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.
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.
We humans are creatures of habits. We like consistency or at least routine. Even those of us who claim we don’t, we do. Want the proof, simply take away a standard routine in your day and see what happens.
Allow me to share, every Monday I receive a motivating and/or uplifting practice to try. Yep believe it or I do try to add positivity and motivation into my life; having an unrelenting chronic illness can leave you feeling negative and unmotivated. Anyway every Monday I get one of these emails in my inbox. I look forward to these emails even if all I do sometimes is just read the email.
Yesterday I received an email stating that author of these wonderful things is taking a break for four months. Of course she is entitled to a break, but suddenly I’m unhappy. Not because she is taking a break and not because I am applying everything in each email. Nope that is not what makes me unhappy, instead it is this sense of being set adrift with no directions to follow.
My routine, those moments I spend reading the email and contemplating applying the information, is suddenly been messed with. It’s not a big deal and I’m already over it, but let’s face it, when someone takes our usual parking spot, it darkens our day a little. You have a favorite spot for your yoga mat and someone else takes it, well even if you won’t admit it to anyone else, it sucks. Why because your routine, those moments of consistency and dependable results are somehow soothing.
Beloved is a man with the patience of the Saint, or close to it. He has to be in order to live with me. I can’t even tolerate my stubbornness which leads to insane delays that lead me back to square one sometimes. But he just smiles and waits while I sort it out and somehow avoids the whole I told you so bit.
He claims he really isn’t all that goods with this stuff either, just has figured out how to fake things better than some other people. Of course he also says that living with someone with a chronic illness like lupus has taught him to encourage slow time. He simply savours the moments as best he can.
Beloved has the grace of someone who is a saint. He has the grace to allow me to stubborn my way through things. He is gracious with me, generous it’s time and encouragement when t might be easier to just don’t on his own. His grace allows me to admit defeat or not even starting something.
But he isn’t, a saint that is. At least not according to the religious experts. That’s okay thought because in my eyes he is a saint, my saint. He puts the sane in sanity in this life with lupus.
Today the four-footed one and I went for a small walk before the day got too long and I ran out of energy. Rest assured this was a very small walk because my energy levels were very small. Thankfully the four-footed one was fine with a small walk, frankly she enjoyed the slow pace which afforded her more time to sniff around. She even managed to pounce on several unsuspecting moths.
Why do I tell you about today’s walk when nothing overly eventful happened? Because dear friends the walk happened to be something I had planned to do. I planned it the night before, well okay maybe not the whole pouncing on moth part, but the small walk early in the morning part was all my planning.
Now I realize to some of you, to most people in fact, this isn’t anything to brag about. I realize some of you plan things much larger than a small walk. Some of you plan careers, long vacations and all sorts of wonderful things. Not only do you folks plan these things, you execute the plans. So yes dear friends, I get this isn’t that big of a thing to you. But I ask you, dear readers, how many of you have lupus?
Ah see, there’s the rub, I have lupus and that makes executing plans a bit of a juggling act. I often make plans only to discover I lack the energy or ability to execute the plans so whenever things go as I planned I celebrate. Even if it is a celebration because the four-footed one and I went for a small walk early in the morning, exactly as I had planned. Score one for me and zero for lupus this time!
Beloved’s elderly aunt decided that both he and I needed gifts, a little something to boost our spirits as she put it in her daily emails to us. Experience has taught me not to decline her generosity as she becomes very offended by this.
She does this every once-and-a-while, randomly out of the clear blue she will announce we need our spirits boosted, even if nothing out of the ordinary is going on for us. The first time she made this declaration we were the recipients of a gourmet meal at a very fine restaurant. It was a place we would have otherwise never tried and shared our experience with her after in an email.
Naturally we wanted to surprise her and searched for something different to send her way. She was delighted that we would send her anything, I get the feeling Beloved’s siblings just accept the gifts with heartfelt thanks and carry on with life. Granted they can visit her a little more easily than I can.
This time she insisted on sending Beloved a special wine tasting trip. He was tickled pink by the gift. She insisted on supplying me with several manicures so that regardless of how awful I may feel, I have something special for my “lovely” nails. (She admires my natural nails and laughed when I told her it was a sign that I don’t do manual labor.)
When I feel a little better I will go and get my nails done and then I shall take a picture to show her. But first I want to find something extra special for her, something that is whimsical and will tickle her pink. Her joy, delight and genuine pleasure is really the best gift I could ever receive!