by Heather Grace
Being in constant, severe pain while trying to keep a brave face is hard. Sometimes, it feels like Mission Impossible. The difficulty is multiplied exponentially when you are expected to perform as you normally do, throughout your daily routine. The big question is: When your pain is at its worst and you are forced to work your regular 40+ hour work week, how do you cope?
My Story
Coping isn't easy. Unless you have resources to help you survive, you just sort of muddle through. I've been there, on auto-pilot just trying to make it from one day to the next. I suffered in silence (well, mostly in silence), working in pain from late 1999 through July, 2004 when I was unceremoniously laid off.
Despite excruciating headaches and the pain that raged from my spine to my extremities, I did my best at work, as I always did. Because I was my usual loyal self, I didn't want to let anyone down. I didn't want to disappoint anyone or appear weak. Being in a male-dominated field increased the pressure I put on myself. And when I was injured, I reasoned to myself as well as to others that sitting home wasn't going to change my condition. Even with the pain, I continued to be productive.
When you are trying to keep it together and the pressure gets less and less tolerable, how do you know when to say 'when?' It's just not easy to know when to throw in the towel, even when working becomes completely overwhelming.
Admittedly, part of the reason I continued to work was purely out of fear. I didn't know how I was going to survive without a job. The pressure only increased when I was awaiting two surgeries: a second nerve surgery on my arm and surgery on the severely bulging disc in my upper spine. As soon as I found out, I told my boss. Big mistake.
It became obvious I was being looked at closely by upper management. We had recently been bought by a large multinational conglomerate. Gone was the family atmosphere that I had become accustomed to. Suddenly, there was an intense amount of pressure on me. I was accused of things I didn't do, and didn't even get an apology when the truth came out! It seemed they were waiting with bated breath for me to fail, even as I continued giving them my blood, sweat and tears. In the end, it didn't matter. They let me go, anyway.
The day I was laid off seemed like the worst day of my life. How would I survive? Pay my way? Because of the pain and the uncertainty that came with it, the last few years of my life had already been a roller-coaster.
The pain was bad enough--not only was it constant, but it seemed to be getting more intense. My emotions were so near the surface these days, crying came far too easily. This only increased when I realized everything I owned was probably going to have to be given up. It's amazing how attached I had become to having my own home, to having nice things. At the same time, I would've gladly given up everything if I could just be whole again. A big part of me wished, hoped, prayed...wanted an answer. A miracle. The cure.
But, there wasn't one.
Finally, in early 2007, I found a doctor that helped me see my future. I had thought for so long that I didn't have one. 'Pain management' never sounded good to me, but soon, I was living it
It actually felt good to be able to manage my pain. I spent each day trying to minimize activities that hurt, and maximize things that bring me any degree of happiness. Laughter is a serious gift. Even smiles are! Being able to go back to work has been hard, but I am thankful every day that I am capable of doing so. It still amazes me--I had been so certain I would never again be able to work!
Yes, it hurts. Yes, it is work just to keep my pain somewhat in check. I use amino acids, vitamins and supplements of all kinds, because they work!
In addition, I've learned to monitor my body and accept my limitations. I watch my blood pressure and pulse, any numbness or other nerve issues. I know when to say when. I know my body better than I ever did before. And, it's a joy! Being productive; doing something other than sitting/laying around all day--that is a true gift. I have recently realized that working full-time is no longer an option. This is something I have had to wrestle with for SEVERAL years in order to accept it. However, I am finding ways to keep active despite the challenges I face.
So, how can YOU make it work? There are many tools that you can use -- things that I have tried and have found helpful:
#1: Slow and Steady
Try to give yourself plenty of time to do things that make your daily routine easier. If you work outside the home, be sure to plan your day wisely. If you are less rushed, there is less reason to add stress to your day unnecessarily.
For me, I find it very important to get up, then give myself time to relax in my favorite chair and plan out my day. I also use that time to take care of the things that need to get done at home. As I sit there, I go over what I need to accomplish before that day, where I need to go, what I will wear, what I will take with me, etc. Once I have gotten things all planned out, I act.
