I’ve been mulling over how to address this very directly for a few weeks now. As I am watching friends go through the same questions that I have faced in the past, I think it’s time to spell some things out. If you have a friend or relative that has an autoimmune disease like Lupus, Rheumatoid Arthritis, Multiple Sclerosis, or other invisible illness like Chronic Fatigue Syndrome, Lyme Disease in chronic stage, or neurological conditions like Fibromyalgia and Dysautonomia… I don’t say something like this often but I am BEGGING YOU to take the time to read this blog entry. If you truly care about that person, take a few minutes out of this one day and inform yourself about what their day will be like today. PLEASE.
I want to encapsulate as much pertinent information as I can here. It does however require some insights that may be foreign to the average healthy individual. I cannot ask you to put yourselves in our shoes, because you’ve never been in them. You can only use your imagination and then from there take our word for it about the things that you have not fully experienced. I will also add that I genuinely hope that everyone reading this that has not experienced one of these conditions NEVER DOES, and I mean that. I literally would not wish my life on my worst enemy (and I have some people out there that I can actually say that I hate.. as strong of a word as that is.)
I have written before what my day is like from the time I wake up and the tedium that goes into each move and decision. I won’t detail it the same way again, because it’s already been done. I will shorten it here by saying that as a Lupus and Fibromyalgia patient, with autonomic dysfunction and other comorbid conditions, every single finite detail has to be approached for what it is singularly, when a healthy individual can execute several in one smooth motion. I don’t open my eyes immediately. I don’t sit up suddenly. I don’t hop out of bed and walk anywhere without first sitting up for a minute to see how I feel, then stopping again once I am on my feet for the same reason – before taking one step. Imagine your whole day having to be analyzed that way whenever there is a change in activity, venue, or position. If I have been in the chair at my desk for more than a few minutes, when I stand up I have to be careful. My blood pressure drops 20 to 30 points (medically documented) and people with that condition are at risk for passing out. It’s called Orthostatic Hypotension, and happens with something called Postural Orthostatic Tachycardia Syndrome (POTS) which is a Dysautonomia condition. This is Dysautonomia Awareness Month, by the way. You might want to take the time to look that up and learn a little. It is neurological, and incurable – just like the other diseases I’ve mentioned. They can all only be treated and managed, and most of them are progressive. At the very least, some of them cause progressive symptomatic manifestation, even if they don’t cause direct damage to the patient’s body. The stress caused by lack of sleep, lack of REM sleep, difficulty absorbing nutrients, adrenal exhaustion, cardiac strain, dehydration, constant firing in the central nervous system, and more than I could possibly name here has a deleterious effect on you. It’s debilitating, even when the disease itself is not considered progressive and debilitating (as with Fibromyalgia). The human body can only endure so much strain over time. Things begin to break down. Other diseases and damage creep in. In the case of something like Lupus, internal organs take damage during flares because the immune system is attacking healthy tissues in every possible system in the body. You cannot predict where it will attack either. Sometimes it takes time to find the problem and try to get it under control. This is why some Lupus patients end up needing chemotherapy as a treatment. Their immune system is so over-active and out of control that it has to be severely suppressed. That’s to keep us from… you know… dying. People die from the complications of Lupus every day. It’s that blunt.
Now that I’ve explained the basics of the diseases… here is why it is disabling enough to stop a lot of us from holding employment. Let me first say that I applaud anyone that is able to work, and I hope you continue for a long time. Your strength is admirable and I’m happy that you have your conditions managed well enough to allow it. For our healthy friends, we’ll address what happens with those of us that can’t, when we can’t. One preface: This is variable for some people. Sometimes a patient is able to go back to work and continue for a while, and then they crash again. Sometimes it’s temporary and sometimes it’s not. Autoimmune patients tend to be overachievers, people that started working young and were driven to continue for many years without a break. People that started college young. Women that excelled in fields that are primarily male-dominated. Many were athletes. We tend to go until we drop. When that happens, it’s a hard crash. We tend to ignore pain and fatigue because it’s just in our nature to do so.. but when you ignore your body’s signals, it can cause a lot of damage. Most especially in the case of a disease that is as destructive as Systemic Lupus and it’s friends. To be clear, there is no way to mediate how this disease will eventually manifest to any sufficient degree. It absolutely IS progressive, even when caught early and treated early. The only thing you can do with a medication like Plaquenil (what I take) is slow it down, and how much you slow it down depends on the individual – things out of our control entirely, like genetics, environmental exposures, the weather, and the randomness of the disease itself. We only have control over a few things and I encourage other patients every single day to do what they are able, from eating right to exercise and reducing stress where they can. That’s important for regaining and maintaining quality of life. It is not however a stop sign for Lupus. We’re all on a timer that we have some input for but no real control over. It’s also… just that blunt. Those of us that have the disease are fully aware of it even when we don’t discuss it openly. We are trying to enjoy the years we have with as best quality as we can get without dwelling on the future decline we may face.
