- How I Reclaimed My Life From Chronic Pain
- Terrible Pain and a Sense of Hopelessness
- ‘Masking’ My Pain
- Back to My Old Self
- ‘Like bolts of electricity through my bones’
- ‘I tried everything’
- Pain management
- Living With Pain
- 12 Things Only Someone with Chronic Pain Would Understand
- 1. You never know how you’ll feel in the morning
- 2. People don’t seem to understand what “chronic” means
- 3. “Have you tried ___?”
- 4. Some days are easier than others
- 5. You LOL when asked questions like, “Do you have any pain today?”
- 6. Doctors without pain don’t always understand
- 7. Managing pain is more than pills
- 8. The relief you feel when painkillers start working
- 9. Waiting for those medications brings both pain and anxiety
- 10. Still, medications don’t completely remove pain
- 11. Pain changes everything …
- 12. Support is everything
- Living With, and Managing, Chronic Pain: A Patient’s Story
- Meet Beth Thorp
- My Coping Plan
- The Challenges of Living With Chronic Pain
- How Family and Friends Can Help
- Attitude is Everything
- Related posts:
How I Reclaimed My Life From Chronic Pain
By Lauren Zalewski, Special to Everyday Health
We all experience aches and pains from time to time, especially as we get a little bit older. But I never imagined that pain would take hold of my life and nearly ruin it.
I was diagnosed with lupus and fibromyalgia back in 2001. With the exception of a handful of short flare-ups every year, I was able to function and go about my everyday life, for the most part. Then, five years ago, everything came to a screeching halt when I had a long and painful flare-up that would last for four years. The pain became too much for me to bear. I was prescribed powerful pain medications, but they didn’t really help. Each time I returned to my doctor, the answer was always the same — let’s try another medication.
Terrible Pain and a Sense of Hopelessness
Gradually, I began to recede into a world dominated by my constant struggle with, and focus on, the pain. Everything else began to fall by the wayside, and the things I loved to do — the things that gave my life joy and meaning — no longer seemed possible. I loved to cook, socialize with my friends, and volunteer. Previously, my days were busy attending PTA meetings and running the local children’s theater group. But my world soon shrank dramatically as I spent all of my time at home, usually on the couch watching television, depressed by what my life had become and in agonizing pain. Eventually, I began losing hope.
What made me saddest was that I felt like my two beautiful children had lost their mother, and my husband had lost his wife (that’s my family in the picture). I essentially abdicated my responsibilities as a mom and a wife as my chronic pain subsumed everything and left me a shell of my former self.
I was isolated, yet although I didn’t realize it, I was far from alone. Chronic pain has emerged as a major health issue in this country, affecting an estimated 100 million Americans. Some of them experience chronic pain syndrome, the same illness that overwhelmed me.
My sister, a psychologist, knew I needed to try a different approach, so she did some research and found a residential program at Silver Hill Hospital in New Canaan, Conn., that focused entirely on chronic pain and recovery. The idea of leaving my family behind for a month was heartbreaking to me, but I had to do something — I wasn’t really there for them anyway. I decided to swallow my pride and give the program a try, because continuing to live a life dominated by pain and misery just wasn’t an option.
‘Masking’ My Pain
The focus of the Silver Hill program is on teaching people how to live with their pain. You have to accept that it probably isn’t ever going to go away completely. Pain medications are certainly not going to make that happen. In fact, as I learned, they can ultimately make the pain worse.
At the beginning of the program, chronic pain patients like myself are given a blank mask and asked to decorate it to reflect their feelings. I made mine black, with large, glittery tears that represented my suffering, but also the glimmer of hope that things might get better (that’s my mask at right).
I was also offered tools and skills — mindfulness, meditation, exercise, and more — that helped me change my relationship with my pain. I learned that many of us tend to catastrophize our pain (“My back is killing me!”). Most importantly, I came to realize that there were moments when I wasn’t really in pain, and how to capture those moments and build on them. It’s so important to direct our thoughts toward the positive things in life and to practice gratitude for them.
