This card is to go with my post on How to Use the ER in Case of Chronic Pain Emergency, which has gotten over 50k views in just under a year! I never thought anything I wrote would be shared to facebook 10k times, or viewed 50k, or shared all over Pinterest, or anything remotely close to that, honestly, especially in my first year of blogging. I’m so thrilled and so thankful for the opportunity to share what I have researched and witnessed firsthand about living with chronic illness, chronic pain, disability, and mental health challenges.
I will be hunting down more relevant alert cards and posting as I find and edit them. Please feel free to leave suggestions in the comments below, and I will do those first!
#ehlersdanlossyndrome #emergency #alertcard #justincase #infographic #chronicillness #chronicpain #EDSawareness #EDS #hypermobility #dislocation #subluxation #JHS #hointhypermobility #hypermobility #severepain #EDSalertcard
the above image is from Chronic Illness Cat and the below article is taken from EDS Info, a wonderfully informative blog for any chronic pain sufferer, which you should all go check out and bookmark and return to often.
UNTREATED CHRONIC PAIN IS ACUTE PAIN
CONSEQUENCES OF UNTREATED AND INADEQUATELY-TREATED PAIN
PAIN SUFFERERS ARE MEDICALLY DISCRIMINATED AGAINST
CHRONIC PAIN IS A LEGITIMATE MEDICAL DISEASE
A thoughtful, well-made list of extra steps to take when you are experiencing a flare-up of symptoms, no matter what illness(es) you may suffer from. The author, Audrey, was diligent about this list and surveyed others to get a more complete array of options. I feel like there is something on this list for all of us, and as Audrey says in the post, “Because, let’s face it, when we are in the throes of a serious bout of turmoil, we forget. We forget to reach to those resources we so carefully crafted, selected. We forget the hours we poured into trial and error sessions to find what works best to help us and when.” She is so right. I love having a place to refer to when I am hurting so bad I can’t steer my thoughts away from the illness and pain. Even if I don’t feel capable of doing everything on this list, I can always do one thing, and the more I practice these techniques, the better I become at accepting and making peace with my illnesses.
Maybe someone else could use it too?
Chronic illness warriors are great at pushing through, but as we all know, that is not always the best or healthiest option, although sometimes it seems like the only option. Pushing through can lead to a flare up that sets us back for days, weeks, or even months. Rest is a real job with chronic illness. No matter how we may be feeling, even if it’s better than usual, every single day consists of maintenance and making difficult choices that can help or harm us in the quest for balance. Most of the choices you have to make are things the people around you cannot understand. That makes it even more difficult to prioritize our own well-being in stressful situations.
To all those who wrestle with the guilt surrounding being chronically ill or in constant pain, I am right there with you.
Love you guys!
Introducing the free mental health resource 7 Cups of Tea to anyone who hasn’t heard of them before.
If you need someone to talk to, any time, this is a great website to save in your favorites. All chats are anonymous, and you can either connect to the first available listener or find someone who fits your needs from their list of therapists and listeners.
7 Cups of Tea is a safe, non-judgmental online space to talk it out with trained active listeners. You can even connect with a therapist or active listener whose specialties are of interest to you or your particular situation. There is also group support if that is more your style.
7 Cups also offers a set of thorough self help guides to consult, including self-help for chronic pain, as well as for anxiety, college life, and even one for entrepreneurs who are struggling with their start up companies. There are a wide variety of topics covered, you may be surprised to see a self-help guide for something you thought not that many people struggled with. They keep an expanding library of articles about specific mental health topics, such as this post on Mindfulness.
There is a lot to see on this website, and a lot to remind us about basic self-care during the tougher times in our lives. The self-help guides might seem repetitious for spoonies and those living with chronic pain, but our mind plays tricks on us when we are at our lowest, and the simplest of ways to practice self-compassion and healing slip through our fingers. That’s why it’s a useful website to bookmark and visit often, even when you’re not planning to chat with an active listener. I have added 7 Cups of Tea to my Chronic Illness Resources Page. Any online resource like this is just fabulous, and this is one of the best I have found. Plus, it’s FREE, and free is an awesome price. Especially for those of us who are prohibited from working by our illness or pain.
Volunteer Opportunity Alert:
If you’re looking for a volunteer opportunity that you can do any time from home, this may be perfect for you! They are always looking for new Active Listeners to train so that more people can receive one on one attention.
If anyone has any suggestions for self-help websites or free online therapy, please leave the URL below in a comment and it will be added to my Chronic Illness Resources Page.
So You’re Healthy, and You Want to Date a Sick Person?