To interject before anyone thinks it, this is not the same as the normal decline of age in a healthy individual. We face all of the things that you will but sometimes 20 to 30 years earlier than we should, and more of them together than the average healthy individual. It’s a storm and it arrives too soon. Please don’t try to compare it to your normal aging experience. If you already had your healthy youth, then you don’t know what it’s like to miss out on that.
Just as a side thought… When our acquaintances keep asking intrusive questions about WHY can’t you do this, or WHY can’t you do that, it makes us have to stop and think about the negatives a bit too much. I don’t mind people asking questions about my illness and I am an open book. My entire world however is about awareness and advocacy. This IS my job, along with taking care of me so that I can stay functional enough to create the awareness videos and other projects. I have committed to that alone because I am able to do that. I do it for everyone that cannot. Some people can’t do what I do, and all they can do is try to manage their symptoms and the progression of their illness in silence. Don’t push them too hard. They may be more fragile than you realize. Words hurt. Disbelief HURTS. Badgering in areas where you do not understand the reasons and circumstances is not helpful to anyone and it seriously just makes you look like an ass. I can’t say it any other way. If that sounds offensive, consider it a dish back out for the offenses dished out onto us. Even if you are someone that believes in “tough love” (and I personally do, for the record), it’s not your place to chastise someone that is already fighting to survive and to keep their head above water. Unless you have actually taken the time to be an intimate part of their support system, and you have earned to be entrusted with the details of what their day is like, you honestly have no idea what you are talking about. I hate to be so exclusive, but I am being frank for a reason. I have seen too many friends being harassed and hurt by people that think they mean well.
I am not able to hold a job. If I dressed myself up and went for an interview right now, I could make myself appear qualified (other than a really out of date resume’) and lie to an employer about being reliable. I would have to lie, because I am not reliable. The question has got to be in a lot of people’s minds as to why I can hike, camp, and do other outdoor sports, and have this big project for Half Dome planned, but I can’t hold a job. This is why I started the video series this year on my YouTube channel called “The Price We Pay”. I can do it, on my own schedule, in the timing that my body allows, and then I pay for it later. Up until this year, I wasn’t sharing the aftermath. I was only showing the accomplishments to encourage others. I realized they were missing something vital about my process and not getting the full picture, and I realized that had to change. An employer isn’t going to accept you calling up one morning and saying that you can’t be in today, maybe not tomorrow or the next few days, but you’re not really sure… and it could be a few weeks or months, can’t say. That is the reality of Autoimmune Diseases in particular, and several neurological conditions as well. I happen to have some of each – that’s a common problem. We all see wealthy celebrities “forging ahead” and continuing to work as well, and they are probably spending a ton of money on the very best treatments so they can stay on their feet longer, but I guarantee you they are crashing later too. You just don’t SEE it happen. I am willing to show the world my pain afterwards, but not everyone has the emotional strength to be that honest either. Understand that on my own schedule, I can cancel a plan or activity without notice. It affects no one but me. I can decide that even though last night I thought I was going to get up early and hike, today I just can’t. I do that on a regular basis. Not everyone knows about that part; it’s not important to announce. I can also guarantee you that anyone else that you know with one of these diseases is doing the exact same thing. Again… an employer cannot accommodate that. They will not. There are a few cases where someone manages to get a work-at-home situation but it’s not terribly common. It usually requires some specialized experience or skill too, or having had the job in a location for a time first. Some people are also not equipped to meet the deadlines those type of jobs require. They may be too dysfunctional even at home to be reliable there.
There is a well-known set of statements that all of us in the rheumatic autoimmune community have seen and heard repetitively.
One of them goes like this: My friend so-and-so has that and they work full time.
Another: My aunt had that and she took aspirin and got on with her life. She was just fine.
Also: I have back pain too but I have to get things done and I power through it.
Stop telling us that life is hard. We are fully aware of that, and in fact we empathize with whatever aches and pains anyone on the planet has had to endure – probably more than you are capable of understanding, in reality. Some of us (not me) started off with normal, healthy lives, and had many years of activity and athleticism, and great memories that are now haunting us. Personally, I was born not quite right. I’ve had chronic pain since childhood and I have no idea what it’s like to have a totally pain-free day. Chew on that concept for a few minutes. You still want to be me? Do you still want all of my “spare time” to enjoy what I endure? I doubt it. I have moments where I am having fun like anyone else. You really do not want what goes with the copious “spare time” though. Trust me.
If you have never read The Spoon Theory, please look it up. It’s a great analogy that explains how our energy is limited for everything we have to get done in a day, even ordinary things that everyone does. It’s written by Christine Miserandino and a copy can be found on the Lupus Foundation of America’s website.