Along with this came daily physical therapy sessions and group classes in which we were taught about nutrition and holistic approaches to harnessing the power of our minds to manage our pain. Sometimes we need a reminder to enjoy the simple pleasures in our lives — sharing a laugh with a friend, listening to great music, taking in the beauty of the world around us — and make them central to our daily lives.
Back to My Old Self
Shortly before leaving the one-month program, I was asked to make another mask (shown at left). This time, my mask was bright yellow and covered with words I clipped from magazines: safe … free … health … powerful … found!
I’m using the tools I was given every day to keep my chronic pain in perspective. It has allowed me to resume my life and to really live again. I’m back to being the person I used to be and am meant to be — happy, busy, active, social, adventurous, a mom, a wife; a person who loves life and appreciates everything I have, and almost lost. Most importantly, I have my smile back.
There are many programs like the one at Silver Hill Hospital for treating chronic pain. For more information on pain management and treatment for chronic pain disorders, contact the American Chronic Pain Association.
The textbook definition of chronic pain, according to the International Association for the Study of Pain (IASP) is any pain that’s been present in any part of the body for a period of three months or longer.
“By definition, the difference between chronic pain and what we call acute pain – which is non-chronic pain – is that it doesn’t serve a purpose,” explains Dr Alan Fayaz, a spokesperson for the British Pain Society (BPS), and a consultant in Anaesthesia and Pain Medicine at University College London Hospital (UCLH).
“Normally when we feel pain, it’s the body’s way of warning us about something – you’ve put your hand on a hot stove, or you’ve had your appendix taken out and your body needs to rest so it can heal,” he adds. “Any pain that’s still present beyond a reasonable time of healing is not functional. If your body is still in pain after a period of three months, where there is no ongoing healing happening, then it is chronic, dysfunctional pain.”
Chronic pain comes in a number of different forms – musculoskeletal, such as chronic lower back pain; chronic neuropathic pain, caused by a nervous system dysfunction or disease; and chronic widespread pain, or fibromyalgia.
And, of the 28 million people in the UK who experience chronic pain, 8 million – around 14% of the UK population – live with pain that is considered moderately to severely disabling.
‘Like bolts of electricity through my bones’
38-year-old Katie Silverthorne has lived with chronic pain condition multiple sclerosis (MS) for the last 15 years, including a period of four months early on where she was completely bed-bound by her pain.
“I have relapsing-remitting MS, so the pain goes up and down over the years but, at its worst, gosh the pain was really bad,” she says.
“I used to get constant shooting pains, like bolts of electricity through my bones. For me it always affects the left side of my body, so the pain would go through my wrist, from my wrist to my elbow, my elbow to my shoulder, my knee to my ankle, and my knee to my hip – like having a hot needle that went right through the middle of the bone.”
“My skin was also very very sensitive to touch, so if anything touched my skin it would feel like it was burning,” she adds. “The other major pain was a constant ache in my side, as though something sharp was poking me all the time.”
For her, the biggest impact of chronic pain was the exhaustion and low mood.
“MS makes you tired anyway, but to have to live with constant pain on top of that is very tiring. It also makes you grumpy – like if you’ve twisted your ankle but keep trying to do things on it anyway, and you get grumpy because it hurts,” Silverthorne says.
“It’s very draining having constant pain,” she adds. “Obviously it affects your mobility as well, and your desire to do things. Eventually, you get depressed because it’s just miserable to have chronic, constant, never-ending pain.”
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‘I tried everything’
For 52-year-old William Comet, who has sacroiliac joint dysfunction, the chronic pain began 18 years ago.
“I started to have this lower back pain in my right side, which just came about with no obvious cause,” he explains. “I remember getting out of bed and feeling soreness in my right gluteal muscle.”
At the time, Comet was working as a self-employed journalist.
