It may feel like something awful and unfair is happening to you when you hear you have a chronic illness. I know life isn’t fair, but it feels a bit much.
Time heals things they say. It doesn’t heal how you feel, but you learn to live with the ebb and the flow of your condition. Time and experience give you perspective; you form a relationship of sorts with your chronic illness. You would never call it a friend, that would be going too far. But you come to appreciate how you adapt to live with it and enjoy the good days so much more now.
You learn that there are positive aspects of living with your condition. Lupus has taught me to appreciate the simple things in life, those moments of small joys such as the sun on the flowers and how luxurious it is to spend time with friends. I’ve learned how important it is to take care of myself even when it would be easier to hide behind school and work. I’ve discovered to appreciate the things that make life easier, and that you genuinely do have to put your mask on before you can help anyone else once the masks come down in the airplane. I’ve also come to realize that if you don’t put yourself and your well being first, no one else will either.
No one is perfect, some people are better at seeming that way than others, but no one is perfect. We all have flaws. Something life has taught me is that most of us struggling with admitting we need help. Living with lupus has taught me that I need help sometimes. The kind of help that can open things when my hands are too stiff to turn lids, lift tops, or whatever else is required.
Sometimes I need the kind of help that knows I’m going to crash hard into an active flare long before I know it. This kind of help steps in and does what it can to lessen the flare effects.
You’d think that with the amount of help I need, that I would be able to figure out how to ask for it and be gracious in accepting it. Either I am a slow learner or very stubborn because I have yet to be generous in accepting the help when I need it. Please don’t misunderstand; I am genuinely grateful for the help. I am slowly, ever so slowly, admitting when I am in dire need of help.
I know I’m not alone with this, and I know other friends who also have chronic conditions who struggle with the very things I do. Please don’t mistake our struggles with our lack of gratitude; it’s just that it gets tiresome needing help because your body is fighting you.
It is easy, so utterly easy, to take things for granted when you don’t feel well. You take for granted the medical people who work to get you well again. You take for granted the people who run the labs and fill the prescriptions. Instead you just focus on getting well and don’t give much of a thought to how it is possible.
If not for a large group of amazing people, there is no way I would have the life I currently have. To be blunt, I cannot say for sure I would even be alive today without these amazing and talented people. And I remind myself every day how much they do for me and all the other patients.
It is just as easy to forget about those amazing people when you feel well. Let’s face it, when you have a chronic illness, it is deligtful to feel well enough to just be like everyone else. Again there is no way for me to feel that way without an incredible team behind me. A team that is a step ahead at times, or at least in sync with me. And these people plan how to best help me, in spite of myself.
I don’t take them for granted because without them, I’m not here. Thank you seems insufficient for what they do, mostly bcause what they do is priceless to me.
If someone had told me having lupus would result in getting a chauffeur, I would have embraced it more openly. Okay I probably wouldn’t because I’m stubborn.
How stubborn you ask? Well I qualify of a special parking placard, the ones that allow you to park in the disabled parking stalls. Apparently these are prime real estate, near the doors and wider space between the lines. As one of my doctors once put it, there are some perks to an illness like lupus. The perk of premium parking should not be scoffed at he said.
And there are days where I wonder about how far I will be able to walk due to pain or failing energy or what have you. But I still park far away from the doors. I always have. Because the exercise is supposedly good for me. Because people won’t park near my car given how far out I’ve parked, and yet they still do.
How stubborn you ask? I qualify for special appointments with my doctors, like get in no questions asked special. But I never take them. Because someone else may need them more than I do.
Now a chauffeur is a different story, except I like to drive. However on the days it is too much, having “James” take me “home” can be delightful. Of course I say this tongue in cheek. I am totally grateful that Beloved easily steps into help out without complaining. Of course I’m also grateful that he doesn’t mind when I say “home James” as posh as I can!
When I was young a bicycle seemed like freedom. You could travel much further on a bicycle than you could one foot. Plus a bicycle was fast. And I was thrilled with my bicycle.
Until I was old enough to drive a car. A car was truly freedom. It could go further and faster and there was something liberating about a road trip. And I loved it.
Now there are of course limitations to these modes of freedom. Cars require maintenance and gas. They require insurance and licensing and so on. A bike also had maintenance needs, such as air in the tires and greasing a chain. Not as expensive, but again, not as liberating as the car. Of course there is a trade off in price versus the amount of freedom.
Having come out of a very awful flare up of lupus a while back, I realized that freedom isn’t a car. It isn’t a bike. It is being able to walk without too much pain. It is being able to breathe on your own. It’s being able to dress yourself and make yourself presentable. It is being able to make decisions on your own and so on.
It’s funny how lupus frequently reminds me of my blessings. Lupus more than anything else has taught me gratitude because lupus, more than anything else took away what I had taken for granted.
Not that I’m saying I wouldn’t have learned these lessons without lupus, for I may very well have done that. But lupus certainly brought the object of the lesson directly to my attention.
The four-footed one took Beloved on long adventure the other day. He thought they’d walk a few blocks, and hour and a half later a somewhat bewildered Beloved and a happy, yet exhausted, four-footed one came home. She strolled into the house, drank heartily from her water and found the ideal spot to rest. Beloved stepped in, headed to fridge for a drink of something cool and a comfortable chair. That was until he looked at the clock.
Once he saw the clock, he changed direction, headed for a shower and a change of clothes before dashing off to work. The four-footed one took care of his rest for him. And I, well, I was still trying to clean up the dishes and such off the table. It was, after all, a slow day. Slow days used to drive me crazy, I mean I had things to do and lupus would slow me down, making me frustrated and angry. It was as if lupus couldn’t respect that I had a life to live.
