At some point in our lives we catch a glimpse of our potential, more aged future selves. For some of us it is a way to remind ourselves that we can still make changes to alter our futures. For others of us it is a reality we’d rather not see as soon enough it will be right in our faces.
Today was one of those moments where I was taken aback by these glimpses of what is around the corner. I already struggle with some mobility issues at times. Today’s watched an elderly lady struggle to catch a bus which had stopped far short of where it should have. I already know the pain of forcing swollen, damaged knees to try to work faster to keep an appointment. For the record she caught her bus and as she sat down no one could miss the way the pain marked her face.
After that moment, several other people with various mobility devices (from canes to wheelchairs) came into view. Each person seemed to have some obstacles to manage. And those who were not showing any signs of mobility issues seemed blind to what I was seeing. Perhaps it is because, for me, this isn’t a case of seeing what may happen as much as to which degree will it happen.
It isn’t aging that I fear. It is losing more and more of myself to lupus. Sure we all keep on and adapt and overcome where we can. But somewhere in the limping that currently happens rests the girl who once danced easily. She rests not because she is tired, instead she is resting because she has lost the ability to dance, but not her memories of it. And it scares her to know more loss is happening with no way of knowing when it will stop.
I’ve debated writing this post. I’ve asked if it is better to write the post or to not write the post. Or if I should write the post snd then have the debate publishing or not publishing said post. It’s rattled around in my head for day, nay weeks I dare say. Fleeting here and there, dancing on the edges of my thoughts.
I’ve thought myself independent and fiercely fought to stay that way. I’ve considered myself self-sufficient and capable. And least you get the wrong idea, I am these things. Except when it comes to opening jars. Or carrying things for long distances, or heck traveling long distances. Then again simple things, like doing up buttons, tying shoes or working zippers can seem near impossible at times.
Shen these moments strike I am reminded that my skills are no longer what they once were. That I am not always capable of doing what I want or need. And the frustration that kicks in seems to make things even more of a challenge.
I am reminded that even when there is no rash on my face, no redress or swelling of my joints, there are reminders that lupus has changed my life. Lupus has challenged me to rethink what it means to be independent, self-sufficient and capable. Lupus poses the question is this now the slide down the slope to doing less, relying more on others? Lupus also whispers so what if it is, what will you do? And then answer that rattles in my head is a shaky, terrified one. It is the asking for help. Which seems near impossible for me to form. As if asking for help is more terrifying than leaving my house with my zipper undone and my shoes untied. Or settling for workarounds rather than allowing others to help and be grateful they are there in my life.
For the record, I truly am grateful for them. And I do appreciate it when they help me out with things I struggle with. But it rubs me as a reminder than I am having things taken away or at least altered and it isn’t on my terms.
It was suggested, nay let’s be clear here, it was ordered that I get a massage due to continual cramping in my feet. My rheumatologist ordered it while I was visiting him. It isn’t something I asked for because I’m a little weird about my feet.
The last foot massage I experienced was an authentic Chinese foot massage and that pretty much sealed the deal for me. My feet were made off-limits, I know this for a fact as I am the one who decreed it.
So there I am, suddenly faced with an ordered foot massage after I had mentioned in passing that I’ve been having cramps in both my feet, toes and into the arches. What I was hoping for by confessing this issue to my specialists I am not sure. I can however say with complete certainty that I had never even considered anyone touching my feet.
Land here’s the thing, my doctor knows me well enough that when he ordered the massage, he ordered it immediately, in his office. No escape now. Thankfully the massage therapist listened to my explanation of my foot cramps and said he didn’t think a foot massage would do a thing for me.
Just when I relaxed and thought all was safe, the man started rubbing my calf. I just about hit the ceiling from both surprise and pain. He explained the foot pain was due to tight calves. And then proceeded to torment both of my calves to the point that I was positive I would never walk again. A few hours post massage my feet feel better, as do my calves, which I had no idea was bothering me in the first place.
Today was leg day. More specifically it was stair day. Twenty-four flights of stairs, each flight consisting of twenty-five steps. This cardio work out was followed by a cool down of consisting of a “short walk” of roughly 1000 steps. And then a rest period out in the sun. And then after I rested, we did the whole thing in reverse.
Not because I wanted to as per say. And no I do not have a trainer who forced me to do this. No dear friends this whole workout was brought to me courtesy of someone pulling a fire alarm in a building I was visiting. A specialist’s office in a high-rise. As a matter of fact this happened twice during my visit.
While I understand and appreciate the cause for concern and safety, I really wasn’t up for all that. Not after the day I had been having nor the reason I was visiting the specialist for. I confess there was a small part of me that had briefly wondered if it wouldn’t be better to let myself become overcome by smoke and just stay where I was.
After my appointment I went home and rested. To be honest I all am because all of that was too much. In fact it was so much too much I still haven’t ceased to feel shaky and weak. Sometimes this is what life with lupus looks like. Sometimes a chronic illness isn’t really taken into account with safety or evacuation plans. And while yes at least I was safe, the reality is I am going to be dealing its fallout for days to come.
I spend a good portion of my time and energy pretending to be something I’m not. I try to be like a healthy person and I’m not. News flash, no matter how many times I fake it I will never make myself into being healthy.
I know dear readers we have had this type of conversation before, and if you are fortunate enough to healthy you may not get this. Today while having a conversation with a friend in a restaurant, our waitress decided to offer my friend, and inadvertently me, this lovely gem of advice that if you fake it till you make it anything is possible. This includes dealing with chronic illness according to this waitress who clearly has a medical degree as well as working in the restaurant.
So if one fakes being well one will simply become well according to her theory. Believe you me, if it were this simply there would thousands of people with chronic illnesses and serious conditions on this band wagon.
Lim not sure why people who know nothing about me or my condition think they have the right to offer me unsolicited advice on what to do to get back to normal. It is a bit like this: let’s say you invented a widget machine; it is your pride and joy, you live for this machine. Now I come along knowing nothing about widgets or machines, but I tell you what you need to do to make it work better. You’d laugh at me, throw me out of your building and have a great story to tell.
With chronic illnesses like lupus I’m on the one with the widget machine and some stranger comes over to me and says things like: it’s all in how you view things, eat a healthy diet and avoid X, or have you tried Y it worked for my aunt when she had a cold. When I try to tell the stranger to get out of my shop the stranger gets offended and makes a comment about me not trying to get well or wanting pity.
So here’s the thing, just because I have lupus it doesn’t give people a free license to offer unsolicited advice.
There are certain things that I really miss from home, so when I found a nice bunch of green tomatoes well you know I just had to turn them into fried green tomatoes. This isn’t a common thing, not where I live and definitely not something Beloved grew up with. He won’t even touch them because they are unrepentant tomatoes battered in heavenly cornmeal and fried nice and crisp. But to me, a few of those and I’m sitting on a porch back home. Put that with some nicely barbecued meat and some cold iced tea and we are all set, only don’t forget the peach cobbler!
Beloved loves peach cobbler and has happily admitted to an iced tea lemonade addiction not to mention raspberry lemonade addictions as well. He will pass on the sweet corn casseroles, biscuits and fried chicken. And yet the man will happily consume chicken fried steak. (He’s a bit of a work in progress but aren’t we all.)
So I fried some tomatoes, well correction Beloved had to help because lupus is lending a helping hand, the kind that makes my hands not work as well as they should. He then crisped some bacon, made a spicy mayo and toasted buns for fried green tomato po’boys. Or in his case bacon on a toasted bun with cheese, lettuce and regular mayo.
We settled on sweet, juicy watermelon for a snack later on. I’m feeling a little less away from home right now and it should last for a bit. This means tomorrow’s meals will be from different places to create a new adventure. And judging from the way Beloved has looked at me, not to mention the visible red cheeks, Beloved will be doing all the cooking. But it’s okay lupus will not prevent me from watching him cook and it was worth it for a taste that brought me back home for a little bit
In the movies the hero always saves the day, just in the nick of time. Sure the hero faces many obstacles and there is some doubt about a successful outcome, but in the end the hero comes through.
Now what makes the person a hero will vary, it depends on the issues at hand. My hero sometimes doesn’t make it in time. To save the burning food, or spilled cup. He tries, but let’s face it Beloved is no Flash Gordon. He also will never leap tall building in a single bound or fly.
But Beloved is my hero, one of em anyway. It’s not easy living with a stubborn person. Really not easy living with a stubborn person who happens to have lupus. It can be down right near impossible to live with a person who is not only stubborn and has lupus but refuses to follow the rules. And yet Beloved does this all with a smile on his face.
When he’s around there is less chance of burnt food because he will do the cooking and the washing up. As for cleaning up spill Some? You better believe he does that when he’s here. He also does whatever else needs doing, even if I insist I can manage it on my own when we both know there is no way I’m getting it done because of lupus.
So they will probably never make a movie about the type of hero that Beloved is. That’s okay, he knows he is my hero just by being himself.