“What I was noticing was that I’d sit down in my chair and start looking at my computer, and I was in pain very quickly when sitting down, and it just wouldn’t go away,” he says.
“Driving in a car was very painful, I wasn’t sleeping very well at night, and trying to sit at my desk and get any work done was really difficult. It was quite literally a pain in the ass.”
Determined to be free from his pain, Comet says: “I tried everything, lots of different things. I went to great expense buying a new bed. I bought a new, very expensive luxurious car. I tried physio, Pilates, I saw three different osteopaths – each for 10, 15, or 20 treatments. I was very committed – and, by the way, this was very expensive.”
Over the years, both Silverthorne and Comet have had to adapt their lives to fit around their pain.
“I changed my career because I physically couldn’t do my job properly,” says Comet, who now works as a business coach and has to limit the amount of time spent looking at a screen.
Likewise, Silverthorne says: “I quickly realised I was never going to be able to work full-time again, so I initially went back to work part-time, and now run my own business.”
Although she does now work quite long hours, she adds: “I just work when I want to work, and it’s very much under my own control.”
In terms of pain management, Fayaz explains: “The medication we use on a chronic pain basis tends to work on the nervous systems – antiepileptics, like gabapentin and pregabalin, and antidepressants. If we think the chronic pain is due to a specific anatomical issue, there are certain pharmaceutical interventions, like injections, that we can also use.”
When her pain was at its worst, Silverthorne took neuropathic pain killer pregabalin for five or six years, before coming off it to conceive her daughter. Since then though, she says, she’s learned to manage her pain through a combination of daily visualisation exercises, acupuncture and exercise.
For Comet, cognitive behavioural therapy (CBT) has been hugely beneficial for his mental health, and coping with the emotional impact of chronic pain.
“I also studied to be a non-advice-based life coach, and I’ve coached other people with chronic pain, which helps make me feel useful again,” he says.
Indeed, as Fayaz adds, the majority of pain management work is focused more on practical adaptations.
“We’ll do what we can with injections, medicine, acupuncture and various machinery to try to reduce pain, but even if we can’t take the pain away, there are adaptations we can suggest so people can continue to have a fulfilling life,” he says.
“This might be practical things like pacing themselves, and a lot is about challenging fears and anxiety. So much of chronic pain treatment is actually about managing to ultimately live a better life despite having pain, and that’s something we can do really quite successfully through our physiotherapy and psychology departments.”
Living With Pain
Back to The Art of Pain Management main page.
The goal of pain management is to increase function, improve quality of life and reduce one’s sense of suffering. The American Chronic Pain Association uses relaxation techniques as one of the necessary coping skills for dealing with pain. But when you are in a great deal of pain, it is difficult to relax. Relaxation, in part, is redirecting your thoughts off of your pain and on to something else that you enjoy. But, redirecting your thoughts can be difficult. To help you, take a moment, and to yourself say your alphabet and at exactly the same time count from one to 25. Give it a try; you might be surprised at the results. You see, you cannot do it. Why, because we have a one track mind. While we are thinking A, B, C, we cannot be thinking 1, 2, 3. So, during the time that you are trying very hard to accomplish this task you were not focused on your pain thus you reduced your sense of suffering, one of the goals of pain management. With practice you can redirect your thoughts off of your pain and on to other things.
To help you accomplish this, we have provided some activities that you might find useful. Referred to as “purposeful activities” or simply put, enjoyable activities, they can aid you in focusing your attention on things other than pain levels. Below you will find some suggestions for purposeful activities. Use your imagination and think about the things you enjoy doing.
