Stop telling people that you “think” Fibromyalgia is a symptom of something, or a “catch-all” label for something that can’t be otherwise identified. If you are a public speaker, or have any kind of a public following, you are not helping us by doing that. If you are not a physician educated on the topic, or a patient living with this SYNDROME, just stop. It has taken many, many years, and a lot of blood, sweat, and tears, to finally be taken seriously by the medical community and even a portion of the public, and it is a very definite individual diagnosis even qualifying as a stand-alone application for disability! Quit trying to drag us backwards.
Educating yourself on this topic is not all that difficult these days. This is not about conjecture and philosophizing about the causes of it. You can speculate all day long about why you think it happens to *some* people but that does not make it any less legitimate, nor does it invalidate the diagnosis and make something unworthy of proper medical recognition. It is a neurological condition. Some choose to use medication to manage it, and some of us choose to stick with natural means, but it does require management and treatment either way.
When someone with a public following makes a proclamation that they think something like FMS is some kind of emotional issue, it only makes life more difficult for those of us trying to manage it in our lives. You are validating completely uneducated and critical friends and family of ours and creating more problems that we don’t need. Do us a favor and just don’t try to speak on the topic if you can’t be bothered to catch up with current info. I am not advocating for anyone to not deal with emotional damage if they have it. Please just do not label Fibromyalgia as being solely an outcropping from something like that. The two issues are distinctly individual, and can exist independent of the other. Even if some traumatic event was the trigger that set it in motion, mending emotional pain is not a guarantee to end the manifestation of the syndrome. It shows up quite often in autoimmune patients for a reason. Nobody has figured that out yet but it IS on the suspected list for being autoimmune itself. Stop making our work harder for us.
I need to be able to trust you. I am not a healthy patient or I would not need your services. I need to be treated not only medically, but also with respect and dignity as a patient in your care. I need to be regarded as a valuable human individual, regardless of my age, gender, ethnicity, financial status, or any other defining characteristics. I have rights as a patient.
As a patient, my needs come first, not your reputation. Not your “scores”. Not your time. Not your students. Me. I am ill… and the honest truth is that when treated well, you could not ask for a better patient than me, because I want to take care of myself. It’s just that sometimes I can’t do it on your schedule, because your schedule does not exist in my daily life. Mine does. What exists in my life is bills (besides the ones from you), and expenses like food, fuel in my car, house payments, all other manner of care items from taking care of my fragile hair down to clipping my toenails that seem to be getting harder to reach each year. What’s important to me is getting my tires rotated, changing the oil, and wondering what that noise is that is driving me nuts every time I drive somewhere. Important is trying to keep dishes washed, and make sure I don’t run out of things like drinking water, healthy fresh foods, and basics like bathroom tissue and toothpaste. It’s critical that I can fill the medications I cannot go without, and get the supplements that keep me feeling reasonably functional. Those are just the financial stresses (and add into that the unexpected emergencies, and things like dental and eye care that I really can’t afford anyway). That doesn’t account for what my entire day is like, from waking up feeling beat, and trying to brush my hair without dropping my hairbrush, to worrying about aging parents and growing godchildren that I have so little energy to give time to. My day… my world… is about all of those things before I even cross the threshold of your office. You’re a blip on my radar, and yet… I give you undivided attention and time once there. I deserve the same in return.
I’ll reiterate: As an individual, you could not ask for a better patient. One of you once told me not to expect. Not to expect much recovery. Not to expect improvement. They used the word “permanent” (damage), and they were wrong. So why should I trust anyone now? Yet… I do try to do so. I have proven that I am dedicated to taking care of my health (and my heart) by proving that bad prognosis wrong. By exercising, changing the way that I eat, and taking the right meds and supplements… by doing what I said I would do. To act like I won’t is an insult, and because of my life which keeps happening when you are not around, I cannot help that sometimes it takes me longer than you wish it would to get some appointments or tests done. I don’t always have the money. I used to have great health insurance, by the way, Doc. I had it covered. Now… the insurance carrier is the only one that seems to care less than you do. I pay, and I pay, and I pay… and they don’t pay. So yes, it takes me time to set aside enough to take care of what YOU want done, and it’s not my fault. I’m doing the best that I can. I’m human. While you are considering that statement about me being human, please realize that my medical needs don’t stop while I’m struggling to meet your personal guidelines of what you think has to happen. Holding medication refills hostage seems to me to fall into a malpractice category of failure to treat. That seems to be the new practice too. “Sorry you can’t afford to see me AND refill your meds, but you have to see me… even though you won’t be able to pay for the refills I will give you after you’ve run in and out of my office several times a year.” I’d like to hear you just say it that way once to be honest. Apparently that’s my problem, not yours, so you can’t be bothered to help with it. I’m doing the best that I can… so, why aren’t you?
