The purpose of this post is to discuss some of the strategies I am using to recover from chronic illness – a contradiction in terms at first glance, when one considers the fact that chronic illnesses tend not to get better with the passage of time.
It is my hope that some of these strategies might be helpful to someone else who has just gotten out of the hospital, or is trying to find a way to improve their lung disease through exercise. This post will also deal with some of the obstacles that I have faced since embarking on my recovery, how I am overcoming them and what my goals are in terms of how far I want to realistically go with my recovery.
In the end, I am hoping to encourage people with COPD not to lose hope, because the discouragement that comes with fighting for your every breath can weigh more heavily on ones shoulders than a barbell loaded with 1000 pounds of iron.
The Struggle
As anyone with chronic lung disease can tell you, you are either living with chronic lung disease or you are dying with it, but aside from an act of God, you are never without it. It’s presence is constantly making itself known and impacts every aspect of your day. Every decision you make that involves physical effort is planned out in advance. In your mind, you are perpetually weighing each activity in terms of “how will this make me feel? Can I do it? Will this hurt me or help me? Will it merely challenge me, or will I end up in trouble? Will I need oxygen or not? Could this cause me to have a heart attack or not.” etc. So you see, having damaged lungs is not like having ears that don’t work like they should, or eyes that might not function as needed. To be sure, blindness and deafness are disabilities, but you can live without ears and eyes. You cannot live without oxygen, and once your lungs have taken a hit that damages their ability to get oxygen into your body, you are all of the sudden thrust into a world where every breath you take can no longer be taken for granted. Indeed, for some people each day is a fight to survive to the next day. The question is whether or not something can be done about it, and I can tell you emphatically “Yes, something can be done about it!”. But it won’t be easy. It will take guts and determination, as well as a willingness to subject yourself to activities that will force you to adapt. I am doing it each day, and so can you.
My History
Prior to being hospitalized in January of 2007 for the very first time, I managed Cystic Fibrosis fairly well with strength training. It was not easy, but because I had started strength training at the early age of 14, I had managed to be largely in control of my illness.
From the age of 14, I worked out nearly every day without exception, for sixteen straight years. Think about that for a second. Here I had Cystic Fibrosis, and yet by the time I was 30, I had trained for 16 straight years, placing huge demands on my body that resulted in a truly world class fitness level and physique. I was strong, tough as nails and though I had some challenges from CF, there was no doubt that I was way ahead of the bell curve.
Ironically, this all began to change when I bought my first computer in 1993. I loved the computer so much, and building web sites became a hobby of mine. This hobby became an obsession, and before you know it I was spending far more time in front of the computer than I was exercising. My workouts were still intense, but I began to scale back the frequency of my sessions in favor of sitting in front of the computer, wasting tons of time in the process. Gradually, without my awareness, I was losing my edge and pretty soon CF began to make inroads into the state of wellness I had so carefully crafted and carved out for myself all those years. I was still ahead of the bell curve, but just not as much as I had previously been.
By 2000, my mom had gotten ill, and I moved home to care for her, with computer and weights in tow. I was able to set up a great home gym at her house, and my workouts were still good and intense, but even now, looking back on it, I was having trouble breathing from time to time. I started having more trouble between 2000-2004, but I was still very strong and workouts were good, so it was hard to know that I was losing ground to bad habits and a less active lifestyle thanks to my addiction to my computer.
To make a long story short, by 2007 I had lost my mother to cancer, become homeless do to a house fire and developed bacterial pneumonia while I as on the street. In March of that year I went into the hospital for what was to be the first of seven separate hospitalizations in 4 months, with two of them lasting 2 weeks or more. During that short span of time, I lost nearly 50 lbs of muscle and fat (mostly muscle), developed severely damaged lungs and nearly died several times. When I was released from the hospital in April of 2008, I weighed 123 lbs. (down from 165). I was not able to walk unassisted. I could not bath myself. I could not even wash a dish. Without a doubt those four months were the most challenging time of my 45 years on this planet (I was born in 1962). But the real struggle would be the recovery, which I happen to be in the middle of as I type this entry, almost a year after having been released from the hospital, for what I hope is the last time.