My Favorite Things:
As children we never really thought too much about playing. It was a natural thing all kids did. And, when we knew how to play, it didn’t take much to make us happy. However, somewhere along the years we often lose that ability to play, to use the simple things in life to entertain ourselves. Can you remember the last time you actually played? The last time you did something so simple yet so satisfying that you found you were lost in the activity. To help you better understand Purposeful Activities, we have listed some things that you might want to think about…
- Play Dough/clay
- Coloring book
- Jigsaw, word, and math puzzles
- Board and card games with friends or family
- Listening to music and singing along
- Simple crafts
- Easygardening (e.g., herb garden on kitchen counter that can be used for cooking)
- Painting – by numbers
- Simple wood working projects
If you use your imagination you can discover many other ways to play and enjoy the simple things in life that just might help you reduce your sense of suffering, if only for a little while. As you incorporate these activities into your daily life, you might begin to feel you have some control, if only a little, over your pain. Use your imagination and add to the list above all the ways you can redirect your attention from your pain and on to things that you enjoy. It can help if you allow it.
12 Things Only Someone with Chronic Pain Would Understand
Living with chronic pain makes day-to-day life difficult. It touches every single part of my life, from hygiene, to cooking, to relationships, to sleeping. I’ve been living with chronic pain since kindergarten. If you also live with that four letter word as your constant companion, you’ll probably relate to these 12 things all too well.
1. You never know how you’ll feel in the morning
When you live with chronic pain, every day is an adventure. That goes double for the start of the day. We never know how much pain we’ll wake up with or how it will change throughout the day.
2. People don’t seem to understand what “chronic” means
Loved ones often mean well when they tell us things like, “Hope you feel better soon!” The reality is, the pain doesn’t stop, so it’s hard to know what to say.
3. “Have you tried ___?”
Again, people mean well and want to help. That said, we see professionals to get help with our pain conditions and, more often than not, do a lot of research ourselves. We know our bodies best. If we’re sharing frustrations, it’s usually because we want empathy more than strategy.
4. Some days are easier than others
I’ve been dealing with varying levels of pain every single day for the last 23 years. Some days are a lot easier. Other days are an absolute struggle fest.
5. You LOL when asked questions like, “Do you have any pain today?”
Going to the doctor is a fairly regular experience for us. When you go, they’ll ask if you have any pain and where it is, either verbally or on a form. I can never avoid laughing at this question. I usually feel bad when I do. I know the person asking isn’t doing it out of malice or a lack of understanding, but because they have to ask.
6. Doctors without pain don’t always understand
Healthcare providers are amazing people. They do some of the most difficult jobs in the entire world. That said, there’s a lot that’s misunderstood about pain. Some of the more common misunderstandings are that younger people can’t have chronic pain, and strong medications will always lead to addiction.
7. Managing pain is more than pills
Patches, kinesiology tape, exercises, meditation, self-care … These are all a part of the chronic pain toolbox. We often try a lot before moving on to medication, unless we know meds will be the only things to help the amount or type of pain we’re in.
8. The relief you feel when painkillers start working
Pain affects so much of our lives, including how we interact with others. When relief starts to hit, it helps to eliminate so many of those symptoms of pain. Heck, we even become productive! We go back to being ourselves instead of someone struggling to survive the day.
9. Waiting for those medications brings both pain and anxiety
Whether due to clerical errors, insurance requirements, or stigma, waiting for that next dose to help lower our pain is hard. It’s not about a high, but about relief. These medications make it possible for us to participate fully in life.
10. Still, medications don’t completely remove pain
Pain is still a constant companion. It’s always with us, even when we’re on medication.
11. Pain changes everything …
I don’t remember much of a life before chronic pain, except running around in oversized T-shirts and eating cereal. Others I know have lived vibrant and expressive lives that chronic pain dulls. It changes how we use our time and energy, what jobs (if any) we’re able to do, and every single relationship we have.
12. Support is everything
For the longest time, I didn’t know anyone else dealing with chronic pain. My great grandma dealt with it, she but passed away when I was 11. It wasn’t until I was in college that I met others dealing with chronic pain conditions. It changed so much for me. I began to have an outlet that understood. If I needed to vent about stigma or brainstorm how to communicate my pain to my healthcare team, I had people there. It’s completely changed how I’m able to process my feels around my pain.