Like, Really Date? Here’s what you need to know:
Millions of Americans suffer from chronic illnesses. Millions of young (<35) Americans suffer from chronic illnesses. And, millions of young Americans suffer from chronic, invisibleillnesses. I’m one of the third kind, and if you’re healthy, and want to be in a partnership with someone like me, this containssome of what you need to know.
1. Think about it. Are you sure?
If you said “yes” before beginning this sentence, the answer is actually “no”. For the good of all of us: if you enter into a relationship with us, you have to: 1) be sure you want it, and 2) ensure you’ve spent at least ten hours finding out about disability, and the illness(es) in question. You have to think about it. Are you going to be okay leaving something you really wanted to go to because they’re not feeling well? Are you going to be okay with many late night ER visits? Do you understand that they may never be able to, or want to have, kids? And, it’s on us (hear that, sick people?) to try to explain what it’s like to be the partner of a sick person. Hopefully I can do some of that work here.
*That said, take forums made for disabled people with a grain of salt, because they’re generally not representative of what daily life would actually feel like
2. Try to understand, and to really understand. But most importantly, internalize that you probably never will be able to.
We have to deal with a lot of well-meaning but misdirected “advice” every day. Some of us hate it less than others, and some days no matter how little it bugs us it will probably send us into a tailspin. Understanding that we are having an experience entirely foreign from the one you live is the best way to minimize advice coming from you.
Some things we do don’t make sense, and we can’t communicate it to you. Why is it that I can lift a box, but not wash off a fork? I don’t know how to explain it, but that doesn’t make it any less true! Also remember: “Third party perspective” is an invaluable resource, for any relationship. If you’re going to be in the relationship, it may be good to find a few other people who are also SOs of people with invisible disabilities.
3. We will always be highly variable, and occasionally inexplicably variable.
Some days, we feel good enough to make plans. Occasionally, they are ambitious plans. However, that does not mean that that should form an expectation. If I say that tomorrow I want to do research on how to start that company I had been thinking about for ages, and tomorrow comes, and I’m not doing it immediately, it’s not because I don’t want to start that company. It’s because Ican’t. And yes, believe me, I know I said tomorrow I would do that.
But here’s the thing: we don’t have any idea what tomorrow will look like. Sometimes tomorrow looks like a warm breezy September day. Other days, tomorrow we wake up and the first thought we have is “Wow, I actually feel like I’m going to die.”
4. Understand that one of the biggest hurdles is that we do not look like we are sick.
Even to ourselves! If I look healthy, society expects me to act healthy, you expect me to act somewhat healthy, and worst of all, I expect me to act healthy. I feel like I should be able to do all the things that normal 20-somethings do, except that doesn’t happen, because impossible things generally don’t happen. Cue me feeling guilty, and blaming myself. And no one else understands, because I don’t look sick, and because, why would anyone ever complain about not being able togain weight?
5. Don’t judge us for how we medicate.
Do you have any idea how long it takes to get into some of the specialists we need to see? Months and months. If my body is breaking, and it’s going to takemonths for me to see someone who may even have a possibility of starting to fix it, you bet your ass I am going to be forced to self-medicate. Yes, even the “scary” medications. Let’s take opiates. Sick people are not addicted to opiates. Sick people take opiates to be able to function. Every sick person I know has been able to stop opiates cold turkey no problem after they’ve finished a round of needing them. But guess what? When you need them, you fucking need them.
Accept that you don’t know what it’s like. And, accept that the stereotypes don’t apply in this instance. We’re not doing it to be “doped up” or forget our problems. We’re doing it because although we acutely know what our problems are and would take a good doctor’s appointment over vicodin in a HEARTBEAT, we also know that that appointment is a long way off, and we need to not be incapacitated. I’ll let you in on a secret: it’s kind of like a competition within ourselves to see how long we can go without taking something that will make us feel better. Today I cried because I felt like a failure for needing pain medication.
Also realize that things do not work the same way in our bodies or our brains. Normally, I am extraordinarily uncoordinated, and fall often (without reflexes). When I’ve had sedatives, I become not just graceful, but exceptionally clear-headed compared to before. Brain fog: it’s a thing, it comes from pain.
6. Don’t have your primary desire be as a caretaker.
Some of us want partners. Of those that want partners, sometimes we will want to be taken care of. But, regardless of if we want you to be our caretaker, it is not a good idea to start a relationship with one person’s primary role acting as caretaker. The difference between taking care of and being a caretaker is enormous. Self-sufficiency is important, and it’s a skill we all have to learn. Sometimes, we will need help, and we will call you. But dependency is easy to fall into and hard to get out of, and it will destroy your relationship.
