Are blebs deflating more than your lung?
If you’re in the recovery process from a surgery for a collapsed lung (Blebs Disease ) you might be unsure of what the future holds. You know for at least the immediate future you will have to make changes in the way you live your life and may even need to make some longer term changes. Or perhaps you have healed from your surgery and have realized you are left with chronic pain and will need to make more permanent changes in your life. The changes you must make as a result of bleb disease may feel like a major blow to your self-esteem. Below are some common ways people feel their self-esteem has been affected by this condition and what you can do to increase your self-esteem.
In the short run your level of independence will be decreased while you are healing from surgery. However even after you heal you may find yourself unable to reach your previous level of independence. Common tasks that you may need help with are heavy cleaning, moving furniture, taking out your trash, etc. Ask yourself how you feel when you need assistance for a task that was previously easy for you? You may find yourself needing to rely on others more. A few examples might be lifting a suitcase, carrying heavy grocery bags or going on a long walk with the dog. Do you feel ashamed, embarrassed, disappointed, angry, sad, shocked, etc? It is important to understand your emotional reaction to these situations and to understand that these reactions are normal. Give yourself permission to feel whatever way you feel about your loss of independence. You will likely need to grieve about your limitations to be ready to think about how you can do deal with these limitations. Once you feel ready, consider the following strategies to help you grieve this loss, come to a place of acceptance and reframe your independence.
Adjust your beliefs about needing help from others.
To feel good about yourself despite any limitations you are going to need to reframe your beliefs and ideas about needing help from others. Get a piece of paper and fold it in half, creating two columns. In column A write your current beliefs about yourself or other people who need help from others. For each statement reframe it more realistically and positively in column B. Use this sheet for a reality check and to help you adjust your beliefs about needing help from others. As new negative thoughts come up, add them to column A and reframe them in column B. Put the sheet somewhere you can see it so that you can access it easily when you are feeling negatively. See example below.
1. It’s pathetic for 20-something year old man to have to ask for help with the groceries.
2. I’m so needy.
3. I’m a burden to my friends and family.
1. It actually takes good judgement and courage to recognize that I need assistance rather than risk my health
2. No one is invincible. It’s OK to ask for help. And in the future, I can find ways to give back.
3. Some people enjoy the care-giving role. The act of giving gives them pleasure.
Be Creative to Maximize Your Independence.
With a little ingenuity and an open mind you may be surprised to find you can still do most things on your own. Create a list of all the tasks you wish you could do more independently. Under each task brainstorm ideas for ways you could engage in a task that would make you feel more independent, even if you cannot completely do it alone. Remember, be creative and open minded. Even if an idea seems wild, write it down. After you have generated your list, experiment with the possible solutions you have come up with. Remember, things may never be as they were before surgery, but you may be able to be more independent than you think if you change what the solutions look like. See example below.
Grocery shopping-the heavy bags seem to make my pain worse, always have to a friend or family member come with me…or I end up in such bad pain.
1. Do online grocery shopping. They deliver.
2. Go grocery shopping 3-4X/week. Might be more time consuming but I’d be able to carry what I need.
3. Drink water instead of juice or soda. Not only is it healthier but I don’t have to carry it home from the grocery store. I have an endless supply of water in my kitchen.
Laundry-by the end of the week the laundry is too heavy for me to drag downstairs and back upstairs when I’m done again. I end up in pain if I do this or I am reliant on someone’s schedule and goodwill to help me.
1. Get rid of the laundry bags. Place laundry directly in machine every night. Then just carry it upstairs in a smaller bag. Would take several trips but I could do it on my own.
2. Get laundry hook up for upstairs, no up and down the stairs. Easier to carry. More expensive and more permanent though.
3. Negotiate with partner or roommate. If he/she is responsible for the laundry, I’ll do the dishwasher and dusting.
Identify ways that you have and can give back to others.
The way you give back to others may or may not have changed. However if you can be cognizant of the ways you contribute positively to others’ lives you may feel more comfortable accepting help from others. Remember, no matter your physical limitations you can always be emotionally supportive of important people in your life. This is the most important part of any relationship. Try to be open-minded and adjust your expectations about the roles you can play in others lives. Perhaps you cannot help your partner carry the heavy grocery bags, but you could cook meals. Maybe you cannot chase the kids around all day but you can teach them how to read. The possibilities are endless. Fold a piece of paper in half. In column A write the relationship that you want to examine. In column B write the ways you have and can give to this person. See example below.
1. Be supportive and loving
2. Cook more dinners
3. Hire cleaners
4. Take that painting class with him that he has always wanted to take with me
5. Stay on top of the finances
If you find yourself limited in the physical activities you are able to do, you might feel betrayed by your body. Faced with these limitations you must not only deal with the loss of an activity you once enjoyed but the changes you will experience physically by being less active. This is especially difficult for many athletes who have bleb disease.