Kirsten Schultz is a writer from Wisconsin who challenges sexual and gender norms. Through her work as a chronic illness and disability activist, she has a reputation for tearing down barriers while mindfully causing constructive trouble. Kirsten recently founded Chronic Sex, which openly discusses how illness and disability affect our relationships with ourselves and others, including — you guessed it — sex! You can learn more about Kirsten and Chronic Sex at chronicsex.org.
Living With, and Managing, Chronic Pain: A Patient’s Story
When a patient is living with chronic pain, they don’t necessarily look sick. They may be putting on a brave face, but really hurting inside. Learn how one patient learned to live a full life despite chronic pain. By Sarah M. Whitman, MD and Beth Thorp
As a psychiatrist, I (SW) work with patients who have chronic pain to help them understand it, to reduce their pain levels as much as possible, and to live a full life, despite pain. It is a complex undertaking for patients, and one that takes a good deal of time to figure out.
I recently gave a presentation to a religious group that was interested in learning how to help their members who had chronic pain. In addition to my talk, I thought it would be helpful for them to hear directly from someone who has worked extremely hard to manage chronic pain and live well despite it. Her part of the talk went so well that I asked if she could write up her remarks to share with the pain community. They are presented here.
My hope is that this article can be used to help other patients who live with chronic pain learn to manage their symptoms and enjoy life despite pain. Having models can help other patients not have to “reinvent the wheel.” I would invite all healthcare providers who work with patients with chronic pain to reprint this article to be able to hand it out to your patients.
I hope that my sharing this information, will make it easier for others to cope with this disease.
Meet Beth Thorp
I am a 59 year-old woman who has had chronic pain for about 18 years. In the beginning I had left-sided sciatica, and now my pain has expanded to my low back, neck, arms, and various other parts of my body. In this article, I will be covering 3 topics:
- My “Coping Plan”—or how I manage my pain beyond the use of medication
- Some of the challenges I’ve faced in managing my pain and how I address those challenges
- How family and friends can help those with chronic pain
My Coping Plan
While medication is a necessary and core tool for me in the management of chronic pain, I believe that it’s really important to have a variety of other tools to use. Many people use complementary medicine such as acupuncture, therapeutic massage, Reiki (or a practice of hands-on therapy), and other such approaches. But I’d like to focus on
5 main lifestyle forms of pain management that work well for me.
1. Movement and Exercise
This is probably my most important coping tool for a variety of reasons. Exercise helps in several ways, both physically and mentally. In my early adult years, I was very active, participating in ice dancing, skiing, and roller blading. Because of the pain, my exercise now involves mostly just walking and low-impact aerobics.
Even if I’m in pain, movement can help me to feel better. Physically, it loosens my joints, keeps me limber, and helps me to stay in shape. Mentally, it takes my mind off the pain, and it provides me with social interaction if I exercise with friends or in a class. If I’m in too much pain to really exercise, just changing positions—from sitting to standing, or standing to lying down—can help reduce my pain.
2. Change of Scenery
Even if I’m not really feeling up to it, getting out of the house, getting fresh air, walking around the block, doing an errand—anything that takes me into a different environment can help reduce my pain.
This is a tool I adopted almost by mistake—or trial and error really. It can involve any activity that keeps my mind off the pain, such as reading, watching TV, knitting, simple tasks like coloring books, etc. I used to feel guilty about how much TV I watched until I realized how effectively it reduces my focus on pain. Distraction may not actually reduce my pain; it just takes me into a different world, thus away from my pain. This may, in fact, be one of the best tools I have.
4. Support Groups
About 2 years ago, I joined a support group for patients with chronic pain. The group is run by a psychiatrist who specializes in treating patients with chronic pain. Until I joined this group, I didn’t realize how helpful it would be to spend time with others like me. It’s extremely helpful to know that I’m not the only one with chronic pain. It’s a relief to be able to talk with others who “get it”—who know what I’m going through. Sharing stories, ideas, concerns, frustrations, and hearing the same from others is wonderful!
