melissa and her friend at the beach in massachusetts

How I Experience Beach Days as Someone With Chronic Pain

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The sunshine feels amazing on my face! I absolutely love the beach. I love the warm air, the sunkissed skin, long conversations with good friends, beach pictures, and the contagious positive energy! I love how quickly time passes, while simultaneously life feels inexplicably slow. At the beach, I can truly relax.

Except, I live with chronic pain – so not quite.

When I go to the beach, I have to prepare for moments of bliss interrupted by moments of pain. I experience allodynia as a symptom of my chronic pain. That means my nerves are incredibly sensitive to stimuli that would not typically be painful. Some prominent examples of painful stimuli for me are vibrations, lotion, wind, and flip flops.

There are a myriad of ways allodynia inhibits my beach enjoyment. I’ll talk about three here.

Sunscreen

First, I’m a huge advocate of sunscreen, but I’m also notorious for getting burnt at the beach. Here’s why: applying sunscreen, lotion or spray, causes me a lot of pain. Often, the discomfort associated with applying sunscreen is greater than the pain I experience from being burnt. Also, I used to apply lotion as part of a therapeutic regimen to desensitize my nerves; that challenging memory only reiterates my reluctance to eagerly apply sunscreen.

I usually get a sunburn when I go to the beach because my skin is so sensitive both to sunscreen and the sun in general. Yes, absolutely, the burn hurts, and there are adverse consequences of sunburns. Yet, sometimes, since I’m so used to pain, I don’t notice I’m getting burnt until it’s too late. And, because it’s so uncomfortable, I tend to push the boundaries on the length of time between reapplying.

Sand

The worst, by far, is the sand! Most people enjoy the feeling of sand between their toes. Most people, absentmindedly spend their days at the beach digging holes in the sand with their heels or making shapes with their toes. For me, even just the idea of that is practically unbearable. The sand irritates me when even a small amount is on my towel because the feeling on my skin causes me pain. I’m so sensitive I can feel even one grain.

It’s especially uncomfortable when it is caked on my feet after it dries. When the wet sand dries and becomes hard and scratchy, most people would simply wipe the sand off, but for me, that pain, even thinking about it, makes the hairs on my arm stand up. I’d prefer to wait hours and hope the sand naturally falls off than rub the coarse, unforgiving sand off my feet.

The sand is also a culprit when walking to the water. When I step on hot sand, it’s not just slightly uncomfortable, it’s unbelievably painful. Usually I end up doing a dance, like a jig, jumping up and down attempting to acclimate my feet to the abrupt temperature change. If you’re looking closely, you’ll notice my skin will change colors once it makes contact with the hot sand. My toe nails especially will turn bright red. Later, if I brave the cold water, my legs will turn purple and blue. I’m basically a chameleon.

Water

Getting in the water presents an entirely different challenge. In New England, even in the summer months, the ocean water is particularly cold. My friends with typical nerve reactions have confirmed this fact. When I step in the water, my body panics. It’s so painful! I have to slowly enter, leave, and reenter the water multiple times before I’m able to submerge myself in the ocean. Even then, it hurts all the way to my bones. It’s sort of like how it feels to be outside in bitter cold, winter temperatures. What’s worse is my body cannot adjust to this feeling because the waves continue to make disturbances in the water — yet another sensitivity. And, the deeper I submerge myself, the higher the waves hit my still warm skin – it’s a catch 22. Sometimes, I’m that person who goes to the beach and doesn’t go in the water.

Melissa and her friend at the beach in Massachusetts.

Anticipating and then experiencing all this additional pain and excess stimuli might make some people question why I would ever want to go to the beach. To be honest, there was a time when I opted-out of activities I knew would cause me more pain. I missed out on a lot of amazing moments because of that! So instead, I grin and bear it. Yes, going to the beach is excruciating for me. I need to acknowledge that and be ready. I sometimes spend days after recuperating. However, even with the pain, I have so many great summertime beach memories with friends and family. I can’t let my pain direct which experiences I enjoy — which is why, I’m already planning my next summer beach day, and I can’t wait!

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8 Hard Questions I've Had to Answer as Someone With Chronic Pain

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1.5 billion people worldwide suffer from chronic pain, according to the American Academy of Pain Medicine. Especially with age, everyone experiences some form of chronic pain in their lifetime, and yet many face-to-face discussions about chronic pain and illnesses are still taboo.

From my experience, here are the “top 8 hard questions” I’ve had to answer and believe should be more openly and consistently discussed in order to start erasing stigmas and discrimination about people battling chronic pain and illness:

8. “You look ok…?” 