The Conundrum
Once I was out of the hospital, I quickly came to the realization that my life had changed. I could do…..nothing. I could barely get in and out of bed. Every step I took left me breathless. I was so physically weak, and my lungs so damaged, that I had to have people do my shopping for me, or if I managed to accompany them to the store I had to use the motorized scooters to get around. I had to lean on everything when I walked, and when I did walk I could not walk far. Yet, I knew beyond a shadow of a doubt that forcing myself to do the very things I found so difficult was my only ticket to a healthier body. This included my old, trusty friend – the workout.
The problem was that everything I did pushed me to the brink of collapse, and I began to dread – no, fear- physical activity. And a workout? Well, a workout, as much as I knew I needed to do it, could put me in the hospital or kill me if I was not careful or tried to do too much too soon. And even if I did use a slow and easy approach to exercise, activity still depleted my already diminished oxygen stores quickly, placing me at risk of cardiac arrest. In short, four months of pneumonia had reduced me to such an invalid-like state that the very thing I needed to do in order to recover could also kill me. Quite the conundrum.
And yet, as steep as the hill I was about to climb was, I knew I must climb it. So, the first thing I did was commit myself to challenging my mind and body enough to force an adaptive response that lead to improved strength and breathing without doing so much that I ended up killing myself in the process. This is good advice on any day for someone who is beginning a fitness program, but I was not just any person. I was a someone accustomed to training at a very high level of intensity who, all of the sudden, was not even capable of a single push-up. So this was not going to be an easy puzzle to solve.
The Strategy
I am a good self-starter, and I knew I could do some things on my own, but I also knew that I could not do everything I needed to do on my own. I would need some help. So here was the strategy I would employ:
- Walk each day, and each day walk a few steps farther than the day before.
- After a few days, or a few weeks, if I was able to carry some empty dumbbells in my hands when I walked, then I would carry them. I had these terrific Husky Handle Dumbbells from Ironmind Enterprises that would work splendidly. They weighed twelve pounds each, and once I was fit enough to carry them they would make walking a bit more difficult.
- At some point I would begin light calisthenics, such as push-ups and free-standing squats with just my body weight as resistance. The reps would be few at first, and I would gradually increase the reps, no matter how long it took me.
- With a few weeks of the above strategy under my belt, assuming I was still alive, I would need access to a gym, or so I thought. So, I began calling around to gyms, introducing myself, seeing if one of the gyms in my area might be able to get me a short term membership that I could afford. In fact, ACAC of Charlottesville stepped up to the plate and offered me a short term membership for no money at all. This would prove to be a huge blessing at first, but in time I would need to make some changes, as we shall see
My doctor approved of the above regimen. He is a big advocate of exercise. I am not sure if he thought I was going to make it or not. If he thought I was going to die and that the above strategy was pointless, he didn’t say so. He spoke as if he felt like I could make some recovery, be he didn’t say how much and I was afraid to ask. I didn’t want anyone, myself included, setting limitations on how much I would recover from my ordeal. So, I began in earnest.
The Results
When I began this strategy, my resting blood oxygen levels were around 89-90%, which is far below what I was accustom to experiencing. Before my decline, my blood oxygen levels were always around 97%. So this was new territory for me. With so little oxygen in my blood to begin with, I had very little wiggle room, and I soon discovered that I could not sustain activity for very long before I was forced to stop. Even if my oxygen levels had been acceptable, my depleted energy levels and muscle atrophy (I had shrunk from 165 pounds to 123 scant pounds at the hospital) meant that I just could not handle much stress at all.