5. Don’t Over-Do
I have learned that I need to be realistic about my capabilities. It’s critical that I don’t over-do. It’s important for me to limit my activity every day, even on “good” days, or I’ll pay for it later with higher pain levels. I usually try to schedule no more than 1 or 2 activities per day.
For example, I might attend an exercise class in the morning, and then have lunch with a friend. Or I might run errands in the morning, and go out to dinner with my husband in the evening. Even if I’m not having a “bad” day, I must rest in the afternoon—read in bed, meditate, or take a nap. If I don’t take the time to rest my body and my mind every day, my pain will flare up.
Chronic pain is variable, so having a range of tools to use in managing it is critical in successfully living with chronic pain. While I’m in pain every day, it’s not every minute or even every hour. So I need to use the tools in my tool box that will be most appropriate to the day, the hour or the minute to make myself as comfortable as possible.
The Challenges of Living With Chronic Pain
As with any chronic illness, chronic pain brings a set of challenges. In this section, I’ll review the biggest challenges I’ve encountered with this condition, and then describe some suggestions I’ve uncovered to address them.
People Don’t Understand
I think the most difficult part of having chronic pain is that most people don’t understand it. There’s a large difference between acute pain, which everyone has experienced, and chronic pain. Chronic pain is not just acute pain that lasts a long time. And because I look well much of the time, people don’t understand that I’m in pain. And if I’m not in pain at the moment, I could be any second. It can come on very suddenly.
Although I don’t want to talk about pain all the time, I do think it’s helpful for the people with whom I spend a lot of time to understand chronic pain and some of its complexity. To understand that I’m not just a ‘baby’ with a low tolerance for pain or that I’m just not coping well. To understand that just because someone else had back surgery, for example, and is now fine, doesn’t mean that I should also be fine.
The Desire to be Normal
Something that I think anybody with a chronic illness struggles with is the desire to be normal. I want to keep up with everybody else, especially if I’m not in pain at the moment. However, if I take on too much, or over-do activities, I’ll pay for it later.
- Setting Priorities. What I’ve learned is that I need to decide how important an activity is. I ask myself, “Is this activity, event or function worth the high likelihood that I’ll have much more pain later?“ Sometimes the answer is ”yes!” If the grandkids are visiting for only a few days and they want us all to go out on the boat—well, I might just do that! In contrast, if we have guests staying for 2 weeks, I won’t try to go along on every outing. I can’t do everything, so it’s important that I choose wisely.
- Asking for Help. One of the hardest things for me to accept is that I need to ask for help. Because I have limitations, I must accept assistance from other people even when a person without pain would not need it. Trying to do things that I really can’t will cause problems later that day or evening, even simple things like standing too long at a party. I must remember to use the tools I have to keep healthy.
- Accepting Special Help. Several years ago, after much encouragement from my doctor, I bought a wheelchair. I absolutely did not want to be that gal being pushed around in a chair, so this was a very difficult decision for me. But it’s been such a great buy! It gives me a known, comfortable, portable chair, and I take it with me almost everywhere I go. I usually don’t use it for transportation, but just for sitting. Do people stare at me? Do people ask me why I have it? Do people think I don’t need it? Yes to all those questions. But I’ve learned not to care; it has been invaluable to me.
Coping With Depression
One of the side effects of having chronic pain, as with any long-term illness, can be depression. Although I’m fairly upbeat most of the time, I definitely struggle with unhappiness—if not real depression—on occasion. As does the pain itself, my mood fluctuates. If I allow myself to look into the future and acknowledge that I’m going to have pain for the rest of my life, I’ll really fall into a downward cycle.