Thank you. Whenever you see me, it will almost always be on a good day. I do my very best to look “normal,” as we all do, and to live in the moment. But, I am always in pain, though the levels vary greatly between good days and bad days.

7. “Have you tried ___?” 

Whatever alternative medicine, vitamin, diet, exercise regimen or even spiritual ideas you have about how I can feel better, I can assure you I have tried almost everything. However, I do love that you care enough to offer up what could possibly become a new treatment method to try in the incessant pursuit of pain management. One of my biggest challenges is accepting my diagnoses and limitations, so please do not solicit unrealistic “advice” that insists I can be “cured.” Nor is it helpful to generalize comparisons of my situation with someone else.

6. “Do you use narcotics?” 

Yes. Do I want to? An emphatic no. I’d rather not require any medications, but I do. I waited as long as was physically possible before needing to try narcotic options, and even still I’m on the lowest possible dose. I’m also constantly trying to stop taking my meds to see if I can go without, though annual flu viruses force this check-up. You also do not get “high” if you follow the prescription, or perhaps if you don’t require them anymore.

5. “How is your mental health?”

To live with chronic pain and illness means fighting anxiety and depression, as well as post traumatic stress disorder (PTSD) in my case. Admittedly, when fatigue and pain levels are high, my mind goes into survival mode, honing in on pain signals and healing. When this happens, I can temporarily have trouble expressing what I’m thinking and have memory issues.

4. “Why aren’t you working more?”

I would give anything to be able to earn even regular part-time wages, but I’m physically unable to stand or sit for long enough each day. Period. There will always be people who look down on the fact that my very survival depends on government aid. In reality, I am constantly fighting to a) improve my health so that I can work more and hopefully one day not require disability payments at all b) to be mentally OK with the fact I cannot work regular hours anymore and c) to find alternative ways of working around my limitations.

3. “Couldn’t you live the life you’ve always dreamed of if you’d just snap out of it?”

Unfortunately, chronic depression, anxiety and often post-traumatic stress disorder go hand in hand with chronic pain. The uncertainty of finances and health is an enormous source of pressure that occasionally induces a deep fear of failure. Although it will take longer than you expect because I must adjust almost everything to fit my health, I am achieving my goals and will fulfill my dreams.

2. “Do you want (and are you able to have) kids some day?”  

I would love nothing more than to be a mom to one, maybe two kids. There is a possibility that I can’t conceive due to my injuries, but I was told all I can do is try. If I can’t, I would adopt. And of course I’d have the assistance of a patient, loving guy (the only types of guys I date).

1. “Is there anything I can do…?”

The three things you can do to help me or someone battling chronic pain are: 1) Distract me from the pain simply by talking. Personally, visual distractions seem to work best. 2) Talk to me — swap survival tactics with me, and most importantly 3) Educate yourself with verified sources about my health problems.

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Pain scale 0 to 10 method of assessing. Vector illustration medical chart design

The Difficulty of Rating Pain on a Scale of 1 to 10 When You Deal With Pain Often

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If you’ve ever visited a medical facility with the complaint of “pain” they’ve probably asked you to rate it on a scale of one to 10, with one being no pain at all and 10 being the worst pain imaginable. This question was probably difficult to answer, even if they showed you the chart with the faces. I might even venture to guess that unless you are someone who has dealt with a good variety of pain, you could be rating a cold as high as an 8 — and, unless you are dying of it, it is probably unlikely to help the doctor that you think a cold is an 8. However, because so many people cry wolf in this way, it could mean serious things are being majorly overlooked.

I am by no means a medical professional, but I’ve had to fine-tune my answer to this question over many years. I find that if I feel perfectly normal (hah!) I’m a one, so almost never. My baseline is maybe two or three, implying in my head that things hurt but I’m used to it and it is in no way an emergency. If I make it to a five I’m in a lot of pain — you know, the “stabby” kind or “I just woke up and feel like I got run over by a bus” kind (no, not literally. See how hard it is to explain pain?). Anything above a seven should at least land me in a doctor’s office, if not a hospital, like that time I had a kidney infection — a solid seven there. I tried to convince myself I could push through the pain. As it turns out I could not (only made it two hours — actually five if you count the ER visit, but still, I felt like a wimp!).

I also like to always compare my pain to the times when it was so bad I was throwing up. I figure that might be an 8.5 (10 numbers only seem like too many until you can’t decide…) And I’ve never experienced this, but I’m going to put gunshot wound as a 10, because I cannot imagine the physical pain that would put me in but I do know it would be a lot, and that television characters probably don’t express nearly enough pain when they are shot.