I wish there were a way to adequately describe to a healthy person, or someone with the usual and common health conditions that happen to many and come with age… the depth of what it is like to have an immune system that is literally trying to KILL YOU. If you’ve seen someone say that and dismissed it, you need to understand that it is not being stated merely as an expression.. like when someone says “My feet are killing me.” No. I mean KILL YOU. Dead. Your immune system is supposed to protect you. It’s a ready and armed military unit, and when it goes haywire like ours has, it will look for anything to attack. Your eyesight. Your heart (like me). Your kidneys. Your muscles (me). Your connective tissues (most of us). Your central nervous system (I have that too). Your skin. Your reproductive organs. Your teeth and gums. Your bones. Your hair. Everything is subject to attack. I’ve lost about 40% of the hair I used to have, maybe more. That’s “just” an emotional impact but I still feel it. That started before I was even 30 yrs old. Sometimes, some days, there is so much pain and fatigue that you can’t tell where it is all coming from. It’s just everywhere. Others maybe it’s one or two joints, but something still hurts. When you have neurological involvement, along with the random stabs that feel like someone is sticking you with an ice pick, you’re simply so depleted that your muscles won’t respond as needed. I can go from one day working with weights at the gym to the next day unable to crack the seal on a new water bottle. There is no way to predict these changes. How does one plan a life around that? We can’t make firm plans for anything. Don’t anyone dare try to tell me that life is random, and no one is assured of things going perfectly one day to the next. I am totally aware of that too. You however, as a healthy individual, can go to bed at night with relative certainty that when you wake up tomorrow your body will be as functional as it was when you went to lie down. Most of the time, there won’t be any significant changes in the night. For us… that is never, EVER true. Every single day is faced as a new slate with unknown factors that could be good surprises, or a month-long horror show.
This is the one reason it is so important for an autoimmune patient to learn to embrace moments and love every second of the ones that work out right. This is why some of us reach hard to do the occasional off the wall thing like a tandem skydive, or a trip that is offered to us, or any experience that we’ve long dreamt about. It’s almost a requirement for us to have a bucket list because it gives us reasons to keep breathing at times. Not every disability is visible. Having a disability also does not require us to hole up in the house, look miserable, and cut off all social contacts like we aren’t fit for humanity. Yet… we always, always have people looking sideways at us if we even dare to crack a smile or laugh at a joke. God forbid one of us goes out for an ice cream cone, or sees a movie, because we are expected to not have a life at all. We are not allowed to enjoy anything and talk about it because the second that we do, someone is there asking well if you can do that, why can’t you do THIS? If I am on my own time, and I am in control of saying when I have to stop, possibly go home, probably lie down, then you can darn well shut your mouth about what I do with my “spare time”. Having gone through the agony that I did in 2006 when I couldn’t even stand up under my own power, if I find enjoyment in something I am going to do it! Your approval is neither required nor desired.
If a cancer patient had wishes, people would stand up and cheer them on. They would say how sweet it was of people to provide them opportunities, and how brave they are for still participating in life. Autoimmune and neuro patients though? If we take one step out the door for anything other than a Dr appointment, suddenly there must be “nothing wrong with us”, and we can’t possibly be that sick. ARE YOU SERIOUS WITH THAT? Get out of here. If that’s how you think of me or any of my friends then get off my blog, get off my social media, unfriend me, and don’t ever talk to me again! I am done. If anyone wants me to choose, here it is. Those that have been there for me through the worst, and cheered me on both through that and the best… those that have proven they are trustworthy, honorable, sincere, and genuinely loving friends are deeply appreciated. You will go with me all the way to Half Dome, and more. I love you for that. Anyone that thinks any of us are faking it, milking it, or making more of it than it is, BYE. Either get educated and get with the program or GTFO. NO MORE ABUSE.
Be a grown-up. Realize that you don’t know everything about someone else’s life. Try asking and listening instead of talking and assuming. It develops character.
This is long, but worth it. What a day in my life is like…. Followed by how I choose to view the experience. I don’t talk often about the details of my health challenges in-depth, because it usually serves no purpose. I want to take the time to be clear that even my good days are not easy, and I am no different than anyone else in that regard. It is how I decided I am going to manage these things that makes a difference. Anyone can make that choice, and do it every single day. It is a daily decision.
When I wake up, my mouth often feels very dry – about as dry as my eyes felt when I went to bed the night before. I can feel stiffness in my connective tissues, from my neck to my feet. I never know which joints or muscles are going to be sore, but it’s always something. My body usually feels like lead, and I have to stretch and turn over a time or two before I feel the energy to roll up to a sitting position (the way I was taught to in physical therapy to protect my lower back). I have to wait a few seconds to adjust to being upright, and then again use what I was taught in PT to safely stand without straining my low back and my knees. Then I have to wait a few more seconds to adjust to being on my feet before taking a step. The first few steps are done carefully, so as not to strain anything in my feet, ankles, and back that has tightened up in my sleep. How many “spoons” have I used at this point? Unknown. (Look up “The Spoon Theory”, if you have not yet read it.) I make sure to drink some water first thing when I’m up as well. Low blood volume doesn’t go well with left ventricular hypertrophy (my heart condition).
