Today is my son’s preschool graduation. I should have woken up and been able to join in the excitement with him. Instead I wake up with that feeling of dread, anxiety and disappointment. Not because of the graduation, not because of my son… but because yet again I won’t be present for another important event.
I’m going to go… I’m going to be physically present but my mind won’t be. You see I am one of the millions of people who suffer a silent torment. A kind of pain that no one even knows about because it’s disguised so well. I look healthy… I seem normal. But a huge part of my live has been controlled and destroyed by chronic pain.
I added it up…. I have missed approximately 1560 days of my life.
1560 days
which equals 52 Months
which equals 4 years.
I’m 34 years old and I have missed nearly 4 years of my life… To WHAT?
I know you are wondering….
What is Chronic Pain?
My definition of Chronic Pain is physical pain that occurs so frequently that it disrupts your daily life and ability to function on a frequent basis. Here is an amazingly long list of different conditions that fall under the term chronic pain.
Chronic Pain the Serial Killer of Life
Since I was 8 years old I have experienced debilitating migraines. These types of headaches often occur in clusters and can last up to five days and can sometimes re-occur. When I have a migraine episode my life stops. I go from a fully functioning happy person to a person that can hardly speak, walk or function.
I am rendered useless.
I can’t explain how much pain these headaches cause other than to say I tolerate A LOT of pain but these migraines will bring me to my knees begging for mercy. There are many days that I would just rather die then live another second with that level of pain.
Besides the unbearable pain, I often feel extreme amounts of guilt. Because as the migraine progresses my attitude declines. I am NOT a person you want to be around. My kids have suffered, My Husband has suffered, My employers have suffered… EVERYONE around me that relies on me for something is at the MERCY of this ailment.
The headaches can be so bad that there have been days where my older son had to take care of the younger one. There have been days where my child sat in bed with me on the Ipad all day. Simply because I wanted to make sure he was safe as I faded in and out of sleep. There have been moments that I have been utterly convinced that I have a brain tumor. But alas … I don’t … I won’t die from this silent pain. I will just suffer at it’s mercy over and over and over again.
See chronic pain is a strange thing. It’s a silent manipulator. We know how we feel but others who have not experienced it can only imagine. They often try to empathize with you but often can’t because this level of pain is such an unknown. But it’s not only the pain that we suffer from it’s the guilt. The combination of pain and guilt is often times unbearable.
There is a tremendous amount of guilt a person with chronic pain feels. Not only are you having to suffer through pain but you have to deal with the guilt of not being there. Not being there for ANYONE. People sometimes may think you are exaggerating or just trying to be uninvolved and that’s the furthest from the truth. All you want is a normal pain free life. All you want is to not let people down or miss out on life around you. Sadly if you have never experienced this type of pain it’s really hard to grasp the concept.
Guilt is a huge component of living with chronic pain but what about other things that develop out of the fear and guilt. Yes, you can definitely develop other issues derived from the chronic pain like depression, anxiety, insomnia and more. For me I developed extreme anxiety. I think that the anxiety is actually being caused by things that I know can trigger a migraine. So for instance I really get stressed and anxious going in to a mall or big open warehouse type store. For a long time I just thought I was having panic attacks for no reason but I honestly think I get stressed over places that can cause a migraine. For instance in warehouse type stores like Sam’s Club their are tons of florescent lights. At the mall their are lots of perfume smells. Both perfume and florescent lights can trigger a migraine. When I think about it now I think a lot of my issues with anxiety were coming from the fear of triggering a migraine.
Treatment Is sometimes Worse than the Ailment
Sometimes the treatment or the coping mechanisms individuals use for pain modification can be worse than the actually condition themselves. Using the prescription Lexapro treated some symptoms but actually made many things a lot worse. I was so tired all of the time I could hardly function. The withdrawal was absolutely horrible… read more my withdrawal from Lexapro here.
I have found one treatment that works but the after affects are brutal. The medication I take subdues the pain to a tolerable level however the next day it is like living with SATAN. I get angry, I’m shaky, everything makes me mad. I ruin everyone’s mood that is around me. You would think I’m taking some crazy narcotic or something right? WRONG it’s just Tylenol Pm… that’s it.. it’s the only thing that has ever worked.
There is a new treatment out there well it’s not new but it’s more mainstream than it use to be. BOTOX. I can actually go get Botox injected in the base of my cranimum and temples oh wait look at the picture below I guess I can get it all over. I’ll have the youngest looking scalp and temples on the planet. 
Is it just me or does injecting a paralyzing bacterial agent in the base of my skull seem just a little terrifying. Would the treatment of the migraine be worse than living a life in pain. I’m not sure. What if something went wrong and I because paralyzed. These are all things people think of living with chronic pain. We are always think “what could be worse?” It’s actually kind of scary to think about what “we” would be willing to risk in order to live in less pain. Not even pain FREE but less pain.
What to do if you have chronic pain?
What do you do if you have chronic pain? Each case and illness is different so I can’t give you any treatment suggestions. I can however offer you this. I can offer you support and understanding. Something that people without chronic pain can’t. I believe that having a like minded support system is essential. I was BLOWN away when our Facebook fans became so support of each other when I asked who lives in pain? Read all the entries here on our Facebook . See the love and support. It made me feel so good knowing that there were other people in the world that actually understood my battle. Let’s fight this war together please tell us your story in the comments section below. Let’s help each other through support, love and kindness.
I also use these tips on how to keep calm here 25 keys to calm. Getting in to these habits can help me focus on what’s important especially on my pain free days.
Did you just say my name? Yes I live like this every day. Never knowing what this day will be like until I wake.
I know the anger, frustration, resentment, pain, agonizing, debilitating pain. I eat, sleep and breath as fast as I can because I know that the brick wall is lurking right around the corner.
I have migraines as well. But diagnosised with RSD in my leg, Chron’s Disease and chronic heavy metal poisioning by consumption.
The most frustrating part of this is that no one really know what damage has been done by the arsenic in our well.
But I will live life full throttle until……
Oh boy Hope! I feel completely understand what you mean doing everything so fast in life because you never know when a bad day will happen. And a good day is like a miracle. It’s like you have to go in hyper speed to make up for all the days you’ve missed. It’s exhausting. It feels so good to hear others stories because at times it can feel very lonely and frustrating. Hope thanks so much for sharing with us!
I know about migraines and I want to offer hope. I have listened to testimonies of many many people who have tried nutritional cleansing with much success. I personally suffered for many years and I no longer suffer like I did. I get one maybe once or twice a year now since starting cleansing 2 years ago. I would love to send you some information to you.
I have Fibromyalgia and Neuropathy, I live every day in pain and have weakness that comes and goes. What bothers me the most is when I am struggling to get out of my car and someone demands to know just how am I disabled, just because I made use of the handicapped plates on my car. Or being told to “suck it up and quit being lazy” by people who think that, after schlepping all over the grocery store, I should also run the risk of not getting back to my car just to bring the empty cart back up to the store. Or, being told “it must be nice to not have to work” like its some wonderful prize to try to live off of Social Security Disability payments. Trust me, I would rather work! My income got cut this month due to Govenor Scott Walker of Wisconsins budget cuts. I went from $1004 to $640.50 a month and LOST my food stamps and Medicaid premium coverage. So, yeah, I’m so faking it to get the drugs, because a few dollars worth of drugs make up for the uncertainty of not knowing where I’m going to get enough food to get through the month, or money to pay for rent, gas, clothing and my meds.
Teresa I can’t imagine and I hate that people eve question you it’s really none of their business. IF people only knew that it wasn’t being lazy and what we would all give to have back all of our days that were lost due to pain. I know when I am sleeping off a migraine it may look like I”m being lazy but that’s the last thing I want to be doing. Bless you!
I have chronic pain, daily pain, as well. Having dealt with everything from migraines, TMJ, and having being diagnosed with fibromyalgia, I appreciate your care and honesty. The guilt part is so true. Sending love to everyone who deals with chronic pain!
Lori, THanks for sharing. I can’t imagine those of you that have chronic pain every single day. I am one of the luckier ones that only have chronic pain 5 to 10 days of the month. I know a lot of people with fibromyalgia and the stigma and false rumors can make it even harder for those of you with it. It’s so nice to have support from each other thanks for joining in and sharing your story!
I have MS and after many, many years of intense pain in my legs found an unusual cure! A few days after eating the first ones about 8 yrs ago I haven’t had pain. I have to eat a spoonful each day. Gin Raisins are my “miracle cure”….you can Google them
I have known a huge number of people over the years who have had great relief with virtually no side effects from migraines using Botox. Not sure why you are so scared because they have been doing these treatments for 15 yrs now and they are very effective.
Hey Jan That’s awesome so glad you found something that works for you. I guess I’m scared because I have yet to find a treatment that does not actually have a worse or equal to side affect. Basically when I take tylenol pm I have mood changes, when I was on Lexapro I was basically unable to function due to being so tired. My fear is going through a procedure or taking medication that again may be effective but causes side affects. It just gets exhausting. I hope that makes sense. I’m not actually afraid of the pain of injections or even the risks it’s more about the side affects. But I too have heard they work well so it’s not out of the realm of possibility for me to try them. THanks for sharing your story. Lesley
You have brought tears to my eyes!! Not because I suffer but because you do and I am so very lucky to not have any chronic pain. My mamma suffered from headaches but they weren’t migraines — I believe they were more tension.I began the day sort of wishing for this and that — now the only thing I wish for is that you find you and countless others find a cure. Big Hugs to you and I will remember you in my prayers.
Thanks so much Marisa. I think for me I don’t ever want people to feel sorry for me I am so healthy and fulfilled in so many ways. I really consider myself one of the lucky ones that actually gets a break from the pain. I guess helping people understand when we can’t fulfill obligations that it’s not just an excuse or we aren’t just be lazy or dramatic. I really appreciate your time reading and thinking about all of us out there that live in pain. You are a super sweet lady!
I do not have chronic pain but live with seone who does! Just wondering if you have ever tried taking Neurontin?
Neurontin is not one that sounds familiar. I have tried so many over the years I’ll have to look in to it.
Please do! It was a godsend for my family member! It would be something you would have to take everyday, not just on headache days but it could possibly keep them at bay! I sure hope it helps if you decide to move forward and try it! A neurologist might have to prescribe it? Not sure. Good luck!
Lesley, I’m so sorry that you suffer and have to deal with this. I do have a young friend who has suffered with migraines her whole life and she resorted to the Botox injections at the base of her skull. It has worked wonderfully for her along with frequent massages. Hope you can find some relief.
That’s so good to hear botox is working for so many. I am definitely considering it. It’s kind of getting to the point where if it does work then it would be worth the risks or the side affects (if any). Thanks so much for taking the time to comment. I know you remember the days of my Mom going through this as well. 🙂 And she was lucky to have so many supportive friends like you!
Such an excellent description of chronic pain. I’m sorry you’re in the position to write about it. I have a Chiari 1 Malformation, which along with a host of other unpleasant things, includes daily headaches. Some days are better, some are worse, and I go through Advil in the Costco-sized bottles.
Honestly, the worst part of chronic pain for me is rarely the pain itself. The guilt, frustration, anxiety, and depression that comes along for the ride is harder to accept. Knowing that I will either have lifetime pain or brain surgery (or both) is less than encouraging to think about. Luckily, I had a friend that understood chronic pain and encouraged me to see my doctor. The Cymbalta I take now has tempered the anxiety and depression, as well as the nerve pain. I’ve heard the withdrawal from it is also awful, but at this point it’s working for me so I refuse to add that to my worries.
I love when people share their stories though. Pain can make people feel so isolated and alone.
I agree, for me the pain although excruciating is the least of the issues. The anxiety, worry, disappointment and frustration is far worse. I can’t even count how many life events I missed or suffered through in my lifetime. This of course disappointed my family and friends. It so hard to not be able to have fun and be yourself especially during the times that are suppose to bring joy. Don’t get me wrong I feel so badly for those around me that have to deal with Lesley having “another migraine”.It’s not their fault and yet they have are affected. It’s just all around hard on everyone. It makes it so much better to hear other’s stories and know that none of us are alone.
I don’t live with chronic pain and I can’t even begin to imagine what it’s like. I know, though that you are so courageous and brave for sharing this in such a vulnerable way…you will touch thousands of lives and it’s my honor to know you and love you and witness your courage every day. 🙂
Aww! Thanks Cindy. I hope that we can all just get a better understanding from each other’s stories.
I just received this email and I am now in tears. I relate so much to this article. I don’t have migraines, I have Lupus, Fibromyalgia and some other illnesses as well. All of them cause pain, but mostly the Lupus and Fibro have made it impossible for me to work. I completely agree that the worst of this is missing out on life. I take Ibuprofen for my pain. I will not take narcotics as they don’t work on me for pain. I can no longer wear fitted clothing as many materials hurt my skin. I have awful skin and muscle pain. My husband and I have separate beds because when he moved, I would get shooting pains throughout my body. I have lost so many aqaintances due to this pain. When I get invited to a function, more often than not I end up calling to say I won’t be there because I can’t dress. The loneliness is very upsetting to me. People truly don’t understand what this is all about. People who know all about my illnesses and the resulting pain, still will ask how come I don’t feel well! Then I explain all over again what is causing it and I hear…Oh yeah, I forgot. I take a medicine for depression as a result of all of this as well as cognitive therapy. I am very fortunate that my therapist will participate in phone sessions as there are many times I can’t dress to go to her office. I apologize if I sound like I am just complaining. That is not my intention. I have just never had a place to explain my experience with others who have such pain. I have the same guilt and anger that others have expressed. Of course that doesn’t help things either. I have found that, for me, learning to tell myself that caring for myself properly is loving myself and showing respect for myself, over and over again to relieve guilt. It has helped me confront the anger as well. Thank you for listening. I can’t express in words how grateful I am to have found this article and to have had the ability to express my experience.
Peggy I am so glad you have found a place to share your story as well. I do not think you are complaining AT ALL this is exactly what I want you and others to do… I want you all to have a place where we can all support one another. There’s so much more to chronic pain then the pain itself. And I know people try to understand but truly it’s just nearly impossible if you have never experienced it. It’s really not their fault that they can’t understand however it doesn’t make things easier. I want us all to continue talking about this subject so they’ll will be more article in the future.
Thank you so much for the supportive reply. I really appreciate it. Is your wish to have people support each other on this ‘page’ or is there another url where you have a support group?
On this page would be perfect that way others that find the article can read the comments as well. THanks 🙂
Hi Lesley, I’m so sorry to hear that you suffer from migraines! I have never had those but my mother suffered from them when she was young. There was a time when I had severe tension headaches which would knock me out of commission for a day or so. You’re gonna think I’m crazy, but I would sniff rubbing alcohol and get instant relief. Long story about how I got that tip, but it worked for me! I would like to encourage you to try the Botox treatments even though the thought of them is scary! Hope you find relief soon!
Oh now the rubbing alcohol is something I have never tried but I’m willing to try it. I am totally considering the Botox treatment the more and more I hear of them being so successful.
I’m so very sorry. I do have migraines as well but not as debilitating as yours. I have insomnia as well which affects everything in life. Our life of 24/7 crisis for so many years destroyed my health and since we’re in the middle of another crisis my husband is struggling with depression. IT IS HARD. I have just started using Essential Oils (not a sales pitch 🙂 and am interested to see how they work for my migraines. Have you tried everything? I use Atenolol and Desipramine for my maintenance meds and Maxalt for my rescue medicine. PM me if you want to chat about it. Your courage and your transparency are refreshing.
Hey Marty .. I feel like I’ve tried pretty much everything but the Botox treatments. Maxalt and Imitrex never worked for me unfortunately. I tried essential oils as well and they didn’t work either. THanks so much for sharing your story too!
I am sorry you are dealing with this. My daughter and I both suffered from migraines before we were diagnosed with celiac disease. We no longer had them after eating a gluten free diet. Taking magnesium supplements at bedtime helps many people also.Wheat, sugar, caffeine, food additives and many other food items can be a trigger for migraines, along with hormones, stress, etc. Have you ever considered trying an elimination diet such at Whole 30? I have heard many migraine sufferers say it helped them. You wrote very eloquently in a manner that I am sure helped many people. Hugs
I actually am currently on a dietary plan that really does help but since a lot of mine are weather related the diet doesn’t help completely. Eliminating sugar and artificial sweeteners really helps for me.
I have had migraine’s and fibro myalgia for 30 years. Finally left nursing after 31 years. I take topamax now and no longer have dIly headaches but still dread every weather charge, smells and fluorescent lights. try of to feel guilty..really who would choose this..
Topamax worked for me for a little while but I had to get off of it because I had extreme weight loss while using it. I wish I could find something that does work. Glad you no longer have daily migraines!
Lesley,
I too have spent many days just managing to raise my children, clean the house, or volunteering in the community.
The guilt and comments have been at times more debilitating than the pain. I was undiagnosed with the Epstien Barr virus for at least four years. It is similar to Mono. I had pain, migraines, insomnia and total exhaustion.
As I write this note I am realizing that was 20 years ago when this started. I use Zomig for migraines which works for me. I have asked my hubby to take off the right side of my head before. Silly I know but it would relieve the pain? Thank you for your bravery. Sharing your story will help many people know they are not alone.
XO,
Karen Marie
I’m so glad to know you understand as well. There are some days I don’t even know how I make it to bedtime. Thanks for your support.
I just signed up for your newsletter, not because I live with chronic pain, but because my husband does. He suffers from Gastroparesis. I find that the more I read about others who suffer from chronic pain, the more empathetic I can be for him.
But, also, I wanted to let you know from the perspective of the spouse of someone who suffers, we DO NOT HOLD YOU ACCOUNTABLE for what pain causes!!!! My husband is constantly apologizing because of the things that he can’t do/we can’t do because of his illness. This DESPITE the fact that I have N-E-V-E-R said a word about not being able to do something. I will usually admit that I’m disappointed, but I never, ever, place the blame on him. I’m sure your husband feels the same way!!!
Thanks so much it’s so good to hear a perspective from the other side of an illness. Your husband is so lucky to have you and your support!