But that’s just how my mind works with this system. Now to be fair, I’ve had nurses tell me that what I describe and the numbers I allot to said pain are what they think should be accurate, so maybe I’ve conquered the system. Of course, in praising me they always seem to have all those people in mind who think their cold is an eight. So maybe it’s just a hard system to decipher.

Unfortunately, I don’t have much to offer up in terms of alternatives. I myself have a hard time describing a type of pain unless it is “stabby,” because sometimes “dull” doesn’t seem like enough and any other term is not what I’m looking for (“achey” apparently just implies that there is pain that is not “stabby”). 

One things is for sure, though, I can always tell you if something is in pain and if it is in more pain than before. Wait no, that’s not right. I can’t do that, either.

*Sign up for our Chronic Illness Newsletter*

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When a Doctor's Advice Awakened My Own Doubts About My Pain

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Today was an amazingly productive day. I got a lot of things done, including baking both cookies and cupcakes. And yet, I still took Tylenol twice, reduced my subluxed sacroiliac joint half a dozen times, got nauseous twice, and had to lay down to rest and ice three times. And this was a good day. The day before yesterday I spent almost completely in bed, and when I did force myself up to do some housework, I ended up back in bed after a few minutes, crying from pain and frustration.

The doctor I saw yesterday didn’t see any of this. He spent 15 minutes with me, listening to a brief medical history of the past four years and doing a physical exam. At that point he told me that I need to exercise, get out of the house, and return to work as soon as possible.

Maybe I didn’t explain well enough how the pain and fatigue impacts my life. How I do physical therapy, but must carefully monitor my body to try and determine whether the pain I’m feeling is “good” or “bad.” How I want to exercise and get out of the house, but most of the time I end up injuring another joint and get set back for weeks. How I cry thinking of the hikes I may never go on again. How I want to work, but between my pain and my brain fog it’s impossible right now.

Yet in the brief time we spent together, he reignited my doubt. Maybe I’m exaggerating. Maybe I’m not that sick. Maybe I’m just lazy. Maybe I just need to suck it up and try harder.

The doctor wasn’t even mean. I’m sure he meant well and thought he was helping. In a way, that makes it even more insidious. It’s easier to ignore someone when they obviously don’t have your best interests in mind. Instead, he used his position of authority to give me advice that was unhelpful and invalidating. And that is unfortunate.

A little validation goes a long way when you’re in chronic pain. We live in a culture that tells you to pull yourself up by your bootstraps and tough it out when things get hard. It takes willpower to slow down and listen to your body. I have to remind myself often that it’s not lazy to rest when I’m ill or in pain, or that just because I’m not feeling pain at this moment doesn’t mean it wasn’t real. My pain is real.

In the end, I allowed the doctor’s words to get to me. The doubts he awakened were my own. It reminded me that I still have a ways to go in fully trusting myself and feeling secure in my knowledge of who I am.

The Mighty is asking its readers the following: Describe a time you saw your disability, illness and/or disease through the eyes of someone else. Check out our Submit a Story page for more about our submission guidelines.

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To My Physical Therapist, Thank You for Believing Me About My Chronic Pain

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When I walked in to see you, I was nervous. I was afraid you would think I was silly for going to physical therapy when I can do so much and have goals like “I want to lift weights again” and “I want to be able to do all the things I do now, except without pain or at least with less pain.” I was afraid you would see my strong, healthy body and not believe I have chronic pain. 

When I told you resting caused me as much grief as overdoing it and had made a decision if I was going to hurt anyway that I was going to do it while living a full life, I thought you would think I was exaggerating my symptoms.

Instead, you listened. You smiled and nodded when I told you all those things. You looked at my scans and you looked at my body and you could see I wasn’t exaggerating or being dramatic. You took the time to discuss my scans and what they indicated to me physically and to find out exactly where I hurt.

And then you turned and said, “Keep doing what you’re doing, you’ve got this right.”

I must have looked puzzled because you expounded, “Yes, you would have pain no matter what, but when you are out in your garden or running a trail, you’re stealing it’s power over you.”

I looked at you, relieved, and said, “Yes!”

I needed that, those words, right then. I was so relieved you understood what I’m about. 

And then, when you told me you were hatching a plan to help me reach my goals and to do everything I want to without misery, I knew that, together, we would make it happen. You were my partner and would help me embrace my full and active life, now and for as many years as possible.

