How has lupus turned your life upside down?
If you tune into Facebook, the SLE Lupus Foundation asked this exact question today. In less than an hour there were more than 60 comments covering a range of stories and experiences. There was a lot of overlap – many people has similar feelings of frustration, isolation, disappointment in their limitations and just plain depression over being in so much pain all the time.
My favorite comments, however, were the ones that refused to see their lupus in just one way:
…Life doesn’t stop it just changes. I have had many times where I wanted to throw in the towel because of my sickness. It’s exhausting and scary because our disease is so unknown. However, I feel you make a situation the way it is. Instead of dwelling on the negative look to the positive for comfort in things like family and goals u can set for yourself…
Kinda grateful, that it has helped me look at life completely different. Taking time for those that mean the best to me.
I feel limited some times on the things I can do and eat. I’m always worried about making long-term plans because I don’t know what tomorrow or the future holds. Today could be a good day but you never know how you’re going to wake up the next morning. I’ve learned not to take anything for granted and to take every opportunity that’s presented to me.
Lupus is a rough path. Feeling despondent, even hopeless, at times is perfectly normal. However, feeding and nurturing a bleak and hopeless mindset (no matter how justifiable it might be) is not going to help you – or is it?
Reality Isn’t Pretty
I’ve often run across the attitude that things such as positive thinking are equivalent to lying to yourself. We’ve all heard the terms “sugar-coating” or “wearing rose-tinted glasses” – it implies choosing a warped or changed view of the world instead of what’s really there. And, there is some truth to that. I have 40% of my normal kidney function. My anemia has gotten so bad that I now need shots every 2 weeks to keep my body producing fresh, healthy blood cells. I’m scarred from my neck down to my knees from medication and my bones are trashed (I actually broke a tooth last month). I’m in various levels of pain all day, every day. And I’m torn between being dependent on government assistance to pay for my half a dozen medications (not to mention ER visits and hospital stays) and wanting to be independent and self-sufficient – as I was raised to be. It’s hard, and who could blame me for moping about it? How could anyone blame me for feeling frustrated, angry and anxious?
So saying otherwise is basically lying to yourself – right?
How You See, is What You Get
While there are studies and theories and all kinds of spiffy scientific stuff about how your attitude can influence how others treat you, your physical health, even whether or not you get that promotion at work or not, I’m going to dust off a Dr. Who quote instead:
The way I see it, every life is a pile of good things and bad things. The good things don’t always soften the bad things, but vice-versa, the bad things don’t necessarily spoil the good things and make them unimportant.
Having problems does not magically erase the good things in your life – even things we consider simple and basic, such as dry beds to sleep in and food. While the problems can feel and seem much bigger, badder and overwhelming than the good things, making the good harder to see – that does not mean that good things do not exist. After all, we don’t see the sun or the moon every second, but we know that they are there.
So it comes down to a choice – what do you choose to nurture? The pain and problems? Or do you choose to find and nurture the good things – or even create new good things to even out those columns a bit? Do you choose to start each day mourning what you think you’ve lost, or finding new ways to enjoy them?
While I have enough physical problems to fill my own personal encyclopedia, I also have fabulous friends who support me, a blog like this where I can motivate myself as well as others to try to take their lives back and have been steadily working on developing a freelance business that can supplement and support me going into the future. I have a lot going for me. That doesn’t mean I don’t have my stay-in-my-room-and-eat-a-gallon-of-ice-cream moments, but I also realize that those moments are exactly that – just moments. Instead, I choose to feed the good things more – working in the community when I can, writing and doing photography, building more skills for my business and finding new ways to live smarter, instead of harder. I call this being a “realistic optimist” – I know the problems are there and not all of them have solutions. But I also know that, in a wide, innovative, changing world full of billions of people there are very likely lots of helpful information that can make things easier. I am not defeated.
And, neither are you. Unless, of course, you choose to see yourself as defeated.
What about you, readers? Is being positive important or ignoring reality? How do you feel your mindset affects your day-to-day life? Do you like Dr. Who?
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