With PH, It’s Important to Focus on What You Can Do, Not What You Can’t
“Auntie B, come catch me!”
My nephew yelled this, already off to a quick head start. Luckily, my sister was there to chase after him and take my place. I started thinking about how badly I wish I could run after him and play tag. How could I explain to a 4-year-old that I can’t run after him? How could I tell him that a simple game and running would make me dizzy and sick?
Moments like this make me hate PH and the fact that I’m on oxygen. It’s still hard for me to believe that I am unable to run without seeing black spots in front of my eyes from dizziness. My nephew turned back around and said, “Come on, just try.” All I could say were the words I hate the most, “I can’t.”
It doesn’t help my mental health when I find myself wishing things were different in these moments. I easily become angry toward my body when I think about all the things I could once do. It’s almost impossible not to think about the things I enjoyed before. My hobbies shaped who I was and gave me a sense of purpose.
Being a student athlete was a large part of my identity. I played ice hockey for my high school and state team and was traveling almost every single weekend for tournaments. Hockey was my outlet for anxiety and any anger and frustration I felt. I tried my hardest to push through any chest discomfort, breathlessness, and exhaustion because I wasn’t ready to give up playing. My symptoms eventually got to a point where they couldn’t be ignored.
When I was given oxygen, my world felt like it was turned upside down. I knew there was no going back to sports in the same way I once did. For months, I focused much of my attention on what I couldn’t do. I was frustrated with myself, had frequent outbursts of anger, became jealous of others, felt more depressed than I ever had, and wanted to be away from those who were able to live their lives so carelessly.
When I talked about how depressed and frustrated I felt, my therapist suggested I “write it all out.” I found that I truly enjoyed writing. It was a great outlet for my feelings and a way for me to express what I was holding on to for so long. Getting everything down on paper felt like a sigh of relief. I found a creative side to me that I always had but was too busy to recognize. Not only was writing an outlet for me, but it soon was able to help others who read my columns.
I rediscovered different interests that didn’t have anything to do with my physical activity level. I realized that I really love baking. Now I’m finding new recipes on Pinterest to actually try versus before, when I would just save the Pins and never make them. I’ve also found more time in my life to read. I’ve always loved reading but used to only have time for the books that teachers assigned.
Feeling like I had to find myself all over again once seemed like an impossible task. Little did I know that it wasn’t so much about finding myself again; it was more about focusing on the hobbies and activities that I could do comfortably, instead of dwelling in my depression and anger over what I couldn’t. I was surprised to realize that the hobbies I enjoy now have been a part of my life all along.
If you are feeling stuck while trying to find things you enjoy, remember the worst way to start is by focusing on the things you “can’t” do. Think about hobbies you have always enjoyed, or wanted to enjoy but maybe didn’t have the time. You don’t need to start over again; you just need to look into what has always been there.
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Note: Pulmonary Hypertension 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 Hypertension News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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Comments
Robert
I have the same problem.
I explained my problems to my 4 years old niece, simple way. That I can´t breathe, can´t run or walk fast. She was curious about my PICC, I said, that I have hole in my arm, through which I am getting my medications from my pump. She understood and always asks about it. I am really angry, that I can´t play with her anymore, jump and run with her, carry her around...
And about hobbies. IPAH took all my hobbies from me.
I can´t read. Due to trauma from learning about PAH I developed PTSD. My memory and focus was destroyed. It feels like my brain was fried. I used to read several books in the same time, now I have big problem to read one chapter. I was huge reader since being 3 years old, when my mother taught me to read. It was the biggest part of my personality my whole life. Now it´s gone.
I used to go to fitness. Another hobby made impossible.
I used to go to theatre and cinema. A lot. Mainly theatre. I am now not able to even walk to bus station to get to theatre and cinema, so another hobby gone.
I loved swimming. Now impossible. PICC can´t get wet, infusion pump can´t get wet. I loved water so much. Now I have big problem to even shower and clean myself. Washing is so exhausting and washing legs is horrible due to need to bend, which means suffocating.
I loved riding bicycle. Now impossible.
As it´s in article, I bake, but it´s not my hobby and we don´t eat so much of baked things anyway. And cooking? Before diagnosis, I vomited several times a week, due to suffocation, which lead to cough, which lead to vomiting. So I had to eat very little, so my stomach got much smaller. I eat once or twice per day now and smaller portions. I live with my mother, it doesn´t take much cooking for two people and I don´t have appetite most of the time anyway.
So I honestly have no idea, what to do now, when all of my hobbies were taken from me by iPAH. I am still waiting on Flolan to work, after five months since I started with medications. I am on two bottles of Flolan, on the most aggressive medications possible.
Cheryl Lauer
Robert "fitness" is possible, not being a marathon runner, but improving your stamina and mental outlook. Ask your Doc about pulmonary rehabilitation. We have treadmills, recumbent bikes, upper body exercisers, a set of steps, and weights. There are nurses on duty to take your blood pressure and O2 levels so you don't overdue it. I've been going for 11 years and trust me, it helps a ton. It's also nice to meet others and find out what they have, (sometimes it's even PH !) and compare notes to see what they're doing, how they're coping. It's "free" therapy. I pay $6 a visit, and for your first month or so, when you're just starting and they're evaluating you, your insurance may pay for it. I'm in "maintenance" and insurance doesn't pay for that part. Please, please try this. It won't cure the "I can'ts" but it surely lessens them and empowers you to do the "I cans."
Brittany Foster
Hi Cheryl, thank you for the feedback! I like your positive message and I think that pulmonary rehab is so beneficial! I have never personally been, after one of my surgeries I went for cardiac rehab which was similar and really loved it. It's definitely worth it. I'm glad you are doing the maintenance one and I hope you see improvements each time. Have you registered for our pulmonary hypertension forums? If not, I'd love for you to join. http://pulmonaryhypertensionnews.com/forums/register/
Randy Reynolds
I have great empathy for Robert's case and for everyone else who is unable to do what we used to do. I find that I can use my writing to alleviate my focus on my illness. However, there are many days when I don't have to complete a task or go out and I tend to get very high anxiety. That of course makes the symptoms worse. Sharing with people is good but I keep expecting that something has to improve and that holds me back from accepting my restrictions.
I just pray that something will improve for you. PTSD is fed by what seems to be impossible problems to resolve. I try to change my mind set and that is a tough one as well. God bless us all.
Brittany Foster
Hi Robert,
I hope that the medications can give you a bit of relief. Do you have hobbies that you can enjoy when you aren't able to physically move as much? Have you talked with your doctor about trying an anti depressant or anti anxiety medication? I know that so many with PH are on medications for their mental health and it can even help improve concentration and focus. Maybe start out small and try reading blogs and something that you are really interested in. How about painting or drawing? Just throwing some suggestions around! Or even baking? They have good "no bake" reciped where you basically just buy ingredients and put it together without having to worry about actually baking it in an oven. I hope it gets better for you. Check out the PH forums. There are others who can help suggest things too! http://pulmonaryhypertensionnews.com/forums/register/
Randy Reynolds
I sent out a comment. Doesn't appear here for some reason. I already get PHA news and the discussion board. Basically I said that I have empathy for Robert's situation. When this illness strikes it does create PTSD of sorts. I struggle with anxiety about not being able to do what I used to do. I like to write and am in the middle of a story about a person who's career is ended by PAH and he finds another outlet that works. How one becomes positive in our condition is very difficult. I pray that you will find a way.
Marianne Hoppe
Hi Brittany... great column so positive and not always easy with HP. I just had a very nice surprise today, when I woke up it was fifty two degrees and seemed like zero humidity. I could not wait to get outside and walk with lots more ease and without my cane. Better days ahead with cooler weather ahead.
Brittany Foster
Hi Marianne,
Thank you for the kind words and for reading the column. I'm glad that the weather is changing and Fall is one of my favorite seasons because it is way easier to breathe ! I hope better days are ahead for you too! :)
Melainie
Robert,
I remember the beginning on my time with PAH it was overwhelming. At times I am still overwhelmed. Especially when I am remembering what I am not able to do. I was diagnosed 10 years ago and watched my health deteriorate to the point that I am on oxygen 24/7. It sucks, but it allows me to keep doing the things I can do.
Showering is a problem for me too. The movements that one makes to wash themselves and the humidity created by the warm water makes me want to stop showering altogether. I find it easier to shower with a shower chair and a handheld shower head. This way I have control of the water's path and I don't have to move my body to rinse off. Less energy expended in the tub, more energy for other things out of the tub.
I find the the shower chair is wonderful for the bathroom sink too. I can sit while I brush my teeth and take my meds.
If you haven't started using the electric riding carts in the stores, do. It makes all of the difference in the world. I felt silly the first few times, but now, I just enjoy getting around and being independent.
I hope things will get easier for you.
Marilyn J. Himelick
Question: I have IPAH and have some good days and a lot of bad days. For 3 days and nights now my upper body feels like it is on overdrive. Anxiety could be the problem but I thought anxiety lasted in short spurts. Whatever this is also makes it harder to breathe. It feels like my heart is racing, yet just checking it is 95 and oxygen 96. I am on 24 / 7 oxygen, Opsumit, and inhalers. Not a doctor and this may be a silly question: Could the feeling in my upper body (Chest) be coming from the Hypertension rate going up ? Thank you.