By the way, your veneers are great. You have a beautiful smile. I’d like to get some work done myself that is concerning so I can chew without pain. I’m willing to bet I can’t afford your dentist, so I don’t need a referral on that… thanks. But you.. you look great.
There was a time, Doc… when physicians worked with their patients and listened to their needs as an individual. Humanity has been shoved into a crate and warehoused. While I choke on my $45 copay, remembering when it was $25, you’re happily cashing in on the $450 you charge my insurance company and I guess because of that… you think it’s chump change I’m putting out. That $45 is a tank of gas. It’s a week of groceries. It’s my water bill. It’s some basic and essential need.
I live with a stress-triggered illness. You and your agenda should not be a source of stress for me. Your job is to assist me in staying well and reducing stress, but these days it seems like you are working overtime to make my life even more difficult. Try not to forget that when I leave your office, I have to go home and recover from the fluorescent lights, exposure to noise and temp changes, and unfamiliar environment, and people poking and prodding and asking intrusive questions, and feeling like a guinea pig… and I started off tired so now I am exhausted. Believing that you are at least sensitive to how this visit will demolish the rest of my day would help. I only have enough energy for just so many tasks per day. Doctor appointments cut into the energy for the next day as well as this one. That’s a big deal in my world.
In this… I am not unique. Everyone needs a care provider that actually provides care, and that they can trust, and on a daily basis I am seeing less and less provision for needs. Stop blaming “guidelines” and insurance companies and take personal responsibility for your own actions, Doc. Compassion and respect don’t cost you a dime and they should be part of your routine.
The 1.5 Million Lupus patients in the United States
I have to keep talking about this two-sided coin. I will advocate all day long for autoimmune and neurological patients deserving compassion, respect, and accommodations for their health conditions, and I am going to advocate for all of us to reach for as much as we can grasp in our lives as well. We live in a very strange zone that is unique to our very unusual health profiles. Most healthy people that we encounter are going to have a very difficult time understanding it initially. Some may never “get” the half of it.
I was very invested in watching Steve Irwin’s programs before his tragic death. His vitality and energy, and the sheer joy you could see it sparked in him to interact with nature the way that he did was just so amazing. He took chances that made me cringe at times, but I can’t be any more critical of…
View original post 3,468 more words
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.
Rheumatic autoimmune disease in particular has a habit of presenting symptoms that are unpredictable. They can sneak up and take you to the ground unexpectedly, and mercilessly. (For some people that is quite literal, not just metaphorical.) I asked some of my friends for input on this because I’ve been mulling the topic over for a few days now, and I wanted to hear perspectives. I am (anonymously) including some excerpts from that conversation here. I hear them echoing my own experiences and frustrations.
The typical patient – anyone with Lupus, RA, Fibromyalgia, Lyme disease, Cushings, MS, Sickle Cell, Dysautonomia, Myofascial Pain, Chronic Fatigue, any Chronic pain… is always dealing with symptoms. The amount, degree, and intensity varies, but we are nearly always symptomatic. With a disease like Lupus, we don’t even have a true remission. We can achieve clinical quiescence but to be totally symptom-free is not really a…
View original post 1,584 more words
I just wanted to say thank you to the friends that nominated me, and those that endorsed me as well. I appreciate the seal of approval and confidence. ;-) You’re the reason I work so hard to maintain the pages, the blogs, the groups. I could do any amount of study and research for myself alone, but it wouldn’t be as meaningful. I like to see the successes of others as well.
Just in case anyone thinks that Lupus patients have the market cornered on “stupid” or “crazy” things said to them about disease…. ya don’t! The uneducated masses out there socialize with other people too, and they have ridiculous ideas for everyone if they have them at all. We’re not special.