As an aside, it is worth noting that when blood oxygen levels reach 87% or less you know it immediately. At that point, Dyspnea sets in. Your heart rate and blood pressure rise, you begin to panic and you are at risk for serious trouble. This is when the oxygen mask goes on at hospitals, so my doctors ordered some oxygen tanks for my apartment just in case I needed them. Little did I know that I would end up needing them, but at the time I was discouraged to have them sitting in my house. But I digress.
Before I even ventured outside the apartment for my first walk, I made sure that I was use to doing things around my one room apartment. Bathing, washing dishes, standing up and down from a chair, that sort of thing. This went on for 1-2 weeks. Then, I began to venture outside my apartment. I was only able to walk about 20 feet, and believe me I was discouraged, but at the same time I was also proud of myself. I could feel the sunlight on my face, I could small the spring air. It felt like freedom.
Each day I walked a bit further. Yes, I got out of breath. Yes, when I got back into my apartment I needed some oxygen. But each day I was able to go just a bit further, until I was able to walk about 100 yards down the block and back. This was a challenge, because it was downhill, which meant that the return trip would be uphill. I took it in small miniature chunks of about 20 yards each, stopping to catch my breath along the way. Eventually, I was able to grab my dumbbell handles and carry them with me. This increased the difficulty, but it made me gain strength and stamina.
With several weeks of walking, along with some calisthenics like push-ups tossed in, I was ready to think about the gym. I knew I needed access to gym equipment with weight stacks, for legs especially. The largest health club in the area, Atlantic Coast Athletic Club, donated four months to me. I really want to thank Atlantic Coast Athletic Club and Phil Wendel (the CEO) for their contribution to my recovery. The visits to that gym proved invaluable to my recovery.
The initial workouts at the gym were supervised. I needed to have someone with me at all times, just in case I passed out or worse. The workouts were far from impressive. I was the weakest person in the gym. 70 year old ladies were running circles around me. I was so skinny and frail. It was quite humbling, but more than humbling it was depressing. Not so much because I was the weakest person in the gym, but because of how much I had lost, and how far I had to go to get it back. In truth, I was in mourning. Still, I remained hopeful, and I hit the gym 3 days a week, almost without fail, save on days when I really was having trouble breathing.
As the weeks passed, I did get stronger and started gaining weight. Stamina improved, but very slowly. And as the summer heated up, the gym got hotter. This was a big club, and the strength area was on the upper floor where the heat seemed to collect, and it was rather difficult to breath at times. I have always liked a very chilly gym environment, but in a club this size it is hard to keep it very cool. So, I my workouts slowed down some, as I was simply not able to keep the brisk pace I had gradually developed over the weeks and months. Nevertheless, I enjoyed the gym.
In the end, the results spoke for themselves: In the four months I trained at Atlantic Coast Athletic Club body weight had increased by 20 pounds (from 123 – 143); my resting blood oxygen saturation had improved from 89% to app. 95%; blood pressure was on the low end, but healthy, I was able to dead squat and dead lift upwards of 200 pounds, whereas I was barely able to pick up a barbell when I first touched it in late September. Hardly world records, but definitely an improvement.
The Home Gym
Eventually, fall approached, and before you know it it was winter. Naturally, ACAC turned on the heat to keep their club comfortable. Sadly, this made my breathing even more challenging. I quietly made the decision to train at home. Gradually, I began to make fewer trips to the gym and using the wonderful tools I had in my apartment.
While training at a health club like Atlantic Coast Athletic Club has distinct advantages, training at home offers its own set of unique advantages. At home, I can be in complete control of the air quality. On the occasions that I need oxygen, I have it. I can control the music I listen to, or choose not to listen to music at all. I am not distracted by the activities of others around me. In short, I can give 100% focus to the task at hand.
As you can see in the photo on the left, I have slowly built a small arsenal of tools to use for my training. Each one of the items in that photo gets used every week, and to tell you the truth, I am making incredible gains in strength and stamina using what you see here, and i have plenty of room to do everything I need to do. All I need at this point are some Vulcan Racks and a good 45 pound barbell. However, for the moment what I have is working just fine
The picture on the right tells a more complete story.
