Someone once told me that you never know how strong you truly are until you have no choice but to be strong. The person who told me this had literally been through a war and had managed to keep herself and her family safe. And this lovely lady was telling me this as she compared my struggles with lupus to her history as she inserted an IV into my port.
I don’t really think you can compare her history with my relationship with lupus, but I do understand what she was saying. And there is truth in the statement that you don’t know how strong you are or what you are capable of doing until you have no choice but to do whatever you need to do to keep going. To stay alive. To be okay.
At the same time I can assure you that there was no way I thought I could endure pain or less than ideal news as well as I have. Life has changed, because it has to. But I have changed or at least adapted to those changes too. And you don’t need a chronic illness or trauma in your life to realize that you can do more than you thought.
Think back to your first day of school. That was scary and yet you got through that. Why? Because you were stronger than the fear. Because the truth is, we are stronger than we realize. The mind is truly an amazing thing/
I’ve been debating writing this post. I’ve struggled with if it’s the right thing to post or not. And in the end, after the mental debate was done, I decided I would post it, because chances are I’m not the only person who has experienced something similar. You see now and then we encounter ignorance in our lives. Most of the time we just get past it, but now and then it strikes too close to home.
While out and about today, picking up something a little special for myself I encountered that form of ignorance that stopped me. Actually, friends, it left me a bit hurt and later a bit teary eyed. Which yes is silly, but it’s also just a fact of being human. And no I don’t expect everyone in the world to be versed in lupus, that would be asking too much and frankly few people get it unless they or a loved one has it.
And yes it is a “horrible autoimmune illness” as the man in the store was explaining that he was so relieved that his wife had cancer rather than a “horrible autoimmune illness like lupus which is life ending”. It isn’t, life ending. Lupus I mean. You still have a life, or at least I have a life with it. Sure some things have changed and altered by this illness, but it isn’t like I’m just going through the motions either. And I made a point of letting the couple know that life, does in fact, happen with lupus.
It was after, when I was explaining what had happened to a friend that the tears came. Before it was just anger. Neither is exactly appropriate. At least not when it comes to addressing a lack of education and I know better. But I’m also a human. Who has lupus and at times struggles with the downs of the illness. This time I got caught with the ignorance on a down point.
Sure living with lupus is a struggle at times, but not always. And sure there are down moments, but the same can be said for people who are perfectly healthy. And life, my friends, is what you make of it. You can embrace it with arms wide open or you can drift along and see where it takes you, merely observing and getting your toes wet now and then.
When you are chronically ill, you take advantage of the days when you feel a little better. If you are like me you celebrate by doing batch cooking, getting to some of the cleaning that left (for me that’s dusting the high places and changing sheets on the guest bed).
You may also go shopping, get your hair done, visit with friends or who knows what all. But you may find because you suddenly feel well, you over do it. Not on purpose. It just sort of happens. And then you end up exhausted and feeling like rubbish again. It happens.
Today I did not feel better. The fact is I feel horrid. But after a wee trip to the specialist’s yesterday with confirmation that something new is happening in a not good way, I thought I’d spend the day resting. Other than the visit back to the specialist’s.
Except I forgot. I forgot I agreed to meet with a student. And to see my hair dresser. So I say the specialist, saw the student and then went to the hair dresser’s. Where I demanded she do something that would let me just wash and go as far as my hair goes.
Now I’ve been seeing this lady for few years and I like her. Today I wasn’t thrilled when she told me I simply do not have wash and wear hair. But she could make it lower maintenance. So she did. Because she’s amazing that way.
And then I went home and collapsed. With nice hair, and knowing I had a relaxed student. As for my specialist, well I shall being seeing more of him. Daily. For a little bit.
I have a confession or make. It’s the kind of confession some people will totally understand, other people, well, they may not get it. You see I ever been blissfully ignoring some warning signs, although in all fairness it’s hindsight that makes me see if as a warning sign, that perhaps all is not exactly stable with my health.
Okay so when you have a chronic illness like lupus, stable is a relative thing. I mean a healthy person wouldn’t call my minor ups and downs stable, but for me it sort of is. And when you have only minor ups and downs for a period of time you start to feel like you have a handle on things.
So when you feel that way, blissfully feeling like you finally got this, you ignore those nagging odd pains, unusual aches, strange sensations and dizziness. At least you do if you are me. And if you are me, you kind of continue to brush these things under the covers. You play pretend in a whole new way.
You stop pretending that you are fine among just healthy people and also lie to yourself and others. So that nagging strange pain grows, and still you tell yourself that it’s nothing. Until it isn’t nothing or you can’t ignore it any longer.
And then you reach out to your medical team who insist you come and see them stat. No you cannot drive yourself there under any circumstance. So you get someone to take you there, you submit to tests and realize that your minor down is actually serious enough that they want you to have a sleep over at the hospital.
Maybe, if you are like me, you talk them out of that but promise to come back. Yo go home and hit Google and suddenly realize that some of what you brushed off are signs that your disease is attacking another organ. And so you see dear friends, I’m an idiot for not seeking medical intervention sooner.
According to the dictionary the word warrior means a person who is engaged or experienced in warfare. It also says that a warrior is someone who shows or has shown great vigor, courage, or aggressiveness, as in politics or athletics.
The word can, of course, be applied in other ways and frequently is. For example, we sometimes refer to business leaders as boardroom warriors. And let’s not forget the court room warriors also known as lawyers!
But this language has also shifted to people who have overcome health struggles. We have cancer warriors for example.
I was recently called a warrior by a health care professional. Now don’t get me wrong, I’ve used the term when referring to life with lupus because sometimes it does seem like my immune system is at war with the rest of my body. However, when this person called me a warrior I felt odd about it.
It wasn’t a feeling of discomfort as per say as much as it was a sense not being worthy of the word since really, I’m just living my life as best I can with this chronic illness. Sure, there are times I will refer to what I’m going through as a fight, and it can be a fight for my life.
So maybe it’s that I don’t see myself engaged or experienced in warfare. I don’t see myself as someone who has shown great vigor, courage. Sure, I’ve shown aggressiveness with some things. But I’m just living my life and being myself. If that makes me a warrior, it makes everyone a warrior in some sense doesn’t it
Now and then I will have one of those days, the ones where it’s hard to get out of bed or dress myself. No I am not depressed, I have lupus. Yes I know depression is common with chronic illnesses such as lupus. But depression isn’t swollen joints that prevent one from getting out of bed easily or managing zippers and buttons.
Today was one of those days. I knew it when I tried to get out of bed and my knees felt like squishy swollen grapefruits filled with sharp objects. I knew it when I tried to grab onto something and my fingers protested loudly. Knuckles hot and burning while being stiff and uncooperative.
It was a day for no buttons or zippers. And they do now make some stylish clothing that does not require zippers and buttons. Only I don’t own any of that. And the clothes I needed to wear required zippers to be zipped, buttons to be buttoned and shoes to be tied.
No, I don’t particularly like to torture myself, at least not that way. Sometimes you are asked to visit a place that has a dress code or a special uniform and footwear to put on. Sadly these places do not have uniforms to accommodate fingers that don’t want to tie or button or pull a zipper.
So today I decided not to out myself the awkwardness of trying to make my fingers do what seemed like impossible tasks. Today, I out myself first and advised my client I would not be going on the required tour or seeing all the sites. My client was naturally upset that I was cancelling and it’s rare that I do this. But I today I did. And today I asked why certain pieces of safety gear aren’t designed to accommodate all people. Turns out my client never once considered it. Not that this means it can or will be acquired. It does mean that as long as the client insists I do this tour, the client will have to wait until my body cooperates. Or the client gets someone else to do the work.
Life itself is a bit of a juggling act isn’t it? Or perhaps it’s more of a question of balancing on the high wire for you. And I certainly can feel like a roller coaster ride at the amusement park with its ups and downs.
Life with lupus is exactly like all those things plus a trip in the fun house (without the fun) and a ride on the Drop Of Doom with somewhat less than grippy harnesses.
Land just like a day at the fair, it’s not all bad. I know a lot of times lupus makes things seem bad,but not really. You have your good days which to me are like trying some new food at the fair or going on a nice ride. You have days where you will throw the ball at the target and be successful and other days where you just don’t get the prize.
It’s all okay though, as hard as it seems. As frightening as those rides can be at their scariest, it’s okay. What makes it okay you ask? Having support makes it okay. Having people who know when you need help even if you won’t ask, that makes it okay too. Knowing you aren’t alone? You better believe that makes it okay.
So even though you may be scared or unsure, go out and see what the fair, um, life I mean brings. Even if you have lupus.