A.S. Face 0004 : Susan Skelly
I was diagnosed almost 11 years ago while I was finishing up my last years at university. The diagnosis came as a shock to me and left me feeling less than stellar, but I now know that I was lucky to have been diagnosed as quickly as I was – it only took about 5 months from the start of severe pain in my lower back and hips for them to figure it out – and that I was able to start treatment so quickly.
Unfortunately, treatment hasn’t gone well. I am allergic to the majority of medications used to treat the disease (two of them nearly killed me) and am now resigned to mere pain control.
Putting 11 years down is a daunting task, so I’ll take you through a good day, typical day and bad day for me.
Wake up with mild stiffness in lower back – hot shower takes care of that.
Go about my day with only a slight reminder that I am sick with something.
I have about 1 or 2 good days a month.
Wake up feeling like my spine and every joint from the nape of my neck to my knees have been battered by a pack of Lilliputians while I was sleeping.
Shower does not help. Get ready for work and mentally prepare myself to be shoved and mashed as I ride the bus and then Metro train
By noon I can feel a migraine coming on, and can’t sit still at work because of the pain. By 3 p.m. the fatigue starts to set in… and when I say fatigue I mean the feeling that you are carrying a 5-storey brick house around and that your legs are in irons.
By the time I get home I can almost forget about having the energy or strength to do anything – from cooking diner to actually spending real quality time with my daughter.
If I don’t wake up in the middle of the night from the pain, I certainly feel it when the alarm goes off. The pain is enough to make you cry or be sick. If I actually get up within an hour it will be a miracle. My spine feels like it is encased in lava, my joints are all screaming, my body is visibly swollen and my skin is sensitive to the touch of even my pajamas. Walking feels more like I am willingly shattering my joints with a sledge hammer. I likely won’t manage anything other than to lie on the floor writhing in pain for the next 2-7 hours. These bad days typically drag on into the next and the next, gradually becoming tolerably bad days until they are simply typical again.
I have about 10 of these days a month.