Maximizing what you can do physically.
You will feel better about your body, and healthier overall, if you engage in the physical activities you can do. Do the following things to maximize what you are able to do:
1. Modify the length of activity: Maybe you cannot run 6 miles/day anymore but you can run 20 minutes 3X/week. Look at the physical activities you used to engage in and modify the routine to something that is not painful for you at this time. Remember as you heal from surgery, or as blebs come and go, you will need to make additional changes. Likely as you heal you can do more, and if you find yourself experiencing a bleb leaking air, you may have to back off of the amount of physical activity you are engaging in.
2. Expand your options: Certain activities that you once enjoyed might just not work for you now due to pain. Be open minded. Even if in the past you hated working out in the gym because you felt like a caged rat, now that your body has changed, you might just find yourself developing new interests as you adjust to your new body and your new situation. There are a ton of activities at all different exertion levels you can try! Try swimming, yoga, biking, light weight lifting, walking, tai-chi, frisbee, kickball, etc. Find what works for you now. When trying a new physical activity make sure to give yourself a three to six month commitment, unless of course you experience pain related to your bleb disease. Giving yourself this time will allow you to evaluate if you actually enjoy this activity. For example, you are highly unlikely to get much out of one session of tai-chi. However after three to six months you will have learned the steps and may even see a change in your physical health. Realize that the more physical activities you do, the more flexibility you will have when you experience a leaking or troublesome bleb and must modify your activity level.
3. Always do something: Even if you are experiencing a rough period due to blebs, try to at least stretch or do a light walking a few times a week. Even this small amount of activity will increase the amount of control you have over your body. Learn how to manage your condition before you condition manages you.
Be good to your body!
Even if you cannot run a marathon, you should be treating your body well! This means eating healthy and taking vitamins. You are going to look better and feel better if you are eating right. Consider consulting with a dietician if you are struggling with eating healthy or want to learn about what foods could help you heal physically. Being good to your body also means having good hygiene. Again, you’re going to feel better about your body if you look good. In addition, be kind to yourself. Try not to get caught up in self-defeating thoughts about your body. Identify what you love about your body and focus on the positives.
Depending on the severity of your bleb disease, you may have had to make major life changes such as giving up your job as a consultant so that you can avoid flying, or you have to let go of your jet setting vacation lifestyle. You may need to suddenly develop a passion for the driving vacation. This can be difficult for people who love to travel or traveled as part of their job. People who like extreme sports such as scuba divers or bungee jumping often struggle with how to develop a new identify that they have respect for, especially if all of their social outlets were connected to their physical health. Athletes might also face an identity crisis if they cannot train at the level they need to be competitive in their sport. Thus depending on your career, hobbies and personality, having bleb disease or repeated collapsed lungs can feel like much more than a health crisis. Consider the following suggestions to help you deal with your identity crisis.
Give yourself time to grieve.
Depending on the severity of your condition you might really have to give up something very important to you. Give yourself permission to grieve this loss. It’s normal and okay to feel sad, angry or lost after hearing you have to give up a huge part of your identity. Grieving can take years. The good news is that the older you get, the more everyone else starts to develop their own health problems. Part of what makes bleb disease so disconcerting is that it can affect young people. And as a young person, most of your friends still have their health and that feeling of invisibility. In contrast, many people by their forties or fifties have had their own health issues. At this life phase there are more people who have ‘chosen’ a slower lifestyle. Give yourself the time to grieve. If you feel overwhelmed by your grief seeking out therapy may be useful for you to cope with what you are going through. Once you have grieved the loss of important parts of your identity, you may feel ready to explore new interests and experiences.
Determine what you can modify.
Be open to new ideas and realistic. Write down the parts of your identity that you feel you are losing in column A. In column B write down any possible ways you can still incorporate this into your identity. Remember you will have to modify your expectations. Maybe you cannot fly all over the world, but you can travel a lot by car or train. See example below.
1. I am a traveler and now I cannot fly
2. Scuba diving was my passion and now I cannot do that either
3. I was a college athlete, but I cannot handle the level of training
1. I can still travel via boat, car or train
2. Its not the same, but maybe I could snorkel. Maybe I could try something else like sea kayaking too.
3. I could try an intramural sport, or just continue to work out on my own OR I could finally take some art classes that I have never had time for before because of sports.
Remember…It is normal to experience a loss of self-esteem if a collapsed lung, multiple collapsed lungs, or problematic blebs require you to make significant changes to your life. You are letting go of the old you – and it’s most likely not by choice. Your job right now is to take the time to grieve the old you. The faster you can let go of what was, or could have been, the sooner you will be able to maximize what is, and what can be.