not to different and is not so challenging for me. I would like to thank you for articulating my feelings, my husband for the first time understood how I felt in South Africa. Stay well and thank you.
Ed
Vaporize Marijuana and also drink a cannabis laced tea every day,..it combats the inflammation and helps improve breathing and stops the coughing fits!
Sandy
I don't know why I didn't think of this sooner, but cleaning out my dvds I came across my Leslie Sansone Walking discs. Now I can't go at her speed anymore,or even think about doing the whole disc, but starting today and everyday I'm able, I'm going to start these easy to follow steps. I found the disc at Target years ago called WALK AWAY THE POUNDS and I'm sure you can find them on the internet.
Abbi
I have that very same walking dvd, although I now use a treadmill daily. Staying active is so important, but it gets harder when the humidity is up like it is now. Prayers for all of you who struggle with the symptoms of this disease as I do.
Charlene Marshall
Hi Abbi,
Thank you so much for reading my columns and replying to Sandy and others through your comments on this topic. I couldn't agree with you more re: how important it is to stay active, although it certainly is difficult when the humidity is up. How far do you walk on your treadmill? I love walking my dog outside but that is becoming difficult in the heat so I think I'm going to have to use my treadmill more as it is in the AC, at least for the summer months. I think I will start using it daily and try to walk for 40-60 minutes each day with my oxygen on. Do you use supplemental 02 yet? Thanks again for writing and prayers sent back to you as well!
Kind regards,
Charlene.
Charlene Marshall
Very cool idea Sandy! Let us know how it goes for you :)
Would you be walking on a treadmill, as opposed to outside in the warm summer heat? What a great goal to have! I just replied to comment above as well that I am going to start walking more also. Goodluck with your walking journey!
Charlene.
Sandy
I’m ashamed to say I haven’t done it. Have had some trouble with my back hurting, but I’m still doing my upper and lower weight exercises. It’s still a good dvd though. No treadmill. It’s walk in place mostly. You don’t need a lot of space to exercise. Think I bought the dvd in Target a long time ago (when I was healthy).
Charlene Marshall
No need to be ashamed Sandy! It is important to do this when you're feeling well so that it can be successful and benefit you as much as it can. Good for you for still doing your upper and lower weight exercises, I know this is easier said than done. This is a really great idea, and resource to share with others so thanks for sharing it through our comments.
Wishing you nothing but the best.
Kind regards,
Charlene.
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Appreciating the time and energy you put into your website and detailed
information you provide. It's great to come across a blog every once in a
while that isn't the same outdated rehashed material.
Great read! I've saved your site and I'm adding your RSS
feeds to my Google account.
Charlene Marshall
Hi there,
Thank you so much for reading my column and for reaching out via the comments with such kind words. It means a lot to us that our website is helpful to others out there, and glad you find the material refreshing. It is nice to hear about an illness from a patient's perspective sometimes, isn't it? As a patient living with IPF, I certainly find this beneficial myself! Glad you've bookmarked us and thanks again for your kind comments :)
Charlene.
Denise Ward
hello and thank you for accepting me into your group.
I was diagnosed with IPF last year after a CT scan . I was not having many symptoms at the time. Presently I am having more flare ups with symptoms , I am not sure what triggers it. I am guessing the humid weather . Also an exacerbation of allergies & asthma symptoms. I am curious if any other people also use CPAP machine for sleep apnea. I also noticed frequent episodes of apnea since my diagnosis. I spoke with pulmonologist about starting esbriet to slow the progression of my disease. Any comments or information would be greatly appreciated .