Here are some remarks I ran into on a popular page this morning that set me off:
I switched all my food to organic 4 years ago. Since, I have lost 100 pounds without exercise, I am off the cholesterol meds, off high blood meds, off allergy meds, my eczema and psoriasis have completely disappeared along with my sleep apnea.
[My thought on this is that someone is lying. You NEED to exercise, and unless you are a quadriplegic, you have no excuses. It doesn’t matter whether that means just taking a walk, or raising your arms over your head a few times, or wiggling your toes, MOVE YOUR BODY! If you are sitting around, doing nothing, you’re hurting yourself worse than taking a medication ever could.]
-I refuse to take drugs with their unwanted side effects. I suffer with my pain. Taking drugs to ease my pain will only kill me in another way. Nope will just deal with my pain even when it gets unbearable!
[Clearly this person has never hit “unbearable”…. I have.]
-I so agree. Pharmaceuticals scare me to death.
[News flash, your heart stopping can kill you too. Some pharmaceuticals do serve a purpose.]
-You be never had a kidney stone.
[Someone with experience and an intelligent comment.]
-I’ve never had a kidney stone, but I have a dislocated shoulder that destroyed the rotator cuff and has been this way for 12 years, I’ve also broken my back and wrist and the only drug I took was aspirin… and not Bayer as I refuse to support them.
[I didn’t realize we were in the company of such greatness. I’m not worthy. *bows down*]
You will not get kidney stones, [name omitted], if you are on a healthy diet.
[Well, if that’s not the biggest bunch of hooey I’ve heard all week, I don’t know what is.]
I believe the only medicines we need god gave us is water and vegetables. We don’t need to feed drug companies pocket when all they do, is help kill us with their chemicals.
[Belief is a wonderful thing. Let me know how that works out for you when your genetics catch up with you, because they get everyone sooner or later. Birth is a death sentence, and these imperfect bodies DO break down, whether it happens when you are 9 or 90. It happens.]
The only medicine the cures anything when properly used is antibiotics, the rest of the 250million medications in the Physicians guide only treat symptoms.. Hoping that your body will heal itself before whatever is wrong wears you down.
[I can’t even make a sarcastic remark here because that was so ignorant that it speaks for itself.]
Here is how I finally felt compelled to respond to the stream of ignorance:
[Name omitted] – and the rest of you holier than thou commenters, shame on you. I AM minimally medicated, and I AM one of those proponents of eating whole foods, anti-inflammatory, avoiding preservatives, and anything else you can think of and I DO THOSE THINGS consistently in my life. I promote it, I teach my friends about it, I live it without deviation, and it has given me back a lot of my life.
How dare any of you smart off about chronic illness, not understanding what that life is like? How dare any of you have an opinion about how someone else needs to handle their issues? Do what YOU do for YOU and stop being so high and mighty. Chronic illness, such as LUPUS (which I have, among other things) is not curable by medicine or by how you eat, either one. It requires a genetic predisposition that you are born with to even develop it in the first place, and it’s not coming from modern “agra”, or “pharma” either one, as the disease existed long before those came onto the scene. Education is a wonderful thing! Get some. Triggers that put rheumatic autoimmune diseases into motion vary, and I will only agree that there are *some* modern conventions that contribute to it, but they did not create it. In the end, the result is the same. You have a disease that isn’t going away and can only be managed. I have done pretty darn well for myself too, going from unable to walk in 2006 to I’m out hiking again in 2014. I am not however a professional athlete, and never will be. I still have to manage my energy levels, consider how I feel at each given event, week, day, even moment, while I make my decisions about activities. No one else can do that for me, and no one else can tell me HOW to do those things. It’s my own responsibility. It is also my own responsibility to now take a beta blocker because my heart is damaged. Eating right isn’t going to fix that issue, nor will it make the hereditary palpitations or dysautonomia go away. It takes *both* a medication and eating right (and knowing how to reduce stresses of all types) to manage that condition.