7. Sometimes us being sick will suck, a lot, for you too.
Sometimes we will be on medications that change our personality. If we’re on steroids, we’re probably going to be cranky. Some of us have Raynaud’s, partial seizures, vagus nerve dysfunction, adrenal dysfunction, and other conditions which can make us temporarily moody. Most of us don’t sleep well. Most of us have a hard time with food.
If you’re lucky, you’ll be dating one of the kind that is pharmacologically self-aware, and they will be able to tell that something is making them some way other than normal, and try to fix it. Unfortunately, some of us don’t know when we are acting differently, which is compounded by the fact that most of us have so many possible explanations for everything that it would be very difficult to find the culprit. And sometimes, we can’t change it at that moment. You don’t take steroids unless you need them. It’s also pretty hard to balance your hormones.
8. No sympathy. Empathy, but never sympathy.
Do not ever fall into the trap of what I like to call the “adversity inferiority complex”. This is when you compare my problems with yours, decide that yours are less worthy, and hold them in. This is a recipe for disaster. Partly because it breeds resentment, and partly because it’s actually a lot easier for us to help others with their problems than to always focus on our own. So a lot of the time, we will be happy to help you, even (and maybe especially) if we are feeling shitty, because then we have something else to focus on. Also because if you truly want a relationship, the only way you’re going to be able to have one is to go through things together. And trust me: we want to hear about your struggles.
It should be established that if we’ve hit a major threshold and just can’t, then maybe there can be a safe word that means “I really can’t right now, but I want to very much, can we schedule a time to talk later?”
9. Talk with us.
Talk with us about it a lot, and take time making this decision. Because if you do, it requires a lot of trust from us. And as a sick person, Trust is both the scariest thing to give out, and is a finite resource.
10. Most of the time, when you think we’re mad at you
We’re worried you’re going to leave, because we’re sick.
Despite all of this
Most of the time it will be like being in a normal relationship with any two people who like each other. Every relationship has hurdles. These will be some of them. That doesn’t mean that most of the time, you will even be aware we are sick. But, these are things you need to know for those times.
My Response to YesIReallyAmSick on Tumblr:
The author totally hits the nail on the head, especially the last part about when we seem angry. I was with my boyfriend for years, actually planning a future as his caretaker (he had been told he needed major hip surgeries spanning a few years of total recovery time), before my car was hit by a semi truck on my way to work. After my initial 50% recovery in the first six months or so, slowly I went downhill again, until I finally became too sick to work or ignore what was going on any longer. Our story is a little different in that we were both healthy when we started dating and living together, and in the same year, we both had life-changing medical happenings, and not in the good way. Suddenly, my boyfriend and I found ourselves unable to work normal jobs or participate in life as much as we would like. Young, sick, and in love. How hollywood. Except it is nothing like a movie.
The relaionship started out so classic; chubby goth nerd girl dates tall former football player. I fell in love right away, and told him so, but it took him another year to decide he wanted me too. We never dated like regular people, even then. We hung out in our apartments with friends and at friends’ apartments, we cooked eachother food and drove around the city aimlessly, because we were too broke to go to bars, and we didn’t ever do the dinner and a movie thing. We have spent every single night together since the first night, except for one this last year in which I slept at home while my boyfriend was in the hospital overnight after a surgery. Our first date was five months into our relationship, just before we moved in together. It was a camping trip, our first together but one of many to come. I think I surprised him by actually knowing how to throw a baseball. And by how much I wanted to hike, explore, and never go home. Things are so different now, and it almost hurts to recall the person I once was.
I worry about the toll it takes on him to be picking up my prescriptions now, taking me to appointments because I have lost the ability to do so myself, remembering what I cannot remember while I am talking to my doctors, and most of all seeing me in pain and miserable and not being able to fix it like he fixes everything broken. For his sake, I wish I did not have this long list of medical problems, but for my sake I am somewhat grateful that I do, something I cannot explain fully in this post, but which I try to convey through most of my other writings.
The major downside to falling for someone while living with a chronic illness is that it is heartbreaking to know I place limitations and higher-than-reasonable expectations on the love of my life. He is going back to school since he cannot work his old labor intensive jobs anymore, and we live off of his financial aid, which will have to be paid back eventually. It’s not a glamorous life, we are broke, broke, broke, and what money we come by goes towards medical supplies and prescriptions, for both of us, but mainly me. Money is a thing that unfortunately will limit our plans as well, because I am truly sick and I cannot just skip picking up my medicines, even though they sometimes come out to $800+ out of pocket in a month. This is not what I imagined. This is not what I planned for. This is not what I worked so hard for. But it is reality. And feeling sorry for myself is not my style.