At this point I am assessing how my bronchial area feels today. Does it hurt to take a breath? Am I wheezy? Congested? Too dry? I am also finding out how cooperative my nerves and muscles are as I walk down the hall to the bathroom and splash cool water on my face to ease any puffiness around my eyes. How bad does the 2nd metatarsal in my left foot hurt today (it always hurts, just how much varies)? How bad is my right ankle cracking? Which one of my knees feels unstable today? How bad is the “tennis elbow” (both sides), and do I have to be careful with gripping and lifting things today because of it? Do I need to use either of my inhalers? Which one? Is there irritation/inflammation, or is my airway feeling constricted? I never know when I wake up if it will be a bad allergy day with uncontrollable sneezing, wheezing, coughing, or not. I have steroidal nose spray, a steroidal inhaler, and my albuterol. Mix and match.
Everything to this point is also affected by the season. If it is Winter, the process is slower because the cold weather not only puts more strain on my joints and any arthritic areas, but also takes a toll on the vascular system in my extremities – I have Raynaud’s Syndrome. If it’s Summer, I may be dehydrated from the day prior (and I do drink a lot of water, believe me), or simply overtaxed by the heat. I have a few conditions that make me hypersensitive to extreme temperatures and temperature swings, as well as barometric pressure changes. I have Fibromyalgia and Dysautonomia, as well as Systemic Lupus and Raynaud’s. I am photosensitive, so I have to very strictly protect myself from UV exposure when I am out on sunny days. Sometimes those measures fail to be sufficient, and I am paying the price for it by the next day. That reaction could last days, or possibly weeks. I haven’t even made it to the kitchen for breakfast yet…. I’m still in the bathroom putting aloe gel on my forearms because they are tender, dry, and warm from inflammation of the skin. That’s any time of the year.
I have to brush my hair too, by the way. That often involves retrieving my brush from the floor a couple of times because my nerves misfire and I drop it. It might be a morning when I am just too stiff and sore to function without a hot shower before I even eat breakfast, so I may have to step over the edge of the tub to get in and out as well. That’s a normal action for a healthy person, but for me it is a place of caution. I have a sliding glass shower door, so thankfully I have a sturdy frame to hold over my head to prevent falls.. but if I don’t watch that foot lift, clipping the edge of that frame with my toes is an agony I can’t even begin to describe. I’ve done it enough times to move pretty slow these days. When you’re tired…. sometimes you just miss. Or maybe don’t miss would be more accurate. Ouch. Presumably that shower loosened up my muscles enough to make it easier to dress for the day. This is on a day that I am NOT flaring, to be clear. There are days that my only goal is to make meals, check messages, and take it easy. I just try to prevent very many of those from stacking up.
Breakfast these days is usually a fresh fruit and vegetable smoothie. I made that change one year ago, and haven’t regretted it for one second. Occasionally I will make something more “traditional” like eggs, cheese, bacon (in moderation), sometimes with corn tortillas, sourdough toast, or a gluten-free bagel. Once in a while I will have potatoes with that. Sometimes I just have a Larabar or BelVita wafers and some almond milk. What I eat, and how much I eat, varies depending on my energy needs for that hour of the day and whether or not I feel nauseated that morning – a common problem with autoimmune disease, for no definable reason. I also continue to drink more water at this point and through the rest of the day. I drink a lot of water. I have to. I have to take my heart and BP meds. I have to take my Plaquenil along the way – the antimalarial med that tones down the over reactive receptors in my body and keep my immune system in check. I also have a bunch of vitamin supplements to remember. One-a-day chewable (thank you Trader Joe’s), D3, Chromium picolinate, krill oil, bromelain (for the same reason I eat fresh pineapple almost every day – anti-inflammatory), primrose oil, ALA, carnitine, biotin (to manage my hair and nail problems)…. I’ll stop there. In that smoothie, by the way, there are chia seeds, hemp seed nuts, turmeric, ginger, and cinnamon (all 3 anti inflammatory), and cacao nibs consistently. Those are part of my necessary supplementation. So are the avocados that I eat every day. I avoid as many processed foods and preservatives as I can. I don’t eat candy bars. I don’t eat ice cream. I don’t drink commercial sodas (the rarely occasional crafted type with sugar, not HFCS). I don’t get fast food burgers and fries. I don’t go out for pizza – haven’t in many years. Does this sound dreary to anyone? I figured I would ask at this point. Think it over, and you can even post your reaction to the idea in a comment if you feel like it. I’ve posted a blog entry before of what I do and don’t eat, if you’re curious for a detailed rundown before commenting.
Does that make you interested, or repelled? I’ve seen all manner of reactions to it. One person said one time that they felt “overwhelmed”. Let me state plainly here that I made these changes over a matter of YEARS, and the most drastic changes were one year ago. No one can switch everything out overnight unless they are independently wealthy and have the intestinal fortitude of Hercules. Seriously. Finding proper resolve takes work. I’m not perfect either, but I don’t dwell on my shortcomings. There is no point in doing that. Somewhere you have to pick a spot and start there. That’s all anyone can do.
To shorthand meals, I eat every 2 to 3 hours in the day to keep my blood sugar stable. I make meals from scratch and create systems that make that easy to manage. I keep it simple. I put away leftovers after serving myself a reasonable portion. I am not compelled to eat what I do not need to eat – food is a utility for fueling my body, not an emotional event.