Some of you act like I should throw my pills in the ocean. If I do that, I’ll be dead and you won’t have to listen to me scream about this stuff anymore. I guess you would prefer that. In the mean time, I will be so crippled up that I won’t be able to walk and possibly not type much and you still won’t have to listen to me. Is that your goal? I take Plaquenil (a biologic) to manage my Lupus symptoms because my pain levels were too intolerable. Let me say this about that… I can take a lot of pain – probably a hell of a lot more than many of you. I also eat correctly now to deal with inflammation and everything else. At the end of the day however, some of us just have such severe conditions that we need a little assist. That is what medicine was always supposed to be. An assist. That’s how I utilize it. Does no one understand “happy medium” anymore? Anyone? Anywhere? Even ancient medicine as in my own culture (Native American) is still medicine and still utilizes chemical compounds from plants. I have training in that as well, but it’s not sufficient to manage what I live with. That’s the bottom line. I enjoy being able to walk. I enjoy not having my heart stop suddenly. It’s the little things, eh?
If it’s possible for an individual to entirely eschew medication, then I am always happy for them. I even have friends with Lupus that have been able to do that – for the most part. One uses the very occasional pain med when it becomes so unbearable that she cannot even sleep for days on end. Another is going through a recent flare due to terrible life circumstances, and has had to go back on some other meds TEMPORARILY. She does not see it as a permanent switch back. I respect those choices, the same as I respect the choices of those that want to just suffer (though I find it insane), and those that are able to manage without any and feel better, and those that stay on more meds because it is all that has worked for them. We are all individuals, and all on a path, and all learning, and none of us have a right to turn our noses up at the necessary decisions that others make. You are not in my shoes. You do not know my pain. You do not know how my own body and mind process that pain. It is the height of arrogance to tell someone else that they should do precisely as you have done because you have it alllll figured out. [Name omitted] is 100% correct here. Chronic illness is a beast that you cannot understand unless you have lived with it – yourself or a close loved one, either.
[Name omitted], not everything is curable or 100% manageable with eating the right food. That is a fact. You can improve your conditions, and symptoms – and I will even say that you can *always* get some level of improvement by doing so. That does not mean that it makes every single condition go away, or improve enough for everyone to function the same. We live in flawed, imperfect bodies with very individual needs. This is not a one size fits all scenario. So try developing a little compassion for the needs of others.
Why did I write such a long comment? Because I am fed up with seeing ignorant remarks like this and a bunch others on this thread. I am happy for anyone that has been able to get better results, but you all are not representative of the entire population. I bust my a** to “eat right”, to exercise (as much as I am able and sometimes more than I should and I pay for it), and adapt so I can live my life, and do more than I used to, and encourage others to do the same, and stay in a positive and hopeful mindset, and set fantastic goals, and everything else you could possibly come up with, including consuming turmeric, pineapple, avocado, and everything else you could throw at me…… BUT….. sometimes we need a medical assist. Let’s try to show some respect for those that do and stop putting them down for wanting to stay alive and be able to get out of bed in the morning. We all do what we are able and continue to learn along the way.
Yep. I said it.
We are all as unique as snowflakes. We have different DNA patterns, different flaws and imperfections, different advantages, different experiences and exposures, different environments and life paths, and our outcomes and needs are very individual. Along the way, we can only make comparisons. We can find others with whom we identify on some level, in some area, but no one is a carbon copy of another – not even identical twins. There are no living clones at this time, and even if it does ever happen they still will not be precisely the same once they have taken a few steps into life and had experiences and exposures in this world. That is the wonder of life itself. Embrace that, and you can get on with it.
I lost an old friend recently. He hit “unbearable” and just couldn’t anymore. I have been there myself, as I said. I grieve the loss and what could have been, but at the same time I cannot judge. There is not much I can say about it other than that it hurts deeply that he is gone, and that he felt that he had to just let go of life. Anyone that cannot understand what goes through a person’s mind at that stage has never been there themselves. The words are used far too flippantly these days. R.I.P., my friend.
