by Heather Grace, IPJ Staff Writer
In honor of National Invisible Illness Week…
While few people really understand chronic pain, even fewer understand intractable pain. First let me start with a simple explanation of the categories of pain. There are three basic types of pain:
(1) Acute – you hurt yourself and are in pain, right now. This is a common event and happens to people several times throughout their lifetime.
(2) Chronic – often occurring when an acute injury does not heal well, chronic pain is intermittent and/or persistent. It can also be severe, and last for long periods of time.
(3) Intractable – the place no one wants to ever get to, when pain is both constant and severe. Meaning, all the time, every minute, every day.
For people with IP, it can be hard to sleep, to eat, to take care of daily activities, to do much of anything for yourself. Many people are bed-bound, hospitalized and overall, very critically ill. Even with pain management, once you get to the ‘intractable’ stage, pain is almost always irreversible. A common cause of this level of pain is nerve damage, created when an acute or chronic injury is not treated promptly and effectively. A mistake many medical professionals make? Denying pain medication, leaving a patient suffering in excruciating pain. If the patient manages to survive, he/she will often live with intractable pain the rest of their life.
Now, here are my 30 things you may not know about my invisible illness…
1. The illnesses I live with are: Reflex Sympathetic Dystrophy and Central Pain Syndrome, which are in the category of intractable pain.
2. I was diagnosed in: 2007
3. But I had symptoms since: 1999
4. The biggest adjustment: Trying to cope with the fact that my head and heart want to do things that my body cannot do. It can be very upsetting.
5. Most people assume: that people who say they are in pain are really just fakers or drug addicts. Talk about pain! Having family and friends listen to media reports and not understand that the general public, and even many health professionals have no idea how to diagnose or treat my condition–that’s rough. Stigma sucks… I’m just a seriously ill person, no different than anyone else with a severe, life-threatening systemic illness. Btw, if I could find a treatment that didn’t involve any pain meds, that is the treatment I’d use. I hate to be under a microscope because of the type of illness I have. Seems really unfair, and also in violation of HIPAA!
6. The hardest part about mornings: Just being able to fall asleep and get enough rest is hard. My body typically won’t let me sleep until the early morning hours, and by that point, I am exhausted. Even so, I can only sleep comfortably for four hours, on a good day, without getting up out of bed. I sometimes dream enjoying a lazy day in bed… it’s an impossibility for someone like me!
7. My favorite medical TV show: I’ll probably get some nasty-grams for saying this, but it’s House. I enjoy a good diagnostic puzzle. When I can solve the puzzle, when I know what the illness is, I really love it. I realize that House is often unkind to people with pain and believe me, I’ve written letters. Many letters! My dream is that IP and/or Lupus (which seems to be a running issue with the show), are spotlighted, for once!
8. A gadget I couldn’t live without is: my Blackberry. Yesssss! Love my baby so.
9. The hardest part about nights: getting to bed, ever, during nighttime. If I do sleep at night, it’s typically an hour or so, around 11pm and then, I’m wide awake for hours afterward. Nerve pain is a big ol be-otch!
10. Each day I take: you would be shocked how many vitamins, minerals, supplements! Let’s just say it’s enough pills that I could pour them in a bowl and eat them with a spoon! (Not that I would, gross!) Over 50, every day. We’re talking sublingual Pregnenolone, Vitamins B, D, C, Folic Acid, then DHEA, GABA, Taurine, 2 multivitamins, 3 hair vitamins, MSM, glucosamine/chrondrotin and oh so much more! Yes, a small number of my intake is prescription, and out of those, a portion are pain medication, but most of my regimen is about controlling nerve symptoms and ensuring appropriate amino acids and hormones to fight my pain naturally. And, of course to prevent a heart attack or stroke, a condition I also have called Cardiac Adrenal Pain Syndrome.
