Chronic Pain and Illness: Part 1

Part 1: Living with a Chronic Illness or Pain.

If you know any one that has a chronic illness or suffers from chronic pain, it can be hard to come up with the “right” thing to say or do. The gap for those of us who deal with these issues and the rest of the “healthy” world can seem insurmountable. I hope that by the time you have finished reading these words, you are better equipped to love the person in your life who suffers from a never-ending battle simply to survive.

First, you need a glimpse into the world of chronic pain. You may be asking what qualifies me to give you this peek into the world of pain. Well let me tell you a bit about my life with constant pain. When I was 16, I blew out my knee playing volleyball. I have had 5, highly invasive, knee surgeries in the past 12 years where the doctors have performed nearly 20 different procedures. This has left me with severe arthritis and scar tissue growth, which affords me constant pain, day in and day out.  I also have an autoimmune disorder, blood disorder, suffer from sever migraines, have second and third degree chemical burns in my lungs, and have an inoperable cyst in my brain. I broke more bones than I care to count before the doctors thought to and subsequently did diagnose me with Osteogenesis Imperfecta – Type 1 (OI) or in layman’s terms – brittle bones. I have a severe case of Polycystic Ovarian Syndrome, or PCOS, which makes being a woman the most agonizing part of my life. To top it all off, I am also allergic to plastic, specifically things that are labeled s non-latex. So yeah, pain and I are not strangers.

I really want you to understand what living in constant pain is like, so here is a practical look at my “usual” day. My alarm goes off nearly 45 minutes before I actually need to get up for work. Today that is a good thing. You see it’s a bad day. My knee joint is nearly frozen from a night of not moving it. The pain cant be described as anything but white hot. I never knew what that phrase meant until that first time fire shot through my joint, literally bringing me to my knees. The 10 minutes that follow often leave me in tears. Bend and straighten. Bend and straighten. Over and over until I feel like I can try to stand without collapsing.

This allows me to make my way to the sink where I proceed to take
My daily pills 
 the hoard of medications that the doctors tell me keep me alive. The pain meds help keep me moving, the blood thinners to keep me from having a stroke or throwing a clot that will end my life, migraine meds that basically make me a zombie but are worth it for the prevention of those day stopping events, there are the daily inhaler and pulmonary drugs to keep my lungs functioning, and the hormones and other pills to deal with the PCOS.  Then I take the five pills that counteract the side effects from the aforementioned medications. Benadryl for the hives and itching that come from basically being allergic to this whole plastic world, nausea medication so I can eat, pills to keep from gaining massive amounts of weight, anti-depressants to counter the lows, and pills to help with the swelling.  Some I take before I eat, some while I eat, and some up to 2 hours after I eat. Some of them can’t be taken together, some have to be taken together, and some it doesn’t matter. There are a few that I can't drive with, and some that make it possible for me to drive. Don’t worry if you’re confused, I get confused too. This is why I keep a detailed journal of my meds to make sure I can keep them all straight. 

Now that the I am all full of chemicals, it’s time to get ready for work. The first thing I choose is what shoes I am going to wear. This may sound backwards, but with a knee injury, shoes are the most important part of my dress. If my knee hurts in the front, then flats are not a good idea. I would choose a pair of cowboy boots with a small heal to counteract this pain. If my knee hurts on the side, I need a pair of shoes that are flat. If I know that I am going to be on uneven ground or any kind of unstable footing, its imperative that I have a good tread on the bottom, like a hiking boot. Once this decision is made, I can finally pick out the rest.

On any given day, things like how loose or tight an article of clothing is, or how long or short it is, where your boots go up to on your leg, and many other things effect your choice. For example, if my pant legs are too tight it can hurt a swollen knee, but if my pant legs are too loose they bunch under my knee brace and cause sores. If my shirt is too short it can ride up when I walk with crutches and show parts of me best kept hidden, while if my pants are too long, I can trip and fall. If my boots come up too high on my leg it may affect the way my knee brace fits, but if they slide off real easily then they can cause me to trip and fall. All of these are things I have to think about every time I get dressed. Man, I’m exhausted, and all I’ve done is get up, take some pills and get dressed. Now I have to get breakfast, pack a lunch, drive to work, and do all this before I’m late.