*** [Edit – additional thought]: Just as an added note, regarding pain (which is not the only thing people take medication for, and “pain medication” is not the only kind of med that treats conditions that cause pain)…. Pain, when intense and intractable, causes stresses on the body that in turn causes damage. Just for information sake. There are valid reasons in some situations for treating pain. While it is inspirational to see someone able to tolerate and push through, it is NOT the right choice in all situations 100% of the time. Adrenals become exhausted, blood pressure spikes, and the constant stress can easily elevate inflammation levels. Continuous pain without relief is not a healthy condition. It even interferes with reparation processes for healing. Lack of sleep resulting from severe pain does even more damage than I can go into here, including screwing up hormone balances. It’s complex and to be taken very seriously. So if you think butching up and bearing all of it is impressive…. it’s not. Know when enough is enough, please.
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.
Living with an autoimmune disease like Lupus.. is life in the edge of a razor. You walk a fine line of conformity to strict routines, and defined boundaries, and a small deviation can send you sailing right off – painfully. The longer I live with this stupid condition, the more I see that the only people that really understand what that means are the other people directly living it with you. That is not your family, or your spouse, or your healthy friends that say they are there to support you. It is your fellow warriors that are also afflicted. There are a lot of people that will tell you they “understand”. They will say they are supportive. The truth is, they have no idea how to be.
I prefer to write when I have something more inspiring to say. I like sharing my breakthrough moments, and successes.. but right now, at this moment, I feel very low emotionally and I have to put a few thoughts into print. One of the worst things about dealing with loved ones is that you end up spending more time and energy explaining to them what they should already know, and feeling bad (like it’s your fault) about disagreements, conflicts, and perceived disappointments. You feel bad that you have to tell people no. You feel bad that you have to tell yourself no. You feel bad that people don’t understand why any of that is happening. You feel bad that you have to explain it to them again and again. You feel bad that you are facing limitations. You feel bad that you have to pick and choose between not only the things you need to do and want to do, but also between the things you want to do when they are all there is to choose from. We Lupies could have all the money in the world in our hands, and it’s not going to take away the fatigue, the muscles that rebel and quit on us, the nerves that inflict pain and unwanted sensations and movement, or the risks of everything we are exposed to every time we try to go anywhere and socialize. Every move we make has to be a calculated risk assessment. There is no such thing as a spontaneous decision in my life. I can’t just “Hey! Let’s go to the beach today!” anymore. I can’t have a friend calling me up and saying “Let’s go have lunch” without warning, or drop everything and change my plans for a day where I have set aside to take care of matters at home. My reserves are precious, they are small, and I have to save them for the most critical things. When those are done, then I may be able to choose things that I “want” to do for myself otherwise. The next thing that happens on the trailing end of it is… someone placing a demand on your time, and your energy, what little of it is left. There is always someone that thinks they know what is best for you. Always someone that wants to put their own interpretation on the situation. Always someone with their own brand of a good idea. They also rarely want to hear what you really need.
Real life with real disease is boring. It just is. As one writer put it – and I still find this so true, even after 4 years of this – then every once in a while, something truly terrifying happens… I guess it keeps us on our toes, but honestly I’m kind of getting tired of it. Both the boring, and the terrifying are things I could do without for a while. Level would be nice. Not having to manage someone else’s feelings about my situation would be REALLY nice, considering I have enough to deal with managing my own. Hint for anyone living with an autoimmune patient: Don’t put your issues about it off on them. They’re sorting out their own challenges, so you’re going to have to sort yours too. Don’t knock them off of their edge. Don’t disrupt what little balance they’re maintaining. It’s so hard to get back.
My main focus is always telling people they have no expiration date, and they can do more than they are being told is possible. All of that doesn’t happen without some backing, some support system (which ideally SHOULD be at home first and foremost), and people that don’t create oppositional static for you. I would love to tell you that the changes I have made, and what I am doing now is easy, but it’s not. In fact it is more work, harder for me, than it was just being in a state of mental paralysis… not progressing, not improving. Giving up is easy, and you at least feel initially like you can lie your head down and rest (which is about all you ever think about doing when you have an illness like Lupus). It accomplishes nothing, but it’s comfortable. It’s also boring. Quickly. I talk about the successes, the positives, the motivation.. but it is because I have to keep my focus there in order to do it. It’s not easy. Not one step of this has been easy.
The person that knows best what they need is the one that has a daily war to fight with this disease in their own body. If you really want to support someone like me, you’ll listen to what we are saying and not try to come up with a fix for everything from your own perspective.