In this photo you can see my oxygen tanks. That is liquid oxygen, and while I prefer air-mixed oxygen machines, they generate a lot of heat that ruins the air quality in my apartment, not to mention driving my electric bills up. So, liquid oxygen seemed to be the best way to go for now.
Also seen in the video is The Vest – a machine I now use to help my damaged lungs rid themselves of unwanted fluids. This device is very uncomfortable to use, because it forces me to cough a lot more than I normally would otherwise, but for now it appears to be an indispensable tool that is keeping me on track in terms of my recovery. I don’t like it, but I can say that without it I would be dead more than likely. I use it 3-4 times a day at present. The oxygen I am using less and less, praise God. I am hoping to eventually be free of the need for it at all. But for now it is nice to have on hand.
The Discouragement
At present, my biggest challenge next to the chronic illness I am battling is the discouragement that rips at my insides and tries to hold me down each day. I confess here and now that sometimes the discouragement wins. When that happens, I usually end up missing a workout. How it happens is pretty simple.
I wake up and feel pretty good. After about an hour, I begin to cough some. An hour later, and I am coughing more. Then, I decide to get in bed and strap on The Vest for about 30 minutes. I cough more, sometimes violently. Sometimes I vomit. Sometimes I nearly pass out, but after the session on The Vest is done I feel better. I breath great. Yet, I am tired and depressed. I am worn out. I begin to ask myself if I can do this for another 10 years. I begin to wonder what happens to me in another year, or another two years? Will I be hospitalized again? If so, will I die? I begin to despair. Then I pray some. I talk to God about my fears. I realize that He will heal me. The only question is when?
Before you know it, it is 1 PM in the afternoon, and I have just spent half the day fighting to live. I have the rest of the day to gird my loins for battle, and get ready to workout. It takes some mental preparation and some self-help pep talk to actually begin the workout. I often look at videos of strongmen in action, and this jazzes me. Or I pray some more. I tell myself that I must workout, no matter what. And you know what? 95% of the time I rise up out of my computer chair and have an awesome workout. But, 5% of the time I don’t. 5% of the time the day passes and I never regain my composure. Nighttime comes and I begin to think about rest and relaxation.
The trick is to make certain that the 5% does not morph into 10%, or 15%. Rather, I want that 5% to shrink down to 1%, or better yet 0%, so that I am working out each and every day because I can! That is the plan. That is my goal. That can be your goal if you choose it to be.
Conclusion
I would bet that right now there are a few otherwise physically healthy people reading this entry who are bellyaching about how tough their lives are, how tough it is to be fat, or skinny, or to be a busy parent with no spare time, or poor, or whatever. You sit in your computer chair day after day, wondering why no one seems to understand just how tough your life is. You are out of shape and you tell yourself that it is not your fault. “If only people could understand my predicament”, you say, “then they would sympathize with my plight.” Every day you are mourning your situation saying, “Woe is me because of this situation, and woe is me because of that situation.”
Let me lay the smack down on you.
If for all intents and purposes you are physically healthy – with lungs that work, a healthy heart that beats, and no preexisting health issues whatsoever – then you need to start demanding more of yourself. Plain and simple.
Stop your whining and moaning, get off your ass, and start taking charge of your life! You have no excuse for your slothfulness, and you will get no sympathy from me. You want sympathy? Go sit on Richard Simmons soft lap and let him tell you how special you are, but don’t bother looking for sympathy here in this blog, cuz you won’t find it.
For everyone else reading this post who is struggling with a chronic, life threatening illness – you have my deepest respect for just taking the time to read this entry. You have my heartfelt understanding and sympathy. However, I feel I must say this: At all cost, you must try to find a way to do a little exercise each day, or as often as you can each week. Please don’t do it on your own. You will need help. Work with your doctor. Seek out a gym that would be willing to offer you a temporary membership and trainer support for a reduced price. Do not be afraid to reach out and ask for guidance. Set some small fitness goals for yourself, and determine in your mind that you will achieve those goals. Push yourself a little bit each day, taking baby steps, building your strength and stamina one brick at a time.
When discouragement comes, fight it with all your might. If you occasionally lose to discouragement, then be quick to forgive yourself. Chronic illness is not imaginary, and the physical and emotional challenges that come with it are a formidable opponent. Remember that tomorrow is a new day. Resolve to start over. Never give up the fight to get better. Never quit trying until you absolutely must. Keep praying. Keep talking to God. Let Him be part of your recovery. Let Him guide you in this journey back from the brink.
If God can help me make progress, He can help you. If God can motivate me, He can motivate you.
Godspeed.
TC
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Hey Tim,
You are amazing, what courage you have. You are right though about how people out there complain when they have everything, I know, I do it as well.
Like yours, my faith is also so strong which has kept me going. I set aside 3 times a day where I sit in my special room and talk to God and meditate, this is a wonderful time for me.
I am not sick though, I have wonderful health and a strong body, which I give thanks for. I am being blessed.
Feel free to write to me if you wish or need someone to talk to. May God bless you as well in that you have a complete recovery. I will pray for you as well.
Kind regards,
Brian
Brian, thanks for the encouraging words, I need them. Had some setbacks this past month and need your prayers. I want to beat this thing. My doctors tell me I can’t and to accept the fact that I have no power over what is happening to me.
Cannot tell you how that made me feel to hear that.
Timothy
Hi Tim,
I must echo Brian’s thoughts – you are a real inspiration! Your post means so much to me and has come at a very opportune time. When I was first diagnosed with COPD about 5 years ago, I attended pulmonary rehab where I learnt the importance of exercise in coping with and managing the disease. I exercised by walking for 30 minutes or longer on 4 or 5 days each week and, while hills always had their challenges for me, my exercise tolerance and hence my lifestyle improved remarkably. For several years exercise formed a large part of my daily schedule and I became accustomed to feeling fairly well in control of my COPD because of that.
Over the last 9 months or so, I found myself (like you) becoming happier sitting in front of a computer than I was exercising and, within a very short period of time, regular exercise became a thing of the past. Lately – and unsurprisingly – I found myself becoming so short of breath that I had difficulty negotiating the fourteen steps up to my front door. I was considering contacting my respiratory specialist to find out why my condition had deteriorated to such a marked degree from where I was at a mere 9 months ago; and then I came across your post!
The article has been a revelation to me, and has come at exactly the right time! I now know exactly why my condition has deteriorated to such a degree, and I thank you very sincerely for reminding me of how important exercise is in managing this disease. I’ll be making sure that from now on walking and exercise again become an integral part of my lifestyle, and I draw great support from the courage and commitment you’ve shown in facing your own demons.
Thanks once again for your inspiration. You are a true champion in every sense of the word!
Kindest regards,
Roger
Roger, if you think this post was helpful to you, just imagine what your comment did for my spirits!!! I really needed this. Your words are so encouraging to me and likewise came at a very good time.
Thank you so much!!!
Shalom
Timothy
Tim, I don’t know where you are now…both physically (as in “home”) or physically (as in “copd”) but has your doctor ever spoken with you regarding either a transplant or lung volume reduction surgery? There IS hope for many of us with this disease via those two avenues and if nothing else, please get tested for the LVRS to see if you qualify.
Prayers,
PennyPA
Penny thanks. Yes, the docs have talked about it, but so far I have refused. If I die I die
I do not wish to go through that, plus the lifetime of immunosuppressants. Nope. Its my lungs or bust 
Tim, I was really inspired by your blog. I was just diagnosed with severe COPD last week and I have run through a total spectrum of feelings this past week. The one thing that I was sure of though is that exercise would help. Your blog gives me great hope and I found it at the perfect time for me.
Thank you and I wish you all the best.
