Someone once told me, what controls your mind will then control your body. This statement was offered to me when I was having a high lupus day. You know, one of the days where lupus flares are stronger than you are. I remeber I was struggling to get myself to my car so I could go home and this well meaning person offered me that statement.
Now I don’t know about you friends, but when I’m feeling poorly, the last thing I am is understanding or likely to edit my responses. So when this gem of a statement was offered up, along with a cheerful smile, I just shook my head at the silliness of the statement. I mean positive thoughts will not overcome the pain, swelling and exhaustion of a lupus flare. Trust me, I know. And trust me, if this concept worked, every lupus warrior, every patient with any issue would get on board with positive thoughts and end up cured.
I’m sure this was a well meaning person thought these were helpful words. How could anyone who doesn’t have lupus possibly understand that not only do I feel so much pain and exhaustion, it I also feel a sense of failure. As in I’m a failure for being sick, for having this flare. And this is also tinged with a touch of guilt at not pulling my own weight. But yes of course, if I think positive thoughts all will be better, everything will go away.
Now yes not dwelling in negative emotions for long is healthy and good. But what’s really good is being able to deal with all the emotions that come with a chronic illness. Realizing that yes soemtimes guilt, fear, failure and sadness come with the illness. But they aren’t the whole of illness. It’s complex and complicated, just like the illness itself, so please do not assume something as simple as positive thoughts will take care of it all.
A wise person once told me that you can basically risk assess anything from big decisions to the little day to day things in life. And there are times that I can see I’ve informally assessed risks, such as large purchases, packing up and heading some place new and so on. You may even say that to a degree I did the same with Beloved.
But how on earth does one risk assess chronic illness? You can’t. Not really. What you can do though, as a chronically ill person, is to assess the risk or the cost of doing something. Such as walking the dog on a hot, sunny day. The risks for me are sun exposure, over doing it, and of course not being able to keep up with the dog.
So how do I manage the risks? For sun exposure, I wear long sleeves and a hat. For added protection I slather on sun screen. I even tend to walk the dog on the shady side of the street. If I don’t do this, I risk making my lupus stronger, which means it’s more likely to cause harm.
Not being able to keep up with the dog will lead to an unhappy dog and a less than pleasant walk. So again, I have to asses how far I can go, how I feel as I go and how to convince the four-footed one it’s time to turn back. You get the picture.
This is something I do on a fairly regular basis when I look at what I may or may not do. But I’d rather not do it. There is something to be said for living in the spur of the moment. And that just doesn’t happen often when you have a chronic illness like lupus. Even if you never wanted to manage risks or costs, even if you were horrible with budgets, you still end up doing this when you have a chronic illness.
Oh sure some of you will be brave and say you’ve just thrown caution into the wind. I know. I’ve been there and I’ve done it and had the hospital stay to prove it as well. And it’s not really a stay one wants to repeat so once you’ve done that one time, you tend to wise up a bit on that.
It will come back to you he offered as he smiled at me. I rather hoped he was wrong. He thought I was talking about finding the correct word to describe what I was experiencing. I was actually talking about the ederpiencexperince so I really did not want it back.
Thankfully my doctor is a smart man. The minute he read the expression on my face, he realized the mistake and took steps to fix it. Where he can, this lovely man steps in and tries to make it better. But now and then we have misunderstandings and sometimes disappointment. Into every life a bit of rain must fall after all.
I’m okay with this. What I’m not okay with is how I can make a decision to stop a course of meds, only to have my doctor, who by the way agrees that it isn’t doing anything for me, tell me that I don’t have the right to make that decision. Nope it isn’t his ego either. It’s the governing body that says because I am a patient, regardless of my knowledge or quality of life my doctor must follow a set of rules and if I fail to get on board, he must report me as compliant. Even if treatment isn’t helping me.
And that’s where we are at now. Only I won’t lie to this man, I am ceasing my medication and if he has to report me as non-compliant, so be it. And if that means I have to struggle to find a doctor or step away from surviving and just enjoy what I have, so be it. I’m an adult, and I know what means the most to me in life.