Sometimes, when I am extra-stressed or maybe even over-tired, I spend that planning time in bed, making sure I press the 'snooze' button, as I lay there and plan, think, and maybe even drift back to sleep for a few more minutes. It's a relaxing way to start the day, and something I have come to rely on, in order to make it work.
#2. Pain Management
Managing the pain is my ever-present goal. For me, while I am planning out my day, I sometimes start to feel pain before it is time for my morning meds. So, I may find it necessary to take something for 'break-through pain' (BTP).
Often, it is one of my prescription meds, combined with two non-prescription meds: ibuprofen and Excedrin, as well as amino acids like Taurine and GABA. Combining the prescription medication with these over-the-counter items allow the medication to work better. (If you read the handbook on finding a good pain doctor, you can learn more about this option, called a "potentiator.")
Focusing on pain management throughout your day will help ensure a much easier experience at your job. It might take time to find the perfect regimen for you, but I promise, when you do, it will feel like a true miracle!
#3. Eating Right: Protein and Fiber are Required
Planning out proper meals is vitally important to anyone with chronic or intractable pain. In addition to a morning meal with lots of protein and a decent amount of fiber, you need to ensure high protein snacks are available, whether you are at home, on the job, or somewhere on-the-go.
I always make sure I take my morning meds, then ensure I have my lunch as well as several snacks with me if I will be away from hom. Each of my meals and snacks (as often as possible) has an excellent balance of protein and fiber, along with other ingredients.
Pain patients need lots of protein in order to reduce pain naturally. (Learn more about this in the handbook referenced above, as well as the Intractable Pain Patient's handbook.)
You will also find, that most opioid-based pain relievers have a constipating effect. If you don't eat lots of fiber, believe me, you'll regret it later. Fresh fruit and vegetables are very good for you, when possible. Try an apple or perhaps some broccoli dipped in low-fat ranch dressing. Also, an easier snack is dried fruit and nuts (aka trail mix) and/or, certain energy bars, when it comes to fiber AND protein. Check your labels!
In the summer months, I often try to start the day with a protein shake, complete with some nice frozen berries and other seasonal fruit (tasty and fiber-rich!). A cold smoothie-like shake, with soy or whey protein powder (my fave is vanilla whey protein by Body Fortress--1/2 scoop is 13 grams of protein), makes for an excellent breakfast drink! Use your choice of regular milk/soy milk, water, yogurt or any combo of those, to your desired smoothie consistency.
Want to have another smoothie later in the day? Try freezing them. Then, put one in the fridge in the AM to use around lunchtime. Or, try a frozen alternative! If you use lots yogurt in your smoothies, they are actually not too frozen to eat like a freezer-based treat. But unlike your typical frozen yogurt or sorbet, you have a dessert packed with protein and fiber! YYUUUUMMM!
#4: Coping with a Busy and/or Stressful Day - Your Arsenal of Options
Today's world is so busy, even for people in pain. The world doesn't stop turning when you are having a hard day!
On days when I am either too busy to take care of myself properly, or on days when I am rushing all over the place, doing lots of moving, it's important to have an arsenal of items to help reduce the incidence of pain.
In addition to ensuring you have your meds with you (I've forgotten them before and am forced to go back and get them, ugh!) at ALL TIMES, make sure your fave pain relief items are at your disposal. ThePainStore.com has lots of great topical pain relief options.
I have had wonderful success with pain sprays, which are now my absolute favorite choice. Not only does the smell dissipate quickly, there is less risk of any staining or mess to your clothing. Additionally, it's INSTANT relief to tense muscles. Yes! Try this: take your Biofreeze, StoPain Spray or My Omega and put a small amount in a travel-size spray bottle. Then pack it with your regular work stuff. It's EXCELLENT!
What else is good for the pain? I like Tiger Balm and most of the OTC pain patches, such as Salon Pas and Tiger Balm's patches. They are great when you have pain in a specific area... the patches/gels/sprays go to work and relieve pain over a period of time. Definitely makes the work day easier.
