When I was younger, I always wanted to be woken up by a wiggly puppy. It never happened, mostly on account of my mother’s insistence that pets sleep in pet beds only. As an adult, well let’s just say I make my own rules. 😉
Okay so the truth. I like to believe I make my own rules. Reality is a little different because the four-footed one refuses to follow the rules. She makes up her own rules as she goes. And so this morning while I got my childhood wish of being woken up by a wiggly puppy, it wasn’t exactly what I wanted. You see she didn’t exactly wake me up nicely, instead she jumped on me and proceeded to bark. Loudly. Right in my ear.
Now today was not an easy moving day for me. Lupus has made my joints feel all stuff and stuck in one position which means getting out of bed was a little more challenging than normal. The four-footed one did not care. She wanted me up and out bed, so she decided to help.
She tried to play the blankets off and when that isn’t work she tried to steal my pillow. All the while barking loudly. And when I was finally up, she promptly went and curled up in a patch of sunlight on the floor! I guess the lesson here is if you never have the dog on yo bed to begin with you wont be woken up to watch the dog find a spot on the floor to rest on once you’ve gotten out of your bed!
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’s been one of those days. It started off okay, but quickly became one that was full of too much. Or maybe it isn’t so much that it was too much as it was a case of me not having enough energy for everything. Not that it really matters in the end because the results are the same.
The results can be explained as follows: pain, frustration, exhaustion and a degree of anger. And that’s just within myself. If anyone has to deal with me during one of these days, well I pretty sure their list has my results plus others!
So how does a person with lupus end up with one of these days? Sometimes this person may overestimate what s/he is capable of doing for that period of time. Sometimes what s/he thought would go a certain way ends up going a different way. And sometimes, well sometimes lupus just steps in and has a say in things.
So the person, this person, cannot always change that. But this person can try and make the best of things where possible. One these days, this person tends to retreat to be on her own and uses the time to read and rest. Or at least not have to infect other people with the miserable mood that settles upon her.
And some days, sometimes, despite it all, this person ends up with tears down her cheeks. But tears can be an emotional release which helps too.
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.