I swear I’m not trying to hornswoggle you!! Read on and you’ll see.
Despite not being on duty (call it the bliss of shift work in the halcyon days of the chilly season), today I have spent the day in my hibernaculum. Lately I’ve resorted to this a couple of other times especially when I’m in a hiemal mood or like today, woke up tired. For those raising an eyebrow, yes, waking up tired after a good night’s rest is possible with SLE. So I decided to stay home, light a fire, take it easy, eat healthy and slowly, read, keep warm, and enjoy my family. A siesta was in order….but only thoughts came.
I usually treat thoughts when I’m in bed to the ‘Slave New World‘ therapy which goes like this:
I face them as The enemy
I stare Inside me
I control them
Then I destroy ’em all
But not today. Today’s thought drifted in the way of the teacher, Lupus the teacher. Systemic Lupus is often referred to as the ‘great imitator’ for it mimics a lot of other diseases and conditions. It’s because of this that diagnosis if often delayed. But nobody reads about Lupus as the great teacher.
Over the years, through the smog SLE has created around me, I have managed to thrive, not on my own, but managed, just like The Beatles say. Some symptoms have been there all along whilst others have made their grand entry during the last 4-5 years. The late comers ware the most mischievous – Mr. Reynaud; Bitchy little Miss Brain Fog; Lady Lethargy, and the Devil’s children, those aching joints!
Unlike other Lupies, my bouts of lethargy are not a constant in my life. So I do almost everything I can/want to do on most days. I have learnt to go around it. If I’m at work I try (the magic word is try) to take shorter but more frequent sitting breaks. During days like today I learnt to take it easy and, most importantly, not to feel guilty for doing so.
Reynaud’s attacks are often anticipated and at times countermeasured in time. I know that when I put my cold gloves on, they shock my circulation. When I go out in the cold, that makes it worse, so I either take them to bed with me and put them on before I get out of bed or warm them well with an instant heat pack before I go out. See, I’m a good student!
The pains in the small joints from my wrists down to the fingers are a constant, present for most days of the year for the past 3-4 years or so. I learnt to ignore them and go on with my life. I learnt to ignore when the teacher thew the challenge at me. This is how Lupus is a teacher. I throws the challenge at the student and it is then up to the student to pick it up and learn how to go about it…..or just wither away in silence, alone.
Oh, nearly forgot about Brain fog…………….It’s a loathsome bitch and will be forever!