I don’t like what scoliosis — and the brace I wore to treat it — has done to my body, and I get upset sometimes I had to recover from Guillain-Barré syndrome (GBS) twice. But I will do everything possible to keep it from damaging my spirit, and I have found an ideal partner for my quest.

Thank you for partnering with me to help take back my body and my life. 

Imagine someone Googling how to help you cope with your (or a loved one’s) diagnosis. Write the article you’d want them to find. If you’d like to participate, please check out our Submit a Story page for more about our submission guidelines.

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19 Things People With Chronic Pain Wish Their Doctors Knew

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When patients with chronic pain seek out a doctor for help, they aren’t always greeted with the compassion and respect they hoped for. While some doctors are supportive of those with chronic pain, too many patients are treated with suspicion and contempt when they discuss their pain and treatment options with their doctors.

We teamed up with the US Pain Foundation to ask our communities what they wished their doctors knew about their lives with chronic pain. Their message to doctors: Calling chronic pain patients “drug seekers” or suggesting the pain is in their heads makes managing pain even more difficult.

Here’s what they told us:

1. “If I could take care of it at home with Tylenol, I wouldn’t be here. I may not be crying or screaming, but it’s unbearable. That’s why I am here.”

2. “It is not fun for me to live my life in solitude, so please believe me when I say I am in pain and need some type of relief.”

3. “I am the master of my pain, and I trust me when I say what works and what doesn’t. Listen to us, because each and every one of us is different, and our bodies and brains are different.”

4. “I am not seeking out drugs, I am seeking relief.”

photo for doctor chronic pain call out

5. “Please realize I want to work with you and cooperate with you. Please understand my pain can be severe without being on the floor screaming, because I have learned to hide my pain visibly to get by every day. And please, view me as an ally to fight against my chronic pain, not the obstruction.

6. “As a doctor, remember that at the end of the day, you get to walk away from me and my pain. I don’t have that luxury. It stays with me whether I walk away or not, whether I think about it or not.”

7. “We are not to be treated as a collective, we are individuals. And certainly not a pesky number to get through before your game of golf.”

8. “My age doesn’t matter; if they could write ‘too young for this much pain’ on a prescription and I could take it and get it filled, I would do it in a heartbeat.”

9. “Every single patient reacts to pain differently. One might scream or cry, one might be silent, one might talk or laugh to distract themselves, but others may not be capable.”

10. “I wish they could experience the pain themselves. It can be so hard to describe, and often I forget the extent of it by my next appointment.”

11. “The question ‘What’s your pain level number?’ means absolutely nothing to me. All-over pain? I live with levels of four to five daily, so if you are asking my level beyond that which I live with, then yes, my pain level number is going to be eight, nine or 10. Please believe me, if I am asking for pain medication, my pain level is beyond what I can handle. I wouldn’t ask if I didn’t really need it. Just believe me; that’s all I ask.”

12. “I wish doctors knew that I am OK with them not having all the answers. I would much rather a doctor tell me ‘I don’t know that answer and will have to look into it’ instead of pretending to know. I would rather a doctor be willing to learn with me.”

13. “I wish my chronic pain management doctor would write a letter to social security disability explaining how not treating pain could cause more problems and that it’s never going to go away no matter what job I do!”

14. “I can be happy and be in horrific pain at the same time. If I’m smiling it does not mean the pain is less or better; it just means that I know I am more than this fragile body.”

call out for doctor chronic pain post

15. “I wish these doctors who took an oath to cause no harm would realize every time they downplay our pain they’re causing harm. I’ve been living, if that’s what you call it, with RSDS and chronic pain for 25 years. If I hear one more doctor tell me narcotics are bad for me I’ll scream.”

16. “It is almost impossible to care for four growing boys and a [terminally ill] stepfather without some type of pain management. Doing simple household chores can leave me bedridden for days if I attempt to do them like a normal parent. My children deserve a mom who can function on a daily basis.”

17. “I want doctors to understand that when you are in chronic pain, pain medication only helps dull the pain. You do not enjoy pain meds. They are not for fun or a high. They are strictly to be able to function at a little higher level. Makes you able to get out of bed without tears in your eyes. Chronic pain eats away at your very being.”

18. “I wish they understood just how much pain we are in all the time… and I wish they would not lump us in with the people who overdose on opioids like Prince, Michael Jackson, and such… Just because some pain patients need medications like opioids to make their quality of life better, say to help one get out of bed or function better. Instead they choose to treat all of us as addicts just because we have chronic conditions.”

19.I wish that doctors could understand that it’s something you can’t out-think.”

What do you wish you could tell your doctor about your pain? Let us know in the comments.

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