I love having a job that affords me the ability to sit for a majority of the day. However, it also affords me the challenge of walking up a flight of stairs on crutches – no elevator – leaving me breathless and exhausted when I reach the top. Because of my lung injury, I experience the “out of breath burn” for sometimes as long as an hour before I finally feel like I can catch a full, satisfying breath. This means dizziness, blurry vision, and even sometime panic that I can’t catch my breath.  On any given day, there are countless hazards that can ruin my day or even make it impossible for me to remain at work. Florescent lights can cause migraines or cleaning chemicals can cause burning in my lungs; the list goes on. If I am lucky, I make it through the day without anything increasing my always-present pain.

By the end of the work day, I am beat. Constant pain and the threat of new problems arising is enough to put an elephant down. Most nights, I come home, make dinner, and crash in bed by 7:30pm. I read or watch a movie and its lights out by 9pm. This is not because I am a morning person; in fact, I am a serious night owl when my pain levels are low. I simply have nothing left in me to stay up any later.

Why are you telling us all this? Well, I need you to understand what a GOOD day for me looks like. When you add in events in the evening, multiple issues arising at one time, or higher than “normal” pain levels my day can go down the drain very quickly. So when you ask me if I want to go see a movie with you after work, go to the bar and get a drink, or even just come over and hang out you have to understand that I may not have anything in me to make that happen.

A new piece of my puzzle right now is the “take it easy this weekend” directive. Basically, my doctor is saying “don’t do anything, go anywhere, or walk at all.” This may sound like a great time to all of you. My doctor is telling me to take time off, stay in bed, watch TV, and relax. I have to admit the first weekend was great. I caught up on my shows, read a book or two, enjoyed the silence, and caught up on all the sleep I missed in the weeks prior. The problem came the next week, and then weeks after that.

Doing nothing is fun until its not. There is only so much TV one person can watch, only so much reading your eyes and brain can take in, and silence will make you go crazy in a short amount of time. I find myself, after 6 months of “easy weekends,” having read 214 full-length books and having watch every season of 10 different primetime shows (1,000+ episodes). I have spent close to 60 days in a silent apartment alone in my bed; simply because I am not allowed to go out. “But you have a wheelchair, you don’t have to walk.” That is true, I do have a wheelchair, and yes, I wouldn’t have to walk. I still have to get up, get dressed, crutch to the car, manhandle the wheelchair out of the bed of my truck and have enough energy left to wheel myself around in it. I also have to think about what the layout of the place I am going is. Is the store or location wheelchair friendly, or is it going to be a tight fit?   Some days I do manage to make all these things happen. I will go to the antique shop and look around, or cruise the mall and window shop. These are good days.

So why not come over and we can watch a movie, or have a group of friends get together? Sounds good, but I have a few questions. What is the layout of your house? Is it wheelchair or crutch friendly? Do you have large animals that will trip me or knock me over? Are there steps I have to navigate? Will I have a place to sit if there are many people over, or will I have to navigate around people and have a potential to fall or be knocked over? If you live in an apartment, what floor is it on? Are we eating at a table with the food in front of us, or will I need to walk through a buffet?  Depending on your answer to these questions, I may or may not be able to attend your event. It’s not that I don’t want to be there, it’s simply that there is just too much for me to overcome.

So, basically, the life of the chronically ill or in pain boils down to this: is the reward worth the cost? Do I really need to go to the bathroom badly enough to get up? Am I really that hungry, or can I wait a little while longer? Do I really need to clean the house now, or can it wait? If I don’t go to that event, will I still have friends?

Now, what I have taken you through is simply the practical side of my life. In my next post, I will show you the emotional toll that chronic pain has had on my life. I hope that this glimpse has increased your understanding, if only a little, of the physical struggles that your friends and family have with chronic medical issues.