To shorthand the rest of my day… everything continues a lot like the morning that I described. I have to decide what clothing is comfortable to wear, depending on my Fibromyalgia symptoms and whether my autonomic system is dysregulating and making me uncomfortable. That could be temperature, or how sensitive my skin is, or whether my stomach is touchy. I have to evaluate my anxiety level as well – am I okay to deal with a lot of people and noise in a store, or will going there put me on the edge of a panic attack? I have to consider the weather before I decide to leave the house – too cold/too hot? Moment by moment autoimmune patients have to make decisions based on how their body has decided to respond to each little event in the day, and we have to adapt and make changes to our plans based on how the day progresses without any way to predict it. Based on prior experience, we can guess at a framework, but it often changes anyway. This unpredictable nature of the diseases we face is part of the reason that winning a disability claim can be really difficult. One day I may seem perfectly fine (and yes, I typically look fine most days like most lupies), and the next I am down for the count and it could last days, weeks, even months. It could be from too much sun, or too much unregulated activity, or a cold virus, or an allergy. It could be anything.. and sometimes nothing that we can see. I have not held a job since 2003 as a result. I cannot commit to an employer. They aren’t very understanding when you call up one morning and say you won’t be in, and it might be a couple days… or maybe a couple weeks… or a couple months, you’re not really SURE right now. Each day is new. Boy, that is the TRUTH! I never know what it will bring.
Shopping is a changing adventure. I might “need” to go to 4 or 5 stores and services. I might set out to do it, and some days accomplish that… but others, I might have to cut it short and go home after 1 or 2 stops. I may get home and head straight for a nap because my stomach is upset, or I’m just too tired to continue, or everything hurts too much. Thankfully with the changes I have made, that does not happen as often as it used to. That doesn’t mean it never happens. It is a part of life with autoimmune disease that you have to expect unexpected changes in your day. The key is not to get mad about it. It happens.
This is where I am addressing how I choose to view the events of my day. The reason my Facebook timeline and pages, and my blogs, are not full of complaints about every little ache and disaster is because I consider it the hand I have been dealt in life. I am not angry about it. If you read my posting, you know that I have said that I have had Fibromyalgia since very young. Pain is not new for me, and I don’t have a challenge-free life to look back on wistfully. That may give me a different perspective than some people have. I am still not angry about it. Why be jealous of someone else’s life? Sure, I would love to drop these issues and know what it’s like to not feel weighed down physically, but it’s not going to magically happen. So why stew about it? It makes no more sense than it does for people that jealously rage about others that achieve control, inactive phases of their disease, remission, etc., or criticize others that have a milder case than theirs. The truth is that often the ones we see as a “milder case” are not spilling all the details of their personal rough patches. They may not be as “mild” a case as you think they are. I may be that example. I’m not hiding anything. I just don’t feel the need to dwell mentally in horrors. They exist. They happen. We keep on. I can take a minute to rant about it when I feel the need, but then what? I prefer finding solutions over wallowing there. It’s how I manage to thrive, rather than simply survive. Surviving is only a starting point.
This is how I do NOT see my day: I woke up in so much pain. Just getting up is going to be difficult. I don’t feel like eating, but I have to eat. Nothing is appealing, and what I ate upset my stomach. I have to go to the store and I feel exhausted. I just want to go back to bed. I don’t want to deal with people today, and the thought of it makes me feel like crying and crawling in a corner. I went to the store, but I felt like punching people by the time I was done.. and now I have to carry everything in from the car and I’m too tired. I need to eat lunch, but I don’t feel up to making a meal now. I haven’t worked out today and I know that I need to, but everything hurts too much. The noise in the store (and someone’s perfume) was so overwhelming that now I have a migraine starting. The bills need to be paid, and I’m so stressed thinking about it that I don’t know where to start. The laundry needs done, but I just don’t have the energy to pick anything up. I need a nap. I took a nap, and now I’ve lost a couple of hours of my day and nothing else is getting done… and I’m hungry, but I don’t feel like cooking. My back hurts. My feet hurt. I have to take my evening meds.. can’t forget those. Have to feed the cat. Have to feed the fish. The lawn… the garden… they need water, and I so do not feel like it. There must be a storm rolling in because now I have stabbing nerve pains and I just want it to STOP. Cooking dinner means washing dishes.. and I don’t feel up to either one. I’m tired, but I can’t sleep. I keep waking up… why am I awake again…?