Thankfully my doctor understands this, and so he tries to fix things while maintaining the rules as best he can. But if this truly does come back to me, I’m not sure what we will do next. So no, I don’t want it to come back to me, or anyone else. Although if it must visit upon a person, let it be the idiots making rules when they have no clue what a chronically ill patient, a lupus patient, a patient in pain who values the quality of her life most, and maybe they will learn.
Years ago I promised myself that I would never let lupus run my whole life. I would still do as much as I could, even if it meant doing it differently than I had first thought I’d accomplish things. And if it meant altering some of my dreams so be it. But I would not allow lupus to take over my life.
It was a very easy promise to make. Especially as it was made from a place of anger. It was and always has been much harder to keep that promise, but not impossible. Soemtimes it has meant taking a few steps back or a pause to find my way through the trees that make up the forest. And sometimes it has seemed a never ending struggle, but it has always been worth it.
I wish there was a basic formula that would work. One I could share and encourage other lupus warriors with. But the illness is as unique as each person who has it. No one set formula works. But over the years, I have learned compassion and compromise work wonders.
That means showing myself compassion when I’m in the midst of a struggle. It means finding a compromise that I can live with and doesn’t cause a lupus flare. It has meant accepting help, sharing a dream to allow others to let it grow. Mostly it has meant letting go of anger and hurt and getting on with living as fully as I can.
I knew this day would come. Well okay, I didn’t know for sure it would come to this. I had an idea it might happen though. It was more likely given how I had made certain decisions in the past. And I suppose I have a few specialists who could easily say that they had told me so. But they wouldn’t. They aren’t those kind of people.
But here I am, paying for decisions made or not made now. And as I look at it, seeing it coming back to me, I can’t honestly say I would change anything. The price is the price and the choice was mine. The devastating part of this is that it isn’t just me having to live with these legacy type decisions. It impacts others. Some who weren’t a part of my life when I made choices. And now I ask them to take this ride with me, a ride they have no say in.
And that ride, well it funnily enough starts with a hospital bed, medical forms and more decisions to make or not make.
Apparently my specialist doesn’t agree with my assessment of my joint pain and how to fix it. Not even close. I merely suggested removing my hips, knees and ankles, but he felt that was beyond extreme. He suggested changing my medication for joint issues. Again.
So okay my suggestion may have been a bit drastic, but I did have a plan B. Basically a nerve block for all of my nerves, which was met with with his not impressed look. Of course he isn’t the one living day-to-day with this pain. He isn’t trying to find a way to have a normal life while coping with this pain. Heck he isn’t exposed to this pe of pain and he told me as much.
Is it too much to want a doctor who gets what it’s like to live with all the fun that comes with lupus? Maybe it is. At least it seems that way these days. Instead you get doctors who suggest trying this or doing that, all the while admitting they have no clue what life is like with my illness. Because clearly their medical degree trumps all.
Here’s the thing. I’m not necessarily asking for narcotics. I’m asking for understanding, compassion, dignity and maybe having someone who is willing to meet me half way. I don’t think that’s asking for too much. And yes, I’m willing to work with some. I doubt I’m the only person wth lupus, or other chronic illnesses, with this wish. But if I am, does it make it any less? Am I any less for this wish?
I never thought id say it, but I envy Goldilocks. I didn’t realize just how amazing it is when you find something that is just right for you. It’s like pure magic, so it is.
Now Goldilocks didn’t find just one thing that suited her either. She managed to find food that suited her. A chair that was comfortable and a bed that was so right she could easily fall asleep even though she was in a stranger’s place. Ignore the small fact that either broke and entered into the domicile or at the very least trespassed into someone else’s space.
Typically I don’t give a lot of thought to Goldilocks, but after a long day of pain and intense treatment, I’ve come to realize finding a chair that is perfectly comfortable for you is pure magic. And if you can find a bed that makes you feel like you have been enveloped in a soft, comfortable cloud (once that’s warm and dry mind you), well that is beyond magic. That is something that’s truly priceless.
Today I managed to find a reclining chair that felt just right for me. And bed was basically the like falling onto a warm, welcoming, comforting cloud. Exactly perfect after a day of tough treatment and intense pain what more could a person ask for? Perhaps I need to be more like Goldilocks in finding things that are just right rather than settling for something that will make do. Maybe we all should be more like her, minus the whole break and entering and stealing of food mind you.