Therefore, in our relationship I do not regret all that we have been through together. I know without a doubt that he loves me, that he will stick by me in sickness and health, and that I will do the same for him. Many couples do not have that bond, and again, I defer some level of gratitude to my illness.
The divorce rate for those with chronic illness is very, very depressing. It hangs around 75% of marriages. So many relationships destroyed by the difficulty of fulfilling the vows they exchanged: “In sickness and in health.” I hate those statistics. I hate that I am fighting those odds now too. But I love the man I am with, and I have seen him do whatever it takes to be with me, and he has seen me do the same for him. I have slept for a month on the couch while he healed from his surgery in a hospital bed in the living room, during a massive flare up. I did not struggle to make the decision to do so, because if he needed me I could not hear him if I slept in the bedroom, and at that point he needed me often. He has driven me an hour each way to appointments even while his hips are killing him. I have cheered him along while he chose a new career path and went back to school, and I have supported unquestioningly his need to take a few semesters off for grief and for surgeries. He has supported my difficult journey and allowed me to find my voice and my way again post-diagnoses, even when it meant getting fired from my job and beginning the terrifying process of applying for disability as a 20-something recovering workaholic.
To say that we are dating is a white lie. We are nesting, we are living together, we are committed, but we do not get to “date” each other like other couples do. We have not been out to eat in over a year, easily. Our frequent camping trips, which I always considered the most romantic dates of all, have become one night mini-adventures, which we both suffer from disproportionately and can only manage once or twice a year. Our long drives to nowhere to look at houses and gaze at scenic areas of Oregon have stopped. Our couples-daydreaming of a future on a farm have ceased. When we talk about having children of our own or adopting, our eyes hold bittersweet, cautious hope that we can still make real the dream of little ones, no matter what happens.
Our future is murkier now. Will I be able to carry a child to term? Will I be a good mother? If he needs more and more surgeries will I be able to care for him, and children, when I often can’t even care for myself? Will my condition ever allow me to bring in money again? Can I homeschool and make everything from scratch or is that ridiculous? Is there a way to minimize the impact my illnesses have on my lover and my theoretical future children, without compromising my treatment? Will I deteriorate further the older I get? Am I sure I can’t just snap my fingers and get rid of all these issues, go back to the way we were and the innocent daydreaming of a happy, hard-working, fulfilling life?
Yes. I am sure. But only because I have tried it a few thousand times to make certain.
I am just like you. I want to go hiking this summer, want to drive to the desert, or the coast, or the mountains spontaneously. I want to work hard and play harder. I long to have ordinary twenty-something nights; to once in a while get drunk with my old friends and run around downtown in the rain in heels, with no coat, until 4am. When the radio plays a song that stirs my soul, I get excited and daydream of concerts and dancing with abandon while all the hipsters stand there, swaying to the band with their hands in their pockets. If friends and family tell me about their relationship issues or financial struggles, even their aches and pains, I have a deep well of empathy and understanding no matter how bad I am feeling. When people tell me to buck up, pray harder, or stop trying to attract so much attention with my illnesses and injuries, I am furious. Wouldn’t you be angry if you had channeled your over-zealous work-ethic into trying literally everything to cure yourself, from conventional to the very odd? I have a right to be furious if people insinuate that I am lazy or not trying hard enough, or that I want attention, nevermind that I worked a year and a half past the point of spending most of my days sobbing or trying not to sob while working because I just hurt so much. I did not choose my broken body. Every small task feels like a marathon to me, but on the surface it’s not possible for most people to see how much I struggle with small daily activities that others take for granted.
I still have ups and downs in my moods that have nothing to do with being ill, but I also have moodswings that are out of my control, either from imbalances in chemicals in my body, or from medications I take. Talking to me with an open mind is the only way to find out which it is. Sometimes I don’t even know I am acting strangely.
Every day I have to ask myself if I can really allow the person I love so much to suffer along with me. I have to ask myself if he wouldn’t be better off finding a healthy girl who can bear him the children he so badly wants and take care of him like he deserves when he is hurting. Someone not so damaged would be great for him, right? But that is the voice of insecurity and it takes up real, vital energy to worry, and we are in love. That is all I need, I hope it all he needs too, I trust him to choose what is best for himself. The fact that he loves me and I love him holds the answers to my painful questions. I would so much rather focus on the love between us than the uncertainty the future holds. Unfortunately these thoughts and fears do resurface often or I would not be writing about them at all.