Stay in the day. I try hard not to focus too far into the future, but instead think about all the real blessings I have in my life right now. It’s helpful to follow the Alcoholics Anonymous philosophy of one day at a time. And sometimes it’s one hour at a time, or even one minute at a time. I tell myself, “I just have to get through this one pain flare-up and then things will be better.” While the door to skating and skiing is now closed, the one to arts and crafts has opened up wide!
The Greatest Challenge
The final challenge, and probably the one I dislike the most, is when I take it out on my loved ones. I really mean it when I say, “God bless all of the spouses, partners, and close friends of those of us with chronic pain.”
I am so lucky to have my best friend as my husband. He has been through the ups and downs of this disease with me for the full 18 years. There have been times when I’ve been unable to do any household duties, sometimes for several months. Without a complaint, my dear husband picked it all up. And yet, there are times when the pain is so bad that he can get the brunt of it.
Unfortunately, I don’t really have a good solution for this one yet. I hope I always apologize to him afterwards, and that he understands that it’s the pain talking, not me. Probably the best solution would be to remove myself from the situation, lie down, breathe deeply, and focus on all the blessings in my life—most especially my wonderful husband!
There are many challenges, big and small, associated with chronic pain, both for patients and those around us. The key to all of these challenges is for the patient, the partner, and others close to the patient to understand the disease and adapt to it.
While we may have to give up some activities, as well as use help more often than in the past, that doesn’t mean we have to live a poor quality of life. I wouldn’t have learned how to make bead jewelry if not for my pain, because my time would have been taken up with other sports and activities. Life is different for me now, but it can still be wonderful!
How Family and Friends Can Help
When I have an ill friend or family member, I often want to help. I think that’s a natural human desire. But not all assistance is actually positive. After living with pain for almost 20 years, here are my top 3 suggestions for what to do and not do to support those of us with chronic pain.
1. Do Not Play Doctor
Please don’t try to tell me how to treat my pain. I don’t want to hear, ”You must try this drug or treatment. It worked for my hairdresser’s mailman.“ I’m sure you’re trying to be helpful. But trust me, I have a great team of doctors, and we’ve already tried everything appropriate there is to try. I live with this disease; I want to be cured more than you can possibly imagine. It’s great to be sympathetic or empathetic, but please don’t try to solve my problem.
2. Be Flexible
Remembering how variable this disease is, please try to be flexible. Just because my pain levels were good yesterday, and I was able to attend a movie matinee, that doesn’t mean that I’ll be able to do so today. My pain can change from day to day, hour to hour. So if we’re getting together, be prepared for last minute changes in plans. I may have to cancel all together if the pain is really bad. Or I might suggest doing a take-out meal instead of going to a restaurant. I don’t like having to make last minute changes—it’s just the nature of living with this disease.
3. Offer Help and Assistance
Offer help or assistance when you can, but don’t be hurt or upset if I don’t accept. If you’re going out to run some errands, call me and ask if I need any supplies. Especially in bad weather, I can really struggle with going out to the grocery store or pharmacy.
If you have a free morning or afternoon, offer to come over for a visit. I spend a lot of time at home alone, so company can be welcome. Don’t worry—if I don’t feel up to it, I’ll tell you. If I do feel like it, perhaps I’ll invite you to come over for coffee or tea—or even suggest a walk. As I said earlier, a change of scenery can often make me feel better, and this includes having somebody to visit and talk with. And while you’re here, perhaps offer to help with a small chore, such as throwing in a load of laundry. These small contributions can be immensely helpful.
Attitude is Everything
Chronic pain is a disease that requires a lot of lifestyle changes. Managing the pain can feel like, or even be, a full-time job. Each day is different, and I never know what the morning will bring. Fortunately I have a variety of medications, tools, and techniques for managing the pain. I’ll vary the use of these depending on how good or bad it is each day.