But on that day, I cleaned up and felt at peace with the slow pace, which I knew would last at least the day. The slower pace meant stuff wouldn’t get done the way I’d want to, but it would also allow me to enjoy the four-footed one’s company and the more simple things. It would also mean that I would be careful about what tasks I would accomplish and what ones would wait for either Beloved or another day.
You see lupus taught me that not everything has to be done right away. The world won’t end because the laundry has to wait a day. Your life won’t be over because you clean the house today, make a gourmet meal or complete a power deal. It’s okay. And lupus also taught me that you know what? There will be time to get to those chores and what have you soon enough.
When I have to plead my case, when I am asked if I am guilty of: being late, missing appointments, leaving early, canceling at the last-minute and not pulling my own weight, I shall have to plead guilty as charged. I would like to say that while not fully responsible, lupus has certainly played a huge part my guilty charge.
There have been times, pre-lupus, that I have skipped out of commitments, but those were rare. And there were times when I know I shirked my responsibilities because it just seemed a good day to read. Again these were rare. Perhaps due to how rare they happened in the past I did not feel a crushing weight of guilt upon my shoulders like I do now.
Lupus has made me a less reliable, more of a maybe kind of girl. This isn’t all a bad thing though. You see sometimes in the past I would commit to something without knowing how much time and/or energy it would take. Sometimes I leaped and did not look until the very last second when I knew I’d crash hard into the ground.
Lupus forces me to consider the value of something now. Is going to do X worth the energy it will take? If I don’t do Y can I still do Z. And so on. In some ways lupus may have allowed me to say no or maybe more often. And because I am not used to it, I feel guilty.
The four-footed one and I had a nice amble today. We had no specific destination nor any specific timeframe to adhere to so we took our time. We watched clouds waltz ever so slowly yet gracefully across the sky. We listened to the breeze as it made the tree stand way. We watched in wonder at a crow with beautiful blue-black feathers as it determined the best way to open up a nut it had found.
Okay so maybe the four-footed didn’t do all those things, but while she was doing her thing I was doing mine. For all I know she could have been plotting her getaway while I was shaking off the bad mood through nature.
The crow, for all I know, may have had worries and fears of its own, but it carried on with the situation at hand. There is something to be said about letting things sort themselves while you allow nature to soothe the unpleasantness or at least distract you with that which is bigger than yourself.
To be honest being out in nature let me forget myself and consider things from a different point of view. It didn’t fix my situation any, but it let the negativity slip away even if just for a short period of time. And in that time I was able to count blessings and find some semblance of a smile from within.
Someone Beloved knows from years ago was recently in the media discussing the importance of enjoying the little things in life while having gratitude for each moment. We didn’t catch the live segment but a friend from Beloved’s home sent him a link to the recorded discussion.
In between rain storms and my need to rest, Beloved decided to listen to the discussion. He wasn’t expecting anything ground breaking or such from it. He was just curious, idly so as he out it, because when he knew him, Beloved would not have suspected the boy to grow into a man discussion gratitude or appreciating the little things. In fact when Beloved knew him best, he was an angry young man who was at war with himself and the rest of the world.
Beloved was curious as to what would bring about such a change, what life experiences had provided him these lessons. It turns out a horrible car accident initiated the experiences which in turn taught the lessons.
A car accident which resulted in paralysis in basically the blink of an eye. He indicated in the discussion that a spinal injury can prevent the body from properly regulating temperature. He said a spinal injury can make you wish you could feel the rain against your legs when a summer squall suddenly popped up. Being paralysed and dependent upon others helped him to relearn that life is made up of moments of rainbows and gentle breezes, the trick is to enjoy it all as best as you can.
Beloved listened to the discussion a few times and noted whether you are in a wheelchair or suffering from a chronic invisible illness, you tend to savour the good moments more than others would. I suspect it is because you know the dark moments that others can never even fully dream of. And I know from my experience you don’t have the energy to keep fighting everyone and everything when you have to heal yourself.
Sometimes, especially when I’ve missed the signs that tell me I’m not doing enough self-care and it comes down to a friend or loved one insisting that I stop and rest, it’s easy to get lost in the resentment or anger of having to pause. I know these people mean well and are telling me to slow down because they care about me, but it still reminds me that there is something that makes me different.
The other day was one of those moments where Beloved, after taking a looking st me insisted I go and rest. At the time I felt a bit off, nothing too bad just tired and achy with a wee fever. A smart woman would respond to these symptoms and deal with them, but I am not that woman. After a wee disagreement, I gave in to go and rest with the four-footed one.
Beloved came into the room to take my four-footed one outside and accidentally woke me up, although I wasn’t fully asleep. I was in that light state of sleep where you could go deeper into sleep or wake up. I woke up and checked what time it was as I was a wee bit confused. We had only been resting for an hour when Beloved came in.
By this point my face was proudly displaying the full butterfly rash of very active lupus. My hands and feet had become very swollen and I was not at my best. So I went back to sleep leaving the four-footed one in Beloved’s hands.
I was and am grateful to have people in my life who can insist I get proper rest before I realize I need it. I am appreciative of the fact that I have people in my life who take care of the things I can’t manage all the time. I’m blessed to have a good medical team and access to medication to help manage my lupus.
I’m grateful to wake up each morning and have some type of adventure, even if it remains only within in the house. Some days my gratitude is for simpler things, such as the couch, a stocked kitchen and not being in the hospital.
It would be easy to get lost in the negative and throw a huge week-long pity party. It would be easy to complain and keep a list of what I cannot do. But why bother with any of that when I have so much to be thankful for, so many people to appreciate and so much gratitude in my life. Yes I have a chronic illness and yes it has altered my life, but there is still much to appreciate. Lupus does not run everything in my life and I can choose how to deal with it. I choose gratitude.