To be honest, I am often scared of losing the love of my life to sicknesses that I never wanted. I am scared because the man I love can get up and walk away. I cannot. I am stuck with it, with the late night ER visits and furtive internet research on my conditions. with medications that I hate taking, with horrible insomnia and a libido that disappeared completely, with support groups and symptom logging, with severe, non-stop pain that changes my personality and rewires my brain. I am bound by a very finite amount of energy each day and there are dire consequences for overstepping my energy envelope. I cannot opt out of this delicate balancing act (or disastrous mess, depending on the day), but my partner can. Yet, he chooses to be by my side.
The trust has to be immense between us to make it work in a long term sense. The communication has to be from a place of equality and respect, and it can never stop happening, or the relationship essentially shuts down too. We have very ordinary couple problems, as well as very specific troubles relating to illness, grief, disability, and pain. Our relationship has been through more than most sustain in a lifetime of marriage.
Talking about chronic illness and its effect on our relationships is hard, because love is vulnerable. There is so much at stake. There is a person we cannot bear to lose, or a potential to meet and fall in love with someone we cannot bear to lose, and our illness absolutely will impact that person negatively at times. That is not the stuff of the average happily-ever-after, but it is mine.
I do not regret the powerful sway that love has had over my life in the last six years of coupledom. His heart is something I would not trade for wealth, for wisdom, or even for wellness.
Still, I worry, because even the strongest relationship is not perfect, and I have added so much stress to our lives by becoming ill. Stress that just isn’t healthy for anyone. I care about and love my boyfriend deeply and do not want to be the one part of his life that holds him back from finding his own happiness. It is a delicate and complex balance to communicate with my partner enough, about the right things, while somehow not over-sharing all the time. I’m terrible at the balancing act between too much and not enough information right now, and that absolutely causes problems. That is just one tiny example of the difficulties of putting love into action while dealing with the cards dealt by chronic pain and illness.
I found this quote on Tumblr and immediately had to make a simple text image out of it. The original source is listed at the bottom of the image, but in case you want a direct link to the post, here it is: http://wheresagnes.tumblr.com/post/113095286140/self-care-is-not-a-bath-bomb-nor-is-it-a-face.
I also wanted to announce that I have joined Tumblr, under the same name as this blog, FindingOutFibro, and I will be trying to make as many images related to chronic illness as possible.
It’s so awesome to have Photoshop back, even though it’s like learning to use it all over again from scratch now because it’s been ten years, and even though I have to pay $10 a month for it (ugh… seriously Adobe?), I am still just happy to have a playground for all my visual ideas and a place to brainstorm my logo, header, media kit, and other branding stuff for my new business. It would probably be a good idea if I gave some thought to doing that on this blog as well.
Is anyone interested in me posting a Resources for Bloggers page with links to collections of free photoshop brushes, fonts, public domain image databases, patterns, royalty free background images and photos, html coding help, and links to a huge variety of goodies I have found as I go? I think a lot of people with chronic illness are intimidated by the thought of starting a blog. I certainly hesitated for a long time, but wish I hadn’t been so overwhelmed and had been able to start sooner when I still had a little more of my old energy. I want anyone who is even considering starting a blog to have all the tools at their fingertips to be able to get their voice out there into the world with the least amount of stress. Not that I know very much about this blogging stuff, just that I’ve been keeping track of the resources that have been useful for me as I get started, and I would love to share!
More reality checks when it comes to chronic pain and opiates, via a super smart fellow blogger! So happy to print this and put it in my medical binder for those idiots who think I should just suffer endlessly, needlessly, and be happy for the privilege.
It’s just so wonderful when people form an opinion based on facts and not histrionics.
Hooray for using our brains!
Pain & Opiates: Perceptions vs Reality
1. false: Opiates take pain away completely.
TRUE: Opiates do not remove chronic pain, they do not numb pain like Novocain, they merely dull it enough so that it isn’t all-consuming.
2. false: Pain is the body trying to tell you to stop, so you shouldn’t take opiates to cover up the pain signals.
TRUE: Normal pain is an alarm to take action, but chronic pain happens when the alarm gets stuck in the “on” position – the switch itself is broken.
3. false: Opiates make you dull, confused, and non-functional.
TRUE: When used for pain relief, opiates allow people to be more active and functional, get out of the house and socialize, sometimes even continue working.
4. false: There are other pain medications that work just as well as opiates.
TRUE: Opiates are the most (and often the only) effective medications for pain.
5. false: Opiates have severe and permanently damaging side effects.
