Sometimes I Feel Like 2 Completely Different People
Since my 2016 IPF diagnosis, so much has changed for me. I can no longer participate in the sports I once enjoyed or go for a run to channel my energy or frustrations with the day. I can no longer maintain the social schedule I was so fond of, such as getting together with groups of friends or colleagues for dinner or socializing well into the evening after a full day at work. I can’t freely move about my home or workspace without being tethered by the swirling cord of an oxygen cannula or hearing the quiet hum of my portable oxygen concentrator in the background.
These are all physical losses that have resulted from my diagnosis. But what I find most difficult to deal with are the social and emotional impacts.
In previous columns, I have written about the emotional turmoil that comes from living with a fatal lung disease as a young adult. I also have shared about my wild outbursts resulting from heavy steroid use. As difficult as it is to admit that these things are problematic for me, I think it is important to highlight these internal IPF life struggles.
Another invisible part of this illness is that as a result of my conflicting emotions, I sometimes feel like two completely different people, either at the same time or within minutes of each other.
I recently drove to an event for a friend to celebrate an important milestone in her life — the upcoming birth of her first child. I am very happy for her and am so thankful to celebrate the couple’s excitement.
The drive to this celebration was not a long one. At the start of the trip, I was sad and angry that IPF is likely going to steal the option of motherhood from me. While I was en route, my mood changed as I listened to music and thought about all the upcoming excitement in my life, including traveling to Europe in September, craft shows I am part of, and weekends away with friends. I felt so much happiness and gratitude that while my life course differs significantly from the paths of my peers, IPF hasn’t stopped my life completely. Within the short time of driving to my friend’s house, I went from rage and bitterness to gratitude for life, despite my fatal illness.
This personality duality is difficult for those around me to deal with and it leaves me feeling extremely confused. I often wonder how it is possible to go from feeling one extreme to the other in such a short timespan. I also wish I knew what causes my mood to switch for the better. In the experience above, it could have been the music I was listening to or the fact that I had quiet, undistracted time in the car to think about the upcoming excitement in my life.
I think the initial feelings of sadness and anger were valid; IPF is an unfair disease and I have had to learn to accept that I am not likely to outlive my friends, family, or colleagues. I need to remember to leave myself space to feel these emotions. However, I also need to remember the importance of thankfulness for the fact that IPF hasn’t taken everything away from me. Only I can manage that delicate balance for myself.
If you have any tips for balancing personality extremes, I’d love to hear from you.
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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
Eva Shiells
I'm sorry to hear about your struggles. My loved one was "tethered" and on steroids. I don't recall him having outbursts but we were warned. I know he said he always tried to remember to be grateful. Also we traveled, not by air but on cruises. I wish I would have asked him more about his secret. I have a beautiful pic of his foot on the beach in Mexico with his oxygen tubing laying over his foot. Simple but representative of his life with a lung disease. Oh, he did eat small healthy meals but did not deny himself occasional indulgences.
Charlene Marshall
Hi Eva,
Thank you so much for reading my column and for getting in touch and sharing your loved ones struggles. I'm so sorry to hear of the struggles he experienced, and he sure sounds lucky to have had you at his side. I will remember him in my efforts to be grateful for each day as well, and I am so glad you were still able to travel on cruises with him and obtain those special moments. He sounds like a wonderful man, that we could all learn a lot from. Thank you for sharing a bit of him with us.
Kindest regards,
Charlene.
DaveUK
Hi. Im 45, got diagnosed with Sarcoidosis at 34, and over the last few years, Pulmonary Fibrosis. I know exactly what you mean Charlene. Its a very difficult thing to cope with. The longer you have it the worse this gets. Try meditation. Focus on clearing your mind, and thinking of nothing for as long as you can.
Let the detritus drop away. It can get so bad, you can begin feel as if you are going mad. By that I mean, losing your sense of reality. You really have to control your thoughts, your T.V. viewing habits, [nothing too dark] Its pretty terrible seeing people your own age, leading a 'normal life' Be careful of other people. They can hurt you, without meaning to at all. Its natural to relatively compare you life to their lives. Nobody gets it, I know. Not doctors, etc, no-one. Only us, the sufferers. Also, be aware of the drugs. I was on Pred, Lorazepam, Citralopram, Fluoextine, Methotrexate etc, etc, and when I stopped I realised that some of these drugs had been stopping me from thinking for 8 years.. They sedated me for a decade and didnt tell me, and my brain started racing at a thousand miles per hour after I stopped.
[Of course drugs have different effects on different people]
Support groups arent for me. My big friendly chocolate lab is my best pal these days. Im sorry I dont have any easy answers. There aren't any. Peaceful Wishes. XXX
Charlene Marshall
Hi Dave,
Thank you so much for reading my columns and for getting in touch. It is really nice to be connected with someone similar in age to me, as a young adult (I turned 30 in December). Although, I certainly wish our paths didn't connect over a chronic lung disease! My friend was just diagnosed with Sarcoidosis as well and between us, I'm pretty scared it will develop into PF for her as well. Sometimes my worry is more for others than myself, maybe that is my way of coping, I'm not sure, but I can't imagine watching my friends go through this disease. It sure gives me a better appreciation for what my friends have to endure watching me live with declining lungs...
Meditation is a good thing to try, I need to do more of this as I find my sleep is often compromised from my mind constantly thinking. All of us need our sleep, so medication is a good thing for me to try, thank you for the reminder about this. You are also very right about how painful it is to compare ourselves to others (even though it is natural and unintentional) living 'normal lives'. Only others with a chronic illness can truly understand how hard it is.
Glad your canine companion is helpful for you - my golden retriever is too. She's just my best bud! Take care, and feel free to connect any time. Wishing you well Dave XX
Charlene.
Donna Vickers
So often I too feel like 2 people in one. One who requires oxygen therapy for the once simple task of breathing and one who loves to discover and live life on a whelm. I'm often saddened when I see my nasal cannula and frustrated with the hum of the concentrator or the delay in the airports or my fear of no disabled access or the stares from others. I don't like being on first name basis at the pharmacy or the constant calls from Doctor offices and the staff miscomminication of my needs and concerns. I have so much to be angry for however, I have made a choice to be thankful for everyday, every hour of my life. Tomorrow sometimes come with complications but today I'm here, I'm thankful and I'll fight with God's help until I close my eyes. I won't give up! Thankful for my healing and all it encompasses mentally, physically, emotionally and socially.
Charlene Marshall
Hi Donna,
Thank you for reading my column and for getting in touch with me via the comments. Although I hate that you can relate to this column, and how it feels to feel like two completely different people in one, it is also comforting to know that others get it so thank you for sharing. I love to discover, travel and live my life on a whim like you've expressed and it is so hard to be reminded of living with a chronic lung disease when my oxygen cannula gets in the way of my being able to "just go".
I can also relate to all the things you shared that bring you sadness and frustration, I completely agree with you! The constant calls from the doctors re: appointments, tripping on the oxygen line, being on a first-name basis with healthcare professionals, etc. I also am grateful that you are choosing to be thankful each day, this can be hard when our days are tough so kudos to you for making this conscious effort! Sending you best wishes and strength Donna, thank you again for getting in touch with me.
Kind regards,
Charlene.
Tom Heine
Im encouraged by your sharing the realities of coping with IPF changes and behavior. I'm not on oxygen yet however am entitled to get it for exercise-pending. I think constantly readjusting to a new limited reality would anger anyone, and yes it is unfair. I am older so I expected my body to give out soon however not this way! So I adjust, have new expectations, adapt as I can, and try to meditate on the good in my life.
Tom
Charlene Marshall
Hi Tom,
Thank you so much for getting in touch with me and sharing your thoughts on my column. IPF seems to change everything for us, doesn't it? I suppose in a way it is only how much we let it, but inevitably it will change our physical abilities and living with a lung disease becomes real when starting to use supplemental oxygen (or it did for me anyways). Glad you're able to manage without oxygen so far, and I certainly hope this remains for you for a long time to come. You're right - constant adjustments are required, but they can seem less daunting when we also adjust our expectations and adapt as best we can. Best wishes to you!
Thanks again for reaching out and take care Tom.
Regards,
Charlene.
Peggy Ross
What a poignant picture! I am sorry for your suffering. I will be 81 next month, and was diagnosed in 2009 with PF. The doctor looked morose when he said there was no treatment, but the full impact of his words didn't hit me until a year or two later when another guest at a birthday party told me I had a fatal disease. I consulted a pulmonologist, who, despite some symptomatic inconsistencies, indicated that my scans were consistent with IPF. I began researching IPF, and learned of a recently-developed medication, perfenidone, but my insurance company said my copay for a 30 day supply was over $2,400, well beyond my budget. So I researched this medication and one other and decided to try the enzymes serrapeptase and nattokinase. Within less than 3 weeks, my coughing and breathlessness was dramatically reduced. At that time, my doctor suggested a consult with UCSF, as my symptoms were not entirely consistent with IPF, regardless of the radiologist's conclusions. They also could not diagnose, suggesting a biopsy. It revealed I have Hypersensitivity Pneumonitis but recommended no treatment, as it appeared my disease was stable. My lifestyle is not what it was, with the fatigue and need for oxygen for any exertion, but at least I can walk my dog and water the garden and cook, and carry on a long conversation without coughing or choking for lack of air. I seem far more vigorous than most in my age group.
I strongly recommend to anyone reading this, add Serrapeptase and Nattokinase to your list of "must haves". If you know of a doctor who could advise me about dosing, I would love to hear from them.
Charlene Marshall
Hi Peggy,
Thank you for reading my columns and for getting in touch with me via the comments. I'm so sorry you're going through this as well, IPF is such an unfair and cruel disease isn't it? Glad you took matters into your own hands and looked into alternative options to the anti-fibrotic medications that seem to be helpful to you. Just be mindful of the Serrapeptase in particular, another member on this site commented on how he thought it was helpful too but found out he had been severely mislead. You may need to do some reading to find the comments, but it turns out the Serrapeptase in particular wasn't good for him, although I don't know anything about the other one. Something to just be aware of, and get doctors opinions on.
Glad your symptoms have become manageable though Peggy, I'm happy for you and that you can do many of the things that still bring you joy. This is so important :)
Kind regards,
Charlene.
Joseph Lopez
I have recently been diagnosed with PF (3 weeks ago). I am 74 and always thought I was totally healthy and destined for and active senior life style. It is a shock, it is depressing, but I have a great family for support. My lack of stamina, and ability to get air came on almost overnight. I appreciate your forum and will continue to refer back to it. I still have a number of tests to undergo to assess how much lung capacity I have lost, or have left. Any recommendations for treatment or medication are yet to be determined. Thank you again for your forum, I remain an optimistic follower.+Joe
Charlene Marshall
Hi Joe,
Thank you for reading my columns and for getting in touch, although I am sorry to hear of your PF diagnosis. I remember that time so vividly, and it was really scary and confusing, but please know others can relate and are here for support. It is a shock to adjust, I agree but I Am very glad to hear you have a great family for support. This is so important! Please feel free to join the PF forums: http://pulmonaryfibrosisnews.com/forums/ at any time and connect there too, there are wonderful patients and caregivers alike on that site who will provide support too. Hang onto that optimism and hope, and please feel free to connect any time.
Kind regards,
Charlene.
Ginger Adelstone
Hello Charlene,
I understand fully the ups and downs of mood. I go thru it all the time, and it’s veey frustrating, as I had been a pretty stable person, now I’m not. And my friends and co-workers put more items on my plate to do for them. I just can’t keep this pace up. So I’m leaving several groups I’ve been heavily involved in for years because the mood swings and demand on time are causing too high of a stress factor for me.
A quick question though, you recommended a mask for me. I cannot find the msg fro you. Can you please remind me again? Thank you so much. I wish you well.
Charlene Marshall
Hi Ginger,
Thanks so much for reading my columns and for getting in touch via the comments. As always, it is great to hear from you although I am sorry you can relate to the ups and downs associated with IPF. It is so tough, isn't it? I also felt like a pretty emotionally stable person before my diagnosis, but now the slightest thing can set me off and cause me frustration. It is both embarassing and frustrating to me! I'll be thinking of you as you choose to leave the groups you've been a part of for years. While it is necessary to put our health/needs first, it is never easy and its something I am really struggling with too unfortunately. For me, the biggest demand right now is work but there is this annoying little thing called 'financial stability' that I need to continue working for. It makes me sad!
Oh, no worries - was it the Vogmask? That is the one I use, and have had no issues with it and I think it protects me pretty well. Let me know if that sounds familiar :)
Take care and wishing you well also!
Warm regards,
Charlene.