How do I choose view my day? I woke up. I am breathing, and I can move. I may be nauseated, but I have choices in my kitchen and I’m sure I can find something. Rolling out of bed was hard, but I am thankful for the PT that taught me how to do it correctly and not make my back worse. I may be too tired to feel like going to the store, but I have enough in the bank to get what I need the most and if I don’t make it to all of my errands, they can wait until tomorrow. I will do the best that I am able today, and do that again the next. I didn’t like dealing with crowded stores, and I feel very wound up, but I’m proud of myself for getting through it and looking like a sane person in the process. Yay me! I hate carrying bags in from the car, but I got my shoulders repaired 2 yrs ago and I can do it without help now! I may not feel like working out today but I will try to do a little. If I REALLY can’t do it today, tomorrow is another chance and that’s okay too. The store was full of screaming children that hurt my ears and left my hands shaky, but now I am home and it’s quiet here. I can relax again. I can be grateful for that – and grateful for having an effective migraine medication if I need it. I can also deal with the bills one at a time and choose to breathe slowly and control my anxiety about it – what a great skill I’ve learned. I FEEL scrambled, but I can choose to take my time and sort it out. My feet hurt so I’ll take my shoes off and put them up for a few minutes. I have also learned that short breaks are one way to take care of me. Needing a nap is not a crime. I let myself do it when I need to. It’s a healthy choice. The cat, the fish, and the lawn didn’t die in those 2 hours. Nerve pains are anything from annoying to awful at times, but I can walk – maybe slower than I wish to, but I can. There was a time when I could not. Dinner can be something really simple, as long as I make healthy choices. That too is okay. I can’t sleep, or stay asleep sometimes.. but not all the time. (And you know what? When I make the choice to see my day on the level of the successes, I rest a lot better.)
I really just touched the surface of my physical issues and discomforts, even in this writing. Someone once told me when I described how sick I had been as a child, and how often, that they would not want to live that way. I didn’t want to live that way either, but they really meant they would rather die than have the life I had. That to me is not only shocking, but rude. It is as if to say that nothing I endured justified the value of my overall life, or what I may bring to others. This is also a pointless statement to make to a sick person. You do not know what you would be able to endure, or how you would face challenges, or how you would feel about it until it is YOU. My life is hard, but it is still a good life.
Are you building yourself a good foundation, or self-sabotaging? The power for that is in your hands alone. We autoimmune patients are not the only challenged people in the history of the planet, and we do not have a corner on the market in suffering. We have the exact same opportunities to strive for a better quality of life in the midst of adversity as everyone else has always had. When you hit a rough patch, scream if you need to and get it out of your system. Cry if you feel like it, and cleanse yourself. Rant about it to your closest friends that you can share with mutually, and confront the feelings. When you are done, be done. Wash your face, take some deep breaths, shake off the anger, and embrace your blessings. It’s then time to move forward again, at whatever pace you are able.
I go through time frames where I am able to do more. I take full advantage of them when they come, and it’s not because it is easy for me. It is because I choose to do it in spite of the effort it requires of me. You should see how I am when I wake up in my sleeping bag in a campsite after a cold night in the woods. I don’t move any faster there than I do at home, and in fact it takes me longer. For these things “can’t” is simply no longer in my vocabulary, and it did once occupy a space. Doing things differently and more slowly – adapting – is how I managed to accomplish this. I can accept changes without accepting defeat.
Over and over I have said that what I am doing is not easy. It is the hardest path I have chosen in my life, and every day is tremendous work, start to finish. Some days my impression is that very few people understand what that means . Hard paths are the best and most rewarding ones in life.
From childhood I have been an individual of deep thought and emotion. There are things with which I connect in ways that I cannot put into adequate words. Most of these are found in nature, whether it is adventure or beauty, and if the two are combined then all the better. It has never been in my nature to just disconnect from emotions, however I did determine a long time ago that if I do not do the work necessary to manage it, then it will be my undoing. There are times when that does not set well with others, and they do not understand why I am not being soft and sympathetic. They may think I am being cold when in reality I could be raging inside, usually because I want to scream for them to do something proactive to rescue themselves. Do you really not think I have been in your shoes? My case of Lupus might look mild to anyone just meeting me today (or anyone not paying attention). My true friends that have been there from day one, and made themselves trustworthy for my confidences, can tell you otherwise. I can accurately say that NONE of you were there when I couldn’t even stand up off the floor for months on end. That was before the support groups entirely. I went through that alone. It is part of what has made me the individual that I am today. Where do you think I built my foundation? At rock bottom, baby.
That ugly place I left behind.. the one full of agony, Vicodin, muscle relaxers, and despair… it’s been behind me since 2007. It was not however until two years ago that I really shook free of it and started to climb the rest of the way out. I know people that have never hit their rock bottom (though they may believe they have), and I know people that hit it and set up camp, and I even know a few that like me they stopped halfway up the ladder to enjoy the moderate reprieve. It’s still dark in there, and you don’t have to stick around. I am speaking metaphorically and I do that a lot. If it doesn’t apply to you, skip it. If your world is really dark.. then it probably applies.
Pain is inevitable. Sooner or later it touches all of us. Suffering is optional. I am going to keep repeating it until someone else gets it – and then some more until someone else does. If there are no military or good Veterans in your life, maybe you need to make friends with some. You can learn a lot from them, and I guarantee they will loyally be there to help you through the lessons. They’ve taken on the responsibility at it’s grittiest level to let themselves be torn down, rebuilt, molded, and perfected into beautiful strengths that only the most disciplined training can bring out of a human person. Professional athletes have to call on the same internal fire, and chose to drive themselves to new achievement for the intangible rewards it brings. We all have that choice, no matter what our level of capability is. We just have to choose to tap into it.