TRUE: Opiates have fewer and lesser side-effects than most of the other medications prescribed for pain.
6. false: You will get addicted if taking opiates.
TRUE: People taking opiates for pain are statistically unlikely to become addicted unless they already have addictive tendencies (5% chance). However, regular use of many medications causes dependence after your body has adjusted to them.
7. false: If you take opiates for too long, you’ll get hyperalgesia.
TRUE: Opiate-induced hyperalgesia is extremely rare in humans, and this scare tactic is based on just a handful of very small research studies.
8. false: If the pain is constant, you’ll get used to it and it won’t hurt as much.
TRUE: Pain that is allowed to persist uncontrolled leads to changes in the nerves that can eventually become permanent.
9. false: Opiates work the same way for everyone.
TRUE: Different people get the same amount of pain relief from widely varying dosages because our bodies are all different in the way we “digest” opiates.
10. false: It’s better not to take opiates because they damage the nervous system and cause hormonal imbalances.
TRUE: Persistent pain results in the same kind of damages to the nervous and hormonal systems.
11. false: You should not take opiates because your pain won’t improve.
TRUE: Chronic pain can only be treated, not cured. Opiates are often the best means available to treat the devastating pain symptoms until a cure is found.
12. false: If you start taking opiates, you’ll just have to take more and more forever.
TRUE: Most chronic pain patients finds a stable dose of opiates that works for them. If doses need to be increased, it is usually because the pain condition gets worse over time.
13. false: People only want opiates for the high.
TRUE: When taken as prescribed for chronic pain, opiates do not make you “high”. The same chemicals that make illegal users “high” go toward dulling the pain instead.
14. false: It’s better to tough it out.
TRUE: Denying people pain relief sentences them to a life of unnecessary suffering.
= = = = = = = = = = = =
“The patient uses opioids to relieve pain and maintain a normal relationship with the real world; the addict takes opioids to escape from reality.” – Ronald Melzack
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Many people disabled by chronic pain are unfairly accused of lying and faking, so here’s some myths from that category too:
1. false: People who complain about chronic pain are just trying to get SSDI.
TRUE: Most people disabled by pain desperately want to work. Many had to give up high-level, well-paying positions and now live in poverty on SSDI. There may some fakers, but this is not a reason to deny SSDI for truly disabling pain.
2. misleading: If injured workers are given opiates they are unlikely to return to work (statistically true)
TRUE: This is probably because their injuries are serious enough to cause chronic pain and require opiates, not because the opiates are keeping them away from work.
= = = = = = = = = = = =
1. Source for addiction statistic:
Printable Awareness Ribbon Chart
The website goes into much more detail, as well as noting extra conditions that are covered under each color/color combo. I’m thinking about doing all of the colors with each condition written on the ribbon in photoshop so that we can all save and post according ribbons if we want, without any confusion.
This search started, by the way, because a friend of mine from high school had posted a yellow ribbon as her facebook profile picture, and I wanted to know what cause she was representing, and the answer ranged from suicide awareness to bladder cancer to liver disease to supporting the troops. It wasn’t written on the ribbon, plus no clues were given via description, and that frustrates me. What’s the point if no one else knows what cause you are trying raise awareness for?
Anyhow, I will get around to that, but if illness interupts it could take some time. Hopefully I can make a resource page on this site where people can save a picture of the ribbon matching the condition(s) they have, to add to the bottom or sidebar of their page. And yes, when I do this, the first will be one for Chronic Pain all by itself, since many of us do not know why we are dealing with what we are dealing with, and many of will never know.
I might know a lot of you who fit into the “rare diseases” white ribbon, in which case, I want to make you a ribbon with your specific disease or condition or struggle, and you pick the color. Just drop me a comment, any time, either on this post or on the page I create later on. Post to come soon, hopefully with the first ten or so ribbons that are requested. I might do a poll on ribbon styling too…. it would be my first opportunity to use that option on WordPress!
Happy creative Saturday, friends ❤
I’m glad we all made it. This week felt like it just would not end, and I got next to nothing done. Hopefully this weekend I can shift gears, but I seem to be setting myself back with these big pushes when I get one slightly better day. Just so bored with this!!! I hate tv, so I’ve been trying to entertain myself other ways, and it’s hard! It’s only going to get harder when I ask my doctor for a heart rate monitor to keep track of my energy levels as best I can for a few months. Any time the damn thing beeps, I have to sit down. Doesn’t matter if I’m climbing the stairs, I gotta stop, sit down, record what time it is and what made it go off, and let my heart rate go back to a lower range. It sounds pretty frustrating, but who knows, it could provide me with some much-needed evidence-based data to share with my doctors, or it could provide me with just enough data to teach myself to live within my “energy envelope”. If you want to read more about heart rate monitoring and the logic behind it, check out these articles:
Distraction Therapy and Art Therapy, rolled into one happy technique for doodling away the pain. I really do love this idea and immediately decided to go buy a few of these coloring books for adults!