Living with chronic pain can be challenging. I try hard to overcome these challenges by focusing on the plusses in my life, not the minuses. This requires creativity, flexibility, and a good sense of humor. Others can support me by trying to understand my disease without judgment, being flexible, and offering help when I want it.
I can cope and enjoy a happy life, with less pain, as long as I have a group of supportive friends and family members by my side.
Last updated on: May 5, 2016 Continue Reading: Pulsed Electromagnetic Field Therapy: Innovative Treatment for Diabetic NeuropathyV_Sot / Getty
I wake just after midnight not because I want to, but because I have to. Because my body is forcing me out of my slumber. There is an ache in my back. A dull, consistent throb, and while this pain is nothing new — it has woken me most nights since my fifteenth birthday, since I endured an eight-hour operation which fused and bonded the lumbar region of my spine — knowledge doesn’t make it any easier.
Familiarity does not make it any better. And, it definitely does not make me more rested.
My discomfort doesn’t stop there. I have swelling near my hips and inflammation throughout my abdomen: from my stomach to my ribs to my butt and through my waist. My joints pop. My legs twinge. They tense and cramp and quiver unconsciously. The spasms are beyond my control.
I shift my body, turning from my right side to my left — trying to find comfort. Trying to find relief. I roll onto my stomach. I toss a pillow beneath my legs and flip onto my back but nothing happens. There is no change. There is no difference. There is no reprieve, respite, or relief and so, after a few minutes, I get up (as I always do) and shuffle from my bedroom to the kitchen.
I search for pain pills and anti-inflammatories in the dark.
And then I head back to bed, hoping I get just enough comfort to sleep. To make it through the night. And usually I do, but then I wake and the cycle starts all over again.
I shift. I stretch. I take pills. Rinse and fucking repeat.
This is life with a chronic condition: it is a constant struggle, an uphill battle. I fight every day for small victories and little relief, but the pain is only one small aspect of my ailment. It is only one small part of me because “the pain” causes many more problems. The constant pain doesn’t just affect me physically. It affects me mentally, emotionally, and socially too.
It affects each and every part of my life.
You see, my pain often makes it difficult to concentrate — sometimes I stare at my email for hours trying to make sense of the words. Trying to “get it” or to understand. My pain makes it difficult to do little things, or to enjoy any thing. I cannot tell you how many dances I’ve missed with my daughter or how many intimate moments I’ve skipped out on with my husband. I cannot tell you how many days I’ve spent lying down, or nights I’ve spent wide awake, unable to sleep. And — when the pain is bad enough — I cannot cook. I cannot eat. I cannot clean, and I cannot bear to sit or stand.
Living like this is really fucking hard.
My pain also makes me miss opportunities, and forces me to cancel plans. My friends think I am lazy or dramatic. Like many who struggle with a chronic condition, I have a reputation of being aloof and a flake. My pain forces me into taking medications which upset my stomach, and to spend money on doctors and therapies which only help me a little bit. Which bring me only moderate, unsustained relief.
And sometimes my pain forces me to parent “from the bed.” I lay down with an ice pack while my daughter plays Mommy or colors or watches cartoons.
And that pain? The pain of knowing I am living half a life? Of knowing I am missing out? That pain is far greater than what I feel in my back. That is the toughest pill to swallow.
It is deeper and darker and more insidious, and it fuels my depression.
Of course, the correlation between pain and mental illness is well-studied. According to the American Pain Foundation, “32 million people in the U.S….have had pain, lasting longer than a year…. from one-quarter to more than half of the population that complains of pain to their doctors depressed.” Furthermore, 65% of depressed people complain of pain.
What does this mean for me? Well, it means that my mind and body are locked into a vicious cycle. A cycle of sadness, confusion, desperation, desolation, and pain.
And while I could give up, I don’t. Everyday I don’t because I want to fight. Because I have to fight. Because I am worth the fight, and you are too.
If you are struggling, know that you are worth it. I see you. I don’t think you’re dramatic or flaky, and you’re definitely not alone.