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.
We have a large box filled with an assortment of Lego. We do not have children in our house so the Lego may seem a little odd. We also have a mat to go on the floor, a mat with cushion in it for the times Beloved feels like creating with Lego.
I was surprised to encounter an adult, Beloved, who was not aware of Lego beyond it being some toy beyond his reach. As he got older Lego was simply not an interest, until one of his nephews received some for a gift. At which point he became interested in Lego. Interested enough to buy himself some, under the guise that his nephew may come to visit and would need something to play with.
Somehow despite his nephews and nieces growing up into adults, he still buys Lego now and then. For himself. For those moments when he is puzzling over something and needs to step away from it and let things just happen.
We have a bottom shelf on one of our bookcases dedicated to children books. Because sometimes you need to revisit the stories of your childhood. In other cases because you never got to read those books when you were a child.
What we did not have, until this weekend was coloring hooks and pencil crayons. Apparently these help relax the mind. Only I ended up stressing out over choosing the color to start with so maybe I will leave mine for Beloved.
My four-footed companion has a taste for berries. This time of year it happens to be raspberries. Earlier she was all about the strawberries. She will also eat blueberries a d blackberries with much joy. Mind you this is the same companion that happily consumes cherries, apples, watermelon and honeydew. Now before you get upset, she only get the tiniest of portions if any from me.
The problem lies at the end of the neighbor’s garden. This is where the berries grow and where the cherries fell off the tree. Not that she goes into the garden, but some tasty morsels of delicious fruit always are outside the fence. And it is outside the fence that she samples on these delicious bits.
I had no clue she knew how to pick a berry or knowing how to pick a ripe one while leaving unripe ones to ripen up. I certainly never taught her so I shall assume it is in her nature. And since dogs aren’t pure carnivores it makes sense.
She also only takes two berries a day, never more and never less. And since the raspberries are towards the end of their season with apples now starting to fall from the tree I’m sure this is what she will try to sample next. Will she know enough not to eat the seeds or will she at least swallow them whole?
While we can learn a great deal through experimentation, this is not an area I am for this practice. Much like I’m sure I did as a child, the four-footed one bristles at my efforts to prevent her from harm. For now she is safe and satisfied with raspberries.
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.
A strange has been happening each night for the past few weeks. My bed has been taken over by an unseen force. No I’m not talking about Beloved’s “bubble zone” that allows him more personal space.
Pit appears that a rather large yet unseen entity takes over the bed around midnight. It starts by making its presence known in the middle of the bed and it slowly pushes us both out to our respective sides of the bed. When we go to look, the only thing in the Center of the bed is the four-footed one. And it can’t be her because she’s curled up in a small little bundle, eyes closed and settled in for her sleep.
Once we shut off the lights again and just start drifting off to sleep this entity is back pushing and clawing at each of us as it demands more space. Frankly we have been stumped as to what was going on so Beloved set up a camera to record what was happening. Unfortunately the footage wasn’t ideal for us to see the middle of the bed.
Plan B was for one of us to stay awake and watch from elsewhere in the room. The one of us who stayed awake was me, in a chair at the window. I couldn’t sleep anyway with the pain I was experiencing, but it wasn’t enough to take my medications. I tell you this because I want you to know that I was not under the influence of anything.
You see dear friends the strange thing happening on our bed each night turns out to be a small little dog. Yes it is in fact our four-footed one. You’d almost think that at night she magical turns into the size and weight of a small pony while during the day she is a small-sized dog. When we move or sit up she curls up in the center and pretends to be sleeping. This dog is able to command most of the space on a king sized bed each night as a way of ensuring she has a good nights rest while we struggle to stay in our own bed!
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.