TerriT
Terri, welcome to my site. Thank you for coming by. I will resume blogging very soon, as the Lord is motivating me to begin adding new material. I just needed to take a break for a while. Obviously I kept the blog in force just for folks like you. I would encourage you to include the Lord in your journey. God has something for each of us and I am totally convinced that healing is ours to be had. The healing journey is a mystery and so far I continue to deal with the challenges each and every day the best I can, but I have not lost hope that there is a brighter day ahead and that you and I could experience our own miracles, turn a corner, and suddenly find ourselves feeling better. Do not let this diagnosis scare you. Just scoot over as close to the Cross as you can get, commit your ways to Him and He will show you what to do. Please stay in touch and keep me posted. Timothy
Tim, great inspirational thoughts. I’ve lived pretty well for 15 years with moderate to severe COPD, using the same philosophy on exercise. My thought is that I have to show my lungs what I expect of them every day so they don’t forget.
Welcome! Yeah we are all taking a journey that most Angels would be afraid to take. God bless each of us. I hold out for a better day and I bang the hell out of my body literally as much as I am able. I keep my airways as clean as I can, even though it means sacrificing most of my life to the alter of survival, all in the name if victory if it is possible. With God’s guidance and blessing I intend to find out as much as I can along the way. Keep us posted of your progress. More posts to come soon…especially on dead lifts as soon as I get a better understanding for what they may be doing for my recovery.
Cheers….and stay tuned….
Timothy
Great Site and even greater story. I have COPD and refuse to give in. Last year I was walking and carrying 18holes of golf. This year I think I got a cold and had a set back. My blood oxygen is at about 93-94. I think we have found the answer in god.
Ralph
Hi Ralph. I am sorry I did not get back to you right away.
I do believe our answer is in The Father, and no other. God made our bodies so incredibly resilient. I just believe that if we intensely seek His Face and look for Wisdom, God can guide us back to health. Diet, exercise and an indomitable Spirit are what is necessary to battle back. If we are not able to succeed, then that just means God has other plans for us, but as long as we are here and have one last breath in our lungs, I say NEVER give up the fight and never stop praying. Thank you for your comment! Timothy
Ralph, for some reason your comment was not approved after you sent it. I am sorry for the delay. I agree, I do believe the answer is in God…and the Atonement. The whole idea of miraculous healing is a mystery to me. This much I know – God heals. Keep working hard. Do not give up!!!!!
found your webpage and was inspired… I was diagnosed with stage 4 lung cancer and empysema Nov 30.. I just very suddenly lost my air..and every test they did was more bad news and more cancer growing.. walking up 8 stairs sometimes is a chore.. I try to stay semi-active but I know what I am doing is not enough I just have to learn to pace it and how to deal with the panic of not being able to breathe.. I am on oxy 24/7.. your story is inspiring and I am getting off my butt today to try and get back some of my life and independance..
I am so sorry for your diagnosis. I am right there with you my friend. Do your best to keep swinging that bat every day. Some days will be harder than others, but let’s hold each other accountable, because on those hard days you will need to do SOMETHING….even if it is just a little bit, to say to yourself, “I did it!”.
Of course, on your better days you can swing that bat with a bit more enthusiasm and vigor, and that matters too! But it’s the days when you are not feeling so good that you need to try to do something, anything, to keep your spirits up. Don’t quit!
Tim,
I was so glad that I found your website and that you are ok. I would like to speak with you about your expereince. Please send me an e-mail if you have the time and inclination.
Very well written story of determination.
Anat
Thank you so much for posting this and being so honest and frank. You have helped me not only push myself but look after my clients better. I am a SW that makes home visits for very fragile people, but I have never seen a vest or liquid oxygen before. I am so amazed at your courage and your faith. So many of us others give up at the least little thing, on God and ourselves and that is wrong. If a healthy person can’t do what you do, there is absolutely no excuse and if we don’t do it for ourselves, we should do all we can in honor of fantastic folks like you. Keep posting!
This means so much! Thank you so much!