11. Regarding alternative treatments: I have mixed feelings. I’ve tried plenty that are a bunch of hooey! Any product that uses the word “pain” and the word “cure” together? Please don’t believe the hype. But, I do all I can to minimize intake of prescription medication and manage my pain naturally. Massage can be nice but for me, it’s too much because of my nerve damage. As stated above, I love supplements, and try and and all recommended by my doctor, so long as I have the resources to do so! I also use pain sprays and balms, to loosen tight muscles and prevent severe headache and body pain. Exercise is also important for all people with pain, because if you don’t use it, you lose it. Just walking some days is enough, but if I am up to it, I like to swim a little and of course, stretch. Nothing fancy because my body responds poorly when I overdo it–could be useless for days! As for trying new options? I go with advice from the doctors I trust, and/or knowledgeable pain patients I know/trust, to find appropriate treatments. Otherwise, it’s all a shot in the dark and often, a ton of cash down the drain!
12. If I had to choose between an invisible illness or visible: I’d choose NO THANK YOU! Are you kidding?! I mean, ok, visible would be easier in a lot of ways. However, “visible” for people with pain often means you’re wheelchair-bound or at least require a stabilizing product to walk, such as walking stick or cane. When I am well enough, I don’t need these stabilizers, and I am so thankful. Neither visible or invisible is exactly fun!
13. Regarding working and career: I’m an Advocate, first and foremost, these days. I also blog, use social media and sometimes do more, when I am physically able. It’s a struggle, and I cannot work a full 40-hour work week, but I know I am blessed to be able to do the things that I do!
14. People would be surprised: that I am in pain 24/7. Can you even imagine that? No joke! Try falling asleep when your arms are burning or you have a pounding headache and your muscles are in knots. It’s my everyday, people. Every darn minute. Yeah, it’s surprising–until I lived it, I had no idea it was even possible!
15. The hardest thing to accept: everything is challenging in ways most people don’t understand. Some days, people cut you slack, but before long, they ‘forget’ and are getting upset if you aren’t as capable as someone who is not in pain 24/7. I realize at times I over-promise. I know that in my heart I want and intend to do everything I say I will. But at times, it just doesn’t work out that way. It sucks to disappoint others, especially because I am super hard on myself. I cannot stand it when I disappoint someone. I was so Type A before, it isn’t in my nature to give anything less than 110%. And, how realistic is that, when I can only give 65% on a good day? I’m trying to find balance, and help others understand my limitations, too. Not the easiest thing in the world to do!
16. Something I never thought I could do with my illness: oh, so many things! Laugh til my stomach hurts. Use a computer again for more than 2 seconds. I find that my abilities change all the time. On one day, I may not be able to do anything, because my whole body hurts. The next day, I feel like Super Girl, cleaning the house like a whirlwind. The next day, I pay for it. And the day after, and the day after that. A few days later, I am blogging, shopping with family. Doing more advocacy work. It’s ever-changing, dealing with intractable pain.
17. The commercials about my illness are: Hmm. Well, I know of one. For Grace did a PSA with Jack Coleman on RSD/women in pain. It was great. But to my knowledge, there have never been any about Central Pain Syndrome. Or, for that matter, intractable pain. Maybe in the UK, but certainly not here! APF has done a lot of online stuff, but nothing on tv, that I am aware of. If there are more out there about chronic/intractable pain, someone please let me know!
18. Something I really miss doing: being young and doing crazy things on a whim… like a road trip, or a theme park, or hiking. Those things are just way too hard for me these days. I had so many things I wanted to do, but my pain started when I was in my mid-20s! I miss rollerblading all the time, that’s for sure. Even did some with my dogs. It was a blast!
19. It was really hard to have to give up: having a family. It sucks to have your illness make up your mind for you, rip the choice right out of your hands. I mentioned this at a family get-together earlier this year, and two people there looked at me, shocked. They were women in their late 40s, both who had nearly grown children. They said, “You still have time! Plenty of time!” I didn’t go into detail about the WHY, because if they didn’t get it, I wasn’t going to bring it up… this wound is so deep that I often just put it out of my head. If I talk about it too much, the tears inevitably come…
20. A new hobby I have taken up: blogging, social media! I love it, and it feels like I can reach so many more people, even if I am home, feeling sick and not able to go anywhere. It’s great as a tool to help others, as well as to get support myself…
21. If I could have one day of feeling normal again: I HATE THIS QUESTION AND REFUSE TO ANSWER IT. “What ifs” make me way too emotional. They are detrimental, honestly. It’s not fair to ask someone who is seriously ill to answer a question like this, because it’s very painful. Try being young and looking fairly healthy, and inside, you feel like you’re older than your grandmother. It sucks.
22. My illness has taught me: to be better to myself. To accept the things I cannot do and love myself anyway. At least, on a good day, I can do that!
23. Want to know a secret? Having intractable pain is really hard. It just is! I know I’ve become a stronger person, and I know that I can handle way more torment than the average person, as a result. But when it’s gone on for so long that you have no idea what it is like to be pain-free? It’s devastating. I find myself crying more easily, allowing people to see more glimpses of the cracks in my armor, the longer I have dealt with constant, severe pain. Especially on a tough day. So, if you see me crying? Know I am having a really hard time and just need a break–please!
24. But I love it when people: care enough to ask how I am and really want to hear the answer, not just the standard reply, “fine.” I am so thankful for the people close to me, who are there for me through good times and bad. Because let’s face it, the bad times can be pretty darn awful!
25. My favorite quote that gets me through tough stuff: I’ll go with the classic poster of a kitten hanging from a tree with the phrase: “Hang in there!” Kidding! Honestly, there’s no one thing that gets me through every single rough patch, but I do appreciate kind words from loved ones, soothing music, gentle hugs, a really silly comedy on tv, puppy kisses, occasional junk food, and yes, even a motivational quote or two. But right now, I just don’t feel like going all Deepak Chopra. So sue me 🙂
26. When someone is diagnosed: I am an open book. I share whatever I can, to help them. I remember being alone and afraid and not knowing what I was going to do. Losing everything, little by little. I would tell them to take advantage of the resources that are out there, by experts. I have 4 great ones at the top of http://www.thepainstore.com/articles.html. 🙂
27. Something that has surprised me about living with this illness: honestly, that I am still here. I’ve been mid-suicide more than once. The pain has been so severe, I was going to end it, right then. After surviving the worst, I found out that the many heart palpitations I’d had and the times I was nearly passing out? Those were my body nearly shutting down. People who are not treated quickly and effectively for intractable pain typically die within a few weeks. I am lucky–really lucky–to be alive. I managed to escape the clutches of Cardiac Adrenal Pain Syndrome (CAPS) throughout the worst of my uncontrolled pain. Most people with IP end up dying from a heart attack or stroke, when their heart and adrenals can no longer deal with the constant pain signal. This is CAPS. I’m living with a rare category of illness that I was supposed to have already died from. I know that it’s a miracle that I am here, and as a result, I owe it to everyone else with IP to share what I know, to help when I can… to be there for people who are seriously ill, like I was, hanging all alone at the end of my rope!
28. The nicest thing someone did for me: I’ve gotten a whole new family of support! Really! They gave me the greatest gift, by being there when no one else was… When the chips were down and I’d lost all hope, all faith in humanity, and even in God, I decided to go to just one last doctor. I told myself, even before that visit, “If he can’t help me, that’s it. I will find a way to end it, once and for all.” I was tired of the suffering–seven years worth! The kicker? This doctor didn’t just help me with my medical issues, he gave me the greatest gift by introducing me to the sweet, supportive wonderful advocate who would become my new sister! She’s truly helped me get back on my feet, after the pain had wore me down to nothingness… I am so grateful, to the doctor and to my sister for saving my life!
29. I’m involved with Invisible Illness Week: It’s part of Pain Awareness Month and anyone who is healthy enough should really be out here, fighting for all the people who are too sick to fight. It’s important to be doing this advocacy work, right now. Until everyone has timely and appropriate access to pain care, our work is not done!
30. The fact that you read this list: is so SO WONDERFUL! Thanks for reading it, but I hope, even more, that you will take the time to write your own! Or, if you aren’t a person with pain, know that it is precious gift that you read this! Whoever you have in your life with pain, they are very, very lucky. Reach out to them, and support them, do all you can… so that every person with pain is well enough to enjoy life again. Help him/her rebuild his/her broken body and spirit, and be joyful again!
One more thing… I hope you enjoy National Invisible Illness Week and Pain Awareness Month, one and all! *Please* keep the advocacy work going, all year long! -HG 🙂