I grew up hearing the irritating words “the truth hurts” far too often. The philosophy was (I believe) abused. The truth is that the truth HEALS. It’s just that not everyone appreciates the mending process, and some are unwilling to accept that parts of it can be unpleasant, uncomfortable, distasteful, and even painful at times. Look at surgery as an example. Damage has to be inflicted in order to correct and repair, but it is sometimes necessary and when it is necessary then it is the right choice. Maybe something needs to be surgically removed from your inner workings, metaphorically speaking. When you hear a “cutting” truth, you react to it, and many chose to react negatively rather than to consider what is being presented. I’m sorry but I don’t have any anesthetic to present people when I am sharing concepts, and while I can mince words by choice, I tend to believe that for some people it dulls the message too much. Even in medical procedures, sometimes it just can’t be done that way. If you’re asleep when this message hits you, you’re not going to hear it. This is a wake-up call.
There is not a morning that I wake up and automatically want to get my shoes on and go for a jog. I have to stretch and move slow, and consider the messages my body is sending me. I have to converse with myself about what I want to do, what I am up to doing, what I need to push through, and what benefits and risks there are. This is after four years of treatment, the latter two including a fitness routine, two major surgeries in the midst, and a complete dietary overhaul for the last year. I will ALWAYS have to be circumspect with every move I make, every activity that I undertake, and every morsel that I consume. I committed to it because I decided that my life and living it was important to me – that I did not want to spend it miserable. This starts on the inside, dear ones. It is a decision. You cannot manifest a reality without first imagining it. There are days when I want to roll over and cry and go back to sleep. If I want the things that I desire to manifest, I do not have that luxury. This is MY choice about my own life.
Where there seems to be a problem is the reaction others have to cutting truths. If it’s not for you, then it’s not for you, but you don’t have to get upset about it in that case. Something unimportant in your world is a thing that you can walk by without a thought. If you reacted to it, maybe that’s what you need to be examining instead of getting upset at me or anyone else. When I share what I am doing, it is because I love other people enough to not want them to unnecessarily suffer. At no point have I presented anything as a cure-all for disease, but I do guarantee that you will see changes if you do the work. If you’re not willing to do that, then just admit it and drive on brothers and sisters. The hard fact is this… until you actually do what I have done, and make the sacrifices, the hard choices, discipline yourself, say no to “wants”, and stay consistent with it at length, then you cannot rightfully criticize those of us that are living proof of what can be done. You can’t have it both ways. Either admit you don’t want to do it, and accept where you are at, or make every effort that you can drag from the depths of your soul and give yourself a righteous voice with which to speak. If there were no successes, I would not share suggestions. I would not share the words of others that I admire, if I saw them to be hollow and unfounded. It is a basic truth that we are all individuals, and a disease like Lupus affects us all differently, but it does not discount the basic truths of how the human body functions. I promise you that 100% of the time how you treat your body will affect your outcome. You may not think it is enough, or significant, but it is still the truth. You are the one that decides whether it is worth the effort or not. It’s up to you.
There are people that I find quite inspiring to watch. Some of them are like me, and they have catastrophic illness to manage. Others are disabled physically in an obvious way, either missing limbs or unable to use them. Others still are amazingly fit and blessed, but they have been through horrific injuries that would make an ordinary person want to give up. Virtually all have been told NOT to do things, or that they would not be able to anymore, and they chose not to accept that prognosis. In the end, each of them has made the same choices that I did… that I continue to make. Life. Motion. Desire. Joy. Passion. Fire. Get some. Or don’t. Just don’t get mad at those of us that do. In embracing that you will be free.
It may be time soon for me to make a new video – one of me just talking to you about where I am at. Sometimes that reaches people better than plain text. You have not yet seen the changes that have taken place. I am living proof of what can be done. I am also completely sincere about wanting to help others. Truth.
I hope that my friends and family will take a few minutes to read this. I have a few important sentiments to relate to the people I love, and the people that I like but maybe don’t know that well yet too. ;-) It has come to my attention that for many people the word “awareness” can be an emotional hot button, and I have always had a goal to change the face of such campaigns. I just want to share some realistic views about who I am and what motivates me. I do not consider myself to be defined by my illness. If I allowed that, no one would ever see me out of the house. I know people that live that way. I can’t do that.