#5: Focus on Why It's a Good Day--Today!
What else can be done? A huge part of coping is also just letting go of the negativity around you. Don't get caught up in the way life used to be, or in focusing on the bad things that have happened. Let go of all of that, and focus on the good in your life: right now, today. Be positive and live in the now--it makes dealing with the rough days that much easier!
Believe me, I know how hard it can be... Yes, I used to have X, Y, or Z. But, I can say with conviction that I didn't appreciate those things as much as I should have. Now, I can appreciate the little things in life that I truly never even noticed before. The past should stay in the past, where it belongs, as much as possible.
I also control any unnecessary negativity, preventing it from invading my daily life. For instance, I don't keep up with the local or national news, because I know it will only try to zero in on some invented reality--a new pseudo-crisis that I don't want to know about. Gangs, drugs, illness, poverty... yes, I know they exist and I am sad that they do. But, the way the media can put this hyper-focus on the BAD things that are going on isn't good for anyone! I focus on what is going on in MY reality, MY life.
The hardship going on in other places, to other people, is really not a positive way to spend my time. Thinking of things like this that trigger negativity in you. Get rid of those things. You don't need them!
Maybe the nightly news or CNN.com are just too much for you these days. Skip them. You are in control of your world.
You decide what images come into you world and if you're like me, you choose to watch funny movies, inspiring true stories, creative unique independent films, etc. I am in control of my life in a way I never was before, and that is how I cope. I know what I need and what is best, and I try to live each day keeping my focus on the here and now--on MY here and now.
There's no reason you can't do that, too. You'll never realize how depressing the news is until you free yourself from it! It's truly liberating and makes coping with the realities of YOUR life that much easier. And, a lot can be said for comic relief. Yes, pain is a SERIOUS condition. But, watching a good comedy--one that makes you really laugh--goes a long way in keeping you thinking positively!
#6 Find Meaning, Because Work Doesn't Have to be a 4-Letter Word!
Let's face it, work can be a real pain in the rear! Not every day is going to be easy, or fun. Many times, you will wish you were anywhere but there. (Even before you had pain, chances are, you felt this way!)
So, what can you do to make your work day more enjoyable? Do something you enjoy doing! Work at a company you believe in, or work with people you like being around. It will do wonders for your pain if you can at least have some fun while you're at work. I have been trying my best to do something I believe in, with my whole heart and soul.
Launching ThePainStore.com has been very meaningful to me, because it allows me to help others manage their pain. I also spend time assisting my favorite doctor in his office, with patients, assisting in both front and back office procedures. I file, copy, make phone calls, gather charts, ensure we have copies of test results, put together special pain creams made to the doctor's specs... whatever is needed for the patients that day.
It makes me genuine happy to help people--especially new patients that were once like me. In pain, scared, not sure they could ever feel 'normal' again. Working in that office, knowing the good that is done there, it brings me incredible joy.
So, think long and hard and make it a goal to find the right place for you... What can you do, that has meaning for you?
And, I know what you might be thinking... Now is not exactly the best time to be changing jobs, so if you have something secure, why not find a way to look at it differently?
I once heard the story of a gentleman who worked in the Maintenance Department at NASA. He essentially swept floors--keeping the place spotless for 25 years. Whenever someone would ask him what he did, he would say proudly, "I help Astronauts in the Space Program." He could've just as easily said, "I am 'just' a Janitor," but because he had a healthy, positive perspective, what he did had meaning for him. Even if he never took flight himself, he was a proud member of the team that made it happen.
What can you do to put a healthy spin on your perspective?
#7 Volunteerism - Meaningful Work for Others Also Helps You
Many employers are working with charitable organizations these days. It not only boosts employee morale, but it provides a nice tax write-off for the organization as well.
Even if your company isn't doing so now, find ways to incorporate charity into what you already do. Is there extra of your product that could be donated? Is there a service you might be able to provide to charitable groups? Almost every company has old or outdated equipment, such as computers, fax machines, cell phones, etc, that may be donated to a charity instead of being disposed of. Anything that is still has a useful life can be transformed from 'waste' to a donation. By integrating volunteerism into a company, it can be beneficial on many levels, and most companies are grateful for the tax incentives!
Even if volunteerism through your employer isn't an option, it might be an option to consider in your off time. If you have the ability to help others, it brightens your day and somehow, you don't notice the pain as much.
For those who can no longer work, volunteerism can bolster your self-esteem while you help someone less fortunate. No matter your circumstance, there are always those who have things harder, who need help that you can offer.
Seek out people you can help, and get busy! :) Even if it's about sharing your support over the phone or Internet, you CAN and WILL make a difference, in a way that works for YOU!
#8 Just Getting Back to Work? Where To Begin...
Is there a specific 501c3 government-approved nonprofit group that you admire? Maybe they have a need for volunteer assistance, or even part-time help that pays you a little something.
If you've been in so much pain thus far that you haven't been able to work, consider starting back at a nonprofit. There are lots of nonprofit jobs out there, just 'Google' it, and find one that suits you. It's a good place to start if you're not sure what you want to do.
If you are doing something you are proud of, it makes you feel good, while helping others. And, the best part is the positive feeling you get--even in spite of whatever else you may be dealing with. I have always found things easier to do if they have meaning for me. As they say, "Do what you love and you will never 'work' a day in your life."
I now live it, so I know it is true. I don't think of it as a job, but as an opportunity--to help others while I continue to reinforce what works for me. Not every day is easy, but the positive aspects definitely outweigh the pain.
And, since I would be in pain no matter what I do, I might as well do something that makes me feel good in other ways, right?
Give it a try, and you'll feel it too.
#9 Share Your Story - Make Others Understand
There is nothing worse in life than feeling alone and misunderstood. In order to have a decent experience at work, share your story with the people you know well and trust on the job.
Let them know what you are going through, the emotions involved, why it is so hard. Tell them how it is different than a regular old 'boo-boo' -- print out information on your diagnosis from a trusted resource, if need be.
Not only will they be understanding, they can offer you support and maybe even some advice. They will also feel better about stepping in if you have to take a day off, or are having a tough day and need a break. Keeping it all inside may seem like the best thing to do, especially in jobs where gossip is rampant, but if you have people on your side, that kind of thing won't matter so much, will it?
And, as hard as it may be, it's definitely a good idea to work with your doctor on what to tell HR. I would recommend having your physician explain your condition in writing. Then, meet with the people you need to at work, clarifying with HR/your boss how your condition impacts you, that it is a disability, etc. That way it is on record, in case you need time off or certain accommodations. All of this helps protect you, under the law.
Had I not been so afraid to tell someone in HR about what was going on, perhaps I wouldn't have dealt with so much obvious discrimination by upper management at my job. As illegal as it is, believe me, it happens more often than you would think. Protect yourself!
#10 Never Give Up!
I cannot stress this enough... Never give up. I think that's the most important thing I can tell anyone who is dealing with pain and having a very hard time with it. You may not have very decent pain management yet. You may be going through periods of anxiety, pain, anger, depression...the feeling of hopelessness that tends to coincide with your life being turned upside down.
But I promise you, inner strength is what will get you through this. Find that inner strength, that resolve, the tenacity that's helped you deal with your pain thus far. Read everything you can get your hands on, find out what works for others. Use your common sense along with good old-fashioned 'trial and error' to come up with the best possible protocol for you. Working with a good doctor, of course, will make this easier.
New options are coming available all the time. There are pharmaceuticals in development, centuries old options that are being studied/used/understood, items being imported from other countries and utilized, and even new tests to understand the genetics behind severe pain and thus, in time, what can be done about it.
I found my miracle -- pain management. And, now I am back to work. No, it's not a regular 40-hour a week 'day job' but I am doing something positive, for myself. And, I have lots of ideas and plans for the future. I am not allowing my disease to take over... I struggle with it, but I am confident I can muddle through. Surviving 10+ years with pain has made me stronger than I ever thought possible!
I never thought I'd be so happy about working, but believe me, I am thankful, every day. You can get there, too. :) Good luck!
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