I get these awkward moments when someone who has heard that I have Lupus, or that I might have had a bad episode, or that I am down with something, comes over to my house and finds that I am not emaciated, fading away or dead.
I like to smile, and laugh, at myself sometimes, even when I am in pain. Sometimes I’ll be feverish, pukey and in pain all night. But if you come over in the day, I’ll smile and chat, even if I am on the floor.
The type of Lupus I suffer doesn’t include the butterfly rash or the discoid scars, although I am sensitive to sunlight. The meds I take make it really hard to control my weight, so in the ‘african’ definition, I am ‘healthy-looking’.
But I’ll probably be taking meds by the hour, and on some really bad days, those meds will include painkillers. People just have no idea how to handle that. I’ve been called anything from an over-medicator to a druggie, leave the fact alone that all these are prescription meds.
But perhaps what has been most difficult for me is losing friends because either they can’t understand why I don’t do all the stuff they can do (sometimes I just don’t want to), even though I don’t look sick at all. Like I said, I love talking, and smiling, and having fun. I miss going out and walking for hours. I miss swimming, jogging, playing, dancing… I hate that I can be all jazzed about an upcoming event and then miss out because something unexpected came up with my body. I hate being without control about how my body reacts to things.
But part of living with chronic disease is understanding and accepting that there are things you can control, and some you can’t.
I am slowly coming to accept that walking out of the door is like walking through an International airport on a trip out of the country. I have to check for my meds, water, sunscreen, sometimes even pause for a moment to consider if I have the energy to walk out of that door.
And when I am out, I have to remember when to eat, what not to eat, when to take my meds, drink water, add more sunscreen, consider that I have done enough before I go and collapse in front of people.
That can be weird for people that you consider to be your friends. Add to that the many times you have to tell them that you just can’t make it to a planned event.
I’ve watched ‘friends’ just drop out of sight, knowing that there is really nothing I can do to change how they feel. And sometimes thinking that it’s good riddance anyway.
I’m thankful for the few friends that I have who understand that I am the same Jules they knew and loved before even if I can’t do everything that I used to do.
|Many patients who suffer from the Various forms of Lupus call themselves Lupies. (Some object to the illness being put ahead of their person and so would be offended at being referred to as a Lupie)
In conversations with each other they might refer to the daily struggle of chronic illness as ‘living with the Wolf’.There have been many explanations for the name Lupus for the disease, some of it being related to the butterfly rash many Lupus patients have on their face; it can resemble the colour pattern of wolves. I have been fortunate because the only time I had the rash was before I was fully diagnosed and I had become something of a guinea pig for my doctor.
Lupus, in its many forms is not curable, but it can be managed by controlling and treating the symptoms. Some of the medication Lupies take might be handling one problem while creating another. In my case, I experience general muscle weakness and weight gain characterised by the steroid moon face (chubby cheeks). So as well as dealing with pain, severe discomfort and sometimes confusion, Lupies also have to struggle with body image issues, general self esteem issues, and sometimes acute and chronic depression.
A strong support system to offer information, encouragement and companionship is perhaps what a Lupie needs more than anything. I am fortunate that although I have lost friends, I have found support, intellectual companionship and encouragement in family and a handful of friends. I am eternally grateful for these blessings.
The wolf, he comes to stay, but even he can see the flowers are pretty and the morning dew smells sweet ~ Jules
I was chatting to a fellow Lupie the other day. She reminded me about the Spoon Theory. If you or someone you love has a chronic illness, the spoon theory might help you get your head around what you have to cope with. Check it out here.
Yes, sometimes my spoons are limited because I have a cold, a fever, a migraine, a more serious infection, or just the usual rheumatic aches. When I wake up in the morning, I find that I have 6 or 7 spoons, life, some energy, boundless imagination, creative energy… and I have to make sure that I keep my spoons, by taking my meds, doing moderate exercises, eating right, watching the sunlight… It’s part of everyday life whether I am feeling a lot worse or a lot better.
Someone told me on a Facebook chat someday, ‘Get well soon.’
I really had no idea what to say back. A friend was watching me chat just then. I looked at him when I saw the message, almost reflexively. He smiled, “Why what’s wrong with you, kid?”
Then he took up the laptop and typed, “I am well. I am always well. My body might not agree with me sometimes. But never fear!”
I am well. I might have been a little sicker yesterday. But I am well.