Right at the top I want to state that Lupus is not the only thing I am interested in talking about. Right this minute, I am talking about it more because it is Lupus Awareness Month. This is our time to work harder and get information out there and attention for the LFA, and it is important because we need funds to research, and we need support. Because of that, I put a 2 or 3 things a day on my profile – give or take – to that end. If it bothers you, unsubscribe. I wish you wouldn’t, but it’s your choice. To those that have been supportive and good listeners, and unafraid to discuss it with me, I bow humbly and thank you. To those that seem afraid to ask me questions… STOP IT. I am open about it for a reason, and I am not afraid to talk about it or answer any serious questions. To follow that up however, I must point out that I have always had very real interests that haven’t gone away. I love the outdoors and have camped and hiked since I was a child, and I have studied wildlife and conservation. I even had my yard set up as a wildlife habitat when I lived in Banning, and documented the great variety of species that visited and lived on my property. There is a lot more in Southern CA than many people even realize. I love to swim. I have been a dancer, though I had to take a step back from it for a long time now. I have a singing voice, and used to go to Karaoke with my parents every week when we lived close enough together for it. I am an artist – I work with pencil and water color mostly. I am a traditional crafter (Cherokee nation), so I do beadwork as well when I can. I am also an Intertribal dancer – Southern Cloth, and a Stompdancer. I have studied herbal/natural medicine, nutritional health, pathology, medical terminology, and a smattering of other things. Those are the things that define me, along with my experiences in life. The illness is something that I carry, and live with, and help others deal with as much as I can by running support networks. It is something that I work hard for awareness about because many people need it. It does not however define the person that I am today.
I am very pro on not living your life from a recliner or your bed unless you’re totally incapacitated to an inability to get out of it. Many years ago I remember Richard Simmons telling people that were severely overweight and struggling, to do whatever you are able to do where you are at. He said if all you can do is raise your arms, then raise your arms. At my lowest point in 2006, when I lost half a year to what was then an unknown ailment, I was unable to walk. I couldn’t stand up for more than a few seconds at a time. What pulled me out of the mental state that I sunk to after months on end of this was that statement… Do what you are able to do. It took a lot for me to back out of the medication cycle and find a way to manage the pain and recover. I have slipped back into that severe pain over, and over, and over since about 2001, and it is what keeps me from seeing people sometimes. When it happens, I can barely walk even in my house. It does not however take me down mentally anymore, because I know that when the flare ends the pain will subside as well.. and I can go back to a semi-normal routine again. It is not an end-point for me. It is not “where I live”. I live with it, but it’s not who I am. I try to convey to other Lupus patients that there is always hope, and it is not reserved for the hope for a cure. Hope is about each day, moment by moment, and taking advantage of each one that is such a gift. It’s about sharing your time and energy with people that you love, and savoring it.
I am reluctant to convey certain lines of thinking. I see some posts by other Lupies that are angry. Although I understand why, I can’t allow that in my life. They feel slighted by both their disease and the way they are treated by others, but to hold onto that rage will only eat them up. Ignorance is curable, after all. So the angry posts about not judging me, and you haven’t walked in my shoes, won’t come from me. I have even seen some wishing that others could experience what they are going through, and I am horrified at the thought. I literally would not wish this on my worst enemies. No. There is no point. Instead, I would rather focus on curing ignorance and helping myself walk through my days the best way that I can.
Being an activist of any sort comes with pitfalls. This thing of people being afraid to talk to you is just one of them. Another is that every time someone finds out you have Lupus, and they don’t know much about it, you end up having to explain to them that it’s not contagious. It’s genetic. Then invariably someone eventually asks you if it’s terminal. There is no short answer for that. Let me just say that birth is a death sentence. We all die. Some know better what will be their end, or maybe even some idea of when.. but we all die. Do I believe that eventually some complication of this disease will be my end? Not really. I believe that something will, but I don’t have a clue what – or when. Heck, it could be my heart one day. It’s already damaged and that could be because of the Lupus, or it could be something else. They don’t know. It could be a Mack truck. I don’t know! (I’m smiling wryly here.) No one knows. Even if you get a terminal diagnosis, you don’t know if it could end up something else before it gets to that point. We are all on mysterious paths in life. That said, my illness is fairly well managed now. I fought for that, and I fought hard. I will simply continue to do that because it is a part of my own path. It’s that simple.
I may write a descriptive soon of what my day is like. Not today. Today I simply want to say to my loved ones of many backgrounds that I appreciate those that have stood by me over the years in their individual ways. I want to say thank you to those that have taken the time to actually ask me about this “Spoon Theory” I mentioned. Your attentiveness is precious to me. Your genuine interest has been heart-warming. Believe me, it is not that common.
A few have chosen to make their own stories into their own reality. It makes me sad, but I have to move on from it. A few have decided that they know all about me and my life, and they may have read a paragraph and thought themselves well-educated. In some cases, I have been left in the dark for years as to what the problem is between us. It makes me sad to lose what I thought were friends, but I cannot change what another chooses to believe. All I ask of people is to talk to me when they have a question. Don’t engage in idle gossip and presumptions. It’s really unbecoming.
That’s all for now. All my love to all my loyal friends. You may not know how much you have done for me, simply by being there or smiling and making me laugh with jokes. Laughter is amazing. You can never have too much joy in your life. I may not be able to see you as often as I’d like (face to face), but as my sweet grandmother used to tell me.. rest her soul… “You’re thought of a lot more than you are seen.” You can believe that is real.