This is one I sketched with pen and meticulously colored in with cheap watercolor pencils so as not to go insane while I was working at the Oregon Museum of Science and Industry, in the theater, in the dark, well before I had this kind of chronic pain or illness:
I totally remember how calm I felt while I did this and think this might be a new favorite distraction technique. Big thanks to Moongazer for the wonderful idea and for sharing it with everyone!
Distraction Therapy was first mentioned to me by an Occupational Therapist after my surgery but when I asked her for ideas (expecting her to have loads up her trained professional and experienced sleeve) she basically shrugged at me and googled ‘meditation’
So it is worth sharing snippets and suggestions amongst ourselves, methinks.
I find that sometimes, especially during a flare up of my FM, when the pain pills aren’t quite enough, sleep isn’t happening, and I am either too ‘foggy’ or bored or just plain restless for other things to occupy me – there is something I sometimes turn to as a distraction.
I have actually ummed and ahh’d a bit over posting about this, because I imagine there are people out there who might find this amusing, silly perhaps. But I saw another post about it the other week and decided Stuff it!! I will write about it.
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Just another short and sweet, easy to print explanation of what even minor long-term untreated chronic pain can do to a person. A person without any other troubles or illnesses. Most of the issues discussed in this article are less life-ending types of chronic pain, but that just serves to further reinforce the point that any kind of pain if left untreated is unhealthy; it can trigger long-term issues with depression and anxiety, even rewire the brain, and can make it difficult to process even mildly disruptive daily events, such as bad traffic.
That is not nothing.
So many of us are in kinds of pain that are so far beyond this little pamphlet from a pain clinic, but the people around us often are not as aware of the little things that go awry when pain stays for too long and is not recognized and treated. I thought this was kind of a nice review for people who are new to thinking about or dealing with illnesses that involve never-ending agony.
Sorry, ignore me, I’m still not able to get this flare up under control, and it’s starting to scare me when I read about others who had their “Big One” in the onset years of their illness that lasted 6-12 months.
Do. Not. Want.
Even a good day is a fight for every positive thought; every scrap of willpower woven together so tightly just to do normal people tasks, inside my own home. On a good day.
Here’s the article:
Even minor pain, such as a stubbed toe or a paper cut, is unpleasant but that pain fades relatively quickly. Imagine being in pain that never fades, or that fades only to come back a few hours later. What would that do to a person? This is what people with chronic pain have to deal with every day.
Chronic pain, a diagnosis including arthritis, back pain, and recurring migraines, can have a profound effect on a person’s day to day life when it goes untreated. People dealing with ongoing or long-term pain can become irritable, short-tempered, and impatient, and with good reason. Constant pain raises the focus threshold for basic functioning, which leaves the pained person with a greatly reduced ability to find solutions or workarounds to even relatively mundane problems. Something like a traffic jam, which most people would be mildly annoyed by but ultimately take in stride, could seriously throw off the rhythm of someone who is putting forth so much effort just to get through the day.
Getting organized with chronic pain is no small task. But it is necessary on so many levels. One of the major secrets, the dirty untalked about secrets of the chronically ill, is how hard it can be to stay on top of even basic daily tasks no matter if you’re having a good pain day or a lousy one. Being disorganized can make it hard to take spontaneous advantage of the good moments, because we often feel overwhelmed and out of control all the time. Reducing mental clutter is the antidote, or at least part of it. Since I didn’t exactly start out organized, it’s been an uphill battle, one I probably wouldn’t have been prepared for if I hadn’t been fending off chronic pain and illness for years.
I have always had some pretty wicked ADHD that I hid throughout childhood with a high IQ and a love of books. I could still focus, sometimes really, really well, but only on things I deemed interesting and not too intimidating. As a kid that wasn’t such a big deal, it just meant I never progressed beyond my fifth grade abilities in math, and that I almost never turned my homework in. Somehow I still managed to be a merit scholar in high school and get mostly good grades. At the time, I used my then-resourceful brain to figure out how to navigate around the many daily challenges brought about by a complete lack of focus. I did so by setting up reminders for myself, making tons of lists, setting alarms on my phone, sticky notes on the walls, writing on the back of my hand long after it was considered socially acceptable, and generally learning how to fake that I had my shit together.
Unfortunately, my ADHD and forgetfulness have only been getting worse as I age. And then, lucky me, chronic pain and brain fog got added to the mix just over three years ago. Even worse, the IQ that I used to rely on seems to belong to some other person I barely recognize now; my brain feels walled off from me by layer after layer of cotton. Every now and again I get a glimpse of the old me, the smarter me, but it happens less and less.
Eventually, it got to a point where I couldn’t stand by, watching my brain wither in front of me. For the longest time, I was finding myself frustrated to the point of tears, often multiple times a day. Not from pain usually or even frustration about how long I had been in pain, but instead from how hard it was to remember even basic things. It was an adventure, a frustrating one, trying to keep a thought in my head long enough that I could find a pen and notebook and jot it down. I love lists, but all of them summed up, spanning several different notebooks, often scattered about the house and used by other people… it was all starting to drive me insane, not to mention take up too much space and time. I was losing very important information like appointment times, phone numbers I needed, receipts, everything was getting lost!
The definition of insanity is doing the same thing over and over again, so I decided to stop crying about my frustration and start trying to make changes. I downloaded about a dozen different To-Do List apps, all free, all promising me increased productivity and less mayhem. The first few I tried just made me angry. No way to reorganize the list, clunky slow programs, things that worked on the tablet but not the PC and the other way around, no way to keep crossed off items visible, no way to make different lists or different subheadings within each list. I was just wasting more time, and getting more frustrated. Keeping digital lists seemed like it was not going to work for me. Then I started using ToDoist, and for the first time I had some hope for an organized brain, and a few more glimmers of the old me!
Oh so many notebooks have been saved from my scribbling and constant list-making by this app! I downloaded it specifically to keep track of each online earnings website I am a member of. It has made the whole experience of making money online manageable instead of the complete mess it would otherwise be. Under the website names, I list each task I do that gives me a confirmation number to keep track of, and I keep my earnings up to date on each website. I also keep track of how many times I have cashed out on each website, what referral programs they each offer, what requirements there are such as cut-offs for cashing in, and the date of pay out if they only do so once a month, as well as due dates for canceling trial memberships.
With my newly downloaded app in hand, I started transferring my piles of written notes and ideas into organized sets of lists with subheadings and due dates where appropriate. It took a while, but I finally got all of the most important info about my life into the app and I am so proud of myself! I use it multiple times a day because it syncs across my tablet, phone, and laptop. It saves itself every time you enter a new line. A major bonus to me is that you can share projects with friends or invite them to help you finish a list, which is perfect for the at-home business I’m starting with a good friend in the beginning of 2015. Consistency is usually a problem with me, especially with the ADHD, but once I see a benefit, it’s hard to go back to a less efficient way of doing things. Right now I’m using the ToDoist app constantly on all my devices while I brainstorm, when I think of needed groceries, and to keep an organized, up-to-date list of medical information, in addition to a current list of my online earning activities.
I really have been striving this month more than ever before to be as organized as possible, and ToDoist helps me because it makes keeping track of my whole life so automatic and easy. Using ToDoist to record everything has allowed me to let go of the nagging thoughts that were occupying my brain so I have more room for the bigger stuff that really matters. Sold!
In general, I feel much more in control now that I am using ToDoist instead of keeping four or more different notebooks with me all the time and still not being able to find that one thing I need. Plus there are keyboard shortcuts to help improve productivity with the app even more. Love!!! I am still going through all my really old paper lists, like pages of handwritten records of what seeds I have saved for my veggie garden, and pulling information I need out of them to put into the app. This whole process has been the second best thing to replacing my broken, useless brain with a new, improved, cleaner, less anxious one. Going back through those old lists I can see all the things that I have accomplished in the last year, despite all the brain fog and frustration, and I am not feeling as hard on myself as I was before I saw all of that progress on paper.
Another nice feature of ToDoist that keeps me organized is that I can add due dates to each thing, and then I can easily see what out of all my various projects is due today, this week, and later on this month. Once I cross something off, it stays on the list, just in a lighter shade, until I delete it purposefully. That is perfect for me, sometimes I need to see all the steps I have taken previously in order to figure out a project. Having due dates for posts I’m writing, like this one, has helped me focus first on what needs to get done each day instead of floundering for hours, wondering what I should be doing. I’m considering that alone a huge victory because my brain fog often will not let me remember something long enough to even find a pen to write it down. Sometimes I used to spend hours looking for something I completely forgot to write down in the first place. This is much, much, much better!
Plus it’s free!
Here’s the official website:
And the Google Play store link: