A day at the beach always seemed nice. Not that I was one to have to go into the water as per say, but a chance to simply relax, read a book and basically have no guilt around what I was doing seemed ideal.
A day at the beach with lupus, well let’s just say it’s not the same thing. I never anticipated having to be so on top of sun screen and shade areas. If it’s too warm, I may have other issues. My beach bag went from being easy to manage into something that resembles a bag which can hold everything and the kitchen sink.
Who wants to carry a heavy bag around loaded with sun screen, water, an umbrella of sorts and a wrap, long-sleeved shirt and pants for additional sun protection. No one should feel that a trip to the beach is practice for being a pack mule. Oh wait. Maybe if I had a pack mule, except would that be fair to the mule?
So these days I don’t do days at the beach. Instead I find a nice area and set up my reading or relaxation and don’t care what others think. Nor do I have guilt about doing this. After all they are all at the beach and I need shade, plus some nice peace and quiet so I guess it all works out. You go to the beach and I will head off just over here and we will both have a great time at the same time, just not together!
My mother swore that getting a good drink of water would always help change the way you see something. I recall being horribly upset over something when I was young, and my mother offered me a glass of water to help me see it wasn’t the end of the world.
Beloved offers tea in place of water, which I guess isn’t that far off, given that tea is nearly boiled water and dead leaves. Or so I like to tell him. Mostly because I like to watch his face turn brilliant red as he listens to me say horrible things about the sacred tea.
I’ve also come to realize that one of my specialist’s has now started employ this little trick when he has to give less than pleasant news. The first time he tried it with me, he started with the gentle suggestion that I needed more hydration. Really he was stalling for time before telling me what I already knew. I’ve lived with lupus longer than he has been treating my lupus so I have a pretty good idea when things aren’t going in the right direction. I also know that water won’t help.
Water may “calm” or “distract” me temporarily, but it doesn’t fix the issue at hand. If nothing else, lupus has taught me that I need to deal with the problem head on, not wait it out or hide from it and pretend it will go away because lupus doesn’t go away. It just gets stronger and stronger.
Sure hydration and water intake is important, more so for people with lupus and certain medications. But I’ve also come to learn that lupus knows how to swim so I can’t avoid it forever.
When my doctor sat me down and told me I had lupus, in a clinical way, I wish he had taken the time to explain to me how my medical appointments would change. I mean I knew there would be more and could involve a variety of specialists (frankly I feel a bit like a hoarder with the number of specialists I currently have). But I never anticipated that the tone of these appointments would change either.
Suddenly everything was about the progress of the disease or the latest blood results. It was as if I ceased to be a person and was now having an almost out-of-body experience when it came to my medical appointments. I trusted my doctors to know what was wrong and how best to get things on the right track again.
But more and more I realized I suddenly lost my voice in decisions and I didn’t like it. So I started to read up on the illness, I read medical books and learned the language. I had determined that while I couldn’t get a medical degree, I could certainly earn an honorary one with this illness. And if I was going to have an honorary one, I should know the language and be able to hold my own to some regard. Plus I wanted to be making informed decisions, not just going with what a doctor thought was best.
So without being told, I found my way into being my own advocate. After all who knows me better, knows my wishes and my body better than I do? No one. And just because a doctor is partial to one way of having things, it doesn’t mean I am. Besides none of my doctors were stuck living with the ramifications of the illness the way I was.
Being my own advocate took me out of being a “victim” of the illness and gave me power to be actively involved in my well-being and treatment. And more than that, it gave me back my voice and my power. Sure lupus wins now and then, but I’m not just along for the ride any more. I am looking at the map and deciding which route to take. If my doctor doesn’t agree, and I can’t seem to understand his/her strong push for a specific course of treatment without taking into account my opinions, the doctor can be removed and I can find another one. I don’t have the energy to fight both lupus and a medical professional.
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.
I slathered on sunscreen the way Beloved slathers butter onto fresh bread. Okay not exactly that thick, but I was well coated. And still despite being so careful and following all of the sun rules I managed to get a mild sunburn.
Lupus seems to feed off the sunlight. Flares grow in strength with greater exposure to sun. Medication for lupus can lead to sun sensitivity, which has happened to me. Both this time with the mild sunburn and another time, when I turned purple and had horrible swollen feet. You seem I didn’t worry about my feet because, well, shoes. But then for some reason I had to remove my shoes on the boat and an hour later swollen feet. Very swollen and purple.
Besides sunscreen I tend to favor clothing with sun protection in them. And let’s not forget the special detergent I have to add sun protection back into my clothing.
Before lupus I enjoyed the sn, I spent time out in it and never sought shade. Since lupus I check for shade, possible places where shade soon will be found and suchlike. Before lupus I would wear sun screen and that was the extent my sun protection routine. Now I wear multiple layers, and still get burnt!
A friend told me I had a healthy color to me today, that was before the rash and such kicked in. Once she saw that she took back what she said about healthy color. At least my feet aren’t purple this time.
The four-footed one knows what she wants and just goes for it. She doesn’t care if it’s silly to roll in the grass, eat ants or chase butterflies. If she wants to do those things, she is going to do them. There is no stopping her. Trust me. I know. Because I have tried. Oh how I have tried.
I am, to some extent, the same way. When I was first told that lupus would mean changes to my life, I thought ‘that’s for other people, I’m different and I will do what I want to do’. Yes I know, absolutely silly. Laugh if you wish, I do now too.
But as much as lupus means changes, it also means ensuring there is balance and time for silly things. Or fun things. Or what have you. In other words, if I want to roll in the grass, and I feel up to it, why not do it? And if I want to eat ants, well someone should just stop me right now.
The thing is, lupus is hard. It adds challenges to life that other people don’t have. But it doesn’t mean life is just one massive struggle either. There is balance with lupus and I encourage you to give into your silly whims now and then. Even if that’s to roll in the grass or paint your toe nails in sparkly colors.
There are a million and one things no one ever tells you once you have been diagnosed with lupus. Sure they tell you about medication (not always the scary side-effects), and numerous blood draws and doctor’s appointments. They tell you about flares and how you may need to alter the way you do things.
If you are fortunate someone will sit down with you and discuss the grieving process and how it applies to you. Someone may tell you it’s okay to mourn the loss of your goals and dreams. If you are really fortunate that same person will also tell you that you can still have goals and dreams, it’s just different now.
But no one tells you how you will feel guilty. Guilty for not being there for people. Guilty for cancelling at the last-minute and suddenly becoming that person, you know the unreliable one. Guilty for putting your health first over plans and such. If you are in a relationship you will probably feel guilt for not being able to reciprocate the care you receive from your loved one simply because you are too sick. You may feel guilt over how this person’s life has changed or the extra chores/duties and worries this person now has to assume.
No one tells you about how you feel trying to find the right make up to hide your butterfly rash, if that’s important to you. No one tells you about the countless hours spent trying to get a natural look where your rash doesn’t “peek” through. Or how much money you may spend before you find just the right product to things to work.
No one tells you about how you will feel about finding new ways to accomplish things. I stopped physically going to class and started going to class online because that schedule worked better for me. I still accomplished my end goal, just the method to get there changed. Some how the success seems sweeter this way, perhaps because I have to acknowledge how things have been harder, required more of me just the reach the goal.
And no one tells you how you sort of lose yourself for a bit and feel as though lupus is you, just for a bit. No one says hey it’s okay to go down that path, but you can’t stay there, it’s not healthy.
But no one tells you about how your beloved will paint your toes for you, do the laundry, cook and clean and when there just isn’t anymore, your beloved will point out that sometimes living with someone with lupus